Hope for Logan (New Research into Non-Verbal Autism)

Non-verbal Autism Research Highlighted at IMFAR

(via Autism Speaks Official Blog)

I won’t go into the individual studies, but the IMFAR highlighted research into non-verbal autism by Autism Speaks grant recipients. The bottom line? Studies are showing that non-verbal kids are capable of understanding far more of their world than given credit for.

As the parent of a child who is non-verbal, this doesn’t tell me anything I don’t know. Yet, the implications are that the research results might lead to further study and development and possibly therapy techniques that will work with these unique kids.

That is a big thing.

And this is why …

Meet Logan

Logan playing with water

From a recent drip to Disney, Logan enjoyed a chance to play with the water, stimming on the stream of coolness as he de-stressed.

Logan, my 6-year-old little charmer, has apraxia – a neurological disorder that makes it hard to for him to associate words with actions, or to express words even when he knows what they mean. It’s more complicated than that. But, similar to his autism, I tend to consider his apraxia another lock on his brain, making it difficult if not impossible sometimes for us to communicate with him.

Signs don’t tend to work, or communication boards. It’s a tired game of intimately knowing and understanding what the few sounds he does utter mean to him, and of decoding the way he acts. He has recently just started dragging us to the desired item, or patting it. I feel this desire to communicate is something we can work with – we just haven’t unlocked the language of Logan yet.

Consistent and intensive speech therapy has helped Logan in the past, but the results themselves weren’t consistent, and we had to fight for any of the therapy to be covered. These days, I wonder if we’ll ever hear him speak beyond the approximations of our names he has gifted us with (His brothers are “dee” for Andy and “bee” for Bobby, while Daddy sometimes gets the closest approximation. I lag, I guess, because he doesn’t attempt my name often, though I still get the occasional “mee” for Mommy).

We’ve occasionally heard him say ‘ball’ and other words, but never with consistency. He used to sign “more’ and “eat” and “drink” but we have to use hand over hand guidance to get him to do so much of the time now.

When his seizure activity increases, we tend to lose ground, and sometimes we don’t gain it back. It’s a constant battle for Logan’s attention, health, and desire to communicate at all, and sometimes I wonder whether we will ever gain some type of consistent, ongoing language with him, ever. And if not, what? If we can’t get him interested and consistently using sign, and he doesn’t seem to understand pictures (he’s shown some limited success at school, but again, nothing we see consistently).

I won’t give up. We still work with him every day to make some kind, any kind, of progress. Maybe we’re looking for the clear and stated when the understated is where we can see the evidence of his understanding of the world around him. Logan understands what we say, sometimes even responds to it. He understands many things. It’s clear when he reacts specifically to something we have said.

The Importance of Due Diligence, of Research, of Hope

These things cannot be overstated. Parents like me, like my husband, we need to see that others are as desperate and eager to find answers as we are. There is hope in the act of researching, and when there is evidence that research is paying off, there is more than hope. There is this idea that we are vindicated.

All the times we said Logan was in there – we just had to find a way to reach him. We were right. Not just because we are his parents know him so well, but because there is research that is proving us right. No, we don’t need this research to tell ourselves to keep trying. But we can point to it when others don’t want to.

♥Kat

What does research like this tell you? Does it give you a new feeling of hope or does it even register in your world of parenting a special child?

Non-verbal Autism Research Highlighted at IMFAR By Leanne Chukoskie, Autism Speaks In 2008, Autism Speaks kick-started research in the area of non-verbal autism through its High-Risk High-Impact initiative. This year at IMFAR, Autism Speaks-funded research was featured in the Invited Educational Symposium titled Characterizing Cognition in Non-verbal Individuals with Autism: Innovation, Assessment and Treatment. Geraldine Dawson, Ph.D., Autism Speaks’ Chief Science Officer, chaired the session … Read More

via Autism Speaks Official Blog

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Filed under Autism, Family, Mothers, Parenting, Research

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