As part of my new Slice of Real Lives segment, Elise Butowsky has agreed to share a part of her life with us. She describes herself as a happily married parent of two young men with Aspergers syndrome. You can find her at her blog Raising Asperger’s Kids and on Twitter as a moderator for The Coffee Klatch, a support group for parents of special needs children.
How would you describe autism?
I guess I could give a clinical definition of autism and be done with it, but for that anyone can click on Google and find the answer. You see I can’t tell you what it is to live with autism, but I can tell you how it appears to me, a parent.
Imagine that there is a huge chasm, and that within that chasm is another chasm. Now at the bottom of the second chasm is your child. Who they are and all that they will be is buried at the bottom of that chasm. Your job is to reach the bottom of the chasm without fail to pull your child to safety. You dig road after road and even find some tunnels that you can by-pass. But then there is a huge earthquake and everything that you built and discovered is lost. In fact, there may appear a new chasm that you have to traverse to reach your child, who is still at the very bottom. Now they may have made it up a few steps as well, but not enough for you to grab hold of them and pull them to safety. The earthquake and chasms rob you of successfully bringing your child out to the light and to the safety of level ground. This is autism and this is what all families with children on the spectrum face. No matter how hard you work there is always an earthquake and something sets you back. But you get up and begin again, because if you don’t your child will be left in that chasm forever; lost in darkness and alone.
What do you think life is like for your boys?
The interesting thing is that my boys, with all their troubles and travails are two of the very lucky ones. They have what they term the good kind of autism, aspergers. It gives you a keen understanding of things in the world, but it does take from them the ability to read the social construct. That is fine, for with their innate intelligence they at least can be taught. Until I had had children on the autism spectrum I never appreciated how much we learn by existing. It is truly interesting how much we learn from being able to understand what is around us. Something those on the spectrum find very hard to do.
Now think if you could not pick up on the subtleties of life, how hard that would be. That is what it is for the boys. Every social interaction must be scripted. Every event must be role played before it happens. Every event in their lives, from the moment they learned how to brush their teeth has to be explained, diagramed and instructed. You basically are attached to them and need to talk them through every incident. Not because they aren’t intelligent enough to see what is in front of them, but because they are lost, and without the ability to reason through the situation because they cannot always understand the cues that are in front of them. But once they have been through something, and they practice it time and again, it does come to them. It’s as if they keep everything scripted in their heads so they know what to do when.
What do you think are the common misconceptions in society regarding raising autistic children?
Society has a term for this kind of parenting. It is usually spoken of with derision and held up as an example of how we are not letting our children grow up. It is called being a helicopter parent. But for a child on the autism spectrum it is their life-blood. For without the constant teaching and reteaching they just will not get it. They will not just one day figure it out on their own. They will not one day have that light bulb come on, not without turning yourself into a “broken record.”
How does the school learning process cater for those with autism?
What children on the autism spectrum receive in school is just a drop in the bucket of what these children need. It is merely 8 hours a day of supervision with some therapy thrown in. When that afternoon school bell rings, for most children on the spectrum, their day is just beginning. There are more doctor visits, more therapy visits, more tutors (if you are lucky enough to have a child who can learn in a mainstream environment) and then private lessons, tons and tons of private lessons, because your child cannot participate in group sports. They don’t understand the rules of a soccer field, or a baseball diamond, not without help and quite frankly how many support personal do you see running alongside someone on the soccer field? They can’t even do group tennis lessons because the instruction has to be so personal that they take up all the instructors time.
Now you could say don’t give them the lessons. Then what? What if that is the thing that brings your child out of their shell. What if that extra horseback riding therapy is what makes your child turn to you and say “Mom” for the very first time or lets you know that they are hungry or thirsty without you having to guess. You aren’t going to take that chance. You are going to find a way, debt be damned, to give your child everything they need, because you don’t know what will work and what will not work. So with each lesson and therapy and doctor visit, you hold your breath and hope and pray that this is the thing that works. This is what stops the earthquakes and this is what leads your child up through the chasm and into the light.
Finally, what does the future hold?
We live with the knowledge that our children will outlive us. That we need to prepare as best as we can with guardians, special needs trusts and support for our children as they live out their lives without our support. Every night I pray that mine will have the future I want for them, as any neurotypical has that choice. I know that if any with an autism diagnosis can, my boys are lucky enough to have that capacity. But for most of the parents of autistic children they know that somewhere down the line, even if there are siblings, your vulnerable, sweet, good natured, neurodisabled child will be at the mercy of strangers and society. The reality is that it is ignorant people that terrify us not for now, but for when we are gone and are not there to protect our children.
Elise has kindly compiled a list of useful websites where you can find more information on autism. For more information please go to:
Autism Society and HFA Syndrome http://ahany.org/
GRASP http://www.grasp.org/
Autism Association of New England Support Group http://aane.org/
New Jersey Autism Support Organization http://www.aspennj.org/
For legal issues and a wonderful yellow-book guide to support services Wrightslaw http://wrightslaw.com/
Learning Disabilities and ADHD http://ldonline.org/
In the United States for federal law concerning your child’s rights http://ed.gov/
Thank you Elise for sharing a slice of your life with us!
If you have any questions for Elise, you can contact her at her blog: Raising Asperger’s Kids.
This article’s statements are copyrighted to © Elise Butowsky 2010, USA. She represents no one and no organization.
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thanks for sharing about your boys. you have to prepare and consistent with children who have this diagnosis. i admire parents who seek out resources to help their children .have a good day
Thank you for the comment. I hope you have a good day too :)