For the first time, mama was the one who got ditched on last Saturday’s ride to transfer station. “Want grandma?” Jonah asked pleadingly. I was happy she got the chance to ride along, for once. I guess during their ride Jonah had a small meltdown, but no injuries were reported.
While I waited for them I took Clan of the Cave Bear off Andy’s bookshelf, and sat on the front steps reading my favorite parts.
On the ride from Anderson to Andy’s house, the sun caught Jonah’s “octopus” and made it glow
My mom brought down a small cake, a candle, two cards with gifts (one from her and one from my aunt T and uncle D, who always loved Andy), and some Happy Birthday balloons to celebrate daddy’s birthday. Jonah especially loved the cake, and he carried the balloons around while he watched train-on-TV.
Boo, loving him some colorful birthday balloons!
Jonah has three weeks off from school now until regular school starts in September. Andy takes him for a visit nearly every day, and I hear tell from him that Boo has been a pretty good boy.
His new favorite food request is green cracker? which are those packages of 6 crackers-n-cheese. He calls it green cracker because his favorite kind is the one with chives in it. Boo seems to like a lot of stuff I wouldn’t even think of eating until I was an adult: cream cheese, sour cream, bleu cheese, salad, you name it. Also “fie-cheese-zanya” which translates into five cheese lasagna, a frozen meal Andy sometimes prepares for him. There are times Boo eats one food after another. Tuna fish sandwich and chips done? Okay, how about some donuts? Donuts eaten? How about some salad? I sit and think really, kid? Dessert does not necessarily come last, and requests for all manner of foodstuffs must finally be refused lest Jonah explode or get sick. Good thing he has his mama’s skinny frame and fast metabolism.
The other night I was trying to sleep and an oft-buried thought came to me unbidden: What is going to happen to my precious little Boo? Where Jonah is concerned I live day to day, mostly by necessity. But he will be 12 in March, and I’m too old to pretend the years do not slip past as if on an ever-speeding conveyor belt. It has no OFF button (well I suppose it does, when we die) but continues on its relentless journey forward: gears cycling, turning, and spinning just like Boo. It foretells a formidable future.
I need to call the school and talk to them about this. I think they start pre-vocational training at age 12, and I know they have a mock apartment to teach independence. I understand they guide the children from one life phase to the next with expert care. But the aggression! What of his behaviors? Who wants a randomly biting, hitting, kicking, object-throwing janitor or grocery bagger?
Will he be able to live in a group home if he still has those behaviors? What is the alternative? Move home to his aged mama to beat her up all day? What happens to all these people with autism who were in the first phase of the “epidemic” and are now entering adulthood? Do we have the resources to care for these individuals? Are we prepared for large wave after bigger wave of young autists entering society? Do we know how to appreciate the gifts they have and not simply try to make them all just like us?
Can I get Jonah to a peaceful point before he ages out of Anderson?
My mother insists on it. She wants me to give this gift this to her, to use all resources, do anything I can, pull out all the stops, and make it happen. She tells me she wants to die in peace. (She is 70 years old and to the best of my knowledge she is not dying – at least no more than any of us is dying). Of course I want her to die in peace…but she’s giving me a tall order.
Mama the magician. Better polish my wand.
The Never Normal 
Hi Amy, your words struck a chord with me. I don’t know what help there is where you are. Here, Social Services are wonderful (despite the odd complaint one sees on the news) the care company we use are superb (unlike the last one which was diabolical). James is now 30 years old. He lived at home with his mum and dad until they died within four years of each other. At the age of 28 he was suddenly an adult, out on his own with Aspergers and Klinefelter’s and an assortment of other problems. He is not on his own though. We are told we are not responsible for him, not legally responsible that is, though we are Trustees for him and as aunt and uncle, “family”. Day to day though, he lives on his own with care workers calling in as necessary. They make sure he gets to his work (he cannot hold down a paid job as he talks constantly about guns and knives, beating people up etc. in a loud and often aggressive manner) He is not aggressive nor likely to do anything to anyone but people are worried by him. Still, he gets the support he needs to live by himself. He is treated as an individual and not made to conform. We help him with his money and his household bills etc. and I am at the end of the phone when he wants me. It is getting easier and we have felt the stress of looking after him leave us. A good care company is so important. I hope that there is a similar support network for you. I assume that the school will have contacts and a plan for when Jonah is older. You are right to think of it now though. It will be so much easier when the time comes if you have investigated it beforehand. I wish you the very best with that. (Great to see Jonah so happy in these photographs too!) Debbie X
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Thank you Deborah. I’m glad you shared your thoughts and things are getting easier for you!
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