Wednesday, September 14, 2011

Little Breakthrough

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It's only Wednesday, and already I feel like we've had a big week.  Monday afternoon, during Elijah's therapy appointment with our Child Development Specialist (CDS), I told her about how Elijah sat for a 10 minute stretch in the grass last week.  The only defining thing I could think of, was that this particular grass had been damp.  The CDS said, "Well maybe it's specifically wet grass he doesn't care for, and therefore didn't want to crawl around in it."  Ummm....Lightbulb.  I really cannot say why that had not fully occurred to me.  So, we decided to test the theory: I turned on the sprinklers in the front yard for a minute or two, brought out a waterproof blanket for the therapist and I, and plopped Elijah down in the damp grass. Theory proven. He sat for thirty minutes straight, no fussing, no escape attempts.  Ah-ha!  By the time I saw our Occupational therapist the next day, it was our new trick.  The OT was nearly as excited as I was that we ave found a way to make Elijah sit.  Now that I have a way to make him sit, he can get stronger and will eventually be so strong that sitting won't be taxing for him anymore--then he will probably want to sit. As she said, "The one who manipulates first, wins!" Woohoo- Score 1 for Mommy. I can't wait to show our Physical Therapist on Friday!!

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Elijah is also taking things out and putting them back into a box...another small milestone that we celebrate around here...

Christian seems to be loving school.  When I picked him up today, he wasn't quite ready to leave.  He sat down in the middle of his class and said, "It was a pretty great day, Mom."  He blows my mind these days. Some of the things he says are so smart and so wise.  One of my favorite observations this week, was as we were leaving school today.  Christian looks off to our right and says, "I want to play that game, Mom." I looked over and noticed 2 tetherball courts.  Deep seeded memories of tetherball humiliation came rushing back to me. I laughed and said, "Yeah...I used to get hit in the head a lot when I played that game."  He mulled that over and then said, "I think you should back up then, Mom."

Right you are, Little Man....Right you are.

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I'm going to briefly touch on another thing that came rushing back to me this week:  I saw a video posted by a young girl on You Tube, called "Retarded." In it she never speaks, she simply holds up post-it notes of all of the words that are used as descriptions for the word "Retarded" in the Urban Dictionary.  She looks sad as she she  holds up words like "useless", "waste of time", "mindless", etc.  She then reveals that her brother has Down Syndrome. And Autism.  She reveals that he is her world.  That he has shown her what she wants to do with her life.  That he is her biggest inspiration.  Unfortunately, her brother is non-verbal, so she is his "voice".  He is lucky to have her.  But...I think she is very lucky to have him too.  I was struck in particular by this video not because it's another plea to stop people from using phrases like, "That's retarded," but because she is positively affected as a result of having a brother with special needs. When I first received Elijah's diagnosis, I worried how it would affect Christian.  Would he feel overshadowed by the amount of therapies and special programs Elijah would have to be part of? Would he be able to have a brother he could relate to? Play with?   However, when I connected with real-life families who were living with a child with Down syndrome, I heard the opposite. I heard story after story of how compassionate and unbiased and inspired the siblings were.  But, also how there was no "special treatment" when it came to just being a family.  I heard story of brothers just being brothers...struggles over toys and everything. When I was only 21 weeks pregnant I talked to an aquaintance who had seen the same perinatologist I was seeing to monitor my pregnancy with Elijah.  She flat out told me I should abort and that I should think about how "it will (negatively) affect Christian (if I had Elijah)."  I try not to let that piss me off as much as it does.  It pisses me off because a) ...(b, c,and d too) She has NO IDEA what she's talking about!!!!!!!!!!!!!! She doesn't personally know any families whose siblings were negatively affected by someone having Down syndrome.  She is not an expert in the field.  She's a bag of hot wind, who has no business suggesting I do anything!!!!! 
Deep breath.

Composing myself...

Okay. What I remind myself is that she is Ignorant.  She truly has no idea what she was talking about.  I get angry about implications that my firstborn will get the short end of the stick or be overlooked, because it basically implies that I'm not going to do my job as a Mother very well.  It is my job--whether or not I have one son who is at any kind of disadvantage or not--to parent both of my kids. To address each of their needs collectively and individually. Perhaps being an "older Mother" raised my odds for having a child with a genetic condition.  But, being an "older Mother" helped me to have the wisdom to always aim to meet my kids where they are at.  I don't worry anymore that Christian will feel second string to Elijah.  That is not ever going to happen on my watch. Nor will he feel that he is better than anyone either.  We are a family and we each have a role to play. 

I saw that wind-bag of an aquaintance last week. She looked better than I have ever seen her (which, sadly, isn't really saying a lot) and so I remarked on how she is looking.  We had one small exchange where she asked how the baby was (Elijah was there, but at the moment was off playing with Daddy.)  I said, "Great!!" (Perhaps too enthusiastically) and got the heck out of Dodge.  I know that, in part, my role in this world will be of practicing Tolerance.  That, in part, I will have to let my light shine through who I am so that others might draw closer to see that Elijah...and others like him...are a blessing and not a drain.  Meanwhile, there are young girls like the one in this You Tube video spreading messages of love. Spreading TRUTH. 

Bring. it. on.

4 comments:

Becca said...

I love the wet grass story/theory! That's such a brilliant (and useful!) deduction!

I have never heard of siblings being negatively affected by Down syndrome. Totally the opposite, as you stated. What a cow that woman is!

thea said...

Love. This made me smile on so many levels. Still so amazed Elijah sat for 30 minutes! I feel like Mommy needs to do one of those obnoxious end zone dances with that score! And Christian and the tetherball..LMAO! I did a double take on that. Brilliant little thinker for sure. Cheers to the little breakthroughs. I think they can be bigger than we even imagine.

P said...

Amen sister, Amen!

Christian's not only physically a natural athlete but MENTALLY he sees that clearly and articulates it!!!? Look out world, we have the "Doogie Houser"' of the sports world here. My prediction is a stunning athlete, coach and who knows, stunt man/director!

Bonus that he can help our DS community too, Yahoo!

P said...

Even if his way of helping is patiently passing on those skills and insights to his lil brother to help the rest of us! Special Olympics or smooth transition to inclusion in sports--whatever works!

Have you seen the teenager with Austism shooting 20 points story/video? My thought was, why isn't he playing regularly!?? That did not look like shots 'given' to him. He was incredible!

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