Monday, June 4, 2012
Where Is The Support?
I'm so angry right now.
So angry. I'm so angry, and deflated, and crushed. Do you know what I'm sick of? I'm so, so sick of "WHAT YOU SHOULD DO" ideas, versus what's actually available.
Take FOOD, as an unrelated example. All the time we see articles that say things like: "We should eat 5 servings of fruits and vegetables today," or "Canadians are not eating enough veggies and fruit per day" and other "shame, shame, tsk, tsk" themed articles about all the good food we're not eating. And then you go to the grocery store and find that FRUIT AND VEGETABLES ARE AMONG THE MOST EXPENSIVE ITEMS IN THE STORE.
So, if you're the struggling parent with only $50 to spend on groceries for your family of 4 or more, are you going to load up on fruit and vegetables, or are you going to buy that giant box of MINUTE RICE?
Should do versus reality.
Oh, parents of children with Autism, doesn't this make you think of the SYSTEM?? The grossly lacking system.
We hear all the time, that when children are diagnosed with Autism, it is of TANTAMOUNT IMPORTANCE that some sort of educational and behavioural modification happens before that kid turns 5.
Good fucking luck.
When I was in suburban hell, my son was diagnosed with "Autism Spectrum Disorder" at the age of 3 1/2. I was advised to get him into a nursery school setting, where he could learn to emulate his peers, and be socialized. I also applied for all kinds of programs, and I was on a waiting list for all of them.
The only organization that didn't put me on a waiting list, was a local community living group. So, I had a young, lovely girl who came in to his nursery school, and tried to work with the teachers to see if they were implementing various things to help my son cope with school.
I took Jack for an evaluation with a prominent organization that provides IBI (Intensive Behavioural Intervention) services. YES, they said, Jack does indeed qualify for IBI.
Oh, but so sorry--there's a 2-3 year wait.
Sorry about that!
And then I moved back home when Jack was five, and the new owners of our old house forwarded some mail to us. There was a letter from this organization. Congratulations, a space was open for Jack for IBI! Hooray! Oh but wait--it's for weekday sessions, and WHOOPS, Jack's in school and OOPSIE, YOU'VE MOVED.
Too bad, so sad.
Mostly I try to do everything myself. I'm so sick of waiting lists, and convoluted, confusing processes, and being overwhelmed with different organizations. But, the kid still wears me down completely at times, and we still have a lot of things to work on in order to eliminate a lot of the strife in our household. So, I caved, and tried again.
What I want is a social skills workshop for my son. I would also love a respite program. I want to find someone who can really teach Jack how to stop going from happy to I'M GOING TO BITE YOUR ARM BECAUSE YOU SUGGESTED I SHOULD SIGN UP FOR SWIMMING LESSONS THIS SUMMER.
So goody, we're all signed up! We did the rigamarole, and went through the middle man first to do the intake forms and find out what services are available. And oh boy, there are some tantalizingly wonderful programs available! Wow! There's this social skills program which would teach Jack how to play with his peers, and they'd go swimming, and even go grocery shopping and bring back what they bought and make up a meal and...
OOPS, so sorry, there's a ONE TO TWO YEAR WAIT.
Sorry about that.
I'm pissed. I feel like crying. Am I supposed to be satisfied that there is ONE EDUCATIONAL ASSISTANT to serve Jack's entire school? Is this GOOD enough?
I want to get on the phone right now with the go-between group we had to contact and tell them this is unacceptable. We need something NOW. I'm too angry though, and I might not do a lot of good in this mood.
If Autism is on the rise, if it is so much more prevalent now, supposedly, than it was 20 years ago, where are the services? Where is the support? How many mothers are sitting on the stairs crying, because they just wanted to go out and buy a bag of milk and their child is having a melt down? Again? Like Yesterday, and the day before that and the day before that and the day before that...
It's not enough. It's just not enough.