From your child with special needs: “Now I lay me down to sleep, I pray the lord to give me words to speak. But if they never come this way, let my mommy know everything will be ok.

Boy, howdy, did this one hit home. I’ve been thinking of it all day.

I knew when we trached Parker that it could and most likely would, muck with his ability to learn how to talk. When your kid is facing a slow death by an insidious disease, your first thought is keeping him alive, not if he’ll grow up to be the family motor mouth.

He can always learn to sign, I remember thinking. Just as long as he can communicate somehow.

Parker’s favorite form of relaying information is insisting that I read his mind. This has about a 40-50% success rate. It’s a strategy that is not only failing fast, but frustrating the hell out of both of us.

The iPad has opened an entire new world for the Hero. My First AAC is fantastic. But as with many apps, Parker goes to touch the screen and his touch isn’t strong enough to trigger the sound. Oh, he’s capable of it, he just likes to make me insane.

I purchased this book to help strengthen that pointer finger of Parker. He can pop every single ‘dot’ in this book. Put the iPad in front o him and that index finger goes all limp noodle.

Signs I know Parker can perform come and go at his sole discretion…….say if he’s starving to death. Or wants a new DVD or go outside.

A wonderful speech therapist comes once a week from the school district via their Home/Hospital program. It’s not enough. He needs more one on one with someone who knows what they are doing, with me providing the daily reinforcement. I’ve been working to see if there are other avenues we can pursue to get at least one more session a week.

Until then, I’m turning to the only other resource I can think of: ME.

Blurry. I know. He was being bounced on the ball.

I’m not ready to believe that words will never come to Parker. Though he may never become a great orator, just being able to communicate the basics would make this Mama’s heart soar, and then we could rely on sign an the iPad for the rest.

I’m regrouping. Rededicating. And praying for the direction and knowledge of how to engage Parker and make him interested in communicating.

Your prayers for inspiration would be greatly appreciated. So would any ideas you’ve successfully used in convincing your child of the importance of communication.

I have a paint brush shown in this picture. I quickly discovered that Q-tips were much easier to use.

I may have been too lazy to run downstairs to grab Parker’s art smock. I may have been really sorry I didn’t. This activity was a wee bit messier than I anticipated. Parker, the kid who once had to be begged to put his hands in to anything sensory, now wants to put his hands into everything sensory.

Then he wants to put those hands to his mouth. A habit I am working on breaking. I made sure that Parker had his speaker valve on so that if he got anything into his mouth he would have been much less like to have swallowed it into his lungs.

Yes, we do art projects with our suction machine sitting next to us. Welcome to the life of a kid that aspirates on his own saliva.

But I’ll be damned if that stops me from giving this kid every opportunity I can.

Take note of those hands. They are Reed’s hands. I love those hands.

These days as soon as I bring out the camera, Parker refuses to look at me. Trying to get that smiling face on film has become next to impossible. I’m hoping he gets over this quickly. It’s kinda breaking my heart.

The finished project.

We had to wait overnight for this to be dry enough that Parker could use it to trace his finger over the alphabet letters. I find that the more Parker can trace different textures the better his brain retains the information. I’m always looking for good texture activities.

You don’t have to keep your Snow Paint white. You can add a few drops of food coloring to the glue and mix it in before you add the shaving cream. I was going for a bright contrast with the white and super bright yellow.

We’ll create with Snow Paint again. Messy or not, this recipe is a keeper. I envision white snowflakes on blue card stock. Black (or gray) spiders on red. And maybe just a small sensory box filled with this stuff and some treasures for Parker to find hidden within the paint.

Somehow I forgot to turn the temperature of one pot down to low.

It burned. Badly. Totally black bottom badly.

Serves me right I guess for running around most of the time like my hair’s on fire.

I scrubbed and I scrubbed. There was no way I was throwing this pan away. Seriously. Cookware is crazy expensive these days.

After a long session of scrubbing and a cuss word or thirty, I finally had a brilliant idea. YouTube!

I can’t begin to count how many things I’ve taught myself from a YouTube video. You can even find tutorials on how to change a kid’s g-tube on that site. I should know. The first time I was here alone and Parker pulled his tube out, I panicked for a minute….forgetting everything. YouTube saved the day!

Because I’m such a great person (ha!) I’m sharing with you the secret of how to clean a burned pot without any cussing at all.

You are welcome.

PS: When she says to only use a DROP of the dish washing liquid….LISTEN TO HER. (ahem)

They shared with us the following essay, a response to Emily Perl Kingsley’s Welcome to Holland.  Now before  Ms. Rzucidlo refers to Autism.  I’m replacing that with Diagnosis, and because of it’s length I’m abridging it. Stuff in parenthesis is mine.   Apologies in advance to Ms. Rzucidlo.

Welcome to Beirut

“I’m often asked to describe the experience of raising a child with a diagnosis.  To try and help people who have not shared in that unique experience to understand it, to imagine how it would feel.  It’s like this….”

There you are happy in your life, one or two little ones at your feet.  (In my case there were six  at my feet….a couple actually taller than me.) Life is complete and good.  One of the children is a little bit different than the other, but of course, he’s like your in-laws, and you did marry into the family.  It can’t be all that bad.

One day someone comes up from behind you and throws a black bag over your head.  They start kicking you in the stomach and trying to tear your heart out. You are terrified.  Kicking and screaming you struggle to get away, but there are too many of them.  Bruised and dazed, you don’t know where you are.  What’s going to happen to you?  Will you (or your child) live through this? This is the day you get the notice, “YOUR CHILD HAS A DIAGNOSIS.”

There you are in Beirut, dropped in the middle of a war.  You don’t know the language and you don’t know what is going on.  (And your supposed ‘ally’, your insurance company has crossed over into enemy lines.)  “Life long diagnosis”…  Bullets whiz by.  “Neurologically impaired” ….”A good smack is all HE needs to straighten up”…

God has overestimated your abilities.  And there is nobody to send your resignation in to. You’ve done everything right in your life.  Well, you tried.  Well, you weren’t caught too often.  Hey!  (You’ve never even heard of an imperforated anus before….)  You look around.  Everything looks the same.  But it’s different.  Your family is the same.  Your child is the same, but now he has a label and you have a caseworker assigned to your family.  She’ll call you soon.

You’ll find some of the greatest folks in the world that are going through the same things you are, maybe on a different level, but a special needs maze all the same.  Taping into these folks is a great lifeline to help you get through the day.  You develop an odd sense of humor.

Every so often, you get hit by a bullet or a bomb.  Not enough to kill you, only enough to leave a gaping wound.  Your child regresses for no apparent reason, and it feels like a kick in the stomach.  Some bully makes fun of your kid and your heart aches.  You’re excluded from activities and functions because of your child and you cry.  Your arm aches from holding on to the phone while you are on hold with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child’s life with the stroke of a pen.  You are exhausted because your child never sleeps. (Or your night nurse calls off for the zillionth time)

But hope springs eternal.  And thank God for those who fought so hard before you.

Your child will make progress.  When he speaks for the first time, maybe not until he is 8 years old, your heart will soar. You will know that you have witnessed a miracle and you will rejoice.  The smallest improvement will seem like a huge leap to you.

You will know sorrow like few others, and yet you will know joy above joy.

You will meet dirty faced angels on the playground who will be nice to your child without being told to be.

There will be a few nurses and doctors who treat your child with the respect and care that any child deserves.

There will be people sent into your life who will show you concern and love like few others. (Thank you.  From the bottom of my heart, thank you.)

Knowing eyes will meet yours in restaurants (or hospital hallways) , and they’ll understand.

For those people you will be forever grateful.

Good times are still had, and because you will know how bad the bad times are, the good times are even better.

Life is good, but your life is never normal again.  But, hey, what fun is normal?

All this water I’ve been drinking should have flushed my system thin. I know I’ve been flushing something about a zillion times a day. Nope, it doesn’t matter if what seems like gallons of water all go in at the same time, that same liquid doesn’t come out all at the same time.

ahem.

I haven’t had any Dr. Pepper in a month.  It hasn’t been pretty, folks.

This is when I usually crank up the exercise to get things progressing.  Except my knee is a mess.  I have no idea why.  I  just woke up one morning and it hurt a bit.  A little while later and it now hurts a lot.

I can exercise one day.  Then by morning the pain is such that I walk all hunched over like a little old lady.  Let’s face it.  I might be old, but I sure ain’t little these days.

I used to tell myself that carrying all this extra weight around was the price of keeping a certain medically fragile kid alive.

My blood pressure at my last doctor’s appointment was 164/111.

It’s no longer about just keeping Parker alive.  It’s about keeping me alive too.

This being a Special Needs Mama is hard on a girl’s health sometimes.

It may also have something to do with refusing to be this fat come my son’s wedding in May.

You read it here first, folks.

I’ve thrown down the internet gauntlet.

Now to figure out what to do about my knee.

PS:  The bottle of DP in the picture above.  All Reed’s. While he’s cut back, he hasn’t totally given up the habit.    Yeah.  I’ve been THAT disciplined. Abstaining even with temptation at my fingertips.   Who knew I had that in me?

I was baptized in the Mediterranean Sea while my family was living in Turkey.  On the third time I was finally relaxed enough to trust that nobody was going to hold me down for longer than the mere moment needed, and finally they declared me baptized.

People are already starting to ask what our plans on for Parker and getting baptized.  This is a pretty personal question that any LDS parent (as well as members of other denominations) of a child with special needs/cognitive delay will answer differently.  There are no one size fits all answer.  The best answer depends on your family and your child.

For Parker, a kid who doesn’t even go to church because of his health, walking him down into a baptism font and then dipping him backwards under water would do nothing more than scare the beejeebers out of him.  Not exactly the most faith building kind of experience.

That’s where we are right now. I’m fine with this.  If Parker were able to grasp the understanding of what baptism means, things would be different.

My religion teaches that before Parker came to earth, his eternal progression had superseded mine.  He didn’t need to have the same experiences I need to have in order to return with honor to the presence of my Father in Heaven.  The Spirit tells me Parker’s role is that of a teacher, providing opportunities for our family to learn lessons we could have mastered no other way.

Parker’s life, as well as the lives of others born with disabilities provide all of us with the opportunity to show our true characters.  Something I believe God does pay attention to.

If Parker’s cognitive abilities where at the point where he understood the meaning of baptism, my feelings might be different.  Especially if he were in a church class of his peers who were also preparing for baptism.

There’s nothing that says my kid can’t be baptized when he’s older and understands more. My heart tells me that he’s already got a one way ticket into the presence of God, formal baptism or not.

The BBC Breakfast News is reporting on a young man with Down syndrome who has been denied his first Holy Communion because he lacks the “concentration” necessary to prepare for Communion, according to the BBC. The Diocese also said children can “only proceed to the sacrament of First Communion when they take part in the Church’s life and understand the Church’s faith”.

The parents are upset and feel as though their child is being singled out simply because of the extra chromosome.  Their son attends a mainstream church class with his peers who are preparing to receive their first communion.  They feel their son is bright, and while not able to grasp every nuance within the Catholic religion, does understand the meaning of communion.

You can read more at www.faithfulnews.com

Here’s the interview compliments of YouTube:

What do you think?  What are your plans for baptism/communion/other religious rites of passage for your child with cognitive delays?  Again, I don’t believe their are any right or wrong answers, just what is best for your child and your family’s beliefs.