April is Autism Awareness Month

I come to this little space on the internet, my little space, to share little glimpses into my daily life. It’s a pretty average little life, and often I don’t really have all that much of importance to say. Every now and again though, I climb up on my soap box and let you know what I’m thinking and feeling. Hopefully this is one of those times.

I know that on occasion I have mentioned my oldest son (he’s 28 now and I’m not at all sure how that happened) and he has Asperger’s Syndrome, considered to be a “high-functioning” form of Autism. April is Autism Awareness month, a time to share the knowledge and experiences with those who live the neurotypical life. Being a firm believer that knowledge is power I am always willing to share my experiences with anyone who will sit and listen for hours on end! I want greater understanding of people who HAVE Asperger’s as well as the people who love them and live with them from day to day. I have many stories to tell and even though he’s been out of the house, working and living on his own for several years, I’ve had many a revelation long after the fact that have made me wiser and more understanding.

My motivation for sharing stems from not having anyone to guide me or share their experiences with me when we were walking the path, trying to figure out what was going on, why our boy was so different. See, we were Asperger’s before Asperger’s was cool.No one had heard of it, or if they had, it wasn’t something that anyone understood. Asperger’s did not appear in the diagnostic books until 1994, some 10 years after our son was born. WE had to blaze our own trail and it was not easy, but it was worth it.

In the years since, JD and I have taken every opportunity to help people understand, hoping that through understanding, the way might be made easier for others. For many years, I (and later WE) spoke to the “Exceptional Child” class at Eureka College. The class was taught by JD’s middle school principal after her retirement. She was a wonderful advocate for us and the grandmother of an Aspie herself. Those Jr. High school years were easier because of her. I’ve also sat with moms of newly revealed Aspies, listening and of course talking.

Two years ago I found myself sharing these experiences on facebook. Three of those posts are found below. They’ve been languishing under my “notes” tab all this time and I thought maybe it was time to get them out and dust them off. I hope that somehow they are helpful, either for those who are walking the path with their youngsters now or for those who may encounter, employ, work with or live with someone on the spectrum. It is my mission to foster understanding between us all, between humankind, because really that’s what it comes down to. We are all just people, struggling to get through each and every day. This struggle might be so much easier if we stopped to realize just how much we are alike, rather than being so quick to point out our differences.

So, read on, glean what you can and if you have a story to share, I encourage you to do so.

April is Autism Awareness Month

April 2, 2012 at 5:43pm

April is Autism Awareness month. As many of you know, I am the mother of a child who has Asperger’s Syndrome. It doesn’t “define” him, it’s simply one SMALL component of who he is. He is also an engineer, a loving human being, SMART, funny, happy, productive (when he wants to be) and lazy sometimes too! But we went through so many tough, and hurtful times as he was coming up through school because people didn’t understand. Teachers and other professionals made judgements and harsh predictions that were based on a lack of knowledge.

 

Fortunately, I’m stubborn and tough and I didn’t listen to those who told me he would never, this or shouldn’t that or that he was “retarded” (hate that word), or undisciplined or destined to fail or my favorite “unemployable” (this was in second grade). (there was more, but I’ll spare you.) Fortunately for me this was all the fuel I needed to get the job done. I knew better. I knew THEY were the ignorant ones.

THAT is the purpose of Autism Awareness month, to do away with the ignorance. As Psychologist and author Tony Attwood put it, “People don’t suffer from Asperger’s, they suffer from the ignorance of others.” Become educated. Reach out to those with Asperger’s and Autism and their families and see who they are and what they are capable of. Don’t count these people out!

I am privileged to have so many people who are tacked onto this “spectrum”, whatever that is. They are wonderful, and funny and smart. They are also as vulnerable as any of us are and they deserve to be treated with the same respect and consideration any one of us expect and deserve. Learn better so you can do better.

 

As a reminder that it isn’t only “THEM” who must be made aware! The Aspie and the parent of the Aspie has a certain responsibility to be aware of how others think or process:

Awareness is a Two Way Street.

April 3, 2012 at 8:13am

April may be Autism Awareness month, but as the mother of an child with Asperger’s you might say I’m aware 24/7/365, even when I didn’t know what it was I should be aware of, I was aware that something was different. But this April, my awareness seems to be ruminant.  Since my son is now 26, I find myself looking at things through new eyes with the perfect vision of hindsight.

As I lay in bed doing this last night it occurred to me that this “awareness” goes both ways. When you have a child with Asperger’s, you find that they need to be made aware of the world around them in a different way than most kids. You see, the Asperger’s mind thinks that EVERYONE else must think what they think and that everyone knows what they know. Anyone who doesn’t think the same way or know the same things must, therefore, be stupid!

Let me give you an example. My young man learned to crack the written code of language before he developed meaningful speech. This is a phenomenon called Hyperlexia which eventually became a part of his diagnosis (Asperger’s with Hyperlexic tendencies). By age 2 he was reading children’s books, signs and the scrawl at the bottom of the public access channel’s screen. All of this before he could say mom, or dad, or, well, anything. Fast forward to 1st grade, by this time he’s reading at an 11th grade level and comprehending at a 10th grade level (we had him tested). However, in first grade we read beginner’s books. In my son’s case they had the Rebus sort of books where new words are introduced with a picture of the word and the word underneath it. For most students that age this is right on target and for some it’s even a bit of a challenge. For my son it was sheer torture, especially when they would read aloud and a child would stumble across some of the words. More often than not, this would produce an outburst from my son that usually ended with “What are you? Stupid?” and sometimes he’d flip his desk out of frustration.

My point is that he didn’t know that he was the unusual one here. That they were all operating at a normal level and he was the different one. I tried to work with the school to find an alternative to reading time that might challenge him more, but it quickly became clear that I was handling this one on my own. So, what was I to do?

At first I saw his actions as frustration stemming from boredom, and to an extent I was right but it took me a while to see that the frustration was not just coming from the boredom but also from a lack of understanding that HE was the exceptional one here. Soon it became clear that I needed to let him in on a few secrets, but how much to tell him and exactly what were those secrets? At this point I didn’t even know what we were dealing with so how could I possibly explain it? Eventually I sat him down and simply explained to him that he was a stronger reader than most people his age and that his friends were right on target with their reading and needed his support and understanding. He told me he’d try and we worked out an arrangement at home to go to the library every day that he was understanding. Eventually we made a lot of trips to the library!

Over time I came to see that he had this tunnel vision of sorts about all things. Outbursts while playing with other kids or even Paul or I usually stemmed from us “doing it wrong”. In his mind there was a script on how to play and that was the only way. Once I realized this I could explain to him that not everyone thinks the same way as he does or does things the same way as he does. This did not make them wrong and it did not make HIM wrong it just made us all different and different is OK. As a matter of fact that became our mantra “I’m different. You’re different. Different isn’t weird. Different is just different.”  We should all repeat this several times a day if you ask me!

It’s not always been easy for him to accept the differences, but isn’t that just the human way? I know there have been times when I’ve thought it’d be a lot easier if people just did things the way they should, ie MY way. Am I right?

So, awareness is a two way street. Those of us who live and work in the “typical” world should be aware of the struggles and differences that are an everyday part of living with Autism and those who are on the spectrum should be aware that that rest of us struggle from not being as brilliant as they are, but we’ll manage somehow!! LOL!

Finally, search for the strengths in everyone. Boy, if we could nail this one what a world, huh?

Don’t Be a Disabilitator!

April 4, 2012 at 4:40pm

Today for Autism Awareness I’d like to share this quote from John Donovan during an interview in GMA: “In an important way, disability of any individual is defined by the rest of us and how we react to the person who has a disability. You can look at a person with a disability and reach out to their abilities.” 

How about that? The way WE approach people who are different could actually be what holds them back and keeps them from achieving. Stop seeing the perceived “problem” and trying to fix it. See the ABILITIES of an individual and see if you don’t get farther that way.

This brings to mind a lovely man my son had for History class in high school. I’m ashamed to say I do not remember his name, but I will NEVER forget what he did. They were studying the Transcontinental Rail Road. Trains and anything that goes have been a passion of my boy since he was a toddler. There is NOTHING he doesn’t know about trains and railroads. This became quite apparent to his teacher as my son kept correcting him and adding in information and facts that the teacher didn’t know about. In that moment he saw an opportunity to benefit both JD and the class and arranged to have JD TEACH the rest of the class. His confidence grew, he felt accepted by his peers and the teacher said he, himself learned quite a bit.

This memory is probably one of the best I have of 504 staffings that we had over the years. I still tear up because this man recognized the strength in my son and gave him a chance to share his knowledge, his strengths with others. It gave him a chance to be HEARD. All because someone stopped looking at the deficit for a moment and saw in my son something that was better than OK, something that was brilliant! 

It’s hard to always hear the negative. Hard for the person with Autism and for their family. It’s difficult to hear how this thing or that thing just doesn’t measure up, to be given a laundry list of things that must be fixed before your child can continue down the path. The positive tends to get covered over all the time because of it. That’s why I’m so thankful for that moment in our life and I share it as often as I can in hopes to inspire more people to look for the strengths in others. Not just those who are different but in ALL people. I think the world could be a better place for it. 🙂 

Finally I leave you with my favorite quote ever:

“Different, NOT less.” – Temple Grandin

 

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