Kids with autism fare best with early intervention, various therapies that range anywhere from $100-200 per hour. While the provincial government here in Ontario recently vowed to improve wait times and increase access, the current funded therapy (averaging 12-16 hours per year) isn't really enough to significantly impact in a child's life.
We should have known from their birth that this was going to be a lifelong battle. I remember after the twins were born, listening to other new moms brag how their kids were sleeping through the night at three months old and secretly hating them. I remember trying all the same things I had done with my first and wondering why it wasn't working with O and W. 1 to 3 hours of sleep for their first 18 months would destroy the strongest of men but somehow we survived it.
People with autism are not all violent, unthinking, unfeeling or uncaring, incapable of progress or love. When supported in a loving environment and by people who believe in them and their potential locked within, most of the kids can go on to be very successful and lead fulfilling lives with loving relationships.
He doesn't have a "special" talent. In fact, less than 10% of the autistic population have some kind of savant talent. When you ask about his "talent" and he knows that he doesn't have one, he feels less. He feels as though he is being judged for being "wrong" yet again. I hug him and tell him that you mean well, and that the drawing he did of Spider-Man really did rock! What I wish you would ask instead, is this.
Autism officially entered our lives on June 7th and then again June 14th, 2005. Not only was this new territory -- it was no man's land. Scary quicksand territory. Never before had our parenting skills been put to the test as it was in the latter half of 2005. Not just our skills, but our belief in ourselves as parents.
Recently, I have become aware that something seems to be happening in our little autism family bubble. I'll name it Autism Fatigue. After 13 years of nothing coming easy, 13 years of aforementioned preparation and coaching, and teaching and coping and surviving and striving and advocating and fighting and praying.. I got tired. Christmas had fallen to the wayside, and Halloween was next.
When my husband answered the phone you gently took over the job of restraining my son...something that no public servant has ever dared to do. We've had teachers and support workers tell us that they're not allowed to touch a child, even when it's a matter of keeping our son safe. But you held him firmly and respectfully, as gently as you could, without a trace of anger or fear on your face. "I have a lot of experience with autistic kids," you told me, and it showed.
What kind of mom drugs her kid? The mom who is tired of walking on eggshells, wondering who her child will hurt today. The mom who is tired of watching her baby suffer inside his own skin. The mom who, fighting back tears, dutifully takes the scrap of paper from the doctor with the round glasses.... What mom does that, anyway? The kind who will do whatever it takes to help her child feel better, even if it means doing precisely the thing she vowed never to do.
Children whose parents do not work together to co-parent amicably, maturely, and fairly, have children who feel overwhelmed, neglected, and stressed. It's time for the adults in the room to take the next step in acknowledging what they need to change in their lives to give their children all they've got.
Our son, Casey, has autism, a neuro-developmental disorder that is often characterized by rigid and repetitive behaviours, difficulty with social communication and uneven intellectual development, among many other challenges. Regular participation in an integrated public school has not always been easy for him.
It's been almost a year since Jacob last attended school, his immune system too weak to risk exposure to even a simple cold. Nothing with Jacob is ever simple. Life goes on, days stretch into weeks and before I realize it, nine years pass without time away for my husband and I to unwind and relax together.
Sharing the obstacles I encounter as an advocate for my son with severe medical issues is done with the hope that people will begin to experience a bit about what I, and many others, deal with on a regular basis. My objective is that if people know and empathize with our tribulations, change will be more likely to occur.
When my son was a toddler, I remember a few events that I declined to attend simply because it was too complicated -- I just didn't have it in me. Looking back at the earlier years, I realize just how little people new about my son and his autism. I think our experience would have been different had others been more aware.