Sunday, February 27, 2011

Apraxia

I realized I actually don't blog very much about Will and his apraxia. I talk about his therapies and what not, but not the actual difficulties we're experiencing.

Apraxia sucks. I know there are several developmental and other speech disorders that people deal with that can be very difficult... but I guess God didn't want us to work through that. He gave us a son with Apraxia.

Apraxia is not something William will just "grow out" of. This will not go away on its own. Working through to get some sort of understandable speech is going to take therapies and a lot of effort. Months and probably years of therapies and effort.

I finally bought "The Late Talker" by Maryilyn C. Agin, M.D., Lisa F Geng, and Malcolm J. Nicholl. This book is like the basic piece of information for parents with children who have Apraxia. There is also the CHERAB Foundation, which I'm beginning to get plugged into.

Anyway, I started reading the book and in the introduction, where Lisa Geng talks about the road to their son's diagnosis, I read this:

I remember being in a supermarket with Tanner when he was about two years old and he spotted a toy that he just had to have. Trying to tell me what he wanted in the only way that he knew how, he pointed and loudly kept repeating, "Mmm." An older boy who was watching turned to his mother, and asked innocently, "Mommy, what's wrong with him?" It killed me because it was the same question that was gnawing away at me. I wanted to wrap my son in a protective bubble and keep him from hearing such things. It made me determined to find out what was wrong with Tanner and what we could do about it.

That's all it took... I broke down. I know EXACTLY what that woman is talking about.

I have a son who will be 3 in a week's time and he can only say "mama" and "kitty" approximate "daddy" and must have prompting to get approximations of other words.

He can't tell me where he hurts.

He can't tell me what he wants.

He can't ask me questions.

He can't just talk to me.

And he knows there's something wrong with him. He's different. And he understands everything that you tell him.

Going through this whole thing has been draining and frustrating and emotionally challenging. When he was a baby and we lived in Japan I had no explaination as to why he wasn't learning to talk. We did Kindermusik and his 2 little friends (both girls) were born 1 and 2 months before him, yet they were beginning to talk. People would just tell me, "it's okay, he's just a late talker. He'll get it." I tried to be pursuaded... but as time went on and he still had NO words I knew something was going on.

Then I had people ask me, "well... don't you play with him? Do you talk with him?" ARGH! I can't believe people would think I completely ignore my child! I spent all day with him every day. He was my little buddy and we went everywhere together.

Once we got into Early Intervention here in New Mexico and his therapist, after working with him for a few months, gave me the diagnosis of Apraxia it was like this huge weight was lifted off my shoulders. It wasn't anything I did wrong. In fact, I was told that all the work that I did naturally and even the effort I put in to work harder on his speech was a good foundation and gave him some support needed to eventually learn speech.

So last night, as I read more of the book, I kept having mini-meltdowns over Will. Most of the information I have come across before so it wasn't anything new to me. I'm sure this time of the month isn't helping my emotions either. After Ryan got Will to bed he came and sat down and I let him know what I was thinking.

I feel horrible for my little boy. My heart breaks for him for the difficulties he has ahead and the hurdles he must conquer. Something that should come completely naturally, he has to work very hard on. People don't realize how bright and clever he is. Many people think that if a child can't speak they are stupid, which is totally wrong. Studies have shown that most children with Apraxia are of average or above average intelligence. I'm already seeing a wedge in his personal interactions from his lack of ability to speak. I see him go up to children playing and look at them and smile, wanting to be included, but the other children don't really take him in since he doesn't vocalize his desire to play with them. So the other children move on to play and Will stands there and watches... sometimes reverting to parallel play nearby or he goes off to play by himself.

It's not fair.

It is not fair.

And I know this will probably continue until he can express himself. And I hurt for him.

I can only give him all the love and support I have for him, but I can't fix this with a magic wand. It is not just going to go away.

We have a long road ahead of us. Right now I don't even know if Will can count to 5 because he can't say it and with his motor planning problem he can't show me either. I also am aware that children with Apraxia have difficulty learning to read and write later on. There's a lot more, but that's years ahead.

At this time we are focusing on what we can do... not what may be. We are in Early Intervention getting Speech Thearpy, Occupational Therapy and Hippotherapy. We're already in talks to increase the frequency of all these therapies. In the coming weeks we will be in talks with the public school system for his transition. We are hoping that with all the thearpies and work by age 5 he will be able to start Kindergarten normally and be all caught up or have very minor speech delays. But then again, that is a mere 2 years away and who knows what can happen in that time.

So this is a piece of what we're going through right now... in addition to the lack of eating issues. We have many, many more doctors appointments in the works as well as his therapies.

I'm really trying to not have Alanna lost during all this time. She is my little bright spot, my little spit fire. It really has been a blessing to see a child developing speech normally. I admit that at times I'm nervous and concerned that she will have problems... and then she does something amazing that totally puts me at ease (like repeatedly saying "mama" while feeding her last night).

Just keep us in your prayers. I try to stay strong over everything and maybe some people think that I'm not as concerned as I am... but they don't see what's going on behind closed doors when I just sit down and sob about what Will is going through and cry for God to help us get through this and heal my little boy.

I know there are many other people out there dealing with more severe situations and my heart goes out to them. I know how much of a struggle this is and how I feel so I can't imagine how those parents deal with worse.

Anyway, this blog got much longer and involved than I had originally planned so I'll sign off now. Again, just pray for us.


Photobucket

2 comments:

  1. You guys are in my prayers! You're doing great Mama! God chose YOU to be Will's mom...keep loving him, praying for him and advocating for him:) You have an amazing son who is blessed by your love.

    ReplyDelete
  2. Hang in there Sierra - you are a great Mom and I know you're working so hard with Will. I'm glad that they're looking at increasing his therapies. Poekitten is right - God chose you to be Will's Mom - you're just the mom that he needs. And Will is amazing. He and Sophie have played together when I have watched Will for you; we should get together now that everyone is over their illnesses. Praying for you guys!

    ReplyDelete