One of the first things to be discussed after he was diagnosed, and we tried our best to stay focused on the doctor’s words was: “Get all the therapies set up as soon as possible. ABA is the very best…has a great track record…waste no time…basically, a kick butt and take names kind of attitude.”
We spent our ride home talking about all the calls we would start making as soon as we got out of the car. IMMEDIATE, IMMEDIATE, IMMEDIATE became our mantra. Get him set up with special education classes immediately. Get him into speech therapy immediately. Get him occupational therapy immediately. Get him physical therapy…YUP! ya guessed it…immediately. WE HAD TO GET ON ALL THIS STUFF IMMEDIATELY…IF NOT SOONER!! The entire time we are traveling back home and discussing everything we would glance back at Drake…watch him in all his innocence…having no clue as to all the work that was now going to become an integral part of his being. His being? His existence? Good God this kid is only three years old and his life has taken a drastic turn and he has NO awareness…and that was really a good thing…for us, unbearable!
As soon as we arrived back at Jen’s home, items were thrown on the countertop, he was grabbed and bombarded with hugs and kisses and more hugs and more kisses; not understanding the tears that were running down our cheeks and falling onto his beautiful little head, which I suppose was a good thing. He was tended to an then out came the phone book. OK, OK…where do we start…whom do we call first…what to do—what to do. Despair can cloud your thoughts yet it can also spur you on. What a weird word! What a weird flow of emotions! It started to seem surreal…a dream we would wake up from. But it wasn’t a dream to wake up from, it was a nightmare that was just being. Thank goodness we were too damn stupid about the AUTISM process to know this, for grief may have come in an unstoppable flood, hampering our going forward…and go forward we did…with a friggin’ vengeance. When I think back on everything that transpired I kinda sorta feel sorry for some of the people that dealt with me and my beloved daughter; but only kinda sorta.
We called the school district office and told them about our little angel and informed them that we had to get him into a special program right away; today if possible. WHAT? WHAT? We have to set an appointment and this takes some time? HUH? But we have to start immediately, don’t you understand? This is what the doctor said and this is what we have to do. There was nothing we could do but set up the appointment. Then the insurance company is called to see what was covered. NOTHING? ARE YOU SAYING NOTHING? No ABA? No therapies? NOTHING? NADA? ZILCH? ZERO? NOOOOOTHING? Oh, uh, I see…autism is not covered. Autism is a dirty little word never to be used with insurance companies. They hate it. It means they will have to pay…heaven forbid! We finally figured a way around this obstacle and set up therapies. We are on our way to immediate.
Finally the day comes for Drake’s evaluation at the special education program. While talking with them we found out there was another part to getting him in and that would have to be set up…yet again. (I envisioned myself beating the living crap out of these people but contained myself like a good grandma.) As luck would have it serendipity was on our side. One of the teachers happened to walk into the room to announce that someone cancelled and there would be an (here’s that word again) IMMEDIATE opening for further evaluation. If my memory is correct (at my age it is hard to tell so please bear with an old woman,) he was seen a few days later. Amazing! His initial evaluation at Children’s Hospital was also ahead of schedule due to a cancellation…seems things happen in strange ways.
When we went to the next meeting, we were told they would work with him while we stayed out of the room—but would be able to watch through a special one-way window. They would do different testing, including one requiring a ball. We told the woman testing him that he has this thing about throwing the ball UP and had incredible aim. She just took it in and walked away with our little guy and we held our breath. As we were watching him being tested we see someone hand him a ball…here we go. He took the ball, threw it straight UP at the tiled ceiling and down came a huge cloud of tile dust. I have to admit Jen and I laughed our selves into convulsions. All of a sudden, with all this white stuff floating around, we hear the tester, in a low voice say, “they did say he does that!” Way to go Drakster. He was accepted into the school, starting the beginning of the year and hope began to return.
When I start the anecdotes there will be some from the school experience. There will also be some funny stories about therapy. Hard to image the word funny being used. Actually, some stories are hysterical. Many times we laughed so hard it made it difficult to breathe.
The main thing that came out of this learning process is this: You are the advocate. You have to fight and fight some more if need be. Good thing we aren’t drinkers!
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