Our Crazy Life: 2010

Childhood Apraxia of Speech is a motor speech disorder, a neurological disorder where the child cannot plan and coordinate speech movements. Ever have that feeling of a word on the tip of your tongue, but you can’t quite say it? Or slip over a word you knew and could say in your head? Imagine every word you ever tried to say coming out like that – even though you know what they should sound like, the sounds never quite make it from your brain to your mouth the way you want to say them.

Well that is it. The thing that now defines our life. The thing that takes us to Iowa Falls 2x a week to see a private therapist. The thing that makes my son "special needs". Such a little word --APRAXIA-- that has turned our lives upside down.

It was so sneaky, no really rearing its ugly head until the age of 2, when we noticed Carter's speech development was falling behind. I, as a mother does, knew something was wrong but most around me were telling me it was normal, he was just being stubborn. Luckily we had a great family doctor who listened to me and helped me get the ball rolling. If anything this had made me more assertive. After 6 mos of the local AEA birth-3 program coming in 1x a week to work with him and seeing no progress I made my first move. They said it was too early to worry but I didn't care. I asked our doctor for a referral to a specialist. We wound up at the University of Iowa Hospital and Clinic. They agreed there was a problem. We got orders for speech therapy 2x a week. This is when Carter's angel entered the picture. His private therapist Denise. He has now been working with her 8 mos and he loves her. He tries so hard for her (okay so she bribes him with candy). He has made sooo much progress. That is progress for us, most would still be around him and think oh my goodness why can't he talk. But he has more than doubled his vocab and started to put two and three words together!!!

Here comes the difficult part.....

We still have family members that really don't accept this for what it is.

Can't you just work with him more?
He will talk when he wants
You can't file for disability for him it will label him for life.
You know there are so much worse things, at least he doesn't have a disease, cancer

We are currently trying to get a assistive speech device for Carter. We are waiting for out model to arrive for a 4 week trial. It is a speech generating device that has a touch screen. It has categories that lead to items, all picture coded. Long story short it would be a great communication device for Carter. Anyway, after the 4week trial we will find out if insurance will pay for the device.($3500). I was very touched this last week when a woman in my bible study (Carters disability and the device had come up in conversation) said if insurance didn't cover the machine or all of it she would like to have the church do a fundraising lunch after church one day to help raise the money. I was so touched I could have cried. Anyway, I told a very close family member about this and the response was--geez it seems like the church will have a benefit for anything these days. People are talking.--How was I supposed to take this?

I guess I have felt really alone in all this. Jason at least has come to terms with it now (he was in denial). I know my child isn't dying, or deathly ill, but it still breaks my heart to know that he will have to go through this challenge for his whole life. No one can predict how far he will come or what other areas (school) may be affected. He is so intelligent, a funny, and energetic and amazing. But I still feel guilty. Was it something I did? Could I have done anything more. What will his future hold? Will people be able to see past his disability and see him.

I had a friend tell me once recently "there is a reason we aren't going to have 4 kids, I have 3 healthy ones and I wouldn't want to risk having one with problems."

Broke my heart. I wouldn't trade Carter for the world.

I have other problems like how much do I talk for him, how much do I explain to others.

I recently have been thinking maybe I should get him an identification bracelet. What if he got separated from us, he can't even say his name, let alone his address or phone.

Ok so I guess I decided to do this rambling since I read that others think that it is a good idea to get things off your chest.

I finally ordered the necklace I wanted off the Apraxia-Kids website. There logo is a child reaching for a star with the saying--Every Child Deserves a Voice. I also ordered some of those rubber wrist bands. Funny I felt compelled to order 10. Silly I know, who else is going to want one. But it is important to bring Apraxia to the limelight. Although it has been around (mostly recognized in adults with brain trauma or strokes) it is just recently come to the forefront in the last couple years regarding children so fundraising is important for research. If I wear the bracelet than maybe someone would ask and then one more person would know. I am thinking of paying the small entry fee to be in the Hardin County Fair Parade. Maybe make up some small handouts with his story and info about Apraxia. We will be joining the 2nd Annual Walk For Apraxia in Des Moines in October. Even if just one person read the info and donated that would be one more person aware. I don't know what I'll do with the other bracelets. Maybe someone will want to wear one.

All I know is that he is my child and I will go to the ends of the earth and back to help him. Whatever help that may be.

Thanks for listening to my ramblings!

Brenda