special needs children
The ugly truth of caring for kids with special needs as they age is that it starts to feel like a job or a burden. Loving them and parenting them does not.
It all starts with the parents.
Autism Awareness Day now has a different meaning for me than it did back then. In those early years I just hoped that people would know what autism was so that I didn't always have to explain my boys' differences to them. It evolved into wanting people to understand that our boys were different, but not less. Then, it was wanting acceptance so that they would be accepted into the rest of society and have access to the same things their peers had. Now I think it's about shaking the world up to realize that even if autism has not yet entered their own perfect bubble of a life, at this increased rate of prevalence, it will very soon.
Twelve years ago my twins were diagnosed with severe autism and I have lived in a constant state of alertness ever since. Therapists liken it to what a soldier experiences in combat. I have to admit that I can relate to the 24/7 heightened alert that never allows your mind or body to rest.
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.
Halloween is a fun time of year for most children. They love getting dressed up in costumes, going to parties, as well as going trick or treating where they get the best thing of all, candy! But for many children with autism this is a very difficult holiday. What can a parent do?
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.
The groundbreaking comedy is here to shed some light.
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.
Much of what we see as "misbehaviour" in kids is actually "stress behaviour."
As the debate rages on in Ontario over access to provincially funded Intensive Behavioural Intervention (IBI) therapy for children with autism over the age of five, let's not forget about autism's close cousin, Attention Deficit Hyperactivity Disorder (ADHD).
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.
Blogging became my way to connect to other parents in a natural way, and connect as a writer and artist to something else on a deeper level, my creativity, and need to share my own learning and growth as a result of my son.