One of my sons is 29 years old. When he was 23 he was essentially mute. Ever hopeful, around that time, I began a new therapy in search of his voice. April 2nd is global autism awareness day. It is also my birthday. This year it was also the release date for my new book called MIRACLES ARE MADE: A Real Life Guide To Autism. All of that is the background story to this:
Now one would think that having a release date set in stone means I also had interviews to address, parties to party at, and book unveiling ribbons to cut that day. But in fact it simply meant that April 2nd was the day Amazon would have the copies online. It was a weird feeling due to the anti-climatic – What now? – nature of the eventless event. There was a Twilight Zone aspect to the confusion in my emotions. You see the thing is, I believe strongly that I have written a book many, many people would be benefited by reading. So I am excited to have it available and unexcited to have it so quietly so. Thus, I sat on the couch drinking my coffee and sing thinking WOW! Happy Birthday Book Release Global Autism Awareness Day to me. My 29 year old put his arm around me and said, “fwum fwine fwurse fwesant fusic” … he likes to start his words with an f.
It was a surrealistic day. One of my other sons donned a sparkly blue sign and took some sparkly blue boxes full of matt finished books to Venice Beach where he planned to sparkle for the cause of autism (and make some money in the process). He walked up and down the bike path harking “MIRACLES ARE MADE … MIRACLES ARE MADE half price in support of Global Autism Awareness Day”. I’d like to think he wore the blue flashlights on his shoulders and did the day sparkle walking and selling my new book as a way of supporting me and celebrating my birthday but the fact is – though this son is no longer autistic – he is still awfully selfish. So I know better. I know he was selling and sparkly spouting simply because I had told him he could keep any dollars he made. I know that because this son is money motivated (which is a good thing because that makes him normal.)
My seventeen-year-old grandson lives with me. He sang me a song but only after his friend told him to. In fact his friend brought a cup of McDonalds java to my door. I love McDonald’s java. I considered grand-parenting the friend instead.
Howard – a bipolar – comedian friend occasionally stays at my house and barters unfinished construction projects in my garage for brain therapy work. He took himself off to an AA meeting for most of the day. Now I know AA meetings don’t last that long but still, in a way, it was the gift of silence.
My grandson beat it out the door with his friend. My 29 year old pulled at me and “fwum fwine fwurse fwesant fusic” f’d in my face.
Now the thing about Dar’s language is it is easily decipherable when you stop and focus and if you aren’t tired or jet lagged. But if you are sinking in a cloud of low grade stress because your still kind of weird used to be autistic son is selling books on Venice beach and possible setting himself up for a mugging … well then, Dar sounds like a bunch of Germans speaking gibberish with lips under the influence of novacain.
Eventually Rye came home having sold all of two books – which barely covered his gas – so I contributed to the fund with a twenty-dollar bill and went to bed glad to have him home. (By the way Rye has his own apartment in Texas and was just visiting. He does well on his own and doesn’t need me to watch over him but whenever he stays with me I regress into caregiver and overseer regardless of my intention to do otherwise.)
The next morning Dar woke me up. He was pulling me out of bed with force. He picked up my black pocketbook and put it in my lap saying ‘your furse’. Yes Dar its my purse. He pulled me to my feet ‘Fum’ Dar I don’t want to come. I am tired. I layed back down and he pulled me back up. He handed me my bag, ‘Your furse!’ At this point I realize he wants me to take him out and buy him something – probably music – but I really don’t want to go. It is 6 AM.
Dar is not normally this insistent. In fact usually he is a giver upper – if you don’t understand him he quits talking – and that is one of our problems helping him.
He pulled me to my feet again and we played out the scene several more times before I finally said ‘OK obviously you want something! Tell me what it is and we’ll do it.’
‘Your Furse For Fantastic Fwesant For Your Firthay!’
I hope you are crying as you read this because you should be. He is 29 years old.
It took him Dar days of trying but he was finally able to speak well enough and I was finally focused enough to listen carefully enough to hear that – of all my autistic kids – he is the most selfless albeit the least gifted
As he dragged me from the house – carrying my furse and feys for the far – Mr. Bipolar -who had finally returned from AA – made a smartass remark about the way Dar was holding my hand as if we were sweethearts and Dar said ‘fiiiet!’ as he pushed me into the car.
It took a lot of listening but he finally got it all across to me:
My son – who couldn’t talk until we started neurofeedback in 2004 – took me to my favorite scenic spot with a McDonalds foffee for me and a fuice for him. We bought a lottery ticket to dream about and listened to fusic as we sipped our beverages.
And even though I paid for it I’d have to say that he was right!
That was one FANTASTIC FWESANT FOR MY FIRTHAY!