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.