Friday, January 11, 2008

Childhood Apraxia

The baby of our family is five years old and referred to as the "princess." I personally consider her a miracle, as I (as well as my Doctor) really didn't know if she would make it through my difficult pregnancy. But after six months of my being on feeding tubes, multiple pic-line IV's, 4 blood infections, and countless hospital stays, she came into the world. We were thrilled.

When she was about three-years-old it became pretty clear that she had some kind of a speech delay. It wasn't that she didn't talk- she did. But it was complete gibberesh. The one word that could be recognized was "Mama". (That's my girl!) So we started the tests.

Her hearing was fine. She was speech delayed, and we needed to put her in a special class. It just so happened the little gradeschool down the road had a once-a-week class, and so we promptly started taking her there.

But after six months I questioned the Teacher: "She doesn't seem to be making any progress. I mean, she actually interacts more than most of the other kids in the class, but her speech is still the same. " To which he replied "Oh, you noticed that too?" That wasn't exactly what I wanted to hear.

My daughter is a beautiful, energetic, bubbly little girl. And I'm completely unbiased in my opinion of that- just like any other parent:) I am so thankful that she is healthy, and that she has no severe disabilities or issues due to my pregnancy. I was on several medications while pregnant with her, including one used for cancer patients to control nausea. It really came down to the lesser of two evils.

But what mom doesn't want their child to go smoothly through life without hitting any bumps in the road? And this could turn into a big bump.

So I started researching the issue of speech delay online. And that's how I found Childhood Apraxia.

Childhood Apraxia is a motor speech disorder. A child with apraxia has trouble (to varying degrees ) programming and planning speech movements. The words we speak have a definite sequence of sound and syllable that must be ordered together. For most of us when we talk, it all flows together without a thought. But children with apraxia cannot access these speech motor plans/programs.

Well, I finally had my answer. My daughter wasn't getting better because she wasn't the typical speech delayed child. I had mixed feelings about this. I felt like I had something to work with now, instead of just worrying about her lack of progress. But with this new diagnosis came the knowledge that we were looking at possibly years of one-on-one speech therapy.

So we started the search for a speech therapist. About this time, hubby started a new job. It wasn't great pay, but it did have excellent insurance. And it just so happened that there was a man who took appointments two nights a week at our little local hospital. He is a teacher at OHSU, and works with failure-to-thrive and severe speech delayed children. He came very highly recommended. God definitely had a hand in this!

So, at almost 5 years of age, my daughter was finally getting the help she needed. When she started, about 7 months ago, she could say about 5 words that people in general could understand. She could not say even a complete phrase, let alone a sentence.

Now she can say so many things, including "I love You". It thrilled my heart the first time she said that! We still have a long way to go, but it feels so good to be making progress.

To people that don't normally interact with her, it's still extremely difficult to understand alot of what she says. But family and friends see the improvement. I try to ignore the occasional person who says "I can't understand anything she's saying. Why can't she talk normal?" Some just pat her on the head and say "that's nice honey" to whatever she says. I know they don't mean to be offensive.

She is learning sign-language to help with communication with others, and we work at home on various techniques. Her Speech Therapist is very pleased with her progress.

It is because of this that I now find myself homeschooling her for her first year of school. My pediatrician said the public schools aren't equipped to deal with this type of speech delay, and I know she would not get the help she needs at our (or any) Christian school. So, for atleast the next 2 or 3 years, I will be her teacher.

I really don't mind this, as I love getting to spend the extra time with her; and I won't have to worry about her getting lost in the shuffle, so to speak. I'm also homeschooling her 2 older brothers, and we co-op with another homeschooler 2 days a week.

So that is our journey with Childhood Apraxia so far.

11 comments:

Marva said...

Thank you for sharing your Princess' story with us. I had never heard of this before. My 21 month old twins are learning sign language. We also use a speech therapist for their delay. Blessing on your sweet family.

mykidsmom said...

Thank you Marva. I think it's wonderful that your little ones are learning sign language, and that you're starting them at such a young age.

mykidsmom said...

Mrs. Darling, all systems are up and running. Thanks! (Now stop pestering me- Lol)

Alexandra said...

I'm coming over here from your comment...thanks for visiting. I've got two speech delayed children. One who is pretty much normalized with speech(boy, age 10) and my two year old girl who seems to have the same issues.

What a wonderful Ped. who recognized that the public school system is not equipped to deal with sort of delay! No one in my area recognized this, and I had to navigate and come to this conculsion on my own.

I'm so glad she is doing so well. I know for my son, the turning point was age 6...he finally began conversing in very short sentences. He was found to be two years delayed at age 4....very few words, and little understanding of words.

MyKidsMom said...

Thanks for stopping by Alexandra.

My daughter's speech therapist recently told us that we should see our biggest breakthrough in the next six months. I'm trying not to expect too much, but it IS encouraging news. As is hearing from someone who's been there with their own child, and has seen improvement.

Aubrey said...

Hi!
I have a daughter who is 7, and we did not qualify for services until she was 5, either. For the first year of services, we really did not get what she needed. Our new SLP is awesome, though.
My daughter wasn't able to say I love you until she was 5, either...
We are homeschooling her, and she is doing great. We have been using 100 Easy Lessons for her reading, and she is on 43, and reading some things by herself.
She STILL is a bit hard to understand... but, her pproximations are getting better, and she has neighborhood friends who come to play with her everyday, so that is great! She is one happy little girl, so I feel very greatful to homeschool her. :)
Anyway, I just wanted to say that improvement will happen, but it will take a lot of time. :) We are not sure when she will be understandable by most, but she is getting better at ordering at restaurants and talking on the phone with relatives. :)
Have you tried fish oil? That, along with the right kind of ST has been the best thing for her. :)

Good luck!

SpeechTherapyMom said...

Hi Stephanie,

Wow - what a journey you've all had. Congratulations on your daughter's success with speech therapy!

I did link to your site from that article I wrote on sign language and speech apraxia. MyKidsMom sounded familiar, but I just couldn't place exactly where I had a link to you.

Thanks for the wonderful comments on my blog.

Tami
http://speechtherapyweb.com

Debbie L. said...

Hi, thanks for sharing your experience. It is so encouraging to hear of others in a similar situation. My son, who is almost six, has severe apraxia and also low muscle tone. He receives a lot of therapy. He attended an integrated, public, preschool for the last two years. This year he attends a pre-k at a Christian school. I am considering homeschooling him next year for kindergarten. Can you give me any advice on how to answer people, most of whom say: why don't we just put him in the public school where they are "qualified" to deal with special needs kids. It is so frustrating!!! Also, there is nothing wrong with him mentally, socially, or academically. Also, are there any sign language programs such as a dvd set that you would recommend? We do a little with sign, but want to do more. Sorry this is so long, I would greatly appreciate your input if you have the time. God bless, Debbie L.

Anonymous said...

I have a daughter who was diagosed at 2 with Apraxia and is now 15. We homeschool with WAVA and she is having a very difficult time. What programs do others use and is there any special homeschool that works with Apraxia kids through their high school years?
Thanks
J. Ashcraft

Anonymous said...

I was on both Kytril and Zofran while pregnant. I always wondered if that was related my son's apraxia and other issues.

Anonymous said...

Wonderful excerpts of life as parents of children with Apraxia... I too am looking for a reliable easy to learn curriculum for my child entering Kinder. I will not send to public school because they are not given adequate instruction & my child does not need the added stress of being ridiculed for speech. Is now in a Christian pre-K & am very satisfied with progress, but no Kinder program...