Let me explain what it is like to go from having a child with autism to having an adult. If you already know what autism and adulthood like feel free to skip ahead to the picture at the end of this post. If you already know because you happen to be one of the few parents of 18 year-old girls with autism on the planet CALL ME (yes I’m doing that awkward thing where you make a phone with your hand and put it up to the side of your head).
So you are moseying along, you’ve already read that you got on the wrong plane, you are in Holland, etc, etc. You have discovered that there’s some nice scenery but it can also be torn down, smeared with meltdowns and covered with poop.
Someone told you you had to learn Spanish/Russian/German or whatever language you know NOTHING about and you’ve gotten sort of good at it over the years. You speak up because you have to so people will understand you and for the love of God give your child what he or she needs. Sometimes you can do that fancy thing were you roll your r’s. Sometimes you end up a jumbling, spitting mess while trying to get to the end of the damn lesson.
Anyway, you’re in this place, you’re getting the language down and then guess what? You’re child is 18. You thought you were getting good at Spanish/Russian/German? L O L. It’s time for Chinese everyone! Chinese spoken backwards.
You’ve got a stack of paperwork tall enough to feed your family of six atop and it all needs to be filled out yesterday. Did you miss the deadline for the intro to backwards Chinese class? Yes you did. You’re in the advanced Calculus of foreign languages now and the homework passed due.
There is also no teacher for this class. You grabbed ten assignments from the state and one from your county offices and hey, here’s another 25 from your local school district. Ooh and act fast because if you don’t, all the backwards Chinese coursework will be in your child’s name because he/she is now an adult.
You will talk to people, many, many people and they’ve all been doing this for many years. They’ve set up programs and job placements for adults with disabilities for ages but autism? Oh wait, they’ve got a faded copy of the Rainman screenplay somewhere.
Your backwards Chinese sucks. It’s getting a little better but you spend most of your first year listening to on-hold music so you don’t get to practice it much. If you’ve been delivered to a new land it’s the desert. There’s no scenery, no furniture and certainly not a well-staffed, developmentally appropriate place for your now adult to live the independent life you are hoping they will have some day.
The calendar nears the end of year one and you’re still kicking sand in the desert, yelling out some backwards Chinese to anyone who knows a word or two and very sure of the fact that tulips are a mirage.
You’re feeling a little more confident and waiting for your badge to come in the mail that states you made it through Adulthood: Year One. It’s very possible it is lost in the mail with the badges for Childhood: Years One – Seventeen.
You glop on the sunscreen, stock up on earplugs and thank the Chinese zodiac that you’re done with paperwork for a while. You’re going to need some time to reinvent the wheel and be a one woman welcoming committee to the thousands of parents getting dropped of at your stop soon. There’s enough of them coming to fill all the luxury cruise ships floating the seas but the travel agency shoved you all in the same lifeboat.
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i have a friend who is about to take that trip with her only child & I have no idea how to henlp other than just to listen. (hugs)
My Inner Chick says
You will get what you want.
I work in a classroom w/ 10 autistic children. THEY ROCK & crack me up.
btw. have you watched “The Story of Luke” on Netflix? I LOVED it. It is the story of a man w/ autism…how he changes the people around him. xx
Kate Hopper says
Jessica, I’m so sorry that you’re not getting the resources and support you need. STILL. AGAIN! I’d love to put you in touch with a mom whose memoir I’m co-writing. Her sons are almost 24 and have severe autism and she’s had to navigate this tricky terrain. Shoot me an email and I’ll try to get the two of you in touch if you think that would be helpful.
Kathy at kissing the frog says
I can’t imagine this, but I guess I’m going to have to in 8 years. Please keep telling us what it’s like because we need to hear.
And I’m sorry that it’s hard. xo