Wednesday, April 02, 2008

Apraxia Update

I have to admit, I really had planned to post about homeschool today. We've been doing some really fun things this week, and I also had some free (such a nice word) site links I wanted to share. But that will have to wait til Friday.

I've noticed (according to my site traffic reader) that I am getting some hits on my Childhood Apraxia post that I posted in January. Which made me curious. So I checked Google (I'm like their biggest fan) and typed in to find blogs about Apraxia; only to find that I'm near the top of the list...due to my 1 post on the subject? Think about that for a minute.

And while you do, maybe I should give those of you who have no idea what I'm talking about, but might want to know, a link to that post here. Sometimes I forget I need to do things like that:)

In some ways, we've made so much advancement with my daughter in this area, that it has somewhat gone from the forefront of my mind to the back burner. In some ways.

Then there are times I start worrying about next year when she will be in 1st grade and it will really be noticeable to the other kids that she has this speech defect, however improved from the beginning it may be. And when I see her sing with a group of kids and know that she can sing the song at home, only slower, so her brain can wrap around the words and connect the sounds. But in a group, especially when singing fast songs, she just can't begin to process it.

But then I think of all the many ways she (and we) are blessed. I'm able to stay home with her and work with her using techniques we've learned. We have an absolutely wonderful and highly qualified speech therapist (whom she adores). And we have a great support system.

We've been attending the same church since about 5 years before my daughter was born. It is pretty much our whole social life, other than extended family. There is always something going on there. Which also means my daughter has been around many of the same children there since before we even knew she had a problem.

Which reminds me: that's actually where we started to realize there was a problem. I would drop her off at 2-3 year old class each week. We had noticed she wasn't talking much, but I've never been a great worrier of whether my kids were exactly on target for each little growing thing. And some older women had even suggested to me that she didn't talk because "her brother's do all the talking for her", not meaning it in a bad way at all, just that it's sometimes that way for younger kids in a growing family.

But then I started to notice that when I would go to pick her up, which was usually an open play time, she would be off playing by herself. Not exactly in a wallflower way, just a disconnected way. The teacher said that was normally what she did during that time.

So we eventually had her tested (including a hearing test) and much of that is in my prior post.

I am starting to notice a little exasperation in other children when she's trying to talk to them and it doesn't make any sense to them. Our little neighbor girl often looks at her and says "I have no idea what you're saying!. She prefers to play with my middle son now (she's the same age as my daughter). It bothers me a little (I'm only human, and a mommy at that) although I know she really doesn't mean any harm.

But then there is her little friend at church (actually a year older than she is) who can play with her for hours, and I never need to step in and translate. She works around the issue, and they just seem to be able to connect. She's like a little angel in disguise. I probably don't need to say that this little girl has a special place in my heart, as well as my daughter's.

And the adults at church really go out of their way to try to encourage me; there isn't a week that goes by, where someone doesn't stop me to tell me exactly what she said to them, and how well she said it, LoL. I'm chuckling about that because they almost overdue it... but it brings tears to my eyes that they care that much. She runs from person to person there, chattering away to them. She feels secure and cared about there.

Which brings me to this: having a support system makes a big difference. Before we had some of these things in place (especially the speech therapist) I felt that I was drifting hopelessly in this area, that I was literally helping to set my child back in life.

I am sometimes concerned that some people might think that I shouldn't make such a big deal of the speech thing. That atleast my child is healthy (which she is) and has no other issues to deal with.

And then there is the fact (which I've learned by experience) that most people don't understand that there is a difference between delayed speech and childhood aphraxia. And they have to be dealt with in different ways. We wasted 6 months in a speech class because we didn't know this. And the delayed speech specialist who taught the class didn't catch on until we brought it up to him.

Would you believe that I owe it to Google that I finally hit upon my daughter's problem? I finally in desperation went to my computer and, with tears of frustration I admit, determined to find out why my prescious little girl couldn't clearly express the words that she wanted so desperately for me to understand.

And now I will correct myself: I clearly owe it to God. For leading me to the information I needed to move forward; for giving my husband a new job (at the time) with insurance that pays a big lump of a fairly exspensive speech therapy bill ($113. per visit) ; and giving us a speech therapist who, after teaching at a renowned medical college all day, really doesn't need to leave open a Thurday evening slot to work with our little girl. And for the people who are cheering her on.

I want to leave a link here to the site that opened my eyes to my daughters speech condition, it's called Apraxia kids. Their motto is Every child deserves a voice.

And don't panic if you're new to the knowledge of your child having this communication disorder (to be technical). Knowledge is power, though it may discourage you at first. But don't let it keep you down. Be your child's best advocate. There are avenues available, it's just sometimes hard to find them.

And if you need someone to talk to about this subject, or someone to point you in a helpful direction, I volunteer. Feel free to use the comment section of my blog.

I'm not a specialist on this subject. I'm just a mommy who wants her little girl to be able to reach her potential in this area. To whatever level that may be, I can be content with it, as long as I know I've done my best to help her on the way. That makes me pretty special to her.


Marva said...

And what an inspiration you are! Thank you for shedding some more light on this interesting subject. Many blessings!!!

Mrs. Darling said...

Shes a sweetheart!

Lori Garbarino said...

Good Morning,

Thank you for visiting by Blog, and Leaving such a wonderful comment, It really means so much, I just read through your latest post and I am very interested. I will definantly be back.
And just a note of encouragement,
Your children will speak of you the way I speak of my Mom,for one your Banner says it all, and you cant read your posts without hearing that you are fully present in your babies life! and I can hear they are the breath that you breath.

The Lord is so Good and he knew just which Mommy to send them to.

I look forward to getting to know you.


Lori Garbarino