Monday, October 27, 2008

A smile is worth a 1000 words

This past week I noticed something and its really been bothering me
I am surprised I hadn't really thought too much about it before, but after being around other children all week it dawned on me.
I was laying in bed in the hotel, while everyone else was asleep (Lonnie and Daniel)
and I thought "wow, Daniel doesn't make much sound at all" compared to the other kids,
and I cried for a long time.

I cried because I will never hear Daniel speak. I might hear a word in his language every once in a blue moon. I will most likely never get to have a conversation with Daniel unless he is using his augmentative device. It's not that he doesn't form words, he doesn't even really babble too much. Some days he will, then it might be days again before he does.

When we are in between babbling days I wonder if he is sad. I wonder if he understands he can't talk. All this wondering makes me feel incredibly sad for him. Will he ever be able to verbalize to a girlfriend that he likes her? Will he ever be able to tell me he is scared and if so what of?

Daniel doesn't make the sounds that a normal child of 3 makes, nor does he make the sounds of a younger child very often. He can do it, I've heard him.




He watches my mouth when I talk, he does try to form the words, but his brain just can't send it to his mouth.

bilateral perisylvian polymicrogyria = SUCKY CRAP! This is what causes Daniel not to be able to speak, and no matter what therapy or how hard I pray or try, will I be able to fix the brain malformation. Why does he have it? Fluke? God playing a mean trick? there will never be an answer, but I will tell you it truly is heartbreaking because I know there is so much in this little boy that needs to be heard. I mean its crappy enough that his body doesn't work for him, but he also doesn't have a voice. How many people in his life are going to just ignore him because he can't be heard? Because they can't understand him. Because they feel he isn't worthy of anything because of his disability?

I get all bummed out about this when its quiet in the house, and then tomorrow will be better because I get to wake up and see this
and I know that I will always hear Daniel, and anyone that has a heart will be able to hear him too without him ever saying a word!

10 comments:

Justinich Family said...

Ok, Melanie I totally cried reading that post. I can totally relate, I feel the same about Evan. He says a few things such as ought oh, or ya but that is pretty much it. I wish on a daily basis that I could have a conversation with him, I would love to know what is in his head. It is so frustrating to realize it is not just a delay it is probably something that will be the same for the rest of their lives. I hate to think of what experiences or people he will miss out on because of this. But I guess they will really be missing out on Evan and/or Daniel whatever the case may be.

Melissa said...

Can't type...tears flowing...just want to squeeze that cute kid of yours :)

Erin said...

Oh, Melanie, I just want to give you a big hug right now.

You know, I can totally relate to your mind racing at night when everyone else is asleep. I feel the most anxious about Fletcher and his future when I am at work or otherwise separated from him, but when I am with him, it all seems less overwhelming.

claritee said...

I hear your sorrow and despair. We all go there from time-to-time.

The important thing is that Daniel learn language now. He can always learn to speak later. But without a foundation in language, its very unlikely he'll ever learn to speak.

Check out this presentation by Dr. Janice Light:
http://www.aac-rerc.com/pages/news/Light_webcast.htm

She has one on literacy to:
http://www.aac-rerc.com/index.php?option=com_content&task=view&id=136

You will be amazed when you see one little boy with CP who doesn't even have full head control but knows his alphabet.

I went to one of her talks this summer where she talked about a 5 year old with Down's Syndrome who was entering Kindergarten fully literate (after being in her program). The Kindergarten teacher couldn't wrap her head around the fact that the most literate child in her class was the one with Down's Syndrome. LOL.

Christy Brown (my left foot) learned to read and write in the 1930s and our kids have so many more technological advantages.

He was successful in every sense of the word. He got married, and had a successful career as a novelist.

With the Internet, now its also very easily to make or maintain romantic or friendship connections through writing.

I don't know where you're located, but consider getting Daniel on the wait list to get assessed by Dr. Janice Light's clinic (Pennsylvania State U.). He's at the perfect age to start a language and literacy program.

take care,
Pamela

Jessica mommy to Alex/ RTS said...

The doctors also told us that Alex may never speek.
What a very honest post....Thanks.

Mel said...

Oh Melanie, Bless your heart! I too have had the same heartbreaking feelings recently and then "the smile" melts away those fears. Daniel has and will continue to touch many people in ways that traditional language can't.

Anonymous said...

jeez mom kinda sad. oh but you've got to be kidding me if you think that child is quiet! he does nothing but laugh and squeal all the time! daniel doesnt need to talk to express himself or communicate he does it all with looks. :)

Bird said...

That is soooooo wonderful! Charlie has been a fairly silent kid as well. Actually, now that we've started chest compressions I've realized that he makes these long, drawn-out sounds that he doesn't usually make.

Daniel is an amazing child and that smile is a heart-melter. Really, you have to see him in person to get the full effect. I have no doubt that Daniel will make himself heard one way or another.

Teresa said...

Hey, there, we just started ABR last April. I'll add you to my list of blogs I read. Hope you see great things soon!

Teresa

BabyPaxson said...

oh sucky, I can totally relate. Especially to the part about being able to talk to a girlfried, it kills me to think that Paxson may not have those experiences and fall in love. The docs told us he wouldnt walk or talk either... and I hate them for that.
So I focus on the day to day and pray that if we do things right, he'll be a lady killer yet! I know Daniel will be right there with him... or ahead of him. He's a doll

oh ps, I always laugh inside when friends/co-workers complain about their kids talking back. I always think when Paxson starts talking he'll probably get away with everything because I'll just be so happy to hear his words... whatever they are.