gpointstudio via Getty Images
It all starts with the parents.
tatyana_tomsickova via Getty Images
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.
SerrNovik via Getty Images
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.
FatCamera via Getty Images
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.
MariaDubova via Getty Images
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.
JGI/Jamie Grill via Getty Images
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.
DusanManic via Getty Images
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.
Don Mason via Getty Images
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.
Stuart Dee via Getty Images
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.
MakiEni's photo via Getty Images
The groundbreaking comedy is here to shed some light.
Rob Lewine via Getty Images
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.
Highwaystarz-Photography via Getty Images
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.
PhotoAlto/Anne-Sophie Bost via Getty Images
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.
Dimitri Otis via Getty Images
None of us are at our best when we're tired or stressed out, especially kids. In fact, much of what we see as "misbehaviour" in kids is actually "stress behaviour" -- the result of being over-stressed, unaware of it and unaware of what to do about it.
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.
Adele noticed changes in her youngest son, Aidan, who was only 14 months at the time. The changes she noticed were: he completely stopped talking; he would not respond to his name; had many night terrors; made no eye contact and he would get much more frustrated.
Ana Abejon via Getty Images
The past half-year has been hard on all of us, each family member affected in different ways. I can only begin to imagine how uncomfortable and awkward it must be for Jacob to have so many strange caregivers, some with questionable skills, performing intimate tasks including bathing and suctioning.
For a parent of a special needs child, many of us are faced with the challenges of a day when our children, many of whom don't like touch, affection or cannot understand the meaning, and wonder how to go about celebrating this day. What's a parent to do?
Matthieu Spohn via Getty Images
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.
Sally Anscombe via Getty Images
There is no need to think that, with autism and other anxiety related issues, my son cannot go on to do a job he loves, have friends and even live independently or semi-independently. It's all in how much he is encouraged and given opportunities to explore what he loves to do.
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.
Caiaimage/Monashee Alonso via Getty Images
Designing Jacob's Halloween costumes is an annual project in our house. One year, we built a drum set around his wheelchair. Another year my husband, Andrew, constructed a race car emblazoned with a F...
Blend Images - KidStock via Getty Images
Take my little man, for instance. If the mere sound of nail clippers is 'painful' to him, you can imagine how torturous Christmas is. Before he was diagnosed with autism, we spent the better part of a gathering holed up in a bedroom away from the very family we were there to visit.
Ah, that first visit to Santa. Remember how your little one cried and was scared, clinging to you? But you knew that this was temporary. Next year, he/she would be fine with the Santa visit, a rite of passage for most North American children today. But what if your child is not like all the other children?
Nadezhda1906 via Getty Images
“I just assumed that the school board would be receptive to working with our team, willing to create the best educational plan available for my son. Boy was I wrong.”
Kali Nine LLC via Getty Images
Some children need smaller classes sizes, more one-on-one attention, or other services that more specialized or private schools can usually offer. For special needs children with all types of learning issues and challenges, the situation can become even more complicated.
Courtesy of Blogger
Halloween is a magical night for parents and their children. There is no reason why special needs children can't have as much fun as their neuro-typical peers. They may just need a few tweaks in the tradition to make it a happy event for them and their families.
Last year at this time, I was helping Jacob settle in to his new school, working closely with his teacher and the school's Vice-Principal to ensure a smooth transition. This year, instead of arranging Jacob's uneventful passage to grade seven, my energy is focused on ensuring that Jacob remains healthy and strong.