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Autism

What Having a Son With Special Needs Taught Me About Being ‘Normal’

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Like all parents, I want my son Matthew to have a “normal” life. But what is normal? He’s a teenage boy. On the one hand Matt is a very lazy 17-year-old; I haven’t seen the floor of his bedroom in God knows how long. Somehow, he can always find the energy to play video games or watch Netflix movies for hours on end, but he cannot muster the energy to empty the dishwasher without 100 reminders. What’s more, he can play X-Box with friends (online)–managing to communicate with each person, his laptop open to Facebook chat, his phone connected to FaceTime or snap chat–and yet, he struggles to converse one-on-one in real time, face-to-face.

Is this all just typical 21st century teen behavior? Or is it just my son?

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I should start by explaining that Matt carries the following diagnoses: ADHD, Asperger’s Syndrome, Mood Disorder-NOS, OCD, ODD, and Tourette’s syndrome. I list his diagnoses in alphabetical order because I can never decide which takes precedent and each day seems to highlight a different challenge. Life for my teen has not been easy.

I was a Jewish mother long before I became the mother of a child with a developmental disability. I had and still have such high hopes for my baby. Who doesn’t? But it’s different when your child carries with him a list of diagnoses like my son does. Are you like me? With every achievement your child makes, with every step forward, do you stop and wonder if maybe you are past the worst, and if maybe you’ve reached the other side of it, only to find shortly thereafter that a new one is waiting around the bend?

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As the age of 18 closes in on us, I have found new things to worry over, new challenges ahead. Girls! College! And what type of college? A two-year school? Community college? A private school, or an in-state college with accommodations? And what about his career? Of course, I trust that all of these milestones are within his grasp, but every single one has its own set of hurdles for us to jump over. As his parent, my job is to take his vision and make it attainable– just like any other parent would do for their child, with or without a disability.

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When my son was studying for his bar mitzvah, his tutor helped him remove the words “I can’t” from his vocabulary. He urged him to change those words into “I can’t yet.” By adding that little three-letter word, the world has opened up for my son.

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For example: Last year, he decided he wanted to get his driver’s license. I was a little hesitant…OK, I was very hesitant. He had recently developed a new tic that involved looking up at the ceiling and running his finger up the length of his throat numerous times. I didn’t see how he could manage yet another challenge and also learn to drive safely, let alone pass the necessary tests. But my son was determined. And who am I to prevent him from attempting to master such a teenage rite of passage?

After reading the Registry of Motor Vehicles book online a few times, he walked into their offices with his IEP (Individual Education Plan Document) in hand. He handed the officer the page of his IEP and calmly explained that he has difficulty with timed tests. The officer told him it was no problem and shut off the timer. Matt took the test without pressure and actually finished within the time typically allotted. He passed on his first try.

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I was so proud of him for being his own advocate and knowing what he needed to get to achieve his goal. He passed his driving test the first time out, and I think that was due in no small part to the fact that Matt advocated for himself. It’s important to provide our teens with a sense of self-worth; with hard work, dedication, and the necessary accommodations, Matt can do whatever he sets his mind to.

And just like Matt needs support in school to get him through tough times, I need support, too. We collaborate on Matt’s pharmacological and talk/play therapy treatments with a supportive team of clinicians, and this collaboration has helped me focus on his physical health and education. We also work with Gateways: Access to Jewish Education, an organization that provides Jewish education resources and materials to children with special needs. Matt was a “Mitzvah Mensch,” (teen volunteer) a few evenings a month. Gateways allowed him to be a part of an organization that valued all teens for what each brought to the table in a very supportive environment. Its hugely beneficial to seek out an inclusive social group that provides interests that match those of your teenager; I have found that peers provide more self-esteem boosting for one another than we as parents can teach or provide.

I love the quote “normal is just a setting on the dryer,” and I reflect on it when Matt is having a difficult day or feels challenged. I might not be able to change how Matt feels, or change his list of diagnoses, but as a parent, it’s my job to make sure he is empowered to face each challenge and do the best he can.

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