Monday, April 30, 2007

On Friends....The Discrimination that Siblings Face (Journal #68)

Blogging Against Disablism Day, May 1st 2007
I am very proud to participate in today's Blogging Against Disablism event.

On my mind and heavy on my heart is my neurotypical son and the ways he has been discriminated (unknowingly) by his own peers. Zach is a wonderful big brother to our Sam with Autism. Being a big brother often bears extra responsibility in any family, but having a little brother with special needs draws even more responsiblity and challenges at times. From very early on, Zach has been aware of how some people observe us in public. The times when Sam is on sensory overload, dysregulated, and maybe having a hard time getting us to understand his needs when in a store. Then the screams come from Sam, the falling flat on the floor, then the glares from others to control our child. Zach notices. He lets me know when people are staring, or even following us all over Target as an elderly gentleman literally did for 20 minutes a few months back.

But...what I believe is hardest for Zach, is the way his own peers have treated him in specific regards to his brother. Granted, these are children who are growing up with Zach. I don't expect 9 1/2 year olds to truly understand Autism. I don't expect them to understand when Sam is suddenly angry and charging them in our backyard because they came too close to his "special space". I don't expect them to understand why he sometimes screams more than he uses words. Why his emotions don't match the action that Sam is doing. Why he may repeat things over and over or why he will run circles in the yard over and over. Why he sometimes acts like he is 2 or 3 instead of a 5 year old. is what I do expect. I expect that the children who come to our house to play with Zach are respectful. I always make sure the parents of the children who come understand that Sam has Autism. I tell them that if their child comes home saying Sam was screaming the whole time, that there are some days we don't even know why, but to use it as a chance to teach compassion. I have leaflets and info always available for parents to understand. But I wonder if they really care to sometimes.

I have heard Zach's friends say on occasion, that they don't like to come over to Zach's house because of "his brother". There are many times they are very rude. But, I forgive them. They are children. It just feels so unfair to me when I saw that Zach's friends were choosing to come over less the last couple of years because of his brother. It didn't feel right.

So...last summer, our backyard took on a new formation. Brent built a treehouse for the boys and we added a trampoline for Sam's Occupational Therapy. It helps with his vestibular issues and balance and coordination issues. Suddenly, Zach's friends start coming around again. They have figured out how to play some creative games of football on the trampoline and other crazy stuff. Zach has been in heaven having his friends show up a little more. But, again, he too feels it is just for his "backyard".

I reached my limit a week ago. I was pushed to it, because prior to this incident, Zach and Sam had started communicating and connecting in ways we really hadn't dreamed. Sam is letting Zach into his world more, even though he still dictates what to do. Zach is increasing his patience with his brother, because he really wants to be a part of Sam's play and world.

Then, on a nice afternoon, along comes two of Zach's friends. I have made it a practice to always be in eye and ear shot of any gatherings of Zach's friends when Sam is in the vicinity. Sam was off in his corner of the yard working in his "store" and sandbox. Brother and friends were playing their football on the trampoline. I was on the upper deck that we have, that overlooks the whole yard. Things were fine, of course, and I decided to step in the kitchen to lay some meat out. Apparently when I went into the kitchen. Sam witnessed Zach's two friends tackling Zach.

As we have pieced the story together, we believe Sam thought they were hurting his brother. Sam often confuses laughter as being other things, even anger or fear. According to Zach, Sam came charging up into the trampoline screaming "OFF! OFF!" and then pushed one of the boys. Now, mind you...Zach and his friends are almost 5 years older than Sam. Sam is 40 pounds, the other boys 70-90 pounds. Sam pushing one of them off of Zach is not a huge amount of force.

I enter the scene. But, I have to run down a full flight of steps and over to the trampoline. At this point, Zach is still laying on the trampoline from the first tackle, and now the other boys have started screaming at Sam and are laying on top of him pinning him down, as they are mad at him. Of course I am freaked as I am running down, as any mother of an autistic child knows what that kind of contact does to one of our kids. Sam was screaming a sound I had never heard. Needless to say, Sam's face was left with the imprint of the trampoline mat on his whole left side of his face.

Meanwhile, on my way over, Zach is screaming at them to get off his brother and pulls one of his "friends" off. That "friend" is furious with Zach and starts screaming at Zach and pushing him around. Next thing I know, Zach bolts out of the trampoline meeting me, crying and telling me to have his "friends go home, because mom, they hurt Sam and were so mean to him!"

I asked the boys to come see me (they are completely calm, acting like everything is fine), that we need to talk about what happened. In my head at the time, I felt I needed to explain what Sam saw when he looked at the trampoline, and how he thought he was protecting his big brother. The boys tell me "no" and continue to walk through our basement patio doors to go into the house to leave out the front door. I am like, "no they did not just tell me no, and not only walk away from me, but into my house". I followed right behind them to stop them at the front door. They would not stop, even with my pleading. I finally said at the front door, "Boys, you won't be able to play at our house again until we talk about what happened today and how to handle it next time." Both boys ignored me. As they left, Zach was hysterical. Crying and saying, "mom, I can't lose them as friends, I have to go say I am sorry, let me go mom". My heart was dying, and the next thing I know, is that Zach is flying out the door chasing behind them. He came back even more sad. Saying they told him it's "his brother" who always causes problems.

These situations have plagued Zach. We have tried to prepare his friends that come over. Every kid loves having friends over to play. Zach is resilient though. Thank God. His teachers always report how happy he is at school and how well he gets along with others. But dang it, the true friends are the ones that stick by you at school and away from school.

We are never afraid to tell people that Sam has Autism and are very open to explaining to people how to understand it and how to help their children understand it. However, people sometimes treat it more like they used to treat Cancer in the old days. Where they avoid it and you, because they don't know what to say. They don't explain it to their children because they don't think they will understand or get it, or that they just want them to see Sam as any other child. not doing so not only effects the child with Autism, but also the siblings. And Sam is not just any other child. He has special needs that need modifications not just in IEP's, but in life, and his brother needs them too.

To deny that Sam has Autism, is to deny a piece of who he is. To deny that Zach is a brother of someone with Autism, is to deny a piece of who he is. Teaching how to accept others is not an adult concept. In fact, teaching acceptance has to start in childhood to truly attain an authentic appreciation of all individuals and who they are.

In my days as an elementary school counselor, I focussed a great deal on teaching children to appreciate differences on diversity of culture, ethnicity, socio-economic backgrounds, different abilities. In looking back...I don't think I ever encountered a curriculum or even thought about other family members and how the disability may effect them as well. Or perhaps how the siblings may encounter discrimination. Watching Zach grow in understanding his brother and how he explains it to others has made me very proud. He has learned so much from great resources like Sibshops sponsored by ARC. He is learning how to stick up for his brother. The fact that he was devastated at the way his friends treated his brother, and the fact that he is taking a stance with them in those situations will prove that even discrimination from some of his peers, will eventually lead him to people who are true and pure, and those real friends will last him a lifetime.

A Twist of Faith
2 Corinthians 4:16-18: "Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal."


Anonymous said...

Powerful. Thanks for sharing and teaching.

Imperfect Christian said...

We have a typical son and recently adopted two little girls with Down syndrome. This post has really hit home with me and the situation we placed our son in. We wouldn't do it any other way, our son has benefited greatly from having his sisters, but I do think we need to take the time out JUST for him and the special issues he encounters having "special" siblings. Very thoughtful post!

Never That Easy said...

Very powerful - and also one of those things that is often overlooked. Thanks for posting this important topic.

Anonymous said...

Ugh! I had tears in my eyes reading this. I'm so sorry that your family had to deal with this. Zach is an amazing kid. You do find out who your true friends are. It's just so painful to go through this to get to the true ones. It is comforting to know that there is a better place waiting for us in the end. Thanks for sharing your story.

Mom without a manual said...

Wow! Thanks for sharing this story. My heart aches for all of you. No doubt about it--Zach is a wonderful brother! Life is hard but he is going to be light years ahead of his peers in knowing what is truly important in life.

Maddy said...

What a terrific bond they have.
Best wishes

Joeymom said...

Wow, what amazing kids you have! However, if I ever had children at my house who treated me the way Zach's "friends" treated you, I'd be on their front step addressing their parents in a blink- something to the effect of "if your child cannot be civil and respectful to me in my own home, they are not welcome there." A kid that thinks nothing of telling the responsible adult "no" when given an instruction- that's not just rude, that's dangerous. It really makes me angry to have people who are supposed to be "friends" act that way, and allow their children to act that way. An ignorant person is bad enough; a person who insists on remaining ignorant is far worse.

Anonymous said...

Excellent post about a very difficult situation. Thanks very much for sharing.

Beth Allums said...

I'm so feeling this post. I am a single mom, with one son, who has PDD, our flavor seeming to be AS. I relate to so much of what you have said, admire you advocacy, and fear these scenarios in our own life as I see so many friends who used to invite us to play have since disappeared, as I am learning more about The Monkey's diagnosis. I am so astonished by my own "friends" with children who stay clear as if we have Cancer as you referred to. I am inspired by your son, who is finding his own way. What an amazing man he will grow to be.


You have 2 great boys.

Philip. said...

A moving, interesting story!

I've linked your blog to mine :-) - hope you are OK with that :-)


Attila the Mom said...

It's days like this that make me repeat over and over "baby steps, baby steps" in my head.

Thanks so much for sharing this. It sounds like your guys have a wonderful bond with each other.

mumkeepingsane said...

I've been thinking about the impact on Patrick's older brother a lot lately. Thanks for this story.

KC's Blog said...

What awesome little fellas you have. You are an excellent Mommy and Teacher, it shows in your beautiful boys, heart and soul.

Anonymous said...

I found this from the Blogging Ag. Dis. -- I posted re. my brother, and reading this brought back so much. What eventually we found was that kids that couldn't deal with Stephen we didn't want as our friends. But when kids are so young it is really hard, and often painful. You must be doing a great job with those boys. I send Zach a secret hug -

chrisd said...

If you lived close, my kids would be friends w/Zach. What a wonderful man he will be. What a blessing he is to his brother. I wish I had seen this earlier.

Fabulous post--really, really good.

Lora said...

What a moving and touching post! Thank you so much for sharing this story. You are indeed a great mommy of some wonderful boys! Zach is going to be such an incredible man because he is one awesome young fella right now. Kudos to you for doing such a great job!

Anonymous said...

Did they deliberately hurt him or add him to the wrestling match and ended up with a problem - freaked out child - that they weren't anticipating?? And then your other kid screaming at his friends, turned into a pissing match btwn boys.... welcome to playgrounds... They tell me my eldest gives as good as he gets so he's managing well in playground situations.

See... I expect appropriate behaviour from my children. The fact your ASD son interrupted would have landed mine (and I have 2 with ASD)... including the severe PDD one... into "time out" and removal from those other children since he was reacting inappropriately to the situation.

I don't feed my eldest son's anxiety... If he goes round and round in loops... it's shut down... he's told that I now longer wish to discuss it and to go and play. And I will not discuss it, and he's learned to go and play. The loops become less and less all the time. When the little one - severe non-verbal - thru a meltdown last night b/c he spilt milk on his pants, he got a towel (as he's been taught to tidy) but since it wouldn't dry... he melted on the floor. He was picked up off the floor and set on his feet, was taken upstairs by his hand to his bedroom, HE got new pj's out of his cupboard, taken downstairs to the bathroom and left to change. I went into the kitchen next door and waited. He sobbed a little longer and then got dressed again. He's 5. Meltdowns are not appropriate, especially those that the child can fix the situation themselves, this must be taught at a young age b/c I dread what it will be like when they get closer to 10 and puberty. If you can teach them to read... you can teach appropriate behaviour in a particular situation.

Reading your post... unless you can prove those children deliberately assaulted yours... I would have left too.

But, I've never coddled my kids. Yes, I worry about playgrounds etc... but they are managing (they adapt easier all the time - we don't routine our home) and managing well... I'm very proud of them.

I don't expect children to understand autism. Nor do I at that age expect them to sit and listen to a lecture from a stranger.

PS... I read this post last night... and thought it through before posting.


mysamiam said...

Thank you all for your kind words on a great day of blogging about Disablism.

March Day, Mom without a manual, the Monkey in Me, Marylou, ChrisD, and Lora~ I had finally shared with Zach what I wrote about him and I also shared your comments for those that were specific to him. I have NEVER seen him smile like that before. He really needed that boost. Thanks!!!!

Joeymom~ I completely agree with you about not allowing that. It has been a touchy road to walk with one child in particular, because the family is a neighbor, and it is one of those where the apple doesn't fall far from the tree. Hard to teach a child not to be rude when parents are more so. Ugghh!!

Phillip~ it is an honor to be linked. I look forward to exploring your blog. Thanks.

Farmwifetwo~ Just to clarify in my post, because I see that I left it vague...Sam "pushed" the top boy off of the two that were on top of his brother because he thought they were hurting his brother. When I say pushed, he was unsuccessful in getting the boy all the way off. Mind you, Sam is a 40 pound 5 year old as I stated, and the other boys are almost 10 and weigh around 80 pounds. In our family, we do not punish our children who are defending their sibling in what appears to be a "life threatening situation", which is how Sam viewed it. I believe that part of Sam's incredible growth over the past couple years is attributed to his family really understanding how he thinks. Had I been on the ground and right there and not on a second story deck, I too would have pushed the boys off of my son. I don't find Sam's behavior inappropriate. The boys left, because they were being told on and saw me coming (and I am not a stranger in the boys life, I have known them for 5 years). I also want to clarify why Zach's friends don't like to come play with him always because of his brother (as I stated), is because they could never understand what his brother says, and then when Sam is frustrated because people don't understand him, he forgets to use the words he has and screams. They also don't like to come because they think his brother is weird. It is our job as family and advocates for autism to educate others and support the family we have as well as supporting the autism community by helping others understand. Also, I am not quite sure what other evidence I would have of deliberatly assualting Sam, other than there were two bodies, totalling 160 pounds on top of my 40 pound child whose face was left with marks, who was not able to escape, and the boys on top were not laughing when doing it. Our family doesn't believe in coddling either, but we do believe in protecting and caring for our children in a nurturing way. We also expect our children to give to others what they wish to be given back, and not teach them to give back what they get, should it be in regards to being hurt by others. The intentions of this post was to share with others that it is not just our children with disabilities that face discrimination, but that their siblings also experience it because the world doesn't understand their siblings. I am thankful that you must not have to experience that in your family. Blessings to you.

Anonymous said...

I can only imagine how hard it must be for Zach. Kudos to him for doing the best he can.