Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, January 20, 2011

I wish I knew others

I wish I knew others who had brought home older kids who had Down syndrome.

Axel tries VERY hard to talk. I mean, he focuses on my mouth and tries SO HARD to immitate the single vowel sound I'm making, and you can see the tiny little muscles around his lips quivering, and out comes not even a close approximation.

And then other days he immitates both consonant and vowel sounds in isolation pretty well.

But putting it all together for speech is just not happening. Today we started his school assessments and they're all like, "But he's only been hearing English for 7 1/2 weeks. Give him time!" But they haven't seen kids with DS who are adopted before. They don't know what happens when the child stops hearing their native language, and how QUICKLY they learn the new one. (it is amazingly quick!)

So yeah, he's only been home a short time, that theory is true to a point,  but I've also seen other kids repeating more words. They can at least repeat them, even if they don't know the meaning. Axel is not able to even repeat them. Even first words, like "shoe", or "more", or "eat". He is not able to say ANY of those words. Well....really by two months out from adoption his native language should be GONE from most of his memory. There is usually a period of time where there is almost no language, then by 3 months or so their new spoken language STARTS to take off. (though it can still be years before they are fluent.)

He also wasn't speaking Serbian either. I'm told he only had a handful of words, and those were only rarely understandable to people outside the family.

Today his hearing was tested again, and again he tested in normal limits.

I'm so confused. I don't get it. What does apraxia look like? Years ago I worked with a student (46 chromosomes) who had severe apraxia and has ZERO speech at 6 years old. She was like Axel, picking up signs very fast. I worked with her during summer school to help increase her sign vocabulary.

Axel seems to learn signs just as fast. Show him one today, and he'll remember it forever. (he may not produce it, but he remembers what it means and understands it receptively) But teach him how to say, "mama" today, and it's gone two hours later.

What does auditory neuropathy look like?

Axel DOES have six words he can say. "Thankyou" (gang kooooooo) "bye", "hi" (Haaaaa ee), "pee", "no"(prounounced  "ngo") "down" (pronounced "gown")

I'm having a really hard time with this and I don't know why. If he had a hearing loss, it wouldn't bother me because there is a reason. But without a hearing loss....well....now what?

The other problem is the school district. If he had a hearing loss, it's MUCH easier for me to push for the placement I want for him that will help him increase his sign vocabulary and language skills. But without a documented hearing loss, he'll be limited to a classroom aid who knows some signs. Yeah...Axel will be bypassing that person VERY fast, making that type of service very limiting for him.

I did get the name of a SLP who specializes in processing disorders. I'm going to call him tomorrow and see if he can do an assessment.

I just don't know what to do with this. I really, really don't. My gut says there is more going on but we can't find it. It is hard to get services for something you can't find, especially when they're saying, "give it more time."

5 comments:

Kathleen said...

We adopted a 7 year old from Colombia who had hemiparesis and seizures as a result of meningitis. It took me months to convince the special ed team that he needed speech. His speech was unintelligible in both English and Spanish, but they kept wanting to wait. Three years later, we are seeing progress, but still have a long way to go. As professionals involved in special education, we both know how to advocate for our children and still it is hard.

racheal_stewart said...

I haven't adopted,and Henry is only 5, but I feel your pain. He has next to no speech, normal hearing and is picking up signs pretty quickly. He knows more than I do, but we are limited to signing time videos at the moment. He has many SLP's in his life all telling me to wait, it will come. He's 5. Everyone else I know is talking or at least has more than a handful of words. I'm looking at a "life skills" class for kindergarten which does not make me happy. But I know that he will not succeed in a classroom unsupported. Apparently my school district is black and white. He has come a long way in the 2 1/2 years he's been in pre-school, but isn't kindergarten where real "academic" life begins? I don't want him to miss out on the ABC's and 123's. Sorry, I'm rambling.

Molly said...

I don't know, but here's a link to Schuyler's dad's blog. http://www.schuylersmonsterblog.com/ She has a rare speech disorder and I think there are a lot of people who have children with speech issues that read there. Thought someone might be a good resource for you?

Tamara said...

I always think back to a conference workshop I was in that Libby Kumin gave on speech. At the time she was convinced that kids with DS have apraxia instead of just "it's just Down syndrome". Over the years I've heard a lot of parents struggle with that diagnosis.

The thing that I heard that made the biggest impact to me, though, was that if a child has apraxia, typical speech therapy is pretty much useless. If a child doesn't have apraxia, but you use apraxia strategies in speech therapy, you still see progress.

So, it always seemed to me to be a logical choice to proceed with speech therapies based on an apraxia diagnosis even if you had difficulties getting that diagnosis.

Not sure if this is all still right, but that's what I heard at one time, and it seemed to make sense.

Kathie Brinkman said...

did you have the ABR hearing test done today or something else? the best thing I can tell you is to pray for insight. God knows what the specific issues are, keep asking Him to show you. And Leah, you are one of the most intuitive moms I know so trust your gut. Keep seeking solutions until you have peace about this. I know you won't settle for less than the best for Axel. Keep seeking!