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

Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
Katrina Moody

Latest posts by Katrina Moody (see all)

  • http://www.alexlaybourne.com Alex Laybourne

    Hi,

    My son (who is also called Logan) will turn three this coming Monday (19th December) and he shows so many of the same characteristics of your son. Non-Verbal, not really affected by the use or signing or picture cards. He drags us everywhere to get things he wants and gets very frustrated when we don’t understand him. He too has said some words in the past but not on a regular basis.

    It is quite spooky how your description of your son matches him.
    It was good to read this post, comforting for me that we are not alone. We are now busy trying to get the official diagnosis for my son. Once we have it, we are on a solid footing to help him develop to the best of his abilities.

    Thank you for sharing this post with us.

    • http://katscafe.org Katrina Moody

      Logans of the world unite!

      I’m always astounded when I come across someone describing a characteristic that so perfectly matches that of one of my boys. Especially Logan … they are all characters but Logan, with his additional challenges and triumphs, has always seems so very much one-of-a-kind.

      And while that is true, sometimes these amazing children are really so similar it makes your heart ache with the familiarity of it, the thought that someone else out there understands so much about what you are going through because they can describe it so well … I’ve felt that when others have talked about their kids before and remember the comfort in knowing that others have walked, and will continue to walk, this path that sometimes seems so difficult. Being able to give someone else the connection, that affirmation that someone out there truly gets it … makes me so very glad.

      And how amazing (and yes, a little eerie *grin*) that our sons share the same name and so much of the same disposition. I love that — our rascally Logans! Come back and let us know what you find out about a diagnosis and feel free to drop me a line on FB or Twitter (or Google+) if I can help in any way!

  • http://travelwisconsin.us Tracyann0312

    Hi! It is very hard to be a mother of especial child. Although my son doesn’t have any kind of needs like that, but I always treat him with special care due to his G6PD disease. I really know how sad it was for you to see your child like that Katrina. Just pray always maybe for the next generation, they will give you again good research about autism.