I remember the first Christmas. The shopping cart he was so excited about. Not for the cart per se but for what came inside. We woke up early Christmas morning to find him at the end of a long trail of boxes. All neatly lined up. The shopping cart on its side while he spun the wheels round and round.
I remember not being able to communicate with him. He had his own language - his own way of seeing the world. Hands over his ears shielding him from loud noises - eyes covered against bright lights. Being told by the school district that the problem was on my end - that my child was brilliant; that I just needed to learn how to understand him.
I remember sitting in the car while he screamed at the top of his lungs for what seemed like an eternity. Strangers walking past looking at me as if I had beaten my child. Knowing that the only thing that would stop him was sheer exhaustion. I felt helpless and frustrated.
There were days that I felt like the worst mother in the entire world. Days that he would tell you I was. Days that I would sit in my car alone and uncontrollably cry. So many years later, we still have days like that. Too many.
There were times along the road that I asked myself how I would ever get through this. Begged G-d for understanding. For patience. Those times are not behind me. They are my every day.
Some things haven't changed in the past 14 years. I still often feel helpless and the level of frustration has only increased with age. Gone are the boxes of fake food, and although we talk, we still do not communicate. There is still a great deal of screaming. Frustrated, angry screaming that leaves us both emotionally and physically drained.
I remember the parent-teacher conferences, year after year after year, where we were told that our child was smart (testing showed that) but not engaged. "He zones out... he's not present... he sleeps through my class." Classwork wasn't done. Homework was a battle. Grades fell. Comments from both sides of the table, "We know he can do better." Fingers pointed both directions.
I remember each 504 and IEP. Psychologists and specialists and support groups. Diagnoses and medications and therapies. Parenting classes and books. Explaining to yet another doctor, teacher, friend, family member, and parent.
I also remember the first time he told a joke. Sitting next to him the first time he watched a fireworks show without his ears or eyes covered. The feeling of picking him up from summer camp last year (the first time without a family member). Watching him lead his peers at Boy Scouts or mentor a younger scout. When he left me in a theater to go sit with his friends - people who accepted him and welcomed him. These are the everyday.
But then there are also the everyday battles over homework and responsibility. The constant reminders that he lacks reason and the ability to differentiate right from wrong. The same concerns over hygiene and personal safety we had when he was little. Worrying about what the future will hold for him. For us. Every day.
And, I often wonder how much has REALLY changed in 14 years.
The school district was right - he is smart and I do not understand him. And THAT, more than anything else, leaves me feeling frustrated, helpless. And sad.
Every day is Autism Awareness Day
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