I never imagined I'd be asking health care professionals for their permission to take their pictures and put it on a blog.

When I said, “Seriously, we’re not talking about anything else until you take your meds.” I realized there are so many things I say in the typical (haha) week that I couldn’t fathom saying before I was a special needs mom.

Like, “Put down that dead bird! You should never, ever, lick a dead bird! EVER!”

“We do NOT tease each other about our speech issues, got it?”

“Fine. Then I will drop what I’m doing right now and come and get the prescription.”

“You grab and hold her and I’ll do the shot. No matter what, do not let go and for sure watch her head, she got me last time with it.”

“He drew a picture with fire and a gun. Game over.”

“Should we just give him the antibiotics we have in the cabinet.”

“Fine. Just eat a grape for dinner.”

“What do you want for dinner? A, B, C, or D?”

“So basically I’m cooking 4 different meals making me a short order cook. Okay.”

“Grab the E.R. bag, it’s in the closet.”

“I heard a weighted blanket could help so I don’t care how much it costs.”

“They were both approved for a Make-A-Wish wish.”

“It’s school calling. It’s your turn.”

Oh, how the list goes on. One thing about parenting kids with differences is that I’m rarely shocked anymore when a parenting challenge or health challenge smacks us in the face.

What are the things you couldn’t imagine saying before you had this life?

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Thanks to site sponsor, Build-A-Bear!

• Take her meds every day
• She would agree to get up before school every day and let me help her do all of the hygiene and grooming steps she thinks girls who feel pretty and good about themselves do
• Do both things even though she things they are stupid and/or won’t make her feel better

She fought it. She sat on her bed and told me it wasn’t going to help, she was just going to be unhappy for the rest of her life, and she didn’t want my help and this was just some scheme to MAKE her take help from me.  I stood my ground. I told her I didn’t care if she didn’t want to do it.  I didn’t care if she was mad at me. She was going to do it for 30 days, like it or not.  I even pulled a play out of my mom’s old playbook and told her that in my house she’d do what I ask, period, or there would be consequences.  She turned up her nose, whined some more, and, the next morning, she got up and whined through my standing over her while she brushed her teeth and I combed and styled her hair.  She whined and complained every morning the first week of April.  It was torture. Her school bus comes at 6:30 in the morning, so to get through the complaining and get her ready for school meant we were up trying to be civil to each other at 5:30.  My husband Tom was placing bets on whether I’d be able to stick it out an entire month.

On April 10 I ran late, and dragged my butt out of bed at 6 AM.  It had been rough going so far and I was not looking forward to having to rush The Girl through everything I was sure she hadn’t done because I wasn’t breathing down her neck.  I was halfway down the hall when she stuck her head out of her room and said, “Mom, I’m not sure what to wear with this shirt. Can you help me decide?”  I stood paralyzed, still halfway down the hall, wondering if I was awake or still asleep and dreaming.  Tom nearly fell out of bed.

She asked for help.  Unprompted.  

The rest of April was practically a dream.  We played with different hairdos in the bathroom mirror before school each day. She asked about different eye shadows and squealed with delight at the realization that mascara comes in lots of fun colors.  She asked for a purse for her birthday.  More importantly, she tells me about her day, every day.  She’s eating. There’s no drama.  Last weekend I seriously considered checking her room for a pod.  The Girl turns 17 in May.  30 days ago, I was convinced we’d never be able to get through to her and make her realize that having a family is a good thing before she turned 18.  It’s only been a month, but I’m feeling a lot more hopeful that we’ve finally found the magic combination to help her learn to attach.  Wish us luck.

Worse, however, are the ones you SHOULD have seen coming, but didn’t. Because you were careless, or complacent, or stupid. Because you failed to do your job, the one job that truly matters.

My daughter had a choking incident yesterday, one that we’d been warned was possible ever since she was diagnosed nine years ago. She had a choking incident, a bad one, bad enough to leave her crying for a long time after and nervous for the rest of the day. And she had it because she tried to eat something that was forbidden, something that has always been forbidden for her to eat because of the choking hazard it represents, something identified as dangerous since she was first diagnosed with polymicrogyria.

Something that I gave her.

There are so many things that we watch for in protecting Schuyler. We try so hard to help build a successful school experience for her. We plan for the future, make plans to move somewhere with a good public transportation system so that one day she can live independently. We watch for seizures, wait for them to turn ugly. We try to teach her to be a good person, which for Schuyler is the easiest thing in the world since she does actually possess the biggest heart of any human being I have ever known. And we protect her from the things that can hurt her, including the foods that her condition makes it very difficult for her to eat without choking.

But the things that make us the most vigilant are the ones that are ever-present, and for Schuyler, choking is one that doesn’t come up very often. Part of that, hopefully, may be a lessening of the choking hazard as she grows older and continues to develop. But her success probably has more to do with the fact that she self-regulates and stays away from the things she can’t have.

As she gets older, however, Schuyler grows less patient with her disability, and is more determined than ever to be just like everyone else. That now includes eating things that she’s not supposed to have. So I would love to say that she snuck something behind my back. God knows that probably happens a lot, although after yesterday, perhaps not so often anymore.

But no. She asked me if she could have this food item, and I said sure, because it had been forever since she’d choked, and it seemed harmless enough, and I was complacent in the face of her monster. And her monster made her pay for my bad judgment.

I sometimes feel like a failure as a writer, and as a public speaker and advocate, and God knows I’ve had my personal failings as well. But nothing feels quite like failing my daughter, failing to keep her safe, giving her the very thing that could have taken her from me. I’d give just about everything I have to make this the last time I fail her like this.

I’m not sure why I’m writing this here tonight. This space is supposed to be about sharing something useful with you, something you can take with you and improve your own lives. Instead you get me, trying to exorcise my own monster, the monster of failure. It’s a big one, this monster, and its teeth and claws sink deep. And if you’ve ever felt that monster’s bite, then I guess maybe you understand how I feel, and we can just sit here and murmur sympathetically to each other, and then go about our day a little wiser, and a little more aware of the dangers.

Mostly, I just wanted to tell Schuyler that I’m sorry, terribly sorry for letting her down.

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Please visit site sponsor, Build-A-Bear Workshop’s blog.

So here’s my favorite items of the week from Support for Special Needs!

New Members
Let’s meet two new members. First, there’s Noreen. She didn’t leave much information, but feel free to drop by her page and say hi! Also, you have a chance to meet Heather. She’s the mom of three kids from open adoptions. She blogs about the experiences and helps lead an effort to support open adoption bloggers.

Support Groups
There were a couple of activities in the support groups this week. In Autism Support, Ev posted a question about travel this summer and shared a link with tips about travel for autism families.

Also, the Organizing… Specialized group continued its discussion on ways we simplify tasks for our kids so they can remain a part of an organized house!

It’s a short and sweet summary! I hope we can all jump in and add some thoughts on topics and meet new members soon. Have a great week! Also, don’t forget… If you’re a special needs professional, there are ways you can get involved in this site. Be sure to read up on it. We look forward to talking to you and everyone else here!

Do you know where that is? Yeah, I didn’t either, but now I do. I’m told from the family that Champ visited that it’s a close drive to anywhere I’d want to go, which makes me what to go there!

Champ’s visit was a double adventure because the family took him on vacation to Hungary. He was visiting Hana, age 12, but ended up hanging out with Hana’s sister Neza and their cousins. Trips out to eat, to sightsee and more. Champ was around to help Hana with medication too.

Be sure to go read about Champ’s adventures on Build-A-Bear Workshop’s blog. They are sending Champ around the world to share stories of families touched by special needs and we think that is pretty special. Champ is making kids around the world smile.

That’s why I don’t initially share that Zoe Amanda has cerebral palsy. They won’t be able to see it right away, like they can see the white blond hair or soft blue eyes of our other daughter, but like Jocelyn’s descriptors, Zoe’s diagnosis is simply an attribute. It’s not who she is.

I used to blurt it out. Sometimes it made sense to do so, like when people inquired about the speed of her adoption or the referral coming before the home study. (Neither would have been possible in the absence of special needs.) Sometimes I just wanted to let people know before she arrived, so that they can wrap their minds around that now and be free to simply rejoice with us when we bring her home.

And, to be honest, sometimes I mentioned her diagnosis because I’m a chronic oversharer. It’s a pesky symptom of my socialmediaitis.

My husband doesn’t tell people about her diagnosis. To him, it’s relevant to our immediate family but irrelevant to anyone else. He just wants them to know her face and our timelines and the excitement surrounding her adoption.

She is only six months old now, and we’ll be bringing her home next month. (Hooray!) Given her age and given the absence of any visible signs of her diagnosis, we’ll continue to figure out this whole diagnosis disclosure thing as we go along.

How about you? How have you handled sharing your child’s diagnosis with others? Has that changed over time? (Remember, I’m a newbie to special needs parenting, so I’d love any advice you can offer!)

____

 Shannon blogs about her family and life in general at Dinglefest.com, and she writes TheWorksofGodDisplayed.com (and tweets about it here) to equip churches to welcome people of all abilities. 

1.       It gets easier – the idea of raising a child with special needs (special needs being an umbrella to medical challenges). There’s no time frame on when it will feel normal. But it will. It’ll feel your new normal. That’s not a new concept, but know the timeframe is different for everyone. Respect your partner’s pace and their own way of dealing with the new normal.

2.       You will have bouts of sadness for a long time. But slowly, and at a pace your own heart can handle, the bouts of sadness will decrease. And there will be days, even weeks that you won’t cry from a broken heart. One day you might even forget you had a broken heart.

3.       That the capacity to bear bad news grows. Really.

4.       You are the gatekeeper to the kids’ medical care. When I was holding the itty bitty baby in my arms going to those first few overwhelming appointments, it just didn’t occur to me that I was the one that would need to keep the doctors and nurses on a schedule of testing and monitoring. You will need to call, remind, keep calendars of every test your child will need. You will often tell the doctors’ staff when and where and how.

5.       Keep every piece of paper pertaining to the medical records of your child. It will make your life easier if you get every piece of paper ever written about your child’s medical condition/s – as you go. That means following up with every doctor, evaluator, educator to get every lab test result, echo/radiologist report, and each note from every doctor. Specialists will send your pediatrician a letter after each appointment with them and they contain details about your child’s progress…sometimes things the doctor doesn’t mention and it’s also a good way to chart weight and height for baby books.

6.       It will ease some stress to have said paper in an organized format. What works for me is a binder with tabs that allow us to flip to a section at a moments’ notice. The reason this helps is because you will often need to refer to items when talking to doctors and nurses on the phone. If you ever need to file for medical financial assistance (or a charity’s grant) you will need to provide background on the diagnosis and it will save days and possibly weeks not having to backtrack and get them from several doctors. Bring binder to really big doctor appointments.

7.       Adding new specialists to your child’s Care Team. When there is a diagnosis for one thing it doesn’t usually mean one specialist. More than likely you will need to work with a team of several doctors. When you are adding a specialist it will save time and hassle to copy your child’s medical records and send ahead before your appointment.

8.       Consider setting an appointment with a developmental pediatrician. I wish I had known this during the diagnosis span of time with my first child. Our developmental pediatrician was an invaluable resource for me as a parent and advocator with our second. I found that he had the experience of knowing a broad range of children with all special needs from which to draw and helped me work through what should be normal for my daughter, given all of her problems and all of her meds. He and his staff were very helpful in us obtaining early intervention services offered by the state to assist us.

9.       It’s hard to record the journey. Be prepared that it will be difficult in the early days to record baby milestones, etc. in the baby book. I didn’t realize that it would be so hard to start the baby book not knowing how I should handle the sad emotions surrounding the birth (I didn’t know our first child had any problems until 1 year of age). It worked for me to jot down notes of milestones reached or write down things I wanted to remember and throw them into a box. I was ready to open the box about 20 months later. Because we received literally hundreds of cards, notes, emails it took some time to be ready to relive it all to organize them. I ended up creating one very long letter (I call it a Letter of Hope) by cutting out loving, healing, powerful sentences and words out of every note and card we received.

10.    Accept ANY help people offer. It’s hard to do, but accept the help. People won’t think any less of you if you take them up on their offer to let them know if there is anything they can do, I promise. It’s humbling and life enriching to let people help you. In some small way it captures what the human spirit is all about and reminded me about the pure goodness in people. People will want to feed you because that is all they know they can do, and it is wonderful. Ask them for anything that can freeze – because when the food bandwagon slows down it is mighty nice to pull out some soup and biscuits to heat up. And ask them to give you food in containers you don’t have to return – because you will not believe how hard it is to keep up with the little things in life – including the return of casserole dishes to the rightful owners. If someone asks you if there is anything they can do instead of bring you food…THINK OF SOMETHING. Or better yet, keep a list of things that need to be done handy. Go to the grocery store, mow the lawn, run an errand, buy and wrap that gift you need to send, go to the post office, take the car for tires, etc. You will be amazed at what people will do for you. You’ll be able to focus on your child (or older one) because for a period of time you will be spread thin. It is a wonderful gift to be the recipient of such kindness, but I’ve been told by those that bestowed these gifts of time and love on us, that they were, indeed, the ones on the receiving end of blessing.

 Originally posted on Kidneys and Eyes, circa 2005

Be sure to visit site supporter Build-A-Bear Workshop’s blog.

It was an innovative program, with maybe half a dozen parallels across the country. It was the subject of the final chapter of my memoir and subsequently served as a model for similar classes in various parts of the country.

This week, I learned that as of next semester, the Plano Independent School District will be discontinuing the program.

This wasn’t a huge surprise, to be honest. A few years ago, when I met with the district’s director of special education, it was clear that a philosophical change was occurring. It wasn’t that the district wasn’t supporting the use of AAC technology in the classroom. Quite the opposite appears to be the case. When the AAC class was begun in 2005, it contained a dozen students, with a handful of others scattered throughout the district. At the time of my meeting in 2010, there were about eighty AAC users spread out among the schools of the district. I can only imagine what those numbers would reflect today.

So why was this class discontinued? Parents of special education students see it all the time. With changes in special education administrators come different philosophies, and implementation of those philosophies can feel arbitrary to those who have been functioning under the previous system. Also, Plano’s AAC classroom was expensive to maintain, not just in materials but also in its extremely skilled faculty and staff. With a change in administration and a new commitment to a more fully realized concept of inclusion, the decision was made to support the one or two AAC students on any given campus within the parameters of their own curriculum rather than expanding the AAC class on additional campuses to accommodate the growing AAC student population. The special educators on each campus would be expected to support those students and their AAC devices. Specific support from a traveling assistive technology expert would be provided as needed.

I must confess, I have mixed feelings about this. On one hand, the program really was remarkable. I still get email from teachers and speech language students who have read my book and are interested in learning more about how the class works. The biggest advantage that the class offered wasn’t a pedagogical one. The primary benefits were social, providing a safe environment where these kids could learn and communicate in their own weird little way without self-consciousness. Anyone who has worked at all with children and AAC technology can tell you how implementation will succeed or fail largely on how enthusiastically the user buys into the concept in the first place. Getting past the social stigma of using a speech prosthesis is not a small hurdle.

At the same time, I understand that it might have been unsustainable. And I also am intimately aware that the technology may be moving far too fast now for a concentrated classroom program to keep up. When we informed Schuyler’s IEP team that she would be switching to the iPad next semester, we were informed that the school district wasn’t yet supporting the use of iPads as speech devices, primarily because none of the apps were actually developed by speech language professionals. (This is in fact entirely untrue; I believe that pretty much all of the most popular and respected AAC apps were created by those professionals. Well, of course they were.)

But the honest truth is that none of the teachers Schuyler worked with this year were terribly familiar with the technology Schuyler was already using, and as a result, she actually rarely used it. Her ability to make herself understood verbally was seen as progress, and adequate to most of the tasks she needed. Ultimately, I think that was an error in approach, robbing her of a level of nuanced and detailed expression that she’ll need to recapture next year if she’s going to make it. That will come, I believe, and it will do so with new tools, regardless of the levels of official support.

Ultimately, I think the AAC classroom program was one that could have been a much greater success than it turned out to be. But to do so, it would have required an exponential growth that might have been financially unfeasible, and also a much greater flexibility in regard to new technology. I hope that similar programs across the country will be able to solve those problems, because I still believe that the philosophy behind those programs is sound. And I feel pretty confident that it made the difference in my own daughter’s life.

New Members
Patricia joined this week and says she has a nine year old who was not diagnosed properly. Take a moment to drop by her page to say hi along with Miranda who also joined the site this week.

Support Groups
It was also a slow week for the support groups, but as usual, the Organizing… Specialized group continued to chat. There were some good thoughts on the question, “What basic tasks do you simplify for your child?” Feel free to jump in and join in on the chat.

And of course, you can start your own group or jump into any group and ask a question. There are SO many smart and knowledgeable members who can contribute. Have a great week everyone!

Since that How To post I’ve had to take my daughter in to see him for an unscheduled appointment because of strep and a UTI (which is fairly serious in a kidney transplant kid) and my son for a scheduled well visit. I was a little nervous. It can be nerve wracking beginning a relationship with a new doctor and team and hopes were so high.

I’d prepared myself to have to learn the ways of the staff and processes and I’d vowed to be patient while we get to know each other. I knew as we hit “firsts” with them in caring for the kids together we’d have some bumps. I knew I’d have to explain and be patient while they “learned the ropes” of kidney transplant recipients and their unique needs in relation to regular and not-so-regular pediatric needs.

I have to admit my shock to how they have handled the few items. Growing cultures and testing for UTIs without asking, approaching an infection with an appropriate treatment and it with it not working, our new doctor immediately said he wanted to call the transplant team. Again, he did this without hesitation and without me asking. He handed two referral forms for specialist before we left his office.

In leaving the office a few things struck me about the differences between new pediatrician and fired practice. The old practice had a lot of doctors and more layers, which of course means more time to get answers and help. It appears the new doctor handles his own paperwork, based on him handing the referrals — as I’m sure he recognized the shock on my face, as I said, “Now, what is this? Oh, wow, eh.” Our old practice would have made me call the next day and leave a message. He spent nearly an hour with us for the well visit and had great input on a couple of issues. The office is completely electronic. There’s an online appointment, lab and email system. The new office seems to want to take things off TO DO list and the old practice certainly added to my list.

I am stunned at how long we settled with what we were used to with the old practice even though it wasn’t the greatest, but I didn’t know it could be several levels better. We settled for so long and it’s easy to see that now. It feels strange to be on this side, an easier side of something that has been challenging for so long.

I’m guilty of settling. I’m guilty of it because there are so many other things to deal with that changing something when it’s not completely broken seems like so much energy and time, which is something in short supply. Sometimes it’s worth it, and that is something I need to remember.

What other things are we settling on?