Thursday, October 7, 2010

31 for 21.. My children with Down Syndrome

For Down Syndrome Awareness Month I find it appropriate to share encouraging quotes I have come across over the past 5 years.  This is one of my favorite and one that is so true.

I thought I would have to teach my child about the world, but instead I have to teach the world about my child~~ Unknown

If you are not a parent of a child with special needs you may read it and think eh, yea I can see that.  But when your living it, when you have to explain your childs actions almost daily for people to understand what they are doing, it becomes a mission.  I don't mind a bit explaining things to people, I almost wish more people would ask more questions.

Here are a few that come to mind:

Did I know before they were born they would have Down Syndrome?  No I did not know.  They were 9 weeks premature, I found out when Caleb was about 10 days old and I found out about a week after that about Isaac having Down Syndrome as well.  Isaac was so tiny, 2lbs 10oz, that they did not want to do a blood draw right away if they could avoid it.

Isaac mad at Caleb so he hits his head

Caleb unsure of his surroundings so he hits his head

Why do they hit their head so much?  I have answered this so many times that I truly think this takes the most popular question asked of my guys.  They both hit their head with a closed fist, thumb side right above the ear.  I can tell you I am not totally 100% sure of exactly why they do this, but from my research and speaking to professionals, I believe it is due to their Sensory Integration Dysfunction.  They are seeking input in their head and they hit themselves to provide that input.  They do this at any given time.  When they are frustrated it happens much, much more.  They also literally run at full speed sometimes and slam their head into walls and doors.  This is generally done when they are mad about not getting something that they want.  I try to have a sense of humor about it.  Since they sign to communicate, when people ask my why they do that, I say they are signing that your funny looking and scaring them... LOL  I've gotten a few laughs out of that.

Why are they always humming?  This to is a sensory issue I believe.  Its an auditory stim.  They like to hear themselves so they hum.   What is a stim? This is taken from Wikapedia:  Stimming is a jargon term for a stereotypy, a repetitive body movement that self-stimulates one or more senses in a regulated manner. It is one of the symptoms listed for autism, although it is observed in about 10 percent of non-autistic young children. Common forms of stimming among people with autism include hand flapping, body spinning or rocking, lining up or spinning toys or other objects, and repeating rote phrases. 

There are many more, but these are the ones that come off the top of my head. So go ahead.. Do you have any questions?? I will gladly answer them if they are appropriate.

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