Sunday, January 10, 2010

Something on my Mind...

There was a post on a bulletin board not too long ago. Click HERE to read the article. The story is two mothers were shopping in a local store. One of them had a baby, the other one had an older child. The mother with the baby goes and starts telling her baby "say Hi to the girl". The other mother, tells this mother "Don't let my child get near the baby". But, it was too late. The older child had hit the baby. Before this happened, the mom had said that her daughter has issues and not to let her near the baby. The baby was not seriously hurt, and cried for a few seconds and then was fine. As a parent who has a special needs child, I have been in these awkward situations. Having to apologize for my autistic son when he hit them. It has not happened a lot, but it has happened. Nick has no idea that what he is doing is wrong-he just knows that he is upset. Therefor, trying to tell him what he did was wrong is not going to compute right away. It takes time and lots of repetition. We also try to avoid these outbursts, but honestly, sometimes they just happen and you can't do anything about it. Such is life with having a disabled child. Now, I also have a typical child. And yes, if someone came up and hit him I would be mad. But, some of the responses to that post were just downright horrible. Suggesting that we put our children in "higher" care if we cannot control them, that they are a danger to the general public, and that we should leave them at home. Some question our parenting skills and say things like our children are one step away from being a felon or worse. These are mothers saying this. This is the kind of thing we have to deal with everytime we take Nick out. I can feel people staring at us. Wondering what is wrong with that little boy in the basket as he grunts and bangs constantly on its sides. They stare, and probably talk about him as they are in their cars going home. Sometimes it doesn't bug me. Sometimes it does. Yesterday, it bugged me. Then on the way home, my mind wandered to think of Fran Peek.

Fran's son, Kim Peek, was the inspiration for the movie "Rainman". Kim did not have Autism. Instead, he had Agenesis of the Corpus Collosum-with other impairments. He memorized every book he ever read, new every zip code in the US, among many other amazing feats. Doctors told his parents to put him in a home and forget about him. Kim never went to an institution. Instead, his parents loved him and raised him at home. After his mother passed away, his father, Fran, tended to his every need...every day. Since "Rainman" Kim has had many speaking engagements-accompanied by his father. He continued to learn social cues, and was even developing a sense of humor. Kim Peek died over the holidays. He did not die from his mental condition, he died from a heart attack. His father outlived him. Of course, this is every parents nightmare. But think just for one minute. Kim never had to be institutionalized. Fran never had to worry about who would care for his son when he passed. Never had to worry about the care he would recieve, or that other care givers would simply exploit Kim. Kim lived at home his entire life, and got to travel to world renowned places sharing with the public his amazing abilities. People like that give me the strength I need to make it through another day. The world has lost a great mind, and a great person. We can sure use more Fran and Kim Peeks in our world.


msmichelel said...

That was a great post. I loved the movie Rainman.

I do wonder how mom's that have "typical" children cannot be more compasionate to moms who have special needs kids.
You are right, we sure can use more Fran and Kim Peeks in the world!

M said...

As usual Amy you tug at my heart in amazing ways.

I had the pleasure of running into a child with autism over the weekend while shopping in Target. He was probably near 10. Sitting in the cart. Doing everything you described and more. Snuggled with his blanket. Looking at a dog calendar and grunting happy grunts.

I walked over to him and said "Hi friend". He looked up and back down but the conversation with his mother that followed made my heart happy the weekend through. While we were discussing autism chit chat more than a few people came past and looked at the child. Listened into us. And looked back. "Getting" it. For just a moment in a random Target a half dozen people at the right place at the right time were able to overhear and "get" it.

Remember that for every narrow minded, not understanding individual out there? There is another learning, and caring,a nd figuring things out. Whether they say something or not just seeing your child...may make someone question and wonder and stop the judging.

I'm rambling. All I know is Friday was one of those hell days for me in public when I just wanted to scream at everyone that he has autism and to bug the crap off or ASK what they want to ASK.

I just remember every day we love and support our children, do not shelter them away from the world, love them and are proud of them? Is another day we are doing them justice and teaching those around us whether we know it or not.

Amy said...

Michele; I think it is mostly because they cannot relate, or don't try to understand. I admit, having Nick has opened our minds completely and same for my family. It was no longer "other peoples children", autism now affects their grandchild/nephew/cousin..etc. If only they could walk a mile in our shoes..they might see something totally different. Then, they might get the true beauty of living with our wonderful children.

M; I LOVE how you put your first sentence! That you had the 'pleasure' of meeting a kid with autism. :) :) It is a pleasure. I have had the pleasure of meeting several of these wonderful kids-and even some adults. When they look at me, it was like they were looking right though me and seeing who I really was. I think Nick connects with people on a much more spiritual level than most of us Typicals.

I would actually welcome questions from those who just tend to stare. I am always happy to talk about autism and make it not so 'fearful'. Plus, I would get to talk about Nick and they would see that he is more like a 5yr old boy than he is different.

M said...

It IS a pleasure! I get this strange high from meeting other kids on the spectrum. I swear I'm addicted to them (which might be why I'm considering a new career when the kids are older). But it IS a pleasure! To just take that moment to connect with a child who is so often overlooked. Who is so full of things to share if you just look!

I wish people would ask more than look too. Which is why I happily go ahead and mention it if I get looked at too long. it makes many people uncomfortable. Or they say "oh no no I wasn't looking" but occasionally? You get to talk to someone and it's just superb.

There's a reason I find teh questions on all those admittance and generalized questionaires "does your child's condition limit his activities in the community? i.e. the inability to attend church or go to the park or oror". I always go WTF? Seriously? We dont' live in a bubble! he still goes all the places our family goes. Does it require more planning and some creativity at times? Absolutely but anyone who is restricting their lives so significantly because of autism is really giving their family, their child, and autism the short end of the stick.

Oh I could go on and on. Even as Liam shrieks like a whistling pete (I HATED those fireworks. Hate it worse in the 4 year old) but alas if I hear him request cereal one more time I may get more than jsut happy shrieks of hell. :)

Michelle said...

I just wanted to briefly comment on your blog. I accidentally stumbled on it this morning. I am an Autistic Support Teacher and this particular blog really hit home. While I am not a parent of a child with Autism, I am faced with the difficulties of educating students in a public school district. The looks my students get when we walk down the hallway to the cafeteria, or the looks from people when we go on field trips -- I'm sure my students are being talked about by other people! And yes, it bugs me. I've learned that people are not educated enough on Autism. Some of my students display behaviors, such as dropping to the ground when a demand is placed on them, hitting, kicking, screaming -- but that does not mean that your child should "be left at home" or you have "bad parenting skills." Even other teachers in my school do not understand! I've often received complaints that my students are screaming when walking down the hallway.

Rainman is a perfect example!!! He would never have made the gains he did if he did not have parents who supported him.

I wish you all the best with of luck with your son. The world needs more parents like you. Trust me, I see these parents on a daily basis -- I'm sure if some of my students had caring parents like you, they would be able to accomplish great things.

Best of luck to you :)

Amy said...

Thank you so much Michelle for your kind words :) You are just the kind of teacher these kids need...loving, understanding, and passionate. We need more professionals like you. The ignorance surrounding autism and other disabilities is astounding in this day and age. I get tired of people telling us what Nick can't do. I realize sometimes they need to do it to get him services, but I hate when they focus solely on that. He can do a lot of things that every other kid can do; and some things they can't(pick-up words/phrases in spanish & chinese-and speak them exact!, sing a song after hearing it only once, latch on to patterns in everything)
Your students are very lucky to have you as their teacher!