Sunday, October 30, 2011

31 for 21 - Day 30 - Autism and Down Syndrome

Working on his oblique muscles!

We had to remove the Kinesio tape off of Joey's back the other night (you are supposed to take it off after 10 days or if it is peeling) and that was a nightmare.  It hurt him.  A lot.  It hurt me.   A lot.  Neither of us were better off for it and I am hoping that next time we will go the slower route instead of my idea of ripping it off fast.  I found out after the fact that slow and steady is a lot less painful than fast and furious.  I think I got overwhelmed.  It was a lot of tape.  When we were all said and done it looked like he had two tribal tattoos on his back.  He is now rocking the Kinesio on his tummy and we think it is working! 

Yesterday he was sitting and playing with toys and went to reach for a toy, which caused him to fold over in half.  Yes, in half.  My husband watched for a minute before swooping in (I've got a big problem with swooping in.  I need to work on it.  I always want to swoop in and not let Joey have any discomfort.  I'm not doing him any favors.  I'm going to work on this bad swooping habit).  Sure enough, Joey was able to pull himself all the way from a folded in half position to sitting.  This probably doesn't sound like a big deal, but it is a really, really big deal.  I can't explain what hypotonia(low muscle tone) is exactly or what it is like to have it,  but our therapists have told us that basically Joey has to work really, really hard at everything he does because he is constantly fighting gravity.  I've also read that having hypotonia makes you feel like you have a 20 pound weight on your foot (or arm, stomach, leg, etc.) that makes it very hard to move against.  To a parent, a child with hypotonia will feel much heavier and like they are going to slip through your arms.  It's something that effects many, many parts of Joey including his swallowing ability, his gross motor skills and even his eyes.  There is no "cure" or "fix" for hypotonia, but hard work and diligence will help Joey work around it.  

National Down Syndrome Awareness Month ends tomorrow and I'm kind of sad about it.  Before it ends, I wanted to write about the tie between Down syndrome and Autism.  Until recently, it was commonly believed that the two could not exist together.  Today, the medical profession recognizes that people with Down syndrome 
may also have a psychiatric-related diagnosis such as ASD or Obsessive Compulsive Disorder (OCD). (See NDSS).  Current estimates are that between 5-7% of people who have Down syndrome also have an Autistic Spectrum Disorder (ASD).  NDSS has a wonderful resource on their website that discusses what to look for as well as a list of other resources.  To learn more about it, visit here

Back in April I was suffering from some bizarre virus that plagued my eyes for about three months.  I had weekly visits to my eye doctor.  This was a couple of months before Joey's heart surgery and the extra appointments were not what I needed at the time.  During one of the visits I found the following book in the waiting room:  Lessons From Ty
As I read it, I realized that the author, John F. Durkin, is my eye doctor's brother.  John is a an Intervention Specialist at Jackson High School in Massillon, Ohio.  His website summarizes the book by saying, "School needs to be a place where all children are welcome to come and share their unique gifts to help each other learn.  Come take and emotional and inspirational journey with Ty and his mom as they navigate their way through the public school system to find the best learning environment for Ty and his special needs (autsim)."

I read the book from cover to cover and I cheered for both Ty and his mom.  I wrote down this quotation from the book in my planner on that April day, "For whoever welcomes a child such as this for my sake welcomes me.  He welcomes not only me, but the one who sent me." 

If you have a child with Autism or know someone who has a child with Autism, this is a really inspirational book.  I am going to use it with both of my boys to help them learn about going to school and about all of the different friends they will meet.  If you are interested in purchasing this book, visit here.


  1. we just started with Kineso tape, too. Our PT told us to put oil on it (any kind, olive, baby, canola) and it makes for a much nicer, easier pull off. We didn't have any issues getting it off

  2. The correlation between Ds and autism (and ocd?! I hadn't heard of that one!) is simply astonishing, isn't it?
    I hear you about trying to not be the helicopter... it's a struggle for me as well.
    AND! I couldn't write before about your post on my blog because I was so touched. It kind of froze me up - like, oh man... THANK YOU, then I'd go and tear up some more. But really, thank you. Those were the kindest words, ever and so deeply touched me.
    Micah's waiting for breakfast and Moxie went and locked herself in the room and I'm being a bad mama, on your blog. Better go. xo

  3. I have to confess.... I actually didn't read the post, will go back to do that now ;)....but was mesmerized by your cute little guys pictures up top of the post..... just chubby little nakedness, diaper with Mickey on them, and his "zipper" up top because I have a picture almost identical to these when my guy was your sons age and they made me smile thinking back... ;)


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