Saturday, May 2, 2009

The hardest part about raising a child on the Autism spectrum

It's hard to find out that your child has a diagnosis on the autism spectrum. Your world turns upside down at that moment. It's hard dealing with the very wide and varied behaviours that are associated with autism. The tantrums alone can sometimes require medication and/or vast amounts of wine to get through (for you, not your child). It's DEFINITELY hard trying to navigate your way through the mountain of paperwork and red tape associated in trying to find the right help, help that will work for your particular child. Doctor's differ with their advice, therapists have other ideas, play therapy, music therapy, IBI therapy, there's so much out there to try. Doctor's appointments, occupational therapy, speech therapy, sensory rooms, chiropractic, your busy running from one appointment to another, sitting in waiting rooms hoping that THIS next expert might have some answers that you are looking for. Jenny McCarthy says she cured her son -- maybe what SHE is doing is the way to go -- who am I to not listen to Jenny -- she's been in Playboy for Pete's sake!!! And she is always on Larry King -- this MUST be the answer!

It's really, really, REALLY hard dealing with the public school system! You educate yourself, you know what your child's rights are, you know what the school system, the school boards are SUPPOSED to be providing for your child -- and you see how they are failing miserably. You sit in meetings with officials that clearly haven't got a clue what to do, and you think to yourself "what is going to happen to my poor child?" It's hard.

But the very hardest thing, in my opinion, when dealing with a child on the autism spectrum, is having to deal with the public, and their perception of everything. There's just nothing that compares to the steely glances of other mothers in the supermarket, mothers of typical children, who observe your child behaving badly, and, with one sweep of their glance, deem you unworthy as a parent.

The hardest thing is standing in the school yard, watching your child walk around in circles in the kindergarten class, waiting for the bell to ring, hearing other children talk about him --one boy saying to another -- "do you like that kid? Nobody likes that kid"....those are the moments that sting the most -- the moments that don't seem to affect your child, but that stick with you throughout the years. Standing on the sidelines during a soccer game, hearing a coach make comments about the "kid playing in the dirt" while your child, who is fascinated with the patches of mud on the field, not the game going on, remains unaware.

The very hardest thing is standing on the side of the playground, watching other children exclude your child from their play. For me, that is the very hardest thing about raising a child on the autism spectrum. Yesterday Limefreckle Jr. was at the park, and he approached a group of children playing with a soccer ball -- they were playing a made up game that looked like a cross between tag and dodge ball. Limefreckle Jr. so wanted to be part of the game -- he approached the kids and said "hey, can I play with you?".....he followed them around, asking " can I have a turn now?" he faithfully ran off to fetch the ball everytime it went out of bounds -- only to be told "hey kid, give us back the ball" was hard to watch. In 8 years, he has struggled socially on the playground. Yesterday I clearly got to see the benefits of all the therapies and effective schooling paying off -- he was on the playground, behaving pretty much like the rest of the kids, as much like them as he can be at this stage of his life, and he was still being ignored. He has learned how to "play" the way other children do -- yes, that is something that has to be taught. "Play" in the way Limefreckle Jr. sees it, is not acceptable to most of society -- so he needs to be taught to "play" like the other children, the "NORMAL" children --- and he is doing it --- he is following the rules, he has learned it. We live in a neighbourhood of fairly well off families, and by watching their children on the playground, it shows. The children travel in cliques, just like their mothers do, their quick to judge the others, and even quicker to exclude. Many of these children are students of the school Limefreckle Jr. used to attend. A "religious" school, a school where one would think the children learn the teachings of the church, where children would be taught to be kind to others. You only need to go to the parking lot of this school at the end of the day, and listen to parents yell at each other, and fight for spots, to see that some of these teachings may not really be sinking in, to parents or to children. I guess this is the life of middle class suburbia, this probably isn't too uncommon in all parts of the country, probably in the same neighbourhood that you lived in -- "It takes a village" isn't a phrase most people around here are familiar with!

But it's most definitely the hardest part of my journey -- other parents, other mother's, other children and their judgements -- that is the hardest part!



BabyonBored said...

You post made me tear up. Kids are mean and unfair and I've been thinking a lot about this issue just as to how I'm going to protect my "non different" oldest daughter from losing any of herself to become like everyone else. It's so so hard. I'm sorry.

Grandma Limefreckle said...

Do you now how much this breaks my heart - was I there for you as much as I should have been. I think the hardest thing for me is knowing how hard this has been for you and I hurt for both of you, however you know that I love you to the moon and back and Limefreckle Jr. is truly one of the loved kids on earth and what more can you ask for? I love you.