What You Need to Know About My Son

What you need to know about my son......

Every school year begins with an email I send out to my son's teachers. It's an introduction of who he is as a complete individual, and a guide to help them with any behaviors that may pop up between the "wow, new teacher, lets see what I can get away with" and the hovering environmental, sensory and biological triggers that seem to constantly encircle him like a captive prey. I reassure his teachers that I will be vigilant, that I will help him in any way I can, that I welcome any advice they may have, and that they have my full support. I proof read the email at least twenty times, trying desperately to remove any scent of momma bear, stripping it of any excessive sentimentality. I remind myself of my advocate friend's words, my school season mantra, "stay professional, stay focused, keep it clear. He has a right to his education. A teacher is not doing you a favor by educating your child, they are simply doing their job". Still, lurking between what is left typed and what is deleted, is the subliminally implied "please see my son as a child first". I hold my breath and press send. A week later I hold my breath and send my son off to face a new year with new challenges.

As I write this, I am a week away from our CSE meeting, where his 7th grade year will be discussed. However, this year, for the first time ever, I have felt tremendously disconnected from his teachers as a whole. For the first time since his initial evaluation and diagnosis,  I do not know what to expect. It's a new chapter in his life. As he ages, it becomes more complex. I think about his sensory issues and how he had to learn to decipher what he needed to "hear" from background noises. It was all white noise to him. It all came in at once with equal importance, loudly and overwhelmingly. When I think of Gabe aging with a disorder that to the rest of the world seems to envelope him completely, like a snow suit, white noise takes over. I have to relearn how to focus on what I need to, pushing everything else to the background. In an attempt to begin the process, I begin here, with these few simple words....what you need to know about my son.......

What you need to know about my child.....

Gabe is a hard worker. He is persistent. He cares. He wants to do well. He takes pride in his work.  He perseverates over things that are important to him, such as earning his rewards, pleasing others, getting goods grades. He perseverates no more than some people perseverate over Gabe's disabilities. He perseverates no more than most of us have about past loves, school choices, career choices, job issues, social status, our weight, our looks, our clothes, our homes, our cars, our cell phones and computers, who wronged us..etc, etc...
Just because he has a learning disability, or because he has reading comprehension issues doesn't mean he can't learn how to, it means he learns differently. It also doesn't mean he can't comprehend difficult concepts, it only means it has to be broken down and presented to him in another way. You need to know that with the proper tools and instruction, Gabe can learn, and can contribute. All he needs is for a teacher to believe in him. All he needs is for a community to learn to believe in him...to see his abilities, before his disabilities, and see him as a person first.

What you need to know about my child is

Gabe is far deeper than many people, including past educators, give him credit for. I remember a CSE meeting years ago where I was told children like mine could never understand the concept of God or religion because it was abstract. Funny, having studied history and watching it repeat itself, I do not believe any one of us "neuro typical" types have ever really mastered the concept either. It remains an abstraction to us all, and like a good piece of abstract art, it's left up to interpretation. Gabe thinks about death, worries about it, dare I say, perseverates on it. He asks about God, the technicalities of soul instincts and placement, what heaven is like, what hell is like..for him, religion is the biggest behavior modification plan of all times. He worries about the "nothingness". He asked if he would still have Autism in heaven, and would he still have his food allergies. He wants more than anything to be immortal. Far cry from the limits set on him during that CSE meeting. Gabe also understands when people are talking down to him, when his peers do not include him, when people call him names. He understand when the "r" word is directed to him, and the demoralizing nature of it. I tell him different does not mean less than, but the truth is that in our society, when different has a label dealing with brain issues, it does mean less than. That's why the only ones outraged by Michael Savages anti Autism comments are parents of and people who love someone on the spectrum. But you do not see the same calls of outrage and resignation coming from our society in general, like it happens when an Anti Gay, Anti African American, Anti woman, Anti Semitic slur is made public. We do not unite behind and rally for people with disabilities like we do for others who have been victimized. Gabe understands that he is not viewed the same. Just because someone doesn't express their thoughts in the fashion that we are accustomed to understanding doesn't mean they are not capable of having deep thoughts. By the way, there are many spiritual people on the spectrum who write beautifully on the topic. Spirituality, I am sure, would dictate, that Gabe would be a spiritual being having a human experience, but in this human experience, I would appreciate it if he would be seen as a "person first"...

What I need you to know about my child is....

Gabe has dreams and goals. He wants to go to college. He wants to be a chef. He wants to have a family. He wants to be able to drive a car, go to parties, and travel to interesting places. He has serious sensory issues that he contends with, but he has his visions. I have been told over and over through the years that the work will get harder, he won't be able to keep up. I can't help but think, won't be able to keep up or you won't try to teach him? Life gets harder, and life with a disability, let alone a stigma is even harder. If anyone needs to be armed with the tools to deal with the work and challenges as they come it's people like Gabe.
I learned many lessons in loving Gabe, but one of the greatest is that the state of mind is far more important than the state of a mind. You need to know that we all live on spectrum's. That the hair twirling, pencil biting, nail chewing, foot swinging we do to calm ourselves down are no different than the flapping, the rocking, the toe walking, the spinning someone with ASD might do to self regulate. Behaviors stem from biological, environmental, sensory, triggers, from frustrations, from hurt, remarkably just like our behaviors. You need to know that the standards we hold our children with ASD to is no where near what we hold ourselves or our other typical children to. We have become a disconnected nation, barely talking or looking at one another in the eye, texting while in the company of others, on seperate computers, and yet we force kids like Gabe to look us in the eye and have manners, and simultaneously disregarding our own. Social skills in general is becoming a dying craft...so Gabe could perseverate on the death of something else some more....We are a perplexing bunch, we demand respect yet insist we have a right to be disrespectful.
Consequences do not only exist in a behavior modifcation plan......

What you need to know about my child is

That he is now 1 in 88...that he could be your child, grandchild, nephew, niece, brother, sister...that he is loving, sweet, funny, bright, insightful, curious, brave, silly, anxious, complex, talented..a person first...he is like every child, and yet he is not...because we are all unique. He has a right to reach his potential. He has a right to be taught life skills within the community that he lives in without judgement. He is not a label, he is not a classification, he is not the sum of his disabilities. He also embodies his very real and strong abilities. He has a disorder, but it by no means signifies that he is one. His future, just like everyone else with Autism or any type of neurological or learning disability, hangs on how we handle things today. When we cut services, we cut their chances of reaching their goals, and having a purposeful life. When we constantly send the message that they won't amount to much anyway, it kills their spirits. When we overlook them, talk about them as though they weren't present, we make them feel more invisible than they already do. How much different is it really from what most of us have felt at some point in our lives?

1 in 88 will turn into 1 in 64, and then 1 in 40 and so on if we continue to dismiss our ecological responsibilites, and allow compromised individuals to continue to manipulate bills and laws....
And we will have a crisis on our hands in a few years when these children age out of the system if they continued to be neglected by the school districts, the federal government and the local govenment.

You need to know that my son, and every child, teen, young adult and adult like him are a "person first'.
There is nothing subliminal about that..



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