My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Sunday, October 4, 2009

Sibling Sunday ~ When Case Study turns Real

A message from Joyce: Usually on Sibling Sunday we post a picture or two of Sarah with her adoring brothers, with few words. Few words, because they often aren't necessary as the pictures tell their own story. And we had that planned for today. However, as our caption up top indicates this is "the real life story," and sometimes real life trumps planning ahead. If you checked in with us yesterday, I posted a Case Study for Parents(if you did not see it you may wish to scroll down first and read it. Please feel free to leave truthful comments as we are all learning from this).

Well as you may have guessed, we are the case study. ME is our very own Matt Ely. It is his report for the authorities you are reading. He agreed we should share his story for the sake of educating other siblings to not repeat his mistake.

As I sit down to write this post, I can't help but think we could not have asked for better brothers for Sarah. Both TJ and Matt have their own unique qualities that make them such great siblings for a medically fragile sister with Down syndrome. Because of them, I have often focused my energies to the issue of sibling support. It is not easy being a sibling, period. Add all the other "stuff" to the mix that comes alongside a sibling with special needs and it can at times seem unbearable.

There are lots of great resources for siblings. Both in print form and also interactive groups. If you have been following our story for a while, you know that we created a scholarship in Sarah's name at Ohio State for a social worker who will be working in the field of developmental disabilities and doing a field placement at the Nisonger Center. We chose that specifically because they are supervised by Dr. Tom Fish, a national expert in the field of sibling support. TJ and I met with Dr. Fish last winter about bringing a seminar to Cleveland because we feel so strongly about the benefits of sib support.

But let's talk about Matt specifically. He is a third child, born in October 1996, seven years after Sarah. He has always been the child to keep us on our toes. He is a dare devil and a good athlete. Life is grand for him. He simply lives each moment to it's fullest. He told us not to long ago that he was high on life.

He is also kind, loving, nurturing and emotional. He takes care of Sarah. He is the one kneeling next to the toilet holding her hair for her when she is sick. He is the encourager to keep coughing when she is having an asthma episode. If she is in the hospital he wants to be there too. He is protective and adoring.

So when I first got the text message that he had punched a kid in the face, I was surprised. As far as I know, Matt has never hit anyone. Matt does have a side to him that can get him into trouble. He talks nonstop. I have had many a teacher call me to tell me he got sent to the office for talking. He will also argue with you if he does not think you are correct. And if you say something condescending to him, forget it. He will shut down and there will be no discussion. But I have never seen anything physical from him.

He immediately came out to the car when I arrived at his friend's house. Her mom also came out and told me they got into trouble and that Matt had punched a kid in the face. RG started telling me in her animated voice that this kid has been giving her trouble for a while. I was trying to read the expression on Matt's face as she was talking, but it was so dark out I had trouble seeing it. Then all of a sudden he blurts out, "Mom, he just kept calling RG retarded. I just couldn't take it anymore. I snapped, I just snapped."

At that moment my heart was breaking for him, but what was he thinking? Part of me wanted to wrap my arms around him and part of me wanted to scream at him. I simply said "Honey, I understand. It hurts when someone says the word retarded. But you can't punch them because of it." Matt then got into the back seat and just started sobbing...


Molly said...

Oh Matt, I wish I could hug you!!! You are a great brother for standing up for her, but lets work on a way of advocating without fists. You are an asset in the crusade against the R word, and I have no doubt that you will be an amazing advocate.

Lacey said...

What a great big brother. Sounds like my Carter is a lot like him. A great athlete, high on life, and quite the talker. We do need to work on teaching without fists though, Sarah is lucky to have you as a big brother.

Leah said...

Poor Matt!! As wrong as your reaction was (the punching part) Angela's brothers would have done the exact same thing, and I know they would have NO regrets in doing so! And, even though I would have a talk with them about appropriate reactions, inside I would be cheering for them. Just because doing the "right thing" would mean not punching the guy, there is a piece of me that would say "Served him right".

Karen said...

I applaud the fact that he stood up for his sister. Poor kid. And yet...

rickismom said...

I talked in advance to my volitle teens about this, using the scene from "Children Like These" where the sibling gets involved in a fight in the supermarket.

Wish you luck as regards further developements

Lianna said...

Oh my this makes me cry...I feel so badly for Matt.♥