CCHD Kansas City

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We're taking our daughter there for an 'intake' this afternoon. My daughter is still having trouble with expressive and receptive language. It is improving, but there are also behavioral issues and anxiety, for which we will NOT drug her for. I'm not about changing her personality, but trying to find the tools to help her cope easier in social situations and learn to find the words. I suspect a speech issue developing from not being able to get the words from her brain to her mouth. Sometimes she is coherent and other times she speaks a foreign language and she will repeat syllable for syllable this foreign tongue, and we still have no clue. For her, it may sound legitimate and we acknowledge it's language, but we have NO clue what she's saying. Anyway, that and some of the coping issues day-to-day, which change and such are obviously things that will be worked in over time, but will give you a report on how we go today. I know there are a lot of parents that are in the newly 'diagnosed' club with their kids and we're in the KC wider area (hour away), so hoping to be able to share some positive stuff instead of just asking for guidance from you wonderful people.

Our daughter is attending a special ed program at an elementary or primary school nearby and she is enjoying it. It gives her socialization with other kids in her age group that we cannot, since we don't know anyone that has kids her age.

We took our daughter to CCHD today. It was informative, to say the least. It appears during this time our daughter was confirmed as being on the spectrum. What I found useful was that the doctors looked over the IEP (individualized education plan) for our daughter and determined that it needed to be written with consideration for autism, which it previously had not been. So, I'm not sure how that's going to affect what's happening at pre-k special ed, but they introduced us to other things, which I'm not really sure about.

There's the autism waiver, which could be beneficial for getting behavioral therapy (in terms of funding it) - although I still don't really understand it. To me, it's sounds like we're seeking permission for her to be different. There's an online program (free) called OASIS, which offers online video instruction and strategies for parents or caregivers to I guess, help modify behavior.

We made it clear from the outset that while the neurologist we saw last year suggested a drug to calm the nerves, we were concerned about the ramifications of that in an emotional, physiological and psychological sense. It may be beneficial for some, but our kid's only 3, and I think it's a choice one has to consider and determine if the benefits will outweigh the potential side-effects. Hubby had concerns about how a drug might affect her developing brain. Mine was more about the instant side-effects and whether it would become something of a crutch. For us, it is better to wait and see until she has understanding and decide for herself, if she hasn't already overcome some of her stressors by then.

The doctors did indicate things like stereotypical speech or atypical speech, and that she needed a good level of support. So, some mixed answers, but the main thing is we want to make sure we're heading in the right direction and figuring out ways to help our child reach her potential and succeed in life as she seeks.

Apparently, Medicaid doesn't cover Applied Behavioral therapy or analysis (at least in Kansas, not sure if that applies nationwide), so I guess we'll have to figure something out. I guess that's what the waiver is for.

Anyhow, over all the experience was good. Our daughter who does not care for 'strange adults' (meaning ones she does not know) warmed up quickly to the first doctor, had little to do with the second, but the first was the important one. It was positive. But then, she'd just had her minor melt-down shortly after I'd started filling out the paperwork before the appointment, so perhaps she'd gotten over the shock of being in a different and new place. Never knew how big a hospital could be!

If anyone in the KC area is wondering about CCHD, I'll do my best to answer the questions. It's just nice to know you're kind of on the right track sometimes. It's hard to gauge when this is your only child.