Friday, August 29, 2008

Believe in him with me....

It's Friday night and my son has just finished crying himself to sleep. I am still trying not to cry. Those of you who know KC's sleep habits know that he rarely cries himself to sleep, but things are different now. KC cries a lot. He screams when I drop him off at daycare. He cries when he wakes up in the morning. He cries himself to sleep, and he cries if I insist that he eat his yogurt somewhere other than the couch. He cries if I won't let him have more than three macaroni and cheese microwave dinners, because I am truly afraid that he is going to make himself sick by eating so much. And I cry because over the past month or so KC has changed in some significant ways that have led me (and others) to believe that KC is regressing into autism. Asberger's Syndrome, to be exact. I have always known that this was possible, even likely. Kids with seizures, especially IS have a much higher instance of autism than others. KC has been seizing almost daily lately. Kids with autism tend to have seizures more often so it kinda works both ways. KC has always had a few autistic tendencies, but in and of themselves they were not enough for a diagnosis, or even more than taking note. I always knew that there was something slightly different about him, but that could be said about many people. I also knew that if this was going to happen, it would likely happen near his 2nd birthday, if it hadn't already. I was just so hopeful that with all of KC's good luck that he would be ok. I wanted so badly for him to just be ok. And he will be ok, just not the way I had hoped. He has a lot going for him. He is verbal, social, and can make emotional connections. He will never be severely autistic, but to say that it will be mild might be over simplifying things. Many argue that there is no such thing as mild autism. But there is high functioning autism, specifically asberger's which is what I believe KC has. KC is extremely intelligent. He can count to 5, he knows the letter E, he knows a circle when he sees one, he can recite a few of his favorite books my memory, he remembers the tune to songs and can sing the tune. But he can't eat with a fork. He has days that he can barely walk with out falling. Lately he can't seem to stop tilting his head, and walking on his tippy toes. He is terrified of crib toys that move. He is my sweet, perfect, beautiful angle baby and right now I have that terrified feeling of wanting to scoop him into my arms and run far away from this. Of course I cannot do that, so I will once again gather the pieces of myself and do what I have to do to save my baby. I have begun researching the cassien free gluten free diet that seems to work wonders on some autistic kids. If all goes as planned, I'll start transitioning him right away. I'm going to research some things I can do at home regarding his behavior, and if need be I'll get early intervention in again. I don't even have to have him go through the official diagnosis process since he qualifies for services based on the IS. Of course he will have to eventually go through the official process, but it doesn't have to happen this second. I may take him in for an EEG, just because he seems to be seizing more and more. I'm going to research DAN doctors (defeat autism now) and see what I need to do to learn about chelation therapy and ABA therapy. And I'm going to try to keep myself together even though I feel like my world is falling apart again. Please pray for my baby. He's such a good boy, so sweet and so loving. I believe in my heart that his spirit will break through anything that he comes up against...I really do believe that. Believe in him with me, and believe that once again KC will defy the odds and will rise above whatever comes his way.

2 comments:

baby trevor's mommy said...

Oh Karen...my heart is just choked. Part of my wants to scream I'm so sorry...another part knows that our kids are who they are for a reason. And that they're our's for a reason. KC couldn't have a more loving & engaged mommy! More than ever I am convinced that he needs YOU...and that you need him! Over these past few months I've grown to love you & KC so much. And I just want to offer my support for you...even if it's just a measly comment on your blog. ((((hugs))))

...danielle

Mmmmaaahvelous said...

It's all I can do to hold back the tears as I read this post. My heart goes out to you and your babe.
Know that your cyber stranges/friends are rooting for your little one.
M