Cowgirl Up!

Moms Always Know - Happy Mother's Day!

2013-05-12T17:08:00.000-04:00

I tried to tell anyone who would listen, "So, Joey's chest x-ray showed that his pneumonia was resolving, but isn't gone."

"It's fine."

"As long as he isn't on antibiotics anymore."

"Anesthesia will talk to you on Friday."

I made phone calls. I told nurses, receptionists, doctors and surgeons.

We've been down the anesthesia interview road before. Five times before. I tend to know how it goes.

"Has he been sick recently?"

"Any hospitalizations?"

"On any medications?"

I had a feeling that having pneumonia and being hospitalized just two weeks before this 3rd eye surgery was not going to fly with anesthesia, and it didn't.

Thursday afternoon I called in to find out our surgery time for Friday morning.

They said to arrive at outpatient surgery by 6:30 am.

"Did you get the results of the chest x-ray?" I asked.

"Yes! Everything looks fine," the surgery scheduler said.

"Oh, okay. Well, I guess we will be there tomorrow."

One hour later the phone rang again.

"Hello."

"Hi, Mrs. Towell. It's Andrea from surgery again. Um, they have decided to cancel the surgery."

I knew it, I knew it, I knew it.

The conversation went on and I found out that the next available date for surgery is June 21st and I also found out that our surgeon is leaving for the international program and that will be his last day of doing surgeries. Double whammy.

I then went on to find out we would have to re-do all the pre-op appointments we have spent the past two weeks checking off all over again in June. Another chest x-ray, another 4 hour afternoon spent driving to the Clinic and getting his eyes re-measured, another visit to the pediatrician's office, another cardio clearance. We have to do it all again. And round and round the we go on the carousel.

It is for the best. I know that. Tom knows that. We are thankful that the surgery scheduler also figured this out before we all arrived by 6:30 am on Friday morning.

As most of us have known for a long, long time, moms always know.

My mom, sister and I.

As I have learned in the past 4 1/2 years, being a mom is the most fulfilling, most satisfying role I could have ever dreamed of having. I am so grateful that these two beautiful boys are ours and that they call me, mom.

My beautiful Grandma Betty.

Hope you are enjoying your mother's day as a mother, grandmother, daughter, sister, son, brother, child--- after all--- we all have a mom and we don't always have them for as long as we hope to. Hope you are each making the time you do have with your mom count.

We love you, Mom!

My mom and I circa 1976 is my awesome Holly Hobby outfit.

Pneumonia, A Hole in Our Heart and Eye Surgery #3

2013-05-08T23:15:00.001-04:00

I'm so behind on writing that it is hard to know where to start. We work so hard to help Joey gain acceptance that I feel like I should not ever complain or groan about raising these two precious boys. And yet, today I am tired. Today I am weary. Today my back hurts and I have a killer sinus infection that I let go way to long because there just wasn't any way to get in to see my doctor while I was sleeping on a mini pull-out bed in Joey's hospital room. And that is part of being a mom. A mom of any child. Not just a child who has Down syndrome. Being a mom means that while you may have your day planned to the exact second of each hour, when a baby is sick you just stop it all. You put life as you know it on hold and go into your Warrior Mama mode.

Did I mention that it is a privilege to get to do this? Honestly, as much pain and as much stress and worry being a mother causes--it is all worth it. The first night Joey was in the hospital I rocked in a chair next to his bed and I prayed and thanked God that I had the privilege of being able to be with my baby and that I have the privilege to be his mom. Joey got sick shortly after the Boston Marathon bombings and with that as well as the little ones from Newtown, Connecticut and the tragic death of Robert Ethan Saylor always in my mind-- I was grateful that I at least get to be with my babies.

So, a couple of weeks ago, Joey wasn't feeling so hot. On Monday he was grouchy and had a runny nose. No fever, a slight cough, nothing major. That night we went to a friend's house down the street for dinner. Tom worked late, so it was just me, Tommy and Joey. Right as started to dig into the yummy dinner Beth made, Joey started to hack and cough and hack and cough. Next thing I knew he was projectile vomiting all of his dinner all over me and him. Now this is when you know you have a very kind friend. Their entire family acted as though nothing was out of the ordinary as Joey vomited all over the place and her husband took their daughter and Tommy outside to dine al fresco while we mopped up the Italian dinner. Did he aspirate during his coughing fit? I don't know. It's one of the working theories we have.

The next day was supposed to be a big day at preschool. People from Akron Public Schools were coming to observe Joey in his school environment. There were papers I needed to sign. I was going to drop off the kids early, work out, then head back to the school to meet with everyone to watch Joey and then we were going to head to Springside where I teach spinning every Tuesday at noon.

At about 8:15 am Tom made the call that Joey was in no shape to go to school and I made frantic phone calls, sent texts and emails trying to cancel and find coverage for everything I had planned for that Tuesday. Joey and I hung out at home all day where he was again, not himself, but didn't seem to be totally out of sorts. That afternoon we kept his scheduled pre-operation assessment with our pediatrician who said that Joey was either in the process of getting sick or getting rid of something. He signed off on all of Joey's pre-op paperwork and there was never another vomiting incident. I thought that surely he must be in the process of getting better.

The next day he was still not 100% himself, but I thought he was on the road to recovery, so we had my friend and her two little ones over for a playdate. Joey was even grouchier after his nap, but still no fever, a runny nose and general grouchiness. The kids played and I mostly held him.

People ask us-- how did we know he had pneumonia. It's a great question. To be honest, we had no idea.

However, after his bath on Wednesday night, his hands and feet started turning dark bluish-purple and his teeth were chattering. Within minutes he started to get really, really hot and suddenly his breathing was very ragged and very, very slow. I mean, like imagine time standing still. He would take in a ragged breath and then Tom, Tommy and I were all staring at him waiting for him to exhale.

It was scary. It was horrible. We literally thought he was going to stop breathing. Tom's parents made it over to our house in record time and I had Joey bundled up in the car and I sat in the back seat praying he would not stop breathing. Why didn't we call an ambulance? I don't know. I don't think at the time we thought there was time to wait for one.

We screeched into the ER and found out that when you tell them that your child is having a hard time breathing and has a heart condition they take you very seriously and very quickly. The nurses and doctors were wonderful. I cannot remember the name of the pretty, dark haired ER nurse, but she was wonderful. She told us, "I would bet a million dollars that he has pneumonia."

Pneumonia? In April? Huh? It had never even crossed our minds that Joey might have pneumonia. They did breathing treatments, shot him full of fluids and antibiotics, did a chest x-ray that confirmed that he did indeed have pneumonia. In the midst of all this they also started him on oxygen as his O2 levels were hovering around 82.

I also found that while getting the ER room directly across from the nurse's station is very convenient (it's our second time in that room this year) it is also so they can keep a very close eye on your little one. Did I mention how scary this night was?

When the resident came in and told us they were admitting Joey I teared up, but to be honest, I also felt a huge amount of relief. A children's hospital is a very sad place at night. It's an amazing place, but also a little sad.

The first 36 hours were the worst. Joey was getting fluids and antibiotics, but was not yet talking, signing or eating or drinking on his own.

We finally got him to sit up on his own for a little bit. Since Thursday was supposed to be "purple" day at school I had Tom bring Joey's shirt I had laid out for him to wear so he would at least be with his friends and teachers that he loves so much in spirit.

While Joey slept I read the little book I just received--"What I Want You to Know" by R. A. Hudson. It's described as a book for new parents of a child with Down syndrome, but I think it is perfect for any parent of a child with Down syndrome.

Here are two of my favorite pages:

I needed those pages as a reminder of how strong Super Joe is and how much he has taught us about perseverance, love and humanity.

Slowly, but surely, our little Super Joe started to feel better. He started with graham crackers (same food that worked back in January when he was in the hospital) and a sip of chocolate milk. Then our nurse brought in some toys and I knew our little man was starting to feel like himself again!

By Friday he was much more like himself and I knew we would be going home soon, especially if Joey had anything to do with it.

But our journey at Akron Children's Hospital wasn't quite finished. When we were being admitted we were asked our religious preference and I always say Catholic and ask if there is a priest who visits. On Thursday, the Chaplain on staff visited with us and prayed with me and Joey. He apologized for not being Catholic and I told him it didn't matter! The prayers and company were incredibly comforting.

On Friday, while Tom was with us, a beautiful petite woman with dark hair came in and introduced herself as Mandy with Quinn's Crusade. She offered us Holy Communion and we prayed with her and I asked her about who Quinn was. This is when I found out what a real Warrior Mama is-- and her name is Mandy and she is Quinn and Camden's mommy. Her precious Quinn had Junctional Epidermolysis Bullosa- Herlitz in which her skin would literally break down to the touch. As it says on their website, there is no cure. This is a death sentence and most children who have EB do not live to their first birthdays.

As part of Quinn's Crusade, Mandy and other volunteers bring Holy Communion and comfort to children and families every Friday. Quinn's Crusade is raising money to help build a chapel inside the Amplantz Children's Hospital at the University of Minnesota (where little Quinn lived almost her entire short life along with her parents and brother who moved there during her treatment).

Photo of Quinn from http://www.quinnscrusade.org.

I cannot begin to explain what it meant to meet Mandy and to hear about Quinn. From the minute she was with us she said, "This is not about Quinn- I want to be here for you and your son." But we wanted to know. We wanted to hear about Quinn. We wanted to learn more. Mandy is an amazing Warrior Mama. To have the strength to do what their family does to continue giving back is incredible. The comfort that Mandy brought to us was so kind, so gentle and so incredibly selfless. I asked her after we talked if I could give her a hug and thank her.

If you would like to learn more about Quinn's Crusade or donate to their work, please visit here.

Thank you for sharing your time, love and compassion with us, Mandy. It was such an honor to get to meet you and learn about Quinn.

A Hole In Our Heart

I thought I would be able to finish updating all of Joey's latest adventures today, but there is just so much going on right now that I can't get through it all.

This Monday, after Physical Therapy and a chest X-ray that showed his pneumonia is resolving, we had a 3 hour cardiology visit with our wonderful cardiologist Dr. Khan.

The cardiology visits are intense. They are very long and the echocardiograms are tough. We had many of those while we were pregnant with Joey and many more before and after his open heart surgery.

As it stands now, his ASD repair is looking good. His mitral valve still leaks, but there is not a large amount of increased pressure, so he is looking good. His blood pressure runs high every time we are there, but we can't figure out if that might be white coat anxiety.

This time during the echo one of the things the echo tech said stood out-- he pointed out a PDA to another tech.

My ears perked up. PDA? Huh? That doesn't sound right. That hole closed long ago.

Or not. Turns out, Super Joe's PDA has re-opened. And as is often the case with our super hero, it's very rare and highly unusual. Another thing to be monitored.

Eye Surgery #3

Tuesday was spent at the Cleveland Clinic Cole Eye Institute and Joey is scheduled for a third eye surgery on Friday to determine whether or not he does have Brown syndrome in his right eye and if he does they will be placing a "spacer" in the tendon.

I have some doubts that this surgery will happen. I am worried that the anesthesiologist might pull the plug. I have tried to voice my concern. I called the clinic, I told the doctor on Tuesday and I had our pediatrician's office fax up the latest x-ray report.

We will see what happens! Either surgery will be stopped by anesthesia and we will re-do this pre-surgery dance of multiple appointments and pre-op assessments. Or- they will go in and he won't have Brown syndrome. Or- they will go in and he does have Brown syndrome and they will operate on the tendon.

Okay-- with that-- if I don't get the chance to write again-- Happy Mother's Day to all the moms and grandmas. Thank you to my mom for all of her support and love and words of wisdom. Thank you also for taking my multiple phone calls daily and for always listening to my latest worry. Love you, Mom!

Have a wonderful week and cheers to all of the Warrior Mamas in each of you!!! If you think about it-- please say a quick prayer that Joey's third eye surgery is the one that works and that he has a quick visit in and out of the hospital.

You Knew You Were Having a Downs Baby and You Didn't Terminate? How to Respond to Rude, Crude and Crazy Comments

2013-04-23T21:47:00.000-04:00

"You knew you were having a Downs baby and you didn't terminate?"

I swear, this is a direct word for word quote from a conversation I had just a few weeks ago. Sometimes things like this take me time to digest. I tell my mom about them. I tell my husband. I tell my best friends and then I kind of put it in the back of my mind for awhile until I can actually digest what transpired. This post could have easily been titled "Crazy shit people say to me without thinking", but that seemed a little extreme. And yet, that is what goes through my head when people say things like this. It's not every day. It's not every other day. It's usually about once a week. Sometimes I can go two weeks without something this crazy. . .and then I see this little boy and I completely come apart and don't understand why or how anyone could ever think such a thing, let alone say such a thing out loud to his mommy.

Dorothy and Joey hanging at the juice/snack bar.

The thing the scares me the most is the source of this comment. This came from a highly educated and worldly individual. The entire conversation was surreal. They said, "Tell me more about Down syndrome."

I said, "It occurs when an individual has an extra copy of the 21st chromosome, thus trisomy 21. The person has three copies of the 21st chromosome instead of the typical two copies most people have."

They said, "I knew that. I just wanted to hear how you said it."

Awkward pause.

They said, "Now, you knew when you were pregnant?"

Me, "Knew what?"

Those were the words I spoke, but inside my head I was struggling to remain standing up and not drop the phone. I knew in those surreal few seconds exactly where this conversation was headed and I did not shut it down because I was in shock. In my head I thought, "There is no f-ing way you are about to say what I think you might say."

They said, "You knew you were having a Downs baby and you didn't terminate?"

Me, "No. We did not terminate. Joey is sitting in the kitchen right now."

Inside my head a million thoughts and reactions were sprinting through. Thoughts like, "If you only knew how many times we were asked if we wanted to terminate. If you only knew how scared we were to have a child with a disability. If you only knew the struggles we went through when we were told at 13 weeks Joey would never survive a pregnancy and we should just end it before it was too late. If you only knew how I almost didn't have the precious baby who is sitting right here, right now because of people like you and people who scared the crap out of us about having a child who has an extra chromosome. If you only knew."

But I can't say things like that in moments like this one. I have to be unfaltering in my strength. I have to be strong in the face of ignorance. I have to stand strong and try to continue to show the world that one extra chromosome is absolutely nothing to be afraid of.

The craziest part of this story is that this happened not only once, but twice. TWICE! Within weeks! The second person who asked me almost the identical question was a mom of a child with a disability. You could have knocked me over with a feather. We met at a wine bar and started talking about kids and when she found out about Joey and how we knew before he was born that he has Down syndrome she literally said, "You knew he had Down syndrome and you didn't terminate?"

Is it a Down syndrome thing? Is this what the general public thinks about Down syndrome? I am trying to figure it out and I am having a really hard time. How do you respond to a comment like this?

The Incredible Tommy and Super Joe at the hospital checking Joey's thyroid, CBC, RBC, WBC.

The thing is-- and there is a thing. The thing is that having a child with specialized needs comes with stuff. It just does. There is stuff. Some days the stuff isn't really that much. Some days the stuff is too much. Parents of children with special needs don't want you to feel sorry for us. We don't want you to feel sorry for our children. We would like people to know that there is a lot of "stuff" going on. For some of us it is multiple doctor and therapy appointments. For others it is medical equipment and specialized support gear. For some it is serious illnesses and prescriptions to manage and keep track of. For others it is trying to figure out our child's schooling or job. There is stuff. For parents of kids with Down syndrome there is a variety of "stuff" at any time. For almost 50% of us there are congenital heart defects to worry about. For at least half of that 50% there is heart surgery and a lifetime of care making sure our children don't ever get too sick or put too much stress on their hearts.

Super Joe leaves nothing behind. 110% every day!

Then there is the issue of cognitive, language and verbal delays. This is stuff. Stuff we think about constantly in the back of our minds even as we try to navigate the regular every day stuff that everyone has. There is always the leukemia and dementia and Alzheimer's stuff that also haunts the back of our minds. We try to live one day at a time and appreciate every single second without letting that stuff fill our minds and hearts with worry, but it is almost always there in the back of our minds-- some of the stuff.

There is the concern of whether or not our kids will have friends. Will they fall in love? Will they live on their own, in a group home, in an apartment, with friends, with family, with us? Will our kids have a job, enjoy their job and feel fulfilled. This is the stuff we all worry about with all of our children regardless of special needs. However, for those of us who are parents of kids with extra needs-- this is more of the stuff we think about. That we worry about despite our most positive attitudes and most sunny outlooks. See, we have to be strong. We have to be strong for our other children. For our families. For our spouses. We have to be the one who says it will all be okay no matter what happens. We will manage the stuff.

I read the following article just a few days after my insane "termination" encounters, but I literally printed it off and put it in my purse. I have memorized a few favorites such as, "excuse me", "why do you want to know?" and "why would you say that?". What I love about this amazing list from one of my new favorite blogs, is that these can be used in all sorts of uncomfortable or awkward situations!

One of my dear friends has beautiful children who have amazing and beautiful names and she is constantly getting remarks about their names-- this is perfect for that. Nosy strangers? Pick one of these! Intrusive comments? This is your list! This is from the Friendship Circle Blog: Special Needs Resources for Parents & Educators.

How to Respond to Unhelpful Comments: Top 10 Comeback Lines For Individuals With Special Needs

It happens sooner or later to just about everyone who lives with a disability: someone will say something nosy, rude or truly offensive.

It may help to have a response prepared for that day. Having that comeback line at the tip of the tongue gives a little edge of confidence that actually prevents people from saying rude things in the first place. Here are ten simple responses that work in real life situations.

10. “Excuse me?” Miss Manners says that this is always the most polite response. It causes the person with the original comment to pause and re-think his words. If he repeats the rude comment, simply repeat in a sweet voice, “Excuse me?” Keep going with it until the light bulb switches on.

9. “I’m sorry that my (or my child’s) permanent disability has caused you a temporary inconvenience.” One of my buddies uses this line, and it is a conversation-ender.

8. “Thank you for your concern.” With a smile.

7. Silence. With a smile. And walk away.

6. “Why do you want to know?” Sometimes it is necessary to answer a question with a question, especially when you are cornered by a personal question on a delicate topic.

5. ”Why would you say that?” Force them to think about what they just said.

4. “Nothing is wrong with her. Is something wrong with you?” Ask with genuine concern, without sarcasm. Often the person is asking because of a family member with a similar condition.

3. “Yes, he can talk. He can also hear and understand everything you say about him.” For just a little guilt trip.

2. “I respectfully disagree.”

1. “I have (or my child has) an equal right to be here.” This is the line I’ve been saving all these years – but I’ve never had to use it in any of the many, many awkward public situations I’ve found myself. My belief in equal rights is what makes me stand taller.

What is your standard response to unhelpful comments or questions?

We Take Care of Our Own, #JUSTICEFORETHAN

2013-04-11T14:30:00.001-04:00

TWITTER RALLY TONIGHT! #JUSTICEFORETHAN

We Take Care of Our Own- Bruce Springsteen

I've been knocking on the door that holds the throne

I've been looking for the map that leads me home

I've been stumbling on good hearts turned to stone

The road of good intentions has gone dry as bone

We take care of our own

Where're the eyes, the eyes with the will to see

Where's the hearts that run over with mercy

Where's the love that has not forsaken me

Where's the work that'll set my hands, my soul free

Where's the spirit to reign rain over me

Where's the promise, from sea to shining sea

We take care of our own

What happened? Why are we uniting?

We unite because we care. We unite because we will not rest until individuals with Down syndrome are valued and respected as capable human beings who deserve the same exact civil and human rights as everyone else. We unite for #justiceforethan and his family. We unite because we all deeply fear that this could have been our child. We unite as mothers, fathers, sisters, brothers, friends and teachers of someone who has Down syndrome.

As I wrote about in a post called, "Jesus Called Out for His Father, Robert Ethan Saylor Cried Out for His Mother," Robert Saylor was shackled by 3 sets of handcuffs and put face down on the floor of a movie theater in Maryland because he did not want to leave the theater. Robert Saylor also has Down syndrome. He died that day. The people who killed him will not face any charges. To read a full article on what happened, visit here. This is why we are uniting for #justiceforethan.

How to Rally!

Tonight the Down syndrome community unites for a Twitter Rally: Thursday, April 11th:

6pm PST

7pm MST

8pm CST

9pm EST

Cowgirl Up! @DS_CowgirlUp will be there tweeting away.

Have your Twitter Handle sheet ready along with your TweetSheet. When the clock strikes in your timezone, log in to Twitter and start tweeting!

Need a Twitter tutorial? Here is an excellent one. Need inspiration on what to tweet? Visit With a Little Moxie for these ideas by Melissa Stolz:

“Join us in our push for #justiceforethan”
“Love someone with Down syndrome? Join us in our push for #justiceforethan”
“Disability rights are human rights. #justiceforethan”
“Death ruled homicide, cops walk free. We need #justiceforethan”
“Down syndrome isn’t a cause of death. #justiceforethan"

Here are additional ideas from Cowgirl Up:

Civil rights are for everyone. #justiceforethan
Disability rights are civil rights. #justiceforethan
3 pairs of handcuffs killed an unarmed, disabled man. #justiceforethan
Zero Dark Thirty was the time of death for an unarmed, disabled man. #justiceforethan
We take care of our own. #justiceforethan

TWITTER HANDLES

Sharon Stone: @Sharonstone_
Jennifer Lawrence: @ImJenLawrence
Diane Sawyer: @DianeSawyer
Lawrence O’Donnell: @Lawrence
Rachel Maddow: @Maddow
Chris Matthews: @hardball_chris
Sean Hannity: @hannityshow

Bill O’Reilly: @oreillyfactor
Greta VanSusteren: @gretawire
Sarah Palin: @SarahPalinUSA
Rick Santorum: @RickSantorum
Rep McMorris: @cathymcmorris
Rep VanHollen: @ChrisVanHollen
Rep Sessions: @PeteSessions
Anderson Cooper: @andersoncooper or @AC360
CNN: @cnn

Lauren Potter: @TheLaurenPotter
Jane Lynch: @janemarielynch
Jamie Foxx: @jamjamiefoxx
Albert Pujols: @PujolsFive

NDSC: @NDSC
NDSS: @NDSS
Jon Stewart: @itsmejonstewart
Stephen Colbert: @StephenAtHome

The President: @whitehouse
FBI Press: @FBIPressOffice
DOJ: @TheJusticeDept

Oprah: @oprah
Martha Beck: @MarthaBeck
Zero Dark Thirty: @zerodarkthirty / #zerodarkthirty
Katie Couric: @katiecouric
Ellen: @theellenshow
Nicholas Kristof: @NickKristof
Human Rights Watch: @hrw
Global Down Syndrome Foundation: @GDSFoundation
Bruce Springsteen: @springsteen

Kathryn Bigelow: @KBiggyBigs (does not appear to be active though)

Do You Remember When You Left Me? When Siblings Have Surgery.

2013-04-03T22:52:00.001-04:00

It was an innocent conversation on the way to church on Easter Sunday. My mom, Tommy, Joey and I were in one car while my dad and Tom were in the other car. My mom casually mentioned, "This drive reminds me of going with you to the hospital." And it does. It's the same way we went for ultrasound after ultrasound as well as the births of both boys. It's funny when you visit a place what memories are stirred up by the different landmarks.

As I am starting to learn more and more, Tommy was listening much more closely to this conversation than we realized. Lately we are noticing that he hears everything. He comments on some things, but definitely hears everything.

From the backseat pops up a little voice, "Mommy, I want to go to the hospital for Joey's next surgery. I want to go to all of his surgeries. I want to go to every one of them." I sucked in a deep breath.

"Do you remember when you and Daddy left me for a long time when Joey had surgery?" he asks without a trace of guilt or anger or reproach in his voice. He is just speaking the facts.

Do I remember? Oh, do I remember? It was one of the hardest things I have ever done in my entire life (other than fire-fighting training in Officer Indoctrination School--that was pretty hard and scary--I have a LOT of respect for firefighters). I remember that almost two years ago we had to figure out how we were going to manage an out of state heart surgery for Joey and what we were going to do with our 2 1/2-year-old (Tommy) while we were up at the University of Michigan C.S. Mott Heart Center.

We went back and forth. Back and forth. Take him. Leave him at home. We didn't know what to do. We knew that it would be intense and would need a lot of concentration and energy to take care of Joey and be there for him pre-surgery and post-surgery. We knew that a hospital isn't the best place to have a 2 1/2-year-old. We didn't know how long we would be there. We didn't know how well Joey would do. We honestly didn't really know anything. I read every blog I could find and tried to be as "prepared" as possible, but at the end of the day, we just didn't know.

So I respond, "Honey, I remember we had to leave you at home when Joey had his heart surgery, but that was because little kids were not allowed in the hospital and there were a lot of wires and machines." It was the best I could come up with on the fly.

"But, Mom. I'm a big kid now. And I won't touch anything. I promise," Tommy says from his car seat looking earnestly into the rear view mirror trying to catch my eye and trying to get me to see his side.

I think back to the 9 days we were apart. One of the hardest times our family has ever been through. Leaving one child behind at home to be with our other child while he had heart surgery in a different city and state. We had never been gone that long from Tommy- ever. The days were long, the nights were long, the process was long. It was beyond exhausting. Sleep-deprived, sunshine deprived, sanity deprived we went outside once in those 9 days. I vowed that Joey would always have one of us by his side so he wouldn't be scared.

We knew Tommy would be okay. We ultimately decided that it would be best to have him stay in his familiar environment at home instead of cooped up in a hotel. We knew he and Lolo would do great. Luckily we had Lolo, Miss Kelly, Miss Shannon and other friends and family who all hung out with Tommy and distracted him while Mommy, Daddy and Joey were gone. The minute we checked into the "Med Inn" we knew we had made the right decision. Joey's pre-op day consisted of nine hours of appointments and an almost cancellation of his surgery because his blood work.

It was brutally hard not to be together during those 9 days. I had not realized how much I rely on little Tommy to bring sunshine and levity to our lives. To provide our comic relief and joy when things get too serious (like Joey's most recent blood work-- we go back again in 2 weeks to have it re-checked).

He has never really mentioned that time before. It is a sign of so much. A sign of how much more he understands. A sign that Joey's "adventures" affect Tommy as much as they affect us. As sign that we need to be mindful and continue to respect his role and his need to understand what is going on in our little family.

He wasn't going to let the conversation go until he had my word that he could go to all of Joey's surgeries.

"Tommy. Of course you can come with us. But, it might be very early in the morning and it might be very boring while we sit there."

"I don't care, Mom. I want to go. I want to go to all of them. I don't want you to leave me again," he replied.

Hot tears stinging my eyes I couldn't look over at my mom because I knew I would lose it, so I just looked in the rear view mirror and nodded, "Ok, Tommy. You can go."

I try to do this with therapy and different appointments, but it seems that the time has come to bring Tommy to one of Joey's surgeries. His next surgery will be another eye surgery. His third in ten months. Not nearly as invasive as his heart surgery and also out-patient. Should be a good opportunity to bring Tommy along and help satisfy his curiosity.

We have been trying to protect him for so long and will continue to try to do so, but I also want him to know that we hear him and we respect his desire to be a part of it. We respect their love for each other. Their brotherhood. Their bond.

Jesus Cried Out For His Father, Robert Ethan Saylor Cried Out For His Mother -- Please Help!

2013-03-28T22:25:00.000-04:00

"My God, my God, why have You forsaken Me?"- Matthew 27:45-46

Good Friday is the Friday before Easter Sunday when Christians commemorate the crucifixion of Jesus Christ and his death at Calvary. As a Catholic child it was hard to reconcile this violent story of Jesus Christ being betrayed by his followers and ultimately sacrificing his life for the sins of all mankind with a weekend celebration of pastel dresses and chocolate bunnies.

As a parent, it is now even more difficult to think of your child calling out for you in his final moment of need.

In the story of the Passion of Christ as told by Matthew 27:45-46, Jesus cried out for his father, "My God, my God, why have You forsaken Me?" and then he hung his head on the cross and died.

Robert Ethan Saylor Cried Out For His Mother

Robert Ethan Saylor in this undated family photo.

And Now The Down Syndrome Community Cries Out For Justice

First and foremost, our family grieves and offers our most sincere condolences to the family of Robert Ethan Saylor.

Imagine for a moment you have a child. A child who was born with an extra 21st chromosome. A child who might not always be able to communicate in the most clear and exact manner. Imagine that your child has grown up and is in a stressful situation. A situation that he may not be emotionally equipped to diffuse or manage. Imagine that because your child has Down syndrome, strangers are "afraid to get involved" in this stressful situation. Imagine that you sent your child to a movie with an aid--a helper--and then imagine that your child never comes home.

Why, you ask? Why doesn't he come home? He had just watched a very intense and emotional movie, Zero Dark Thirty and wanted to watch it again. Have you seen the movie? It's incredibly intense. It took my husband and I at least two hours afterwards to finish talking about it. Imagine your child's aide goes to get the car and in the meantime, not one, not two, but three undercover officers somehow end up restraining your child on the floor on his stomach and handcuffing him. Imagine that your child goes into respiratory distress while being held down on his stomach by three officers and then dies as a result of asphyxia. Yes-- dies. Read that word again, your child dies. On the floor of a movie theater. Over a $12.00 movie ticket.

Was your child armed? No. Did your child have a gun? No. Did your child have a knife? No. Your child wanted to watch a movie again and for the price of a movie ticket, he dies. At the hands of three officers. Your beautiful 26-year-old son dies.

Imagine that your child's last words, as heard by witnesses, were calling out for you, "Mommy, help me."

As one mother in the DS community writes -- your child dies as a result of death by Down syndrome.

What does that mean, you ask? It means that because your child has Down syndrome he was subjected to an incredible and unbelievable violation of his human rights.

Where is the outcry, you ask? Where are the riots and the protests? Perhaps if your child was the victim of a religious, racial, sexual or hate crime such an outcry might be heard. Might not be ignored. Might be taken more seriously. Might be considered more worthy of justice and action.

But instead, your child has a developmental disability. Your child has Down syndrome. As Robert Ethan Saylor's death shows us, your child's life is not as valuable or as precious as a "typical" person's life because your child has a genetic variation that he was born with that somehow makes him both scary and child-like all at once. How is that even possible?

Why was such a non-violent, non-dangerous situation turned into a death sentence? Why didn't cooler heads prevail? Why didn't a single person stand up for Robert? Why didn't one person say, "This was a very intense movie. It was very violent. It was difficult to grasp. Why don't we wait until his mother is here?" Why? Why, God? Why was Robert Ethan Saylor forsaken?

Why did a grand jury rule that there was no crime committed when the Chief Medical Examiner's Office of Baltimore ruled Saylor's death homicide by asphyxia?

Robert Ethan Saylor's death is a case of police brutality. Excessive force and unnecessary cruelty. This is a civil rights matter.

National Down Syndrome Congress Demands

Independent Investigation Robert Ethan Saylor's Death

The National Down Syndrome Congress along with the International Down Syndrome Coalition is pushing for answers and for an independent investigation of Robert Ethan Saylor's death. In a statement released on March 27, 2013 the NDSC states:

The National Down Syndrome Congress (NDSC) believes that Robert Ethan Saylor’s civil rights were violated when he died after being restrained by three off-duty Frederick County, MD, Sheriff’s deputies. Although the coroner ruled Saylor’s death a homicide, a grand jury declined to indict the deputies.

“We cannot comprehend the series of poor decisions that were made leading to Ethan’s death,” noted David Tolleson, Executive Director of NDSC. “If you used any other adjective to describe him – such as his race, religion, gender or sexual orientation – the streets would be filled with people seeking justice. It appears that individuals at the theatre acted as if this was an emergency situation, or that Ethan presented an imminent threat, when in fact more time was both needed and available to assess the situation.”

Tolleson adds, “By all reports, the officers involved are good men who did not intend for Ethan to die. However, if an otherwise good person with good intentions were to kill someone with their car – perhaps because of neglected maintenance or driving under the influence – they would still be held accountable.”

According to NDSC representatives, the Saylor case is filled with poor decisions and missed opportunities.

The officers should have been trained on how to interact with individuals with Down syndrome and other developmental disabilities.
Recognizing that Ethan had Down syndrome, the officers should have showed more patience.
The officers Tshould have worked with Ethan’s support person on strategies to diffuse the situation, rather than handcuffing him.
Ethan’s mother was on the way to the theatre, called by his support person. Officers should have waited for her to arrive to help resolve the situation.
Other patrons nearby said they were afraid to get involved. They shouldn’t have been.

Tolleson noted that NDSC believes an independent investigation of what happened is necessary. “Beyond the need for accountability, we need to know exactly what occurred so that we can work with law enforcement to ensure that it never happens again.”

The NDSC believes that everyone, including people with developmental disabilities, have every right to attend events and activities in their community. More awareness is needed about Down syndrome to ensure that all people feel welcome, included and safe. “Ethan’s death is a tragedy and shines a spotlight on the need for awareness about people with Down syndrome in our communities, particularly among first responders.”

ACTION NEEDED!

Undated photo of Robert Ethan Saylor

Please visit Change.org and sign the petition asking for an independent investigation of Robert Ethan Saylor's death. Click here.

For more action ideas, please visit Down Syndrome Uprising.

Please tweet.

Please share on Facebook.

Please help us to make those who killed Robert Ethan Saylor be held responsible and not be given a free pass because Robert has Down syndrome.

Please help us shout loud and clear that just because our children have Down syndrome does NOT make them any less valuable or less human than anyone else.

Please help and sign the petition: http://www.change.org/petitions/justice-for-robert-saylor

Please do not forsake Robert Ethan Saylor like those who stood by and watched him die. You have the opportunity to make a difference.

World Down Syndrome Day 2013 - Celebrating Inclusion, Acceptance and Education

2013-03-21T08:00:00.000-04:00

Happy 2013 World Down Syndrome Day!!! Today is also the 2nd birthday of Cowgirl Up! My husband reminded me last night that I started this blog two years ago. It is also my goddaughter's birthday and my brother's birthday. March 21 is a big day!

This year I was asked to write a guest post for the Summit DD blog in honor of today. It is my first guest post and it was such an honor to be asked to write about Joey and Down syndrome. I hope you enjoy it and I hope you have a wonderful World Down Syndrome Day!

World Down Syndrome Day 2013 - Celebrating Inclusion, Acceptance and Education

My name is Jennifer Towell and I am an attorney, blogger, writer, advocate and the proud mom of two young boys, Thomas (4 1/2) and Joseph (2 1/2). Our youngest son, Joey, was born with an extra 21st chromosome, which is also called Down syndrome. When we were pregnant with Joey we were told he would never survive because of fetal hydrops, a septated cystic hygroma and a congenital heart defect. To our great joy and surprise, Joey not only survived, but has thrived!

All photos by Nat at Love What I Do Photography.

When he was barely two months old we first met with our Early Intervention team through Help Me Grow. My husband and I were both working and I never thought we would qualify for the services that Joey received through Early Intervention and Help Me Grow. Fortunately, we were wrong. It was not us who qualified for services- it was Joey. For the past 2 1/2 years he has received support and advocacy through his Early Intervention team. It seemed so strange at first to not pay anyone for these services, but as my mom told me, we do pay, through our taxes and through levy support. For that we are very grateful to our community. Through open heart surgery, eye surgeries and other procedures, our EI team has provided us with guidance, encouragement and support.

This past year, we have worked hand in hand with Jennifer at the Community Partnership for Inclusion, which has helped provide Joey with the opportunity to attend the same preschool as his brother Tommy. We never dreamed in a million years that Joey would be able to attend a "typical" preschool at age 2. You see, at this time, Joey does not walk, stand or talk. He communicates with sign language and a few words, but because of CPI he is able attend It's All About Kids Preschool. Joey will stand, he will walk and he will talk someday and getting to attend preschool is what will help him achieve these and many other goals.

Today is one of his school days. He attends on Tuesdays and Thursdays and today he and his school will be celebrating World Down Syndrome Day. Today we celebrate and advocate for the rights, inclusion and well-being of individuals with Down syndrome. The date of 3-21 is significant in that individuals with Down syndrome have 3 copies of the 21st chromosome. In other words, they have an extra chromosome. Most people have 46 chromosomes, but individuals with Down syndrome have 47. I like to say, "Joey has 47 chromosomes, how many do you have?"

Not everyone understands what Down syndrome is. When our son, Joey was first diagnosed with Down syndrome we were told he has a "genetic abnormality." We prefer to call it a natural genetic variation. Here are just a few facts about Down syndrome:

Down syndrome is a genetic variation in which the individual has 47 chromosomes instead of 46.
There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
Individuals with Down syndrome have an extra copy of the 21^st chromosome (the smallest chromosome) and thus, 3:21 is the day World Down Syndrome Day is celebrated.
Down syndrome occurs in people of all races and economic levels.
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, leukemia, and thyroid conditions. Many of these conditions are now more treatable, so most people with Down syndrome lead healthy lives.
Some of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
Life expectancy for people with Down syndrome has increased dramatically in recent decades—from 12 in 1912, to 25 in 1983 to 60 today.
People with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
Most importantly, people with Down syndrome are more like you and I than they are different.

What do I say to someone who is pregnant with a baby who has Down syndrome?

"Congratulations!" is the perfect thing to say to a family who is having a baby with Down syndrome. "Have you got the nursery ready?" is another option. What you should never say is, "I'm sorry." Please don't say that. We aren't sorry, we hope you don't feel sorry for us or for our child.

What do I say to someone who gives birth to a baby who has Down syndrome?

See above. "Congratulations!" is again the perfect response. Anything you would say to any other new parent is perfect. Things like, "What is the baby's name?" or "How much did she weigh?" or "How is he sleeping?" are all wonderful questions. Again, comments like "I'm sorry" or "How severe is the Down syndrome?" should be off-limits. Babies are a reason to celebrate! The last thing a new mom or dad wants to hear about their new bundle of joy is "I'm sorry."

What do I say to the parent on the playground who has a child with Down syndrome?

Please say anything you would say to start a conversation with any other parent. But, please, please don't stare. Please don't look our little one's helmets, glasses, orthotics or other equipment and just stare or break eye contact. Parents of children with Down syndrome are just like anyone else. We have great days. We have tough days. We love our kids. Some days our kids drive us crazy.

What do I say to a child with Down syndrome?

What would you say to any other 1, 2, 3, 4 or 5-year old? Say that. Ask the child his favorite color. Ask her what her favorite book is. Tell a funny story about yourself or your child. Basically-- just treat us and our kids like anyone else. That is all we ask. We ask for an opportunity to be a "typical" part of your church, your synagogue, your school, your neighborhood-- your life. The most important any of us can provide someone with a disability is one word-- opportunity. Opportunity to be a friend, a student, an employee. Opportunity to show you how we can shine and how we can live up to and beyond expectations.

Aren't people with Down syndrome happy all the time?

No! Absolutely not! This is a myth. Individuals with Down syndrome experience all emotions just like you and I do. They feel happy, sad, frustrated and angry like everyone else. Someone once told me that I was so lucky because Joey would never experience loneliness or despair. I told them he absolutely would experience those emotions. I think there is a common misunderstanding that individuals with developmental disabilities aren't intelligent enough or aware enough to feel sad. This is not true at all. Individuals with Down syndrome and other developmental disabilities may take a little longer to respond because of speech difficulties, but they have feelings like all of us and there are times when they experience joy and there are times when they experience sadness.

What do I talk to a teenager or an adult with Down syndrome about?

This is an area that I am not as familiar with, but I strongly believe in the same approach as above. While individuals with Down syndrome may have hearing or speaking difficulties, they DO understand your words and your actions. They may take longer to respond to a question, but they understand the spirit of your approach.

Below is a wonderful video called "Just Like You" made with the Down Syndrome Guild of Greater Kansas City featuring three teenagers and their friends openly discussing the special needs of peers with Down syndrome. I sincerely hope you will watch this video as the impact of what these individuals have to say about themselves tells far more than I could ever hope to express because unlike my view from the outside as a mom, these three teens have Down syndrome.

What is it like to have a child with Down syndrome?

Having Joey as a son has provided our family with more love and more joy than we could have ever imagined. He is so much like his older brother that on a daily basis my husband and I say to each other, "Do you remember when Tommy used to do that?" Joey's very existence has made our family more aware of the world around us and much more aware of the differences in every individual. Joey has made us more compassionate, more patient and more accepting. My heart feels like it will burst with pride on a daily basis as Joey makes progress and learns new skills. His life has been the best gift our family has ever received.

Happy World Down Syndrome Day!

As we celebrate this 21st day of the 3rd month, I ask you to consider how you might make a difference in our community for an individual with a developmental disability. Not just Down syndrome, but all disabilities. Do you have a place for a person like Joey in your school? In your classroom? In your workplace? In your church? In your world? In your heart?

We hope so.

Just Like You - Getting Ready for World Down Syndrome Day

2013-03-20T13:09:00.002-04:00

Tomorrow is World Down Syndrome Day 2013!!!

I have published this video once before, but I want to share it again because it is just so incredible! It was made with the Down Syndrome Guild of Greater Kansas City and features three teens with Down syndrome and their friends openly discussing both facts and myths about Down syndrome.

What I like most about it is hearing the kids with Down syndrome explain in their own words how the r-word affects them, what their friends mean to them and their individual experiences in school.

"Just Like You"

To get ready for the big day we packaged smiley faced cookies, letters about Down syndrome and 21 M&M's in honor of Trisomy 21 to share with all of Joey and Tommy's classmates at school and for our therapists, teachers and friends. We are usually a Scarlett and Grey (Ohio State) or Big Red (University of Nebraska) family, but on World Down Syndrome Day we turn to the official colors of yellow and blue to celebrate Down syndrome awareness.

It's nothing big, but just a little way to help spread awareness and to also thank the people who support Joey all year long. We hope you have a wonderful week as well!!!

Brown Syndrome - Rhymes With Down Syndrome

2013-03-14T21:30:00.000-04:00

Oh, Joey. Why can't I do any of this for you? Why can't I put myself in your shoes and be the one who has to go through all of your appointments and procedures and surgeries? Why? I don't ever feel sorry for myself, but I can't lie, there are many days when I do feel sad and I do feel so very sorry you have to do all of this.

But you are tough. You are resilient. You keep trying to pull up and stand on your own, but you aren't quite able to do it, yet, but you never stop trying. You keep forging ahead. And so that is what we will do. We will follow your lead. Your example. Your incredible spirit.

This was Tommy's favorite spot and now I'm using it to get you to stand so we can cook together. You seem to like it and you seem to be able to stand for about 20 minutes on your own in here. Great job, Super Joe!

Today we spent about four and a half hours taking you and Tommy up to the Cleveland Clinic, seeing your eye surgeon, scheduling your next surgery and then finally making it home. We were supposed to go down to Akron Children's Hospital to get your blood drawn for your six month check of your thyroid, white blood count and red blood count, but I just couldn't get us down there. Four-thirty pm seemed just too late to make it to a second hospital in one day and we were all so very tired out from the long afternoon. We will try to make it in Monday morning before your physical therapy. You won't cry when they draw your blood. You never do. You amaze me. You are so, so tough and we are so, so proud of you.

Your sweet teacher sent this to me today. You adore her and you love school so, so much!

Here is the good news, Super Joe. No more eye patching. Yes! Apparently it doesn't even work with our newest diagnosis.

Here is the bad news, Super Joe. Apparently you have "Brown syndrome" and I cannot help but find it a little bit humorous. I mean seriously. Brown syndrome? Rhymes with Down syndrome. Apparently it is also called "Superior Oblique Tendon Sheath syndrome." I guess we will stick with Brown syndrome (named after Dr. Harold W. Brown) for now. What is wild is that we kept thinking that there was something wrong with your left eye, but it seems that perhaps it is your right eye that is causing the problems.

Here is an example of what it looks like:

Brown syndrome is "a mechanical problem in which the superior oblique muscle/tendon (on the outside of the eyeball) does not move freely. This makes looking up and in with the affected eye difficult. Often the higher eye is mistakenly presumed to be the abnormal eye but the lower eye is affected. Brown syndrome causes the lower eye to have trouble looking upward in side gaze. Essentially the affected eye is “tethered” or held down by the tight superior oblique tendon."

In your case, Joey, the doctor is concerned with your binocular vision. Your left eye extremely overcompensates and he believes your right eye is being tethered down as described above. We worry because that beautiful little left eye seems to go flying off into your brain and you seem to have a hard time looking up or to the left.

Lucky for our family, your vision specialist from the Cleveland Sight Center joined us and not only helped us get through the appointment, but she really made sure we knew what questions we wanted answered and she was this calming fairy Godmother presence throughout the appointment. Thank you, Brenda-- we know how valuable your time is.

The fun part of today was watching you and your brother make the most of our long journey. As usual, you both offered much comic relief.

Okay, Super Joe. Just a little bit more bad news. Today we scheduled your third eye surgery. It's tentatively scheduled for Friday, May 10 so we can fit in some extra appointments to see the other doctor and to see if there is any improvement at all. Eye surgery isn't anywhere near the ballpark of your open heart surgery, but along with it comes at least four extra appointments including a pre-op, a visit to the pediatrician to clear you, a cardio clearance, the actual surgery and the post-op surgery. Each of these appointments tend to eat up at least half a day at a time. But it's okay. It's more time we get together. Just another part of our adventure!

I'm not afraid of another eye surgery, but I am concerned. Each eye surgery you have had seems to have brought about a new set of problems. Your doctor told us the most surgeries he has ever had to perform on one patient was four. We are hopeful you aren't out to beat his record.

This August you will be three and by then you will have averaged two surgeries a year for your life. That's a lot of anesthesia for any one little person. One open heart surgery, one ear surgery, one auditory brain stem and 3 eye surgeries.

Another adorable photo from his teacher at It's All About Kids preschool.

Super Joe, you are going to take this next step in stride. You will rock the surgery and the recovery and every aspect of it. We are going to get your eyes in a good place because before long you will be running after your brother and we need to make sure you have every advantage possible.

We love you, Super Joe. In our eyes, we don't even see Down syndrome. We just see an amazing little boy who is full of love. We won't see the Brown syndrome either. We will put it in a bucket we try to manage--but not focus on--that has included the following mysterious sounding diagnoses of nystagmus, ascites, torticollis, plagiocephaly, apraxia, atrial septal defect, mitral valve leak, cystic hygroma, strabismus, optical torticollis and other things we can barely pronounce. Just a bump in the road, my love. A bump in the road.

World Down Syndrome Day: One Week Away!!! March 21, 2013

Only 1 week until March 21, 2013-- World Down Syndrome Day!!! Will you be celebrating? Will you be wearing your Joey's All Stars shirt? Will you consider making a donation to The Up Side of Downs and Stand Up For Downs to help individuals in Northeast Ohio with Down syndrome?

There is a beautiful blog posting over at the Summit DD site that tells the story of Joey's search for a preschool.

Next Thursday I will be doing a guest post on their site and cannot wait!

Any advice you would like me to share with the world about raising a child who has Down syndrome? Just shoot me an email or leave a comment.

Just Because I Have Down Syndrome Doesn't Mean I Can't Hear or Understand You

2013-03-06T22:56:00.000-05:00

Today is March 6, 2013 the Spread the Word to End the R-Word day! What is the R-Word, you ask? You've probably heard it before, it is the word "retard" which also takes on other various forms such as "tard" or "retarded". It is often used without thought in everyday lexicon by individuals seeking to seem self-deprecating as in, "Oh, I am so retarded." I am a child of the 80's/90's. I used to use the word without a second thought. It was a slang word. A term I never really thought about. A word I never realized might have consequences. A word I did not have the good sense to understand might hurt someone else's feelings or make them feel small or even invisible.

Oh. And then I grew up. I had a son with Down syndrome. I learned more about disabilities and fighting to be heard than I had ever imagined. I learned that this one word has an incredible amount of power, connotations, associations and variations (ever heard of a "fucktard"-- one of the most disgusting words I have ever heard) that are all negative. There is no longer a single positive connotation with the word "retard" in our society. We have twisted it, given it a life and released it in all of its hate and ignorance.

What those who want so desperately to hang on to using this word (hello movies like "Killing Them Softly", tv shows like "Veep" and political commentators like Ann Coulter) do not understand is that while it may seem like just a word, it is actually a mind set. It is a culture of intolerance and dismissal that removes value from people's lives. People like Joey.

Why the R-Word Hurts Super Joe

Joey’s is not considered “verbal” just yet. He isn’t exactly “non-verbal”, but he is definitely behind “typical” progress when it comes to language and speaking skills. Now this is certainly not to say that because he is non-verbal that he doesn’t communicate. In fact, unlike many of us, Joey is learning two languages. He is learning and using American Sign Language as well as English.

What I want people to know on this national day of trying to spread awareness and trying to put an end to that horrible R-word, is that while Joey and others with disabilities might not speak as fast as you or might not speak at all, they hear. And even if they have hearing loss like Joey does or even if they are deaf, they hear. They communicate. They understand. We talk about this often in his speech therapy. Joey may not speak yet, but he does communicate and communication is so much more than just words coming out of our mouths.

We communicate with our eyes. We communicate with our gestures. We communicate with our bodies in the way we might turn away from someone who we view as not as valuable. Ending the R-word is just one step toward helping individuals with disabilities find a voice and be heard in ways other than just language. It will require a definitive shift-- a shift in our attitudes and how we perceive people. A shift in how we assign value to individuals.

I was at a breakfast today for an incredible organization called Child Guidance and Family Solutions here in Akron. One of the speakers was a young man in high school who moved to America from Mexico. He does not have Down syndrome or any other developmental disability, but when he moved to Akron he was bullied at school. What he said today spoke so loudly to me for this very cause. He said that while he didn't necessarily understand what the bullies were saying (because they said it in English and at the time he was still learning to speak English), he knew what they meant. He did not know the exact words, but their eyes, their bodies and their attitudes directly expressed what they wanted to get across.

I honestly think people use the R-word for 3 reasons.

1. It is a bad habit. They have no ill-will, but do not give it a second thought.

2. They don’t think it hurts anyone.

3. They don’t think the people who have been classified as “retarded” due to developmental, physical or mental delays understand what the word means.

For our family, the word hurts for different reasons. The biggest reason it hurts is that I have two sons who I want to protect from the word for different reasons. For Tommy, I don’t want him to feel the pain I do when I hear the word used and I don’t want him to ever think that his brother is “retarded”. For Joey, who has faced enough in his short life for any of us, I don’t ever want him to feel like less of a person or less of a human because of this derogatory word. The fact is that someday very soon Joey will completely understand what the word “retarded” means and he will know when someone is using it that they are slamming individuals with disabilities.

As a mom I have had many, many situations in which the R-word comes up. Often I try to casually say, “Ohhhh—we don’t like that word very much!” Some days I don’t have the fortitude or courage or strength to say anything at all. Some days if a friend or an acquaintance says it I just say a little prayer in my heart because my stomach hurts so bad and is stuck somewhere in my throat and I just can’t squeeze the words out because I don’t want them to feel bad or awkward. It’s tough. It’s hard. I’m not going to lie. I’m not going to sugarcoat it. I strive to be an advocate and an educator, but there are times where I simply don’t have the fortitude and I’m embarrassed to say this, but it’s true.

Back two or three Occupational Therapists ago (we seem to go through them like water—it’s like that old U2 song, “But I Still Haven’t Found What I’m Looking For”), we had a situation in which our OT said during a therapy session that her bathtub was just “so retarded”. I waited until the other therapist left the room (it was a double therapy day) and I said to her, “I just wanted to say something or else I would spend the rest of the day really upset. A couple of minutes ago you used the word ‘retarded’ and I really don’t like that word and I especially don’t like it used around Joey.”

Her response was, “No, I didn’t.” That’s when things got really awkward. I said, “Yes, you did. I know you didn’t mean it towards him, but I want therapy to be a safe environment where those kinds of words aren’t used in front of Joey.” Her response was still denial and then it became a little condescending in that she started saying that Joey was a really smart little boy and that he keep getting smarter. I tried to move past the encounter and we had about 2 more incredibly awkward therapy sessions and then we decided to find a new OT.

We spent about 6 months with another OT and then in January started seeing another OT (our 6^th? 7^th? I honestly can’t keep track anymore). The new OT had made some comments, you know, the usual “Downs kids” kind of generalizations that had set off some red flags. I was trying to be open-minded and willing to see past some vernacular differences until our last session. I don’t know if she was tired or having a bad day, but the session went horribly. She was not directing Joey in any manner. She was acting very dismissive and negative. Then she said to me, Joey’s mom, in front of Joey who will be 3 in August, “You know it’s cute when these Downs kids are stubborn when there are 2 or 3 years old, but it’s not so cute when these Downs kids are this stubborn at 8 or 9 years old.”

Um, okay.

I can’t and don’t expect every person Joey works with or sees in the medical field to use inclusive and person first language every single time we see them. In a perfect world they would, but I honestly have learned to accept that not everyone will every single time. However, what I insist on and will continue to demand is that Joey’s service providers, doctors, nurses and therapists (most of which do an AMAZING job!!!) speak in front of him as if he can understand every single word that comes out of their mouths. Because here’s the deal, did Joey understand exactly what his former OT said about him? No. Did he sense her attitude towards him, her body language and her spirit—you bet he did. At this point, as his speech therapist has told us, he understands much more of what we say than we think he can.

As John Franklin Stephens, a Special Olympics athlete and Global Messenger who has Down syndrome wrote for Parents.com:

People still ask me about what is so wrong with using the R-word. I can only say what it means to people like me when we hear it. It means that the rest of you are excluding us from the group we want to be part of. That’s the hardest thing--the loneliness. We process information slower than you do, so even keeping up in a normal conversation is a constant battle for us. We are aware when you stop and just look at us while we are trying to catch up. We are aware when you just say “uh-huh,” and then move on, talking to each other. You mean no harm, but you have no idea how alone we can feel, even when we are with you.

Our son can’t yet stick up for himself or tell others that he doesn't like being marginalized, but here is one of the best videos I have seen that shares three teenagers with Down syndrome and how the R-word makes them feel.

Just Like You

Do I believe in freedom of speech? Absolutely. I also believe in human decency and that how we treat others who have disabilities or who are different from us tells far more about us than anything else we do in our lives.

I hope you will take the pledge to Spread the Word to End the Word.

I hope you will consider what your words and actions mean to individuals like Joey.

I hope you will consider not using the R-word and I hope you won’t use it in front of my boys or your children.

Some excellent posts on the power of the R-word:

Love that Max

Parents.com

The Chronicles of Ellie Bellie Bear

Five Words People Don’t Get About The Word “Retard”

Give Us Your Word: A Blog Hop

If You Could Take Down Syndrome Away From Your Child's Life, Would You?

2013-03-04T21:00:00.001-05:00

A couple of weeks ago I wrote about watching a couple on The Today Show say, "We're safe, the baby does not have Down syndrome" when they received their prenatal results. This particular segment and blog posting sparked much more conversation than I ever imagined it would.

One of the topics that arose as a result of that post was the following question, "If you could take Down syndrome away from your child's life, would you?" Does your child have Down syndrome? A different disability? Would you take it away if you could?

All photos by Nat.

It is a complicated and loaded question that is not easily answered. Mostly because Down syndrome is a different type of diagnosis. It is not a disease. Our children do not suffer from Down syndrome (as is often reported in news articles). Instead it is a condition. A natural, genetic variation that occurs in all races, all socioeconomic categories and in both females and males.

If you were to ask if you could take away your child's cancer, I imagine close to 100% of parents would say yes without hesitation. But Down syndrome is not cancer. Leukemia occurs anywhere from 10 to 20 times more often in children with Down syndrome, but Down syndrome, in and of itself, is not cancer.

I struggle with this question for multiple reasons. As someone who is more pragmatic than philosophical, I have a hard time even going there or even thinking about a world in which I could take Down syndrome away from Joey's life. While I can't imagine this, there are such options in our world. The one option that has been reported to occur to 50-90% of babies who are diagnosed prenatally with Down syndrome is abortion. In more simple terms, a prenatal diagnosis of Down syndrome is a death sentence to at least 50% of those babies who, like Joey, happen to have an extra chromosome.

My response to whether or not I would take Down syndrome away from Joey's life is....never. I would never do it. I couldn't. Down syndrome is part of who Joey is. Having Down syndrome is how God made Joey. Selfishly-- very selfishly-- Joey having Down syndrome has enriched my life in ways I could have not ever imagined. Joey's life- exactly as it is- has given me a purpose in life. His extra chromosome has helped me become a better, more educated, more aware, more compassionate, more understanding person. I am not a perfect person by any means and am constantly struggling to improve and better myself, but Joey's life has made me feel like my life has more meaning and more purpose than it has ever had before.

I would like to take Joey's heart and eye issues away if given the opportunity. But again- if I did that, would he still be the amazing little boy we know and love? Maybe not. I would like for him to struggle less to learn to talk and walk, but again, that might change his incredible little personality, so ultimately, my answer is, "No." I would not take Down syndrome away from Joey's life.

If I could protect him from heartache, ridicule, pain and struggle I think I would. I think I would do the same for Tommy if given the chance, but then again, those are the very things that make our lives more meaningful and help build our character and our ability to persevere.

I now understand and know that ultimately, I have an incredible fear of playing God. It is the very reason that when we were offered to terminate Joey's life during our pregnancy right up until week 24 (the legal limit for an abortion in Ohio) I just could not do it. I feared my ability to raise a child with unknown challenges, but I personally fear taking or changing a life in a way that I wasn't meant to far more than anything. Both of our children are 100 times more incredible than I could have ever imagined a child being.

Other parents and grandparents feelings.

I asked other people to write an tell whether they would take away their child's Down syndrome if they could and here is what they said. Thank you to everyone who shared their very personal thoughts about this topic.

B wrote of her son, "I would not. Down syndrome is who he is and it is a part of him as much as it is a part of our family. I wouldn't take away my daughter's beautiful brown eyes, or my other daughter's determination; all things they were born with. I happen to think we won the lottery with him having an extra chromosome. I can tell you that he brightens every room he steps in, every wave he gives a stranger and the hugs he shares with people that need it the most (the same people you or I would just walk right past without a second thought."

T wrote, What would be the point? "It is the way it is. She does have Down syndrome. Always will. Why not just celebrate it and celebrate her."

L wrote about his son, "I don't know if we'd take away his Down syndrome or not. That's a thought provoking question. On one hand, nobody wants their child to have the (understatement) hard life that the syndrome brings, even in its varying degrees. On the other hand, the people I have met in my life with severely limiting medical conditions are some of the most inspiring people I've ever met, and add something to the world that so-called "able-bodies" people don't (or won't).

M writes of her son that she loves him "exactly the way he is" and that he is "everything I could have wished for." She also writes, "At the same time, I can recognize the feelings of worry that every parent has. These worries are different for kids with special needs. I did not say more, just different." As with many of the other responses, M says she is torn between her love for her son who is perfect to her exactly as he is and her wish to protect him from a sometimes "un-accepting and cruel world" to make his life a bit easier and less challenging, but without that extra chromosome- her son just wouldn't be the same person he is.

One grandparent wrote that their grandchild with Down syndrome has made their entire family more compassionate and better. For this particular grandparent, they would take away Down syndrome for their grandchild's sake, but not their own. The greater health issues and struggles with learning skills and tasks are some areas they wish their grandchild did not have to struggle with. This grandparent and the family love their grandchild unconditionally, but they do wish that the grandchild did not have so many struggles along the way.

The grandparent seemed to summarize what many of the parents felt. That they would not want to change their child, but would like to take away the health issues.

For me, the health issues have been a very real part of Down syndrome since long before Joey was born. With all of his health issues in utero and then his health issues since birth, there have been many a night when I have pleaded with God to let me go through the struggle, surgery or procedure instead of Joey having to do it again.

Then there are my very real fears of what his life may be like as a teenager and then an adult. I fear isolation and loneliness in Joey's life and I pray that God allows him to have a full and meaningful life in which he achieves his dreams and has meaningful friendships and romantic relationships as well.

The following excerpt from an editorial in The New York Times yesterday by Lawrence Downes illustrates one of my worries for Joey. In the editorial, Downes quotes John Franklin Stephens, a man from Virginia who has Down syndrome and serves as a global messenger for the Special Olympics:

“The hardest thing about having an intellectual disability is the loneliness,” he once wrote in The Denver Post. “We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, ‘unh huh,’ and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.”

“So, what’s wrong with ‘retard’?,” he asked. “I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the ‘in’ group. We are someone that is not your kind.”

I would not take Down syndrome away from Joey's life. I hope that by writing and advocating I can help educate the world and help make it a world where individuals with Down syndrome and other disabilities are not excluded from the group because they are different. I don't want to change Joey. I want to change the world.

Another topic I am contemplating and worrying over. Anyone have any ideas? Any answers? Any input?

Do your other children know that your child has Down syndrome? How did you tell them? When did you tell them?

World Down Syndrome Day is 3/21/13!!!

Happy Valentine's Day! How Betty Jean Taught Me the Meaning of Love

2013-02-13T22:38:00.001-05:00

My maternal grandmother, Betty Jean, was born on Valentine's Day. It was always seemed so fitting because she truly had the biggest heart of almost anyone I know. She was the kind of woman who would literally give you the shirt off her back.

Grandma raised five children in the 60's as a single, divorced working mother. She was a beautician by trade, but as we all know, being a hairdresser really means you are a confidante, a psychologist, a friend and more.

All the awesome Valentine's photos are by Nat. Visit her website for more information.
By the way- all these photos were from a 10-15 minute mini session!!! I can't believe what she captured!!!

Going to Grandma's house meant she had everyone's favorite food and spent the entire visit taking you places that she had been thinking about for weeks and months. Grandma loved adventures and I remember walking with her, my mom and my aunt all over the tiny Nebraska town we lived in during summer evenings. There were family trips and adventures to Colorado, Fort Robinson, South Dakota, Hot Springs, Mount Rushmore and when we moved from Nebraska to Florida there were more adventures including one wild trip to the Orange Bowl with Grandma Betty in tow.

A visit to our tiny (but mighty!) hometown of Alliance, Nebraska meant that Grandma bought a dozen or so Bizmarcks (a delicious German danish that is filled with sweet cream and has nuts sprinkled over the top) for all of us, the tiny boxes of sugar-coated cereal that we were only allowed to eat on holidays (or visits to Grandma) and platters of cold cuts and cheese filling the fridge. If you ever even mentioned that something was your favorite it was bound to show up at Grandma's house during the next visit. Grandma made visiting the Dairy Queen next door to her house, the Pizza Hut, Pamida, Hatch's Drugstore, the Library or the tiny Frontier Museum seem like the most incredible adventure in the world.

I remember her coming to Ohio from Nebraska for my college graduation and my law school graduation. She was so proud of all of her grandchildren and having grown up so far away from our extended family I was thrilled to get to share these achievements with her.

The last time I saw her alive was at my cousin's wedding in Grand Island, Nebraska. Less than five months later she would pass away. I was at Officer Indoctrination School (OIS) in Newport, Rhode Island learning how to be an Ensign in the United States Navy when I learned that Grandma was in Hospice. I received special permission from the Commanding Officer (CO) of OIS to leave early for the Thanksgiving holiday to fly back to Nebraska for her funeral. It was one of the loneliest trips I would ever make. Flying from Providence to Chicago, Illinois. Getting on a flight from Chicago to Denver. Getting on the tiny crop duster that shakes and quivers the entire way from Denver to Alliance, Nebraska.

I will never forget it. I thought I would see her one last time. When we arrived at the funeral mass I looked for her coffin up at the altar. I was so confused. Where was Grandma? I needed to see her and say good-bye. In all of the commotion of everyone coming to town and in grief no one had told me that Grandma had been cremated. I almost passed out when I realized the small urn at the front of the church was all that was left. Now that I'm a little older I understand. Grandma was claustrophobic. She didn't like being stuck in small places. I get it. I'm the same way. When I go I have no desire to buried six feet under. Spread me over the Nebraska plains on the Freimuth Farm when I am gone, but please do not bury me under ground. This bird needs to fly!

Once Grandma passed I was blessed to move close to her brother, Uncle Dick and his wife, Aunt Doris. Uncle Dick was a retired Chief Petty Officer in the Navy and when Grandma passed away in November of 2000, it was Uncle Dick and Aunt Doris that came in her place for my Officer Indoctrination School graduation. It was Uncle Dick and Aunt Doris who took me under their wings and came and checked on me in Washington, D.C. every time they made a visit in for his doctor's appointments at the National Naval Medical Center in Bethesda. For almost four years they lived closer to me than any other family. It was like an extension of Grandma lived on because she and Uncle Dick shared the same sparkling blue eyes and the same sharp sense of humor.

Throughout our life Grandma and I had two things in common that I still enjoy almost every day. Reading and exercise. Grandma was an avid walker and when the Nebraska winters were too cold she jumped on her mini trampoline in her "condo". We shared a love for reading and when she was alive she would send me every John Grisham novel as it was released. One of our family stories is that as a little girl she loved to read so much that she hid under her covers with a candle and nearly set the family house on fire trying to stay up late reading. To this day when I am awake and reading way too late into the night I think of her and all the books she read and shared with me.

During the last five years or so of her life she kept a notebook of all the books she read. It's a simple spiral bound drugstore notebook, but it is so much to me as I see the curve of her handwriting and look to find inspiration in what books I might want to read. It is one of my most favorite and treasured items she left me.

What I will always remember most about Grandma Betty was her heart. Her huge heart and her compassion. I remember delivering groceries with her to some of her clients when I was just a tiny, little girl. Checking in on the elderly ladies whose hair she fixed every week in her beauty shop.

I remember when she visited us in Florida how one Sunday we had to drive all the way to Cocoa Beach to buy t-shirts for two of her best friends. They were a couple who had been together for almost 20 years.

Their names were Ron and Jon and she insisted that they needed t-shirts from The Ron Jon Surf Shop. Today we could have just ordered those shirts online, but back then it was the cause for an adventure. Looking back now, I realize that even in a small town in the panhandle of Nebraska, my Grandma was already teaching me lessons about acceptance and understanding.

The last ten to fifteen years of my Grandma's life I remember her constant companion being a man named, Jim. Jim had been a jeweler all his life. Jim was differently-abled and he used an awesome electronic wheelchair that we would hop on the back of and ride from her beauty shop down to his apartment on when we visited him. I remember Grandma pushing to get Jim a van that was wheelchair-accessible so that he could go to my cousin's baseballs games, out to dinner and get around town. I don't know if Jim was my Grandma's boyfriend. Boyfriend, best friend--it didn't matter. What I do know is that she clearly loved him and she showed him her love by helping him to have a full life in his later years.

Thinking of Valentine's Day to me is thinking about Grandma. It's thinking about the love she showed others and how she made each of us feel important and special. I look back and I remember how much she loved my dad. She loved her son-in-law like he was her own son. It's funny how much that means now as an adult. Her love for my dad just helped cement the family bonds together. The love and respect she had for my dad is now evident in the love and respect my parents have for Tom. They love him and respect him and treat him as one of their own and I can tell that my children even recognize it. The power of love is pretty incredible. It doesn't cost a dime, but it can last forever.

I am pretty sure that having a child who is "differently-abled" has been that much easier for me because I grew up watching my Grandma have a best friend who was also differently-abled and it was never a big deal. I can honestly say we never thought twice about Jim being in a wheelchair. He was just Jim.

I wish she was here to meet my boys and I wish I could share more adventures with her, but what I am grateful for is the time I spent with her. The cards we sent to each other. The trips we took. The phone calls we shared. The books we shared. I'm most grateful for her example of love and acceptance and for teaching me how to love, which is ironic because she didn't say "I love you" very often. I didn't used to understand that, but now I know she didn't say it very often because she was too busy living it and showing it.

Happy Valentine's Day! Who are you going to show your love to today?

HE DID IT!!! JOEY SAID MAMA!!! VIDEO EVIDENCE!!!

2013-02-11T20:51:00.000-05:00

All photos by Nat.

Two years, five months and seven days. That is how long I have been anticipating and awaiting the day when Joey would look at me and say, "Mama." He said "Dada" almost a year ago and it has been his go-to word. After his first few months of saying "Dada" we noticed he had started to associate it with when Tom would walk into a room and "Dada" has slowly morphed into "Ah Dada" (ie: Hi, Dada). His second word was, fittingly in a car family, "car."

It was one of those silly milestones that I have agonized over, put false deadlines on (maybe he will say mama for my birthday, Christmas, his birthday and on and on) and pushed for. We saw a performer who's son has Down syndrome and she talked about how her son did not say Mama until he was four years old. My heart broke for her and my heart broke because never in a million years did I think Joey would not be able to say Mama for that long. It can be so difficult and so frustrating when you start comparing, asking, wondering and putting arbitrary age ranges on milestones such as walking, talking and potty training. As my mom and grandma used to say, it's kind of like trying to teach a pig to sing. It annoys the pig and frustrates you. Joey-- I'm not saying you are a pig or a trainable barnyard animal- I'm just trying to explain what certain acts of futility feel like and I have started to learn when I just need to give you some room to breath and some room to do it on your own. It goes back to what Miss Donna first taught me-- the OWL principal. Observe. Watch. Listen. It works for more than speech therapy--it's a lesson for every day of life.

Instead of false deadlines, Joey has taught us to set high expectations and then let him show us when he is ready for each incredible milestone. He has taught us that providing opportunities (practice, therapy, playing, playing and more playing) is the most important thing we can do for him. Like a little seed who needs sunshine and water, he is growing and blooming in his own way and in his own time. When we let him do just that, it is incredible what he accomplishes.

What was that you just said, Joey????

That being said, being non-verbal is a very real issue for many individuals who have Down syndrome. We decided early on that speech therapy would be one of our number one priorities for Joey with the belief that if we can help him learn how to communicate and how to express himself he will have that many more opportunities in life. As a mom, I want him to be able to communicate clearly for safety reasons as well. I want him to have a voice and to be heard and to be able to express himself as well as defend himself if he ever needs.

Just about six weeks ago Joey's amazing speech therapist and I made a decision to no longer ask Joey to say Mama. She believed that he was completely capable, but it had now become a power struggle and he was receiving a LOT of attention from me constantly asking him to say it. It was a tough habit to break, but after a week or so I quit asking him to say Mama.

And just like that, once it was on Joey's terms, came that glorious word that sounded like all of the angels in Heaven singing at once....Mama.

Teasing mommy...

I held on to it for about two weeks. I thought it was a fluke. A "happy accident" that we talk about at speech therapy. But then Tommy heard it. And then Tom heard it. And then one day I walked in the kitchen and he said it again while looking into my soul, "Mama." I still don't completely believe it when I hear him say it. I am so very grateful that his verbal skills are growing and that he is motivated to talk.

We think he has started to say, "Ba" (for bath), "I did it", "mine", "go go", "quack", "drink", "cracker", "more", "ha" (for hot) and "all done." We have also been doing sign language with Joey since he was born. Tommy and I both know about 50-100 signs and we try to use them throughout the day with Joey. Joey also knows quite a few signs and he uses many of them with the words he says. We have used almost all of the Baby Signing Times DVDs with some success and both boys really enjoy watching the DVDs.

There is also an awesome FREE app called "ASL Dictionary Lite", which has videos for a ton of every day words. This one is exceptionally helpful when are out and I'm trying to find the sign for a word we need to learn. This is how we learned the sign for "school" and for "teacher" for Joey to learn.

For those moms who haven't gotten to this "Mama" milestone yet, it will come. One mom told me before it happened that the reason he didn't say mama yet was because you don't need a word for the person who is your everything in life. My thought was, "Yes you do. That word is Mama."

At last!!!

It's funny. Because of Joey I have learned to celebrate and drink in this milestones as major celebrations, but I have also learned that there are many moms out there who haven't gotten to this stage yet, and he has helped me to remember that each child has his or her own journey and timeline.

With that in mind we celebrate Joey finding his voice and I pray that your children are achieving their own milestones in their own time and meaning. We just read about a friend's daughter on Facebook who took her first steps! So much to celebrate in our world of incredible children who are differently-abled as well as in our every day lives.

Does your family have something fun you are celebrating right now? If you look, I bet there is something to celebrate.

Also- I'm working on a post examining the question...

If you could take away Down syndrome from your child's life, would you?

I have received some wonderful thoughts on this. If you would like to express your thoughts, please email here. All names will be kept confidential.

Happy Monday!

The Rest of the Story: An Article Examining All Sides of The Today Show Segment About Prenatal Testing

2013-02-06T21:16:00.003-05:00

Maureen Wallace is an excellent writer over at Sheknows.com. Her article "Parents Criticize Word Choice" examines various view points regarding The Today Show segment I wrote about here. She has a number of excellent articles about being the parent of a child with special needs.

About the test:
The MaterniT21 PLUS test, developed by Sequenom CMM, is a laboratory-developed test that analyzes circulating cell-free DNA extracted from the expecting mother’s blood sample. The test detects the relative amount of 21, 18, 13 and Y chromosomal material, which means the test can detect Trisomy 21, 18 and 13.

Nationwide, some parents of children withDown syndrome (Ds; Trisomy 21) reacted passionately to the segment, criticizing host Matt Lauer’s choice of words by referring to the negative test result as “good news.”
Parents also accused Dr. Nancy Snyderman, chief medical editor for NBC News and a Todayshow regular, of portraying life as a parent of a child with Ds as something to fear.

Snyderman also used the term, “Down’s babies.” More on that later.

While my post discusses the pain I experienced listening to Matt Lauer and a couple discuss the "good news" that their MaterniT-21 Plus test showed their baby does not have Down syndrome, Maureen's article describes her personal opinion that she would take her son Charlie's Down syndrome away if she could and how she was not offended by the celebration of the baby not having Down syndrome. And her reasons are completely legitimate. She argues that without Down syndrome her child would be much less likely to develop childhood leukemia (a major fear deep in the hearts of every parent who has a child with DS), would be much less likely to have cognitive challenges or as many physical challenges. As Maureen points out, that extra chromosome, can present extra challenges that not every parent would necessarily celebrate.

Sunday night I had an email from her asking me about my post and posing some questions to me. While we do not share the same response to the segment, what was incredible was getting to virtually meet another mom in the Down syndrome club and learn about some wonderful new resources and to above all else-- stick together. That was one of our many emails back and forth. We agreed to disagree on some things, but to stick together in this world we navigate. If you are in the T21 club, then you know what the parents are like. The parents are incredible-- at least all the ones I have met and know both in person and online. Are there exceptions to this rule? Of course, but overall the parents, the advocacy efforts, the desire to help every child become their best is absolutely overwhelmingly incredible.

Below are the questions from Maureen and my responses in her article:

How has the response been to your post?

Blog goes viral

After writing her passionate response, Towell’s blog went viral. While a typical day draws between 75 and 100 visits to her blog, her post about the Today show drew 10,000 visits, and responses began to pour in.

“I have heard from parents, grandparents and even individuals with autism and Down syndrome," she says. "Most of the responses have been very positive and most people felt that the segment was insensitive and did not provide accurate or complete information about the testing.

Do you wish you'd said anything differently?

“[The fact that] a person has Down syndrome or any disability does not take away from their ability to understand what people are saying about them,” Towell points out.

Instead of Matt Lauer beginning the story with, “Let’s get to the good news,” Towell says, “It would have been so easy for [him] to say to the family, ‘What were the results of your testing?’”

What would you like to say to the Today Show about future segments on issues affecting families of children with Down syndrome?

Advice for Today show

What’s next? Blogger and mom Jennifer Towell offers some specific suggestions for future news coverage on the Today show:

Provide an accurate and complete report that shows both sides of the issue.
Consult with parents of children with Down syndrome as well as older individuals with Down syndrome.
Show people with Down syndrome the same respect you would any other individual.
Recognize that individuals with Down syndrome have feelings. They are television viewers, consumers and valued members of families and societies.

Dr. Skotko agrees. “Matt Lauer could have struck a more neutral tone by just asking, ‘The results came back negative for Down syndrome. How does this make you feel?’”

“Medical professionals practice hard to strike a neutral tone, but medicine is as much of an art, as it is a science,” Dr. Skotko points out. “So, too, is journalism.”

I hope you enjoy Maureen's thorough look at this segment on The Today Show. I have enjoyed hearing various points of view and opinions about how the prenatal test was handled and I hope that perhaps it has helped some families to think about these types of questions and issues and to search their hearts long before they decide they might like to become parents.

For me it has also raised the following question that I have thought about before, but have never truly examined....If you could take away Down syndrome from your child's life, would you?

Does your child have Down syndrome? A different disability? Would you take that away if you could? It's a loaded and complicated question that I will be wrestling with so that I can write about it. In the meantime, if you have a thought on that topic, please leave a comment or send me an email-- I would love to hear your stories and opinions.

In the meantime, my sister has been tweeting, emailing and calling up The Today Show like nobody's business asking them to PLEASE get a group of moms, family members and individuals with Down syndrome to do as Paul Harvey used to say, tell the rest of the story.

Will she be successful? I don't know, but I do hope that at some point The Today Show takes a look at how they covered this prenatal test and how they can do a better job in the future.

Mr. February and Is It Wrong To Publicly Celebrate a Prenatal Diagnosis That Your Child Does Not Have Down Syndrome?

2013-02-01T15:42:00.000-05:00

Happy February! Today is a day of happiness and celebration as we celebrate Super Joe being Mr. February in the 2013 Summit County Developmental Disabilities Calendar! His good buddies, Casey and Conner (Miracle Men) shared the Mr. January title and we loved seeing their handsome faces all during January. This month we are excited to see Super Joe with his beloved preschool teacher at It's All About Kids. If you would like to request a calendar, send an email here.

We have been working with Summit DD since Joey was first born. As you may notice in the picture, Joey is in his stander, which is an amazing contraption that is helping him build core strength so that someday (soon we hope!) he will be able to stand on his own and eventually walk on his own! Thanks to the Summit DD, we are able to borrow this incredibly expensive piece of equipment for no charge. Thanks to their Community Project for Inclusion, we have been able to send Joey to the same preschool his older brother Tommy goes to and CPI provides equipment, support and training for the staff so that Joey can participate in all the every day activities that go on at preschool.

What has been such a blessing has been all of the teachers, aides, students and parents at It's All About Kids who have made Joey a complete and whole part of the community at school. Having a child who does not really talk and does walk or stand at age 2, I never in my wildest dreams thought that he would be able to not only go to preschool, but to also enjoy it! Every Tuesday and Thursday he goes to school I leave him there with a huge smile on my face and he is thrilled to get to play with his friends. Thank you Summit DD! Thank you It's All About Kids! Thank you peers and parents!!! Super Joe says thank you also...

Is It Wrong To Publicly Celebrate a Prenatal Diagnosis That Your Child Does Not Have Down Syndrome?

I wrote a blog earlier this week about a segment on The Today Show that I found very difficult to stomach and that I found to be a very poor piece of "journalism" and "reporting." In the segment, a couple does the new MaterniT-21 Plus testing to find out if their child has one of 3 trisomy conditions (Down syndrome (Trisomy 21), Edwards syndrome (Trisomy 18) or Patau syndrome (Trisomy 13)).

During the segment the parents say that if their baby has Down syndrome they will continue the pregnancy, but that they want to know so they can be better prepared. They do not say what they will do if the baby had Trisomy 18 or 13.

About halfway into the segment (you can view the entire segment here) Matt Lauer says to the couple, "Let's get right to the good news."

The mom goes on to say, "We are safe. The baby does not have Down syndrome."

I personally found the segment to be very disrespectful, misleading, and incomplete reporting. It would have been just as easy for Matt Lauer to say, "What were the results of your test?" instead of getting to the "good news." Plus, "safe" from Down syndrome? What does that even mean? I get it that they want a healthy child, but am so disappointed in the presentation of the segment.

I had no idea that my thoughts on this particular segment would raise so many views and varying opinions-- but I'm so glad it did.

Again, I personally think it is in incredibly poor taste to celebrate that your prenatal test results show that your baby does not have Down syndrome, Edwards syndrome or Patau syndrome. If you want to "celebrate" such news in private, that is an entirely different matter.

I find it wrong for multiple reasons. I cannot bear the disrespect some people show individuals with disabilities. Do they think people with disabilities do not have feelings? Do they think that they cannot hear or understand what they are saying? For an excellent post on this, please go here to read about a women with Down syndrome who accidentally called into a radio show.

What about kids, teenagers and adults with Down syndrome who DO understand what Matt Lauer is saying and hear it? What about those people who hear on the morning news that a couple is celebrating that their baby does not have Down syndrome? What message does this send to them? That is where I think The Today Show really dropped the ball. I found the entire segment to be rife with errors and inaccuracies and in overall bad taste.

This all being said--- I also 100% understand that every single parent wants their children to be healthy. No parent wants their child to experience any kind of discrimination, health issue, teasing or anything painful. I agree! I understand! I do not fault these parents on The Today Show for wanting their child to be healthy at all. What I do fault is The Today Show's decision to run this segment in the way that they did.

I also don't want any parents who had a prenatal diagnosis that their child has Down syndrome to feel bad for being worried, for mourning the diagnosis and for being sad about this diagnosis.

We had a very, very early prenatal diagnosis and it almost tore our family apart. It was hard. It sucked. At times I wanted to die. I wanted to be in a car crash and not have to worry about having a baby who society would not value. I wanted to have a "normal" pregnancy and not have to worry about hearing the R-word in movies and on television. I saw other pregnant women and I envied their joy and their anticipation. I wanted to be excited to be having a baby instead of constantly worrying about what the rest of our life would look like and how Joey would fit into it.

At that time I just wanted the Down syndrome to go away. Why did I feel this way? It was fear. It was fear that my precious baby might be teased, ridiculed and might not have a full life. It was fear that Down syndrome would be more than I could ever possibly handle. It was so much fear that it completely gripped my whole world and sent me into weekly counseling sessions during the pregnancy to try and hold it all together. It was, other than living in D.C. and being in the Navy during 9/11, one of the most trying and stressful and difficult times in my life. What makes it more difficult is the guilt I had then and the guilt I still experience that I was so afraid about this amazing little boy who I would now go to the ends of the Earth for.

It took meeting people, talking to other parents (you know who you are-- and you were all and still are all AMAZING and I still turn to you almost weekly for advice), reading other blogs, reading books like Gifts and educating myself to help me finally accept that despite all my worries, Down syndrome was not anything to be scared of and that I needed to be grateful to be having a child no matter what diagnosis he might have.

Baby Joey

I come to this from a place of initially being afraid to have a child with Down syndrome to becoming an advocate for Down syndrome. For trying to help make sure people with Down syndrome are seen as individuals who have so much to offer our world and our society.

What our experience taught me is that if you want to become a parent you need to go into it with eyes wide open that there are NO GUARANTEES. To me that means that there are no guarantees about health, aptitude, success, failure-- anything. As one mom wrote to me- a true tragedy is losing a child. Down syndrome is not a tragedy. That is my opinion as well and it took going through my own time of grieving and learning to understand that. I feel blessed in some ways that our prenatal diagnosis gave me the chance to be angry and to grieve before Joey came into the world. I remember almost the exact moment that I no longer cared about the Down syndrome and that all I wanted was Joey to be here. I was reading a post by a mom who's daughter, Gabby, had Down syndrome and who had a heart condition (like Joey), but who died. I read about that mom's grief and her pain and it finally clicked-- the Down syndrome just didn't matter anymore. All that mattered was meeting Joey and holding him in my arms.

What I hope to do is to help other moms and families who may receive a prenatal diagnosis that their child has Down syndrome to see just how amazing our kids are. I also hope to keep spreading awareness and trying to encourage acceptance and respect of all individuals just as God made them. (Visit here for a wonderful organization dedicated to doing just that).

His first smile post heart surgery.

For all of these reasons, I understand parents wanting their children to be healthy. I also understand that many people would be glad to find out their baby does not have Down syndrome. But I also hope to continue to spread the word as one mom put it, "I never knew how bad I wanted a child with Down syndrome until I had one." For me, Down syndrome has given me a life I never knew I could live. A life full of challenges-- lots of challenges, but a life that is so full, so rewarding and so incredible all because of Joey's existence.

Baby Joey.

I have said it before and I will say it again-- Dearest Joey-- I am so sorry I ever even thought I might not want you just as God made you. I'm sorry I didn't have the faith the entire time to know that however God made you would be exactly as you should be. I am sorry I ever grieved even for a minute any single thing about you. I love you completely as you are and I am forever grateful for the opportunity to be your mom.

"We're Safe, the Baby Does Not Have Down Syndrome" & My Break-Up With The Today Show

2013-01-30T22:39:00.004-05:00

Ugh. I watched it. I thought about it. I watched it again. I thought about it some more. There are elements of this segment on The Today Show that I enjoyed. Then there are the ones I just can't stomach. As Joey's mom, there is a part of the segment that I just cannot watch without crying and without mourning the way our world celebrates when they find out that their child doesn't have Down syndrome. That was the part that stuck with me.

All photos in this post by Nat.

On January 28, 2013, The Today Show ran a segment about a couple who is having their first baby and opted to do the new MaterniT-21 Plus testing to find out if the baby has Down syndrome (Trisomy 21), Edwards syndrome (Trisomy 18) or Patau syndrome (Trisomy 13). The parents to be said that even if the baby did have Down syndrome, they would keep the baby, but they wanted to do the testing so that they could be prepared and could plan and see additional specialists if needed.

The segment talked about the mom's "advanced maternal age"-- she will be 35 when the baby is due in June and they used that as an additional reason to do the testing.

I recently had a long talk with a friend about the MaterniT-21 Plus testing and about the prenatal testing that we chose to do with both of our children. With Tommy we did the typical ultrasound and the quad screen testing. With Joey an early ultrasound showed that he had hydrops around his body and a septated cystic hygroma around his head, which led to our doctors advising us to have a CVS done to try and find out what genetic conditions might be causing his complications. With Joey we knew at only 13 weeks into the pregnancy that he had Down syndrome. Only at the time, the Down syndrome diagnosis was very secondary because we were being told through a large part of the pregnancy that he would never survive because of the cystic hygroma, the hydrops and then eventually his congenital heart disease and heart defect.

For our family, prenatal testing did just those things that the couple on The Today show spoke about. We were able to see specialists (oh- and did we ever- I had 3-5 appointments per week when I was pregnant with Joey). He had multiple fetal echo cardiograms performed. We had multiple stress tests each week. We had weekly ultrasounds. We were as prepared as we thought we could ever be before he was born, except we had almost zero understanding of the joy this little boy would bring when he was born. We had no idea the people he would inspire. We had no understanding of what his little life would mean and how his fighting spirit would end up defining our lives in a richer and much more meaningful way.

For us, the prenatal testing was both incredibly stressful and helpful at the same time. The stress of knowing that all of this was going on inside me to our baby was so intensely difficult because I had no control and could not do anything to help him. At the same time, it gave us a lot of time before he was born to accept that Joey had Down syndrome and that he might have some medical issues. Looking back, the greatest fears were the fear of the unknown. The fear of what it would mean to have a child with Down syndrome. The fear of what society would think of Joey. Would people think it was my fault because I was at an advanced maternal age? What would it mean? How would Joey's diagnosis affect Tommy? Our lives?

Looking back I wish someone could have just told me how amazing it would all be. I wish they would have been able to tell me that Joey's smile would fill my heart with amazement and joy. That the sound of his laughter would cure any heartache in the world. That each of his milestones would make me far prouder than of any accomplishment I could have ever imagined. That the life God was giving us so far exceeded any child I could have ever dreamed up on my own. That is what I wish a prenatal test would have told me.

In the meantime, if we were to ever have another child we would definitely do prenatal testing again. Now that we know our children are at risk for congenital heart disease we would definitely have echo cardiograms. Now that we have a child with Down syndrome, we would test again so that once again we could be as prepared as possible. For that, we appreciate the knowledge that prenatal testing can provide.

What I don't like and what I don't respect, however, is the name that the company, Sequenom, chose for their new testing--MaterniT21 Plus. I find it disgusting. I find it insulting. I find it completely abhorrent that this company would use this "ironic" twist in its naming of its new prenatal testing. In my mind it is completely disrespectful of parents, moms, children and individuals with Down syndrome. As you may know, Down syndrome is the occurrence of a Trisomy (T) of the 21st chromosome (thus- T21). While the test screens for 3 different trisomies, the manufacturer chose to highlight that it tests for Down syndrome. Why? To prey on people's fears? I don't know the "marketing" theory behind, all I know is that I find it reprehensible.

Pros and Cons of Prenatal Testing

For any woman or family considering prenatal testing there are pros and cons to both sides. Some of those include:

Pros

Earlier knowledge of possible problems may help parents prepare for the care the child may need.
Early knowledge of certain conditions may be an advantage in case emergency treatment is necessary (such as when our doctors were going to remove some of the excess fluid built up around Joey's body).
Early knowledge of certain conditions may give parents time to meet and find specialists (such as our cardiologist in Akron and at the University of Michigan- we knew both of them before Joey was born).
Early knowledge may be an advantage in that doctors may choose a delivery method that minimizes the risk to the mom and infant (Such as Joey being delivered via C-section 3 weeks early due to the excess fluid build up and the concern about his growth be restricted).

Cons

CVS and amniocentesis carry some risk of miscarriage (We had to travel out of town for Joey's CVS to help reduce the risk--there is a school of thought that doctors who perform a CVS more often have a lower miscarriage rate).
The MaterniT-21 Plus testing can confirm only 3 of the trisomies, but does not test for nearly 50% of the other chromosomal conditions.
Testing is not as precise as many parents believe them to be. It does not guarantee that problems do not exist.
Testing may indicate a problem where none exists or may not detect a problem, giving false security.
Testing does not cover all disorders or diseases. Many diseases have complex forms that cannot all be covered in a generalized test.
Testing raises ethical issues with some using prenatal testing as a means to decide to terminate even when there is never a 100% guarantee whether or not a child will survive a pregnancy with or without health issues.

Back to The Today Show segment and why I simply can no longer turn on my local affiliate NBC channel and ever watch it again. About halfway into the segment (you can view the entire segment here) Matt Lauer says to the couple, "Let's get right to the good news."

This is when my heart sank. Surely, I thought to myself... surely, they are not actually going to announce on national television that their baby does not have Down syndrome?

Let me repeat that again, Matt Lauer says to the couple, "Let's get right to the good news."

The mom-to-be goes on to say, "We are safe. The baby does not have Down syndrome."

And then I cried. This is the very reason people fear having a child with Down syndrome. This is the very reason I feared having a son with Down syndrome.

The "good news" of this particular segment--- which had claimed that the testing would allow the parents to prepare and line up specialists-- the "good news" was that their baby did not have Down syndrome.

The "good news" that The Today Show celebrated on January 28, 2013 was that this couple's baby-to-be will not be like our precious son, Joey.

For that, I'm out. Good-bye Today Show. I've been enjoying Good Morning America just fine.

For that, I'm more dedicated to trying to help advocate and educate the world that having a child with Down syndrome is not some kind of dark cloud.

For that, I'm hoping that someday when we turn on the television we will see a couple rejoicing the gift that God is giving them a child. That we will see a couple or a mother rejoicing that her baby has an extra special gift-- an extra chromosome.

For now, I wonder, is it too much to ask others to not celebrate on national television that their child does not have Down syndrome?

Super Joey's 2013 Hospital Visit & A January Full of Ickiness

2013-01-24T20:03:00.000-05:00

It would seem that Joey has a bit of an issue with Croup. Flashback to New Year's Eve 2010 and as we were leaving the house to go to the Winking Lizard for a few wings with Tom's brothers and our sister-in-law from New Jersey and it seemed like Joey wasn't quite himself. We were gone for just two brief hours when a phone call came from the babysitter, "Um, Jen. I think there's something wrong with Joey."

I knew it. I knew when we left something was going on. We left the wings and beer, picked up Joey and headed down to the ER at Children's Hospital. I thought maybe he would get some fluids and we would head home, but no such luck. This was before his heart surgery to repair his ASD and we ended up ringing in 1/1/11 in room 7220. I will tell you this--a children's hospital is a lonely and quiet place on New Year's Eve and New Year's Day. Luckily after some breathing treatments and steroids and a couple days in, we were able to bring him home.

The next time he had croup, Tom and I were in California and once again it hit him hard and like a ton of bricks. I knew when our sitter had called up one of my best friend's, Kelly, to help her that things must have been serious. We were literally across the country and were coming home the next day and there was no way to get home any faster. Kelly and LoLo took Joey into the doctor, got him some good medicine and took amazing care of him until we could make it back home.

This time it hit just as fast. On Thursday night he was up with that barking croup cough and on Friday I took him into the doctor where he was given a steroid. We thought he was better over the weekend, but Sunday morning we knew something was wrong. He wouldn't eat. He wouldn't drink. He wouldn't sit up. He just wanted to lay on the floor. I don't know about you, but I'm pretty much the same way when I'm sick (which I am-- Influenza A-- we all had the flu shot, but it still hit). That being said, since Joey doesn't really "speak" just yet, it's hard to know what to do when he is sick. We also worry about his congenital heart defect and leaky mitral valve and worry that any illness may put too much pressure on his heart, which is what will eventually lead to him having another heart surgery someday down the road.

I thought we might head into the ER, he might get some IV fluids and then we would be able to head home. It's funny how I always think that is what will happen. It never does...

They drew blood. Took swabs. Tested for strep, tested for flu, tested for RSV--all of which came back negative. Hooked him up to some IV fluids. The Resident and Attending Doctor were baffled. After 8 hours of being on IV fluids and not getting better, and his white blood count coming back at alarmingly high levels, the doctors decided to admit him and started to talk about doing a spinal tap to rule out meningitis.

Would you know it- we ended up back to our old room- Room 7220. I couldn't believe it! What was weird was how excited I was to be in the same room. There was something about the familiarity of it that made me feel more comfortable and I hoped that Joey would feel comfortable.

After about 20 hours on IV fluids our little man started to perk up a little bit and ate a cracker. That was when they decided to not do the spinal tap. Whew!!! From there on out it was more blood draws, more IV fluids and more waiting it out. Super Joe and I stayed together in his room and watched the Season 3 opener of Downton Abbey.

We still don't know what Super Joe had, but by late Monday night his white blood count had come back down and we were able to pack him up and take him home to his own bed.

After a couple more days of rest he was back to himself and we still don't know what he had, but we were glad Super Joe was back to himself.

And then it was....Tommy's turn!

Poor Tommy. I think he slept for almost 24 hours in a row. It's interesting because when he doesn't want to eat or drink and wants to sleep all the time we don't rush him down to the ER. I would have to say that is because of his ability to tell us how he is feeling and where it hurts. That is probably the biggest difference between when he and Joey get sick. Because of Joey's history we are a little jumpy and because he can't verbalize how he feels, he is a tougher case to treat.

Both Tommy and Joey went on Tamiflu last week after being exposed to the flu and knock on wood- they are both doing much better. Me, on the other hand, caught the flu and have been down and out since Monday night. I'm praying the boys continue to improve and don't get it because the real flu is brutal! We all got the flu shots and my doctor said on Tuesday that the flu shot should at least help with the longevity and severity of it. Now we are all on Tamiflu and I'm trying to isolate myself from everyone.

In the meantime, I have a lot of alone time to read and catch up on things. Among the things I caught up on was this interesting article about a mom who created a visual chart/map of what it is like to be the parent of a child with special needs. The article appeared on The Huffington Post and was called "Gabe's Care Map" which was Christine Lind's effort to describe to physician's what her son's care entails. I think her map is amazing!

Having a child with special needs requires a lot of organization, a lot of patience, a lot of drive....pretty much a lot of everything. And at times, it requires a lot of everything you don't really have. Extra energy. Extra time. All those things we seem to seek in just our regular every day lives. Christine Lind's map is an excellent illustration of what it takes. I explain to people that Joey averages about 5-7 appointments per week, but until you see it the way Christine illustrates it-- it is hard to understand just what this world can look like:

Her blog at Durga's Toolbox is devoted to "embracing special needs parenthood with courage, compassion and joy". It's one of my new favorites and if you are the parent of a child with special needs, you may also enjoy it.

I would be remiss if I didn't mention the waiter, Michael Garcia, who works at Laurenzo's in Houston, and stood up for an adorable little five-year-old, Milo, who has Down syndrome. A family at another table moved tables so they wouldn't have to sit near Milo and his mother and then continued to make comments about little Milo. Mr. Garcia finally had enough of it and asked the family to leave. You can read the full story here.

My favorite part of the story is that Mr. Garcia never told Milo's mom what was going on because he wanted to protect her and Milo's feelings from what was going on. Having been a waitress before I know what a stressful job it can be trying to keep everyone happy. It's that prior experience waiting tables that always makes me that much more appreciative of good and kind servers.

Are you a generous and kind tipper to good service? I hope so!

Is your family staying healthy this new year? I hope so!

Anyone else down with the flu? I hope not!

The Ethics Of Therapy For Children With Down Syndrome - Breaking Up Is Hard To Do, But Getting Dumped is Worse

2013-01-03T21:28:00.001-05:00

Happy New Year! A fresh start! A new opportunity for growth and improvement. That is what my mind should be thinking. That is the spirit and energy I should be approaching this new year with. Instead, all I can think about is this, 2013-- a new year and a new deductible. First there is the $2500 individual deductible that Joey usually clears by mid-February. Then there is the $5,000 family deductible that is mostly cleared by him around April/May. Then there are the therapy limits.

Our insurance limits his speech therapy to 20 visits per year. Not even once a week is covered and so right around the time we hit the deductible we start paying out of pocket for his speech therapy because it is no longer covered after visit 20. This is a choice we have made. We have decided that trying to help Joey to speak as well as he can will give him the best possible opportunities to be able to communicate in the greater world as he gets older. It will help him learn. It will help him have relationships. It will help him help himself and keep him safe, which is one of my greatest worries for Joey. We are fortunate to have found a wonderful speech therapist who loves Joey as much as he loves her. He has started to make many more sounds including "g" and "k". His first word was "Da Da" and he uses it purposefully when he sees his dad. His second word was "Car"-- oh the irony. Of course his second word was "car." Tommy and I work hard daily to encourage and get him to say "Ma Ma." It will come. Does he have Apraxia? It is possible. His therapist and I have spoken about it and it may be one of the speech challenges Joey will have to overcome.

Working on the stairs!

Physical therapy is also limited to 20 visits per year. The struggle I have is that for a 2 1/2-year-old-boy who cannot walk and cannot talk, we are impeded by these insurance mandated limitations on his coverage. Occupational therapy is also limited to 20 visits per year. Last year was our first full year of therapy and we blew through our coverage without keeping track and without realizing just how costly it would end up being once we had to pay for it out of pocket for the last four months of the year.

This year we are trying to be better planners. We are sticking with speech therapy every week despite the out of pocket expenses. We are trying to do physical and occupational therapy every other week in an attempt to stay within our insurance confines. On the alternating weeks I am using my Down syndrome resource books from Woodbine and the lessons from therapy to try and re-create and practice what we learn during our priceless sessions.

We had finally found a wonderful Occupational Therapist (our 4th) who Joey loved and who was very close to home. That is the other thing about therapy. Even though the sessions last 30-60 minutes it is usually a 30-60 process of getting out the door and to therapy and then doing the same to get back home. Overall, one therapy session usually entails about 2-3 hours from start to finish.

Our first OT experience was in a clinic where they did OT, PT and ST all at once. Joey was completely exhausted and overwhelmed. We went through 2 OT's in that clinic. We then broke out all the therapy sessions into individual ones and we met our 3rd OT. This OT was a nice person, but the day she used the R-word during our session and then denied using it when I asked her to please not use it in front of us, I knew we would probably need to move on.

Then came OT #4. This OT was very enthusiastic and very encouraging. Joey seemed to really like this OT. Back in December I explained to this OT and to the office that starting in 2013 we would have to reduce our OT visits to every other week in an effort to stay within our insurance coverage.

Breaking up is hard to do, but getting dumped is worse. Our OT and the office told us that if we did not come every single week to therapy they would no longer serve as Joey's therapist. They said that they had changed their office policies and now would be requiring every patient to come every single week.

"But what if your patient's insurance won't cover those visits?" I asked. I was told that those patients would have to pay out of pocket if they wanted to continue to be seen.

I cried. I was hurt. I thought that our therapist and the office cared about Joey's progress. I pushed. I questioned. I argued. I asked our therapist to advocate for us, but the therapist stood firm on this new office policy.

Is this ethical? I don't know. What I do know is that it sure didn't feel very good and something about it just didn't really feel right. I've been dumped before, but my child hasn't and that is the worst kind of heartbreak a parent can experience.

Meeting Sunny- Aunt LuLu and the girls' new puppy.

I put my chin up and started interviewing new therapy centers. The thing is- as a parent you have to work around your other children's schedules, your child in therapy's schedule-- it's some kind of incredible Rubik's cube to sort it all out. To be kicked out a program and spot you thought was working for your family is brutal.

I called our therapist and said that we had a Christmas present for the therapist that we would be dropping off. I took the gift and Joey in so we could say good-bye and move on in 2013. The therapist asked us to please keep them updated on Joey's progress. We tried to take the high road and move forward, but keeping them updated is probably not going to be on our list of priorities.

Kisses from G-pa.

Has your child ever been dumped? Have you ever been kicked out of therapy? Is it ethical for a therapist to require you to attend every week even if it is not covered by insurance?

What Does Santa Know About Down Syndrome and Remembering the Angels

2012-12-17T21:12:00.002-05:00

Tommy and Joey sat on Santa's lap a few times over the past couple weeks. Tommy has finally overcome his fear of Santa (he seems to have figured out that Santa=Presents) and Joey has a healthy interest in figuring out what that large white beard is all about.

Last weekend they had the chance to sit on his lap once again and discuss hopes and wishes for Christmas 2012. Tommy would like "a dragon castle" and I'm pretty sure Santa is going to bring Joey a water table to help him work on his standing skills.

When Tom and I walked over to pick up Joey and Tommy after their turn, Santa looked at us and said, "Joey is a very special boy." Uh oh. Here we go. We hear the word "special" in our life a lot. There is the Special Olympics, special needs, special schools, special toys--sometimes so much that you wonder what "special" really is anymore. I try not to be defensive. I really do. Most of the time I do a pretty good job of it. I pray to God and ask for grace and patience and understanding. Sometimes I just don't want to be told my kid is "special" because he has Down syndrome. Sometimes I just want him to be another kid sitting on Santa's lap.

Santa went on to say, "You know, I have a daughter just like Joey, but she is grown up." Then the tears started and I felt so horribly ashamed for puffing up my mother hen feathers and being immediately ready to be defensive. "She is doing great," he went on. "She lives on her own and has a job and a wonderful life."

Santa at FCC told us about his beautiful daughter who also has an extra chromosome.

Turns out-- Santa happens to know a lot about Down syndrome. Turns out I'm still praying for grace, patience and understanding. Turns out, not knowing what everyone is thinking all the times is pretty amazing. Turns out, it's important to give people a chance to share their thoughts with you.

Remembering the Angels

Today the family of Noah Pozner buried their precious son. How does a parent survive burying a child? How does a parent survive when their baby doesn't come home from school one day and never will? How do any of us ever come to grips with what happened? How do we explain it to our children? How do we resist the urge to politicize this unthinkable tragedy? How do we fight for what will keep our children and our society safe? How do we move forward?

For a parent to bury their child must be one of the worlds' greatest injustices. We are praying for all of the children, the families, the siblings, the teachers and the community of Newtown, Connecticut.

Today, Veronique Pozner did what every parent prays they will never have to do. She gave a eulogy for her son. As she says to her son, "Take flight, my boy. Soar." I hope you find as much comfort in her words as I did. Her grace and strength is remarkable.

From mother, Veronique Pozner:

The sky is crying, and the flags are at half-mast. It is a sad, sad day. But it is also your day, Noah, my little man. I will miss your forceful and purposeful little steps stomping through our house. I will miss your perpetual smile, the twinkle in your dark blue eyes, framed by eyelashes that would be the envy of any lady in this room.

Most of all, I will miss your visions of your future. You wanted to be a doctor, a soldier, a taco factory manager. It was your favorite food, and no doubt you wanted to ensure that the world kept producing tacos.

You were a little boy whose life force had all the gravitational pull of a celestial body. You were light and love, mischief and pranks. You adored your family with every fiber of your 6-year-old being. We are all of us elevated in our humanity by having known you. A little maverick, who didn't always want to do his schoolwork or clean up his toys, when practicing his ninja moves or Super Mario on the Wii seemed far more important.

Noah, you will not pass through this way again. I can only believe that you were planted on Earth to bloom in heaven. Take flight, my boy. Soar. You now have the wings you always wanted. Go to that peaceful valley that we will all one day come to know. I will join you someday. Not today. I still have lots of mommy love to give to Danielle, Michael, Sophia and Arielle.

Until then, your melody will linger in our hearts forever. Momma loves you, little man.

Different, But Not Less

2012-12-05T22:09:00.000-05:00

I was telling my friend Maureen about how obsessed we have become with the Showtime series, "Homeland" when she told me we should watch an HBO movie featuring Claire Danes called "Temple Grandin". We finally started watching it about two nights ago and were immediately mesmerized by the story of Temple Grandin.

Grandin was diagnosed as having autism in 1950 went on to earn her Ph.D. and is one the leading livestock handling equipment designers in the world as well as a self-advocate for individuals who have autism.

Claire Danes stars as Temple.

Photo of Temple Grandin. Her website: www.templegrandin.com

While her mother, Eustacia, was told to institutionalize Temple, she refused. She fought to have her daughter included in typical schools and to have every opportunity her other children had.

Her mother's motto throughout the movie was that Temple was, "Different, but not less." How her words rang so very true for our family. Tom and I sat in silence and watched Temple's journey and struggles to be given the same opportunities others were given. Our eyes filled with tears as we watched her mom go from struggling to teach her to talk to attending Temple's college graduation.

Photo by Nat.

Being a parent advocate is such a fine line to walk. You have to learn to balance your passion and emotion with clarity and calmness to be heard. You have to advocate (which literally means to plead the cause of another) in a way that is meaningful and helpful instead of detracting from the cause you are trying to champion.

Photo by Nat.

In a world where the idea of perfection and "healthy children" are the supported ideals, it is sometimes an uphill battle to help convince the world that while your child might be different, he certainly is not less. Watching what the world looks like to Temple Grandin made me really wonder what the world is like for our Joey. Is it frustrating for him not to be able to verbalize his feelings? Does he get tired of not knowing how to walk? Do our every day noises overwhelm or bother him? I don't know the answers, but I do know that this movie was a great reminder of trying to be empathetic and trying to continue to understand that the world can be a very overwhelming place at times for individuals who have special needs.

Photo by Nat.

Do different people stress you out? Have you ever avoided making eye contact with someone because they were in a wheelchair or looked different than you? Have you ever found yourself saying something incredibly awkward because you didn't know what to say to someone who was different than you? Why are differences so difficult for us as humans to accept? I'm just as guilty of it as anyone else. There are times when I look away from another family or child at the hospital because I just don't know what to say. I know what I should say is something from my heart. The same things I would say to any child. Things like, "I like your shoes." Or, "How are you today?" It is something I continue to work on and try to improve.

Photo by Nat.

In our world, there are days I handle the stares and awkward conversations with grace and ease. Then there are the days I'm just not up for it. Days like today while I stood in line to get my medicine for strep throat and the woman in line in front of me JUST KEPT STARING AT JOEY. I smiled the first time we made eye contact, but it started to get awkward after about 5 minutes. It's the same old problem I have. I honestly forget he has Down syndrome. I forget that it's a thing to some people. I forget that Joey probably looks different to some people. In all honesty, the woman probably knew someone else who has Down syndrome and wanted to say something, but she didn't know how to, so she stared at us. It also could have been that she felt bad for my two kids having such a disheveled mom in her house slippers out at the pharmacy. Whatever it was, it just happens sometimes and it is our mission to continue to educate the world that Joey and people like Joey might appear different, but they certainly are not less.

Photo by Nat.

It is also for this reason that I am so very passionate about prenatal education and information for parents who find out their child has Down syndrome (or any other syndrome) in utero. If I could I would stand from the highest of mountains and scream to the world that children with Down syndrome might be different. They may have some additional health concerns. They may have some additional learning challenges. They may be a lot of things, but they are certainly not a single bit less in the eyes of God.

While Temple's mom was advised to institutionalize her daughter back in the 1950's we were encouraged to abort or even put our child up for adoption. If I can help change that thought process for even a single parent, I will have succeeded. An excellent source for expectant mothers who have received a prenatal diagnosis is Down Syndrome Pregnancy.org.

Have you spoken to someone outside of your comfort zone lately? Are you okay with differences? What would you do if you were pregnant and were told your child has Down syndrome?

Learning to Stand on His Own Two Feet: Strategies For Learning to Stand

2012-11-29T21:42:00.000-05:00

This post was originally called "Strategies for a Non-Walker." Then, it was going to be called "Learning to Walk, Super Joe Style." Finally I decided to take a lesson right out of Joey's playbook and call it what it really is right now. It is learning to stand. Learning to get up on his own two feet and stand independently.

The walking will come. It will. Even though my knees are aching from carrying him up and down the stairs at our house. Even though my left wrist has started to develop what may be the same carpal tunnel I suffered from when I was pregnant and even though my left bicep is strangely larger than my right bicep (I always carry him on my left side so I can use my right hand)-- he will walk someday. The non-walking 2 1/2-year-old can be a struggle at times. It's tough because he wants to get up and go and crawl all over the place instead of being in his stroller when we are out. It gets a little hard because he weighs what feels like a ton and he is getting taller and bigger, but I'm not. I'm not looking forward to the winter and trying to balance him and my purse and holding Tommy's hand. It's just those little things that can make a small outing a much bigger issue than it should be.

We had an evaluation the other day and the therapist asked me, "Does Joey stand up in the middle of the room?" Um, no. Not even close, but he wants to. He wants to so very badly and he will get there. We will get there together.

In the meantime, it is more important to try and enjoy the moment we are living in. To celebrate the progress he has made in this past year.

This is from almost a year ago when he wasn't crawling, yet.

Do you have a toddler who, um, well, doesn't quite toddle, yet? Trying to come up with creative ideas to encourage pulling up, standing, cruising and eventually walking?

Some of the things we started working on about 4 months ago include:

1. Letting Joey crawl as much as possible. He does an "advanced" (basing this only on his newly found speed) Army crawl. It used to be just his elbows propelling him forward, but after finally just letting him crawl all over the house instead of carrying him, he is now starting to use more of his arms and his legs-- YES!!!-- have started to move a lot more with the Army crawling. Joey has never done a traditional, 4-point crawl (ie: on hands and knees), but his Army crawl is crazy fast and very entertaining to watch. Letting him crawl instead of carrying him all the time has given him the chance to explore his environment more and become more motivated. Yes, read more motivated as "getting into a LOT more trouble." Since improving his speed he has been able to get to Hershey's food and water about 5 times before I could get there first, he has thrown Tommy's entire outfit into the toilet before bath time and he threw his own toothbrush into the toilet. We are THRILLED!

Dog bowls, toilets and all areas of water are of great interest. He is so fast!

2. Braces. Joey has leg braces that go almost up to his knees. The braces are fine, but we found that putting his little sneakers on has also provided a lot of support and they help stabilize him.

Superman for Super Joe.

3. Getting out of the stroller. To strengthen his core, we started using one of those little push car things on our walks instead of always using the stroller. This required him to use much more of his core and it made him balance more.

4. Gait trainer. We originally were borrowing a gait trainer and using it at his preschool, but our Early Intervention Coordinator and therapists from Help Me Grow realized he was tending to just sit in the trainer instead of stand. If you can borrow one from your County service provider, it is a possible route for improving standing and walking. For Joey we have decided to switch from the gait trainer to a stander and we will hopefully move back to the gait trainer in the next 4-6 months when he is able to independently stand.

The gait trainer we were using at school.

5. Stander/Joey's Chariot. The Stander has been a game changer for Joey. Something about it has really given him the desire and the feeling of what it feels like to stand on his two feet and be upright. He has been using it for about a month now, but he has started pulling up a LOT more. Such as tonight. When he stood up at the bathtub and toppled right in. Right in the full tub. In his jeans and sweater. I was horrified, shocked and thrilled all at once!

6. Putting items of interest up high. Items like Tommy. Toys. Iphones. Remote controls. You know- items of interest.

Hey Bro! How's it going up there?

Figuring this standing thing out.

Cousin Brenna and Joey.

7. The boxes. The boxes hold toys, blankets, photo albums and used to be beautifully stacked in our family room before children. Now they act as a means of blocking the fireplace and a climbing station for Super Joe. Usually there are toys on the tops of each box to get him to climb, but his modus operandi is to clear off one box by swiping all the toys off, climb up, clear off the next box, climb up and finally he clears the top box and gets to the top. Go Super Joe! Go!

8. The cheerleader. Thomas Henry is Joey's #1 fan. His #1 supporter. His #1 cheerleader. He is his motivator and instigator. He brings me the levity I often need after a trying day. Today at school some of the kids in his class were asking why Joey doesn't walk and why he had a "wheelchair" at school. Tommy's AMAZING and compassionate teacher took the entire class across the hall to Joey's classroom (with Joey's AMAZING and compassionate teacher) and Tommy explained to all his classmates that Joey is learning to walk and his stander is helping him to learn to stand up. He added a few extraneous tidbits such as the fact that Joey doesn't yet say "Mama" and that he sometimes bites Tommy. :) To think of my precious little 4-year-old having the wherewithal to be able to explain all that without hesitation takes my breath away. He is our entire family's #1 cheerleader.

Nope- not a photo from the 4th of July. He found a flag and carried it around for an entire day.

Spidey/Batman/Tommy

All of Joey's hard work is paying off. He is making progress. He is moving forward. Being in this world every day makes it incredibly hard to recognize the real progress he is making, but he is doing it. And it is hard. And he never gives up. Even when he is tired and has to put his head down. He always gets back up--in spirit--and tries again.

Do you have any strategies for tips for teaching a toddler to stand and walk? Is there anything you have struggled to do, but you persevered and got back up until you made it?

Ann Coulter Speech Cancelled After "Retard" Tweets

2012-10-28T23:22:00.000-04:00

I think Perez Hilton's headline says it best, "Ann Coulter Speech Cancelled After 'Retard' Remark And The World Is A Better Place."

Photo from here.

As reported on Foxnews.com a protest by students at the University of Ottawa led organizers to cancel a Tuesday night speech Ann Coulter was supposed to give.

Conservatist political activist Ezra Levan said it would have been "physically dangerous for Ann Coulter to proceed with this event." He then went on to say it was an embarrassing day for the University of Ottawa and their student body who, "chose to silence her through threats and intimidation."

On the other hand, Mike France, a protest organizer and international studies student said he was happy they were able to stop Coulter from speaking, "What Ann Coulter is practicing is not free speech, it's hate speech. She's targeted the Jews, she's targeted the Muslims, she's targeted Canadians, homosexuals, women, almost everybody you could imagine."

Francois Houle, a university academic vice-president wrote a warning letter to Coulter and said that Canadian laws make provisions for hate speech. Coulter leaked the letter, which included this line, "Promoting hatred against any identifiable group would not only be considered inappropriate, but could in fact lead to criminal charges."

Piers Morgan Rattles Coulters' Cage

Ann Coulter appeared on Piers Morgan on Friday night and is clearly rattled by his questioning of her use of the word 'retard' in her tweets. He does an excellent job of trying to force her to explain why the R-word is okay to use, but the N-word is not. What I wish they both would understand is that we don't have "Down syndrome children"-- we have children who happen to have Down syndrome and who have for way too long been labeled as "retards" by individuals who are being purposefully cruel.

Continue to fight the good fight! We are not the word police, we are just trying to help make the world a better, more accepting place for individuals who happen to have a disability.

If you would like to have your voice heard as well, you can visit Change.org and sign a petition to try and get Coulter to apologize. Visit here to sign the petition.

Eye Surgery #2

On a different note, Super Joe made it through his eye surgery on Friday. He was looking like a prize fighter after his surgery, but is doing much better today now that most of the swelling has started to go down. Did the surgery work? We won't know for a few weeks. Thank you for all the prayers, thoughts and support.

5:30 am was early to get in the car and drive to the Cleveland Clinic.

Pre- surgery. Note the blue marker over his left eye for the OR.

If he has to have a 3rd eye surgery we're getting him a shirt that says, "You should see the other guy."

Joey's Eye Surgery: Take Two

2012-10-25T22:26:00.000-04:00

Note the new head tilt.

Tomorrow morning at 5:30 am we will head back up to the Cleveland Clinic. Joey first had eye surgery on both eyes on July 2nd to help correct the way his head was tilting backwards to accommodate his nystagmus. Since he had open heart surgery last summer we didn't think too much of eye surgery. What I didn't realize at the time was how much impact and change having the position of both of your eyes moved can have on a little guy. He seemed to be blinking a lot, holding his eyes closed to readjust and often putting his little head down on the floor when he was just too tired to try and focus his eyes.

That was the first 8-10 weeks post-surgery. The next thing that happened was that his left eye suddenly started to not follow along. He had never had a "wandering" eye before his eye surgery, but suddenly it appeared that when he would look to the left his left eye would just keep going until all we saw was the white of his eyes while his little blue eye ball disappeared somewhere to the left.

I was in complete and utter denial about the wandering eye. It was an "X" factor that had never been mentioned as a possible side effect. As I seem to forget and then get so rudely reminded of is that parenting is a series of thinking you've got things down only to figure out what you really knew nothing at all and you can never truly be "prepared" for the worst. I've come to the conclusion that the only thing you can prepare for is to be unprepared. Make sense? I'm not sure it does either.

In addition to the new wandering eye, we noticed that he stopped trying to stand up or pull himself up and trying to get him to stand up at a table for any period of time has becoming increasingly harder and harder. Then he started doing the head down in his hands on the ground thing. A lot. Like every day. At school.

Then came the head tilt as you can see in the photo above and the one below:

And again, note the new head tilt.

This is a new head tilt. One we had not seen before. Again, like the wandering eye (my husband noticed, I turned a blind eye...) I was in total denial about the head tilt until the doctor asked us a few appointments ago if he always tilted his head like that. Like what? Oh, like that. Like to the side so he can accommodate his new wandering eye. Ummm. Nope. He hadn't done that one before.

We were sent home with about 100 eye patches and told that we needed to get him to wear it for an hour a day, which worked until 1) the mini cupcakes ran out that I used to bribe him with while he had his eye patch on and 2) he learned how to rip his eye patch off quicker than it took for me to turn around.

Unfortunately, the eye patching is necessary because when someone has a wandering eye, THEY CAN LOSE VISION IN IT. Huh????? What????? Seriously???? So we go back and forth and he wears his patch for about 1 or 2 minutes and then rips it off the minute I try to wash a dish off or answer the phone. Oh, Super Joe. Hopefully no more eye patches.

So tomorrow morning we go in bright and early and he will have surgery on his left eye only this time. If you think of it, please say a little prayer that everything goes smoothly so he can get back to preschool on Tuesday and be in the Halloween parade at school. Speaking of school, Joey barely looks at me once I take him to his classroom, but now when I pick him up 2 1/2 hours later he has started bawling when it is time to leave school. This is from a boy who barely every cries. I am taking that as a positive sign that he enjoys our time apart and I'm trying not to take it too personally.

In other areas he has had a pretty major month. He has started using a spoon (and kind of a fork- still working on that one) pretty well.

He usually alternates one bite with his spoon and one bite with his hands and such meals usually involve an entire outfit change, but it's worth it. He loves applesauce, yogurt, cottage cheese and his blended fruit and veggie mixtures I buy in those cool pouches from Target.

Almost two weeks ago we took him in for his third modified barium swallow study and we were told that not only does he no longer need to be on honey thickener, but that he "has the swallowing skills of a typically developing two-year-old." Never have I been more excited about being considered "typical"!!!!

The results of this swallow study were so drastically different from our prior swallow studies that I burst into tears when I heard the news. They said that their clinic almost never prescribes the honey thickened level to any child and that he should have had a follow up swallow study done much sooner. That being said, we have decided to step down gradually and he is now using the nectar consistency and hopefully after the eye surgery we will try to go down to nothing at all.

One wonderful trick I learned from a friend is Kefir, which is packed full of probiotics and which is thicker than regular milk. It is now one of Joey's new favorite beverages.

Hello Sasha Rose, Miss Maureen and Miss Kelly!!

Finally, on Monday Joey had his CBC levels, thyroid levels and lead levels all tested. He's been having some weird infections (in the folds of his ears and on his toes) as well as petechiae on his trunk in the front and in the back. In the world of down syndrome where the risks of childhood cancer run 20-40% higher than the regular population, infections plus petechiae can set off warning signs. What we have finally concluded is that when we are really worried we ask for a blood test. As simple as that. By late yesterday afternoon we learned his thyroid levels were back to normal as were his CBC counts. Whew!!!! Go Super Joe!!!! Just for that news alone we feel so blessed!

Speaking of cancer, did anyone watch Katie today? With Ronan's parents? Were you in a sobbing heap after watching it? I was. Have you ever seen a boy with such beautiful eyes as his? He passed away on May 9, 2011 because of Neuroblastoma cancer. You can visit here to learn about his story. You can go here to buy the song Taylor Swift wrote about his life. Donations from the purchase of the song go to the Ronan Thompson Foundation. Hugs your babies a little closer this weekend.

We are hopeful that tomorrow's procedure is super successful and that it is the last time he has to go through this eye stuff. In the meantime I have tried to take a video the night before any procedure so we always have something to compare him pre-surgery and post-surgery with. Please note-- there would be more video of Tommy, but I could not convince him to put on any clothes. Our new bath time/ night time routine involves me blowing bubbles into the tub, then them getting out and having a dance party until I can wrestle them each into pjs. Good times!

Video One:

Video Two:

Have you told your kids today that you love them to the moon and back? I hope so.

Mean Girl - Ann Coulter and Her Obsession With Using the R-Word

2012-10-23T22:52:00.000-04:00

One of the things that angers me the most about the use of the R-Word is that people with disabilities know what it means and the word gets bandied about as if they do not.

I read about Ms. Coulter's use of the word last week in a tweet about a video the president made for the National Forum on Disability Issues: "Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election."

It pains me to feed the beast (ie: her ego) and discuss her a public forum and I chose to ignore her first comment because living in Ohio means we are saturated from sun up to sun down with television ads, mailers, phone calls and people ringing our door bell to persuade us who to vote for in the presidential election this year. The last thing I wanted to do was to provide another forum for Ms. Coulter to gain any additional attention.

Then she tweeted this following the presidential debate last night, "I highly approve of Romney's decision to be kind and gentle to the retard."

The more I think about it, perhaps we should actually be thanking Ms. Coulter for bringing the horrible use of the R-word to light for more people to discuss and understand. Actually, yes-- I do thank her for that. I thank her for showing what bullies sound like.

I thank her for opening up a national discussion on a topic that is so very near and dear to me so that I can somehow try to help encourage the world to be a more accepting, educated and aware place for individuals with disabilities (not just Down syndrome like Joey, but all disabilities) to live in.

In 2010 Congress banned the use of the words "retard" and "retardation" in federal health, education and labor laws and now favors using the term "intellectual disability." By 2013 the American Psychiatric Association will also replace "mental retardation" with "intellectual development disorder" in the 5th version of The Diagnostic and Statistical Manual of Mental Disorders.

Ms. Coulter-- having a son who has an intellectual disability means that not only do we have to help show the world everything he CAN do, but it also means proving to the world that outdated slurs that paint an incredibly wide brush of misconception are not accurate. Our son has had open heart surgery, eye surgery, ear surgery and is preparing for another eye surgery on Friday, the last thing in this world that he needs to battle is ignorance and hatred from people who have a public pedestal. To be completely honest, we have enough on our plates as does Joey and having to continually fight to change ignorance is a battle we wish we had more time for. For Joey, everything he does take extra hard work, effort, devotion, struggle, and heart. From learning sign language to learning to sit up to learning to crawl and to someday learning to talk and walk, he has to pour every single ounce of himself into it and we try to do the same. The pride we feel as parents is beyond any love that I ever imagined possible. I wonder what Ms. Coulter's parents think about her approach to the world right now?

As Ellen Seidman writes on her blog Love That Max:

Most people would never call a kid with cognitive disabilities a "retard" to his face (and if you are a person who would do that, step away from this blog and go search for your soul). If you wouldn't say the word to my child because you know it's offensive, you should avoid using it elsewhere, too. Either way, it's demeaning.Either way, it hurts my child.

As disgusting and hateful as Ms. Coulter's remarks are, I am in awe with the response that others in the entertainment industry are tweeting and as Joey's parent and as an advocate, I thank them each for using their voice for good and not evil-- as reported on E Online:

"@AnnCoulter You disgust me," tweeted Sophia Bush. "That man is the president of this country. (& I'm sure all of the disabled children in America appreciate you.)"

Comedian Patton Oswalt also responded,posting, "Ann Coulter died of prostate cancer in 2002. Her Twitter account's a sentient emu skeleton with a swatch of eyelid skin stretched over it." He later added: "If Ann Coulter's calling the President a 'retard' it means he won/is going to win. She's our un-pettable Punxsutawney Phil."

Holly Robinson Peete also spoke up, writing: "As a mom of a son with autism the words Retard or retarded are like nails on a chalkboard. A lot of people say it benignly esp kids...So when a grown woman deliberately uses it publicly over and over you just have to wonder if there is a chip missing ya know?"

Singer Michelle Branch tweeted as well, saying, "I don't care who you are. The "R" word is so absolutely disgusting," and Oscar winner Marlee Matlin noted, "Despite our differences, it's NOT ok to use the "R" word. Consider millions of developmentally challenged Americans. It's just UNBELIEVABLE."

Glee star Lauren Potter, who, like her character on the hit FOX show, also has Down Syndrome, tweeted, "Thank you to everyone who has taken a stand against the R word tonight!"

What I think is most powerful and is the best response to Ms. Coulter's hateful comments is what Special Olympics athlete and global messenger John Franklin Stephens wrote in response to the tweets on the Special Olympics site:

John Franklin Stephens

The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night's Presidential debate.

Dear Ann Coulter,

Come on Ms. Coulter, you aren’t dumb and you aren’t shallow. So why are you continually using a word like the R-word as an insult?

I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.

Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.

Because, Ms. Coulter, that is who we are – and much, much more.

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.

I have to wonder if you considered other hateful words but recoiled from the backlash.

Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.

No one overcomes more than we do and still loves life so much.

Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.

A friend you haven’t made yet, John Franklin Stephens
Global Messenger
Special Olympics Virginia

EDITOR'S NOTE: John has previously written powerful opinion pieces on the R-word. Read one here.

With individuals like John Franklin Stephens, Tim Shriver and other advocates such as Max's mom, I know that we will change the how the world thinks and I know that we can make it a more accepting and better place to live in not only for Joey, but for you and I.

Have you stood up for anyone lately?

Eye Patching, Preschool Adventures and Running Out of Insurance Coverage

2012-10-02T22:14:00.002-04:00

October is Down Syndrome Awareness Month! It is also National Physical Therapy Month as well as National Breast Cancer Awareness Month.

We will celebrate by trying to do what is always our goal-- spread awareness, encourage acceptance and help create opportunities.

Eye Surgery- Part 2

It is probably time for a few updates. Super Joe's first eye surgery was July 2nd and the surgery seems to have greatly corrected his extreme head tilt back, which was the goal of the procedure in which two eye muscles on each eye were cut and re-attached to a new spot. Since then we have had some unexpected side effects due to the surgery. Namely, Joey now no longer tilts his head back, but now tilts it to the right to try and overcome the extreme wandering/lazy eye that was a result of the first surgery. His little left eye just keeps rolling waaaaaayyyyyyy over to the left and somewhere into the his head. His right eye is doing great, but his left eye did not recover as we had hoped.

It is really hard for me to watch. Mostly because this was never an issue before. That being said, his very kind and skilled eye surgeon told us last week, "Look, this is my fault. The surgery caused his eye to wander and now we are going to try to fix it." This is not any kind of malpractice or litigious issue, instead it is just a risk of eye surgery. Apparently it is not uncommon to have to go back in once, twice or even a few times.

My husband was the first to notice that they eye had started to seem to wander. Then we noticed that Joey stopped pulling himself up. The next thing that happened is that he started just putting his head down in the middle of the floor and putting his head in his hands. This happens anywhere from 10-15 times a day for varying amounts of time. His teachers at school also noticed and were concerned that maybe he was tired.

What we have learned is that he is working so hard to try and control that left eye, that his mobility has been affected and it is causing him some pretty severe discomfort. Thus, to give himself a break and re-group, he just puts his little head down.

His next eye surgery is scheduled for Friday, October 26th and in the meantime we are supposed to patch his "good" eye every day for an hour. The first few days I cried because I just felt so mean, but gradually we are getting the hang of things. He lasted for only 15 minutes the first day, 45 minutes the next and we are finally up to an hour. He is such a tolerant little man. God bless him for his patience and sweet disposition.

Tommy said he wanted to be like Joey.

Simply Thick

Next week we are going in for a 3rd Modified Barium Swallow Study (visit here to learn more about swallow studies)to see how Joey is doing with his dysphagia and aspirating on thin liquids. He has now been on the Honey Consistency of Simply Thick for two years (almost to the date). A little over a week ago, the FDA issued a new warning about the use of Simply Thick in infants. There was a warning as well as a recall last year, but up to this point Joey has been very successful using Simply Thick. This has been a tough call to make. We do not believe he is in any danger, but it is time to get another swallow study and try to come up with some strategies to eventually get him off of the thickened liquids. We still pay for Simply Thick out of pocket because of our insurance refuses to cover it, so it costs us approximately $300 per month. It will be nice to say "ciao!" to the thickener at some point.

Preschool Adventures

If you had told me that when Joey started to attend his two day a week "2's" preschool program that he would immediately make a friend and have the time of his life I might have doubted you. I should be ashamed. Preschool is where the action is for Super Joe. He is having the time of his life and he yells and wails on Monday, Wednesday and Friday when we drop off Tommy and he doesn't get to stay. However on Tuesday and Thursdays, I carry him to his class room, drop him off and away he crawls without a second's hesitation or a backward glance.

His little friend comes immediately up to him and squeezes Joey's cheeks in his hands. It's amazing. Then I saw his friend's mom and she told me how her son kept telling her about his friend Joey. Incredible.

What has also been incredible is his teacher's willingness to go the extra mile to learn about Joey and how to help him adapt to the various activities. We walked in today and the director of All About Kids signed, "More cheese, please" to me and I almost cried right on the spot. She said that Joey's teacher has taken the sign language very seriously and has been helping to teach the other teacher's some signs as well.

The tears are pretty much a guarantee on most days and I told them I promise I will try not to cry every single time I am there, but every single time there is something that is so overwhelmingly amazing to me that I can't help.

Our amazing coordinator from the county and the Community Partnership for Inclusion met me out at the school last Thursday with one of the wonderful physical therapists and they brought a gait trainer for Joey to use at school to help give him an opportunity to be on the same level of his peers during parts of class. It was so amazing and as with most of our Joey experiences somewhat overwhelming and emotional.

Tommy sticks by Joey's side until he has deemed the situation "a-ok".

The Gait Trainer has been awesome. Look at that smile. Look at this little love bug standing up to the water table to be with his friends. What was most amazing is that he actually moved his feet and kind of "walked" a little in it. I wish I could properly express how much effort and work and time we have put in to try and help Joey learn to walk. To learn to use his feet. I massage his legs, feet, arms and hands every single night to try help "wake up" his neurotransmitters and to help provide feedback about his extremities and how to use them. To see him so motivated that he wants to try and walk to a table is simple incredible.

From the staff at All About Kids to the team at Help Me Grow and Summit DD-- we are seeing our dreams of Joey learning independence and of him having friends and adventures and it is one of the most overwhelmingly amazing and incredible feelings. To go from being pregnant and not knowing if he would make it and not knowing what it would mean to have a child with Down syndrome to seeing him develop into this spirited little boy is such a journey in such a short time.

Running Out of Insurance

Well, it finally happened. With four months left in the year we maxed out on our speech therapy, occupational therapy and physical therapy. All of them. All at once. Oh my.

What do you do? Well, we are appealing it to our insurance company. We are trying to seek additional coverage under the Affordable Care Act with the argument that since necessary treatments cannot be limited under the ACA, Joey's therapies cannot be limited to the number of treatments the insurance company has deemed for him.

While the good fight goes, we pay. We pay and we pay and we pay. And it is worth it. We have an AWESOME team of therapists and they are worth it. Until we hit January 1st we pay approximately $1200 per month out of pocket for his private therapy. Gulp. I honestly wonder how many families do it. How do the working moms do it? I quit my job just so I could take Joey to all of his appointments and therapies. How do families make it when they have medical costs that are equal to a second mortgage?

We are also applying for some funds at the hospital. We do not meet the requirements for financial assistance or for BCMH, but there are funds available at some hospitals, so if you are going through this, be sure to call the financial counselor at your hospital or therapy center.

And in the meantime, I try to "sneak" in therapy anywhere I can. Wrestling with his brother hits a lot of our PT and OT goals. We do a lot of our feeding and speech during snacks and meals and we also doing the eye patching during meals. Bath time also gives us a good opportunity to work on balance and coordination. It's all about being creative.

Our Little Troublemaker

Maybe it's turning 2 or maybe it's going to school or maybe it is incredible lightening quick army crawling, but whatever it is, Super Joe has kind of become a bit of a sneak....and we LOVE it!

It started the night I was trying to get them ready for their bath and walked in the bathroom to see a pile-- literally a pile of clothes in the toilet. Not his clothes either-- his brother's clothes. Huh? How did this happen? Joey? Seriously??? This has lead to needing to keep the toilet lids down at all times and the bathroom doors closed because Joey is obsessed with water and will go to extreme lengths to get the opportunity to play in it.

His other favorite things to do are to take the dirty dishes back out of the dishwasher...

And finally, he loves to take out all the Tupperware and bang it around on the floor just like his older brother used to do. It is the sound of angels to my ears.

Happy Down Syndrome Awareness Month!

What have your little ones gone through and survived? Was it harder on you than on them? Anyone else trying to work around insurance restraints? Any tips?

Cowgirl Up!

Moms Always Know - Happy Mother's Day!

Pneumonia, A Hole in Our Heart and Eye Surgery #3

A Hole In Our Heart

Eye Surgery #3

You Knew You Were Having a Downs Baby and You Didn't Terminate? How to Respond to Rude, Crude and Crazy Comments

"You knew you were having a Downs baby and you didn't terminate?"

How to Respond to Unhelpful Comments: Top 10 Comeback Lines For Individuals With Special Needs

We Take Care of Our Own, #JUSTICEFORETHAN

TWITTER RALLY TONIGHT! #JUSTICEFORETHAN

What happened? Why are we uniting?

How to Rally!

TWITTER HANDLES

Do You Remember When You Left Me? When Siblings Have Surgery.

Jesus Cried Out For His Father, Robert Ethan Saylor Cried Out For His Mother -- Please Help!

"My God, my God, why have You forsaken Me?"- Matthew 27:45-46

Robert Ethan Saylor Cried Out For His Mother

And Now The Down Syndrome Community Cries Out For Justice

National Down Syndrome Congress Demands

Independent Investigation Robert Ethan Saylor's Death

ACTION NEEDED!

World Down Syndrome Day 2013 - Celebrating Inclusion, Acceptance and Education

World Down Syndrome Day 2013 - Celebrating Inclusion, Acceptance and Education

Just Like You - Getting Ready for World Down Syndrome Day

Brown Syndrome - Rhymes With Down Syndrome

World Down Syndrome Day: One Week Away!!! March 21, 2013

Just Because I Have Down Syndrome Doesn't Mean I Can't Hear or Understand You

Why the R-Word Hurts Super Joe

If You Could Take Down Syndrome Away From Your Child's Life, Would You?

Other parents and grandparents feelings.

Happy Valentine's Day! How Betty Jean Taught Me the Meaning of Love

HE DID IT!!! JOEY SAID MAMA!!! VIDEO EVIDENCE!!!

What was that you just said, Joey????

Teasing mommy...

At last!!!

If you could take away Down syndrome from your child's life, would you?

The Rest of the Story: An Article Examining All Sides of The Today Show Segment About Prenatal Testing

PARENTS CRITICIZE WORD CHOICE

Blog goes viral

Advice for Today show

Mr. February and Is It Wrong To Publicly Celebrate a Prenatal Diagnosis That Your Child Does Not Have Down Syndrome?

Is It Wrong To Publicly Celebrate a Prenatal Diagnosis That Your Child Does Not Have Down Syndrome?

"We're Safe, the Baby Does Not Have Down Syndrome" & My Break-Up With The Today Show

Pros and Cons of Prenatal Testing

Super Joey's 2013 Hospital Visit & A January Full of Ickiness

The Ethics Of Therapy For Children With Down Syndrome - Breaking Up Is Hard To Do, But Getting Dumped is Worse

What Does Santa Know About Down Syndrome and Remembering the Angels

Remembering the Angels

Different, But Not Less

Learning to Stand on His Own Two Feet: Strategies For Learning to Stand

Ann Coulter Speech Cancelled After "Retard" Tweets

Piers Morgan Rattles Coulters' Cage

Eye Surgery #2

Joey's Eye Surgery: Take Two

Mean Girl - Ann Coulter and Her Obsession With Using the R-Word

Eye Patching, Preschool Adventures and Running Out of Insurance Coverage

Eye Surgery- Part 2

Simply Thick

Preschool Adventures

Running Out of Insurance

Our Little Troublemaker