Sunday, July 14, 2013

Amazing > Apraxia

Most of the time I think I have a normal life.

I have been blessed with a hard-working husband and 2 beautiful kids. We have so much to be thankful for.

Everyone has struggles. That's part of being human.

Being a mom is a hard job though.

Being a mom with a child considered "special needs" is pretty rough.

I realize there are parents who have it much harder than me, but I'm not into the whole 'my kid has more issues than your kid' because that's not really important. We all have our own battles and struggles and, like all parents, we just want the best for our kids and want them to have the world. There are times I can't imagine how hard other parents have it and I don't envy them.

I've been thankful that William does not have a disorder or disability that is very obvious. When we're out and about nobody would ever notice that my son has Apraxia. Until more recently.

William has worked so incredibly hard to get his speech to the level it is today. Additionally he has put in effort and tears to overcome all of the areas where his is affected -- gross and fine motor skills. We still have a long way to go. I'm proud of him and he is becoming more confident in what he can do and how he can interact with people.

Now when we go places Will gets excited and starts to tell me about things that interest him in our surroundings. For the most part I understand him. But when he's excited he becomes a little loud and he starts to talk fast, and stutter, and jumble his words together, and become repetitive. Usually I try to tell him to slow down and will then repeat back to him what he's saying so he can clear up his words. I get a lot of stares. Strangers will look at my beautiful boy with alarm in their faces like, "oh my goodness... what is WRONG with that child." For the most part I ignore them... but other times I want to grab and shake them and tell them that this little boy is amazing - that he is brilliant - that he is building confidence - that he can FINALLY express himself and share what is going on in his mind!

Can you imagine? Knowing exactly what you want to say but can't get it out?! You know when you have that word that you just can't get out of your mouth for some reason? William is dealing with that constantly. How frustrating that world would be.

Will's SLP (who is awesome by the way) has been working on basic conversation skills. The other week at therapy I had tipped her off to ask about our recent trip to the movie theater to see Monsters 2. It was the kids' first time going to a movie theater and was kind of a big deal to them. Jessica asked him about where he went, what he saw, what was it like, what was the best part... trying to get him to talk about something. Will was having a hard time finding the words. He knows that I'm usually his translator for people, but especially at speech therapy I won't translate unless the therapists are really having a hard time.

It nearly broke my heart when Will then walks over to me, grabs my hand, looks up at me and says, "Mommy, you talk uh me."

"You want mommy to talk for you?"

"Yeah"

I look at the therapist who has a loving, but sad look on her face. And I look down at William and say, "I'm sorry buddy, but no. You need to talk to Ms. Jessica."

"But I no wanna talk uh Ms. Je-i-ca."

Heart wrenching.

But like I mentioned earlier, he is becoming more confident. On several occasions I've seen him walk up to an adult, tug at their sleeve or hand and say, "Hey! I uh-tok-in tah you!" (Hey, I'm talking to you!). Then he'll ramble on about something (usually light bulbs) with a lot of gestures.

I still don't understand his obsession with light bulbs and lights in general.

Side story here: Funny enough, last night when I was trying to settle the house before bed I hear William walk out the back door as he had just discovered lightening bugs from the windows. He. Was. Thrilled. I've been trying to point them out forever, but tonight he finally saw them. I caught one and showed him how it's just a bug and he was overjoyed to watch them fly around in the yard, flickering their bright little lights.

Anyway, one of the things that makes life with an Apraxic child hard is that William looks like a normal little boy. We go out in public and the cashier, or one of the old retirees shopping at the commissary, or the gate guard, or a little kid will ask Will what his name is, or say hi, or ask a question and I cringe internally because I know one of a couple things will happen:
*he will not say anything
*he will answer very quietly and when they say "what" he will be silent and look away thinking they didn't understand him... not that they couldn't hear him
*he will take awhile to form what he wants to say and they either ask him again, ask a different question, or ignore him which flusters and frustrates him
*he will answer confidently but they not understand him (sometimes even trying to repeat what they think he said but it's wrong and he then gets frustrated, annoyed, and shuts down)
*he will look to me, then look down to the ground hoping I'll answer for him
*he will answer confidently and is understood.

Of those options, not many of them turn out very well.

On May 14 of this year it was the first Apraxia Awareness Day. There were a lot of things posted on the Apraxia support pages that I check on. One of them was the image below (from the CASANA site - which has a lot of great resources by the way) and I felt I wanted to share it. So much of it is true for William.
When I first read this I admit, I was pretty misty eyed. It was so perfect in describing William. The son of a friend who (after Will had been trying to play with them) came up to me and said, "I don't know what he's saying. He talks funny." Feeling a little hurt at the playground as I watch William being energetic from the outskirts of a group of kids playing because he doesn't have the language to say that he wants to play with them. The examples I wrote about earlier...

I always go back to the: It's not fair my son has to work so much harder at something most kids pick up naturally. But these are the cards we've been dealt and I'm trying to do all I can for William.

I may THINK I have a normal life, but I KNOW I have an exceptional little boy and I cannot wait for him to fully find his voice!

2 comments:

  1. The invisible struggles can be so hard because people choose to think the worst of your child when they don't respond to questions or maybe they are difficult to understand. If only we could make it all better. Good luck on your journey!

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  2. I hope William gets the chance to read this when he grows up and see how much you love him and how proud you were of him. It's hard sometimes to translate that to littles. I guess that's one of the benefits of writing it down, it will be around for awhile!

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