Andrew is a bright light. He brings joy to everyone that meets him. He loves playing in the water, and he's as comfortable in a lake as he is in a pool. He likes to jump on anything he can use as a trampoline, including our sofa and his mattress. We have to keep his room free of other furniture because of his love for climbing and jumping. He loves his sister more than anything in the world, and she love him the same. Addy is a fierce protector and an outspoken advocate, winning the praise of adults at the NDP-led emergency townhall on OAP changes, including that of Catherine Fife, Laura Mae Lindo and Monique Taylor. Andrew is a very happy boy, and his favourite stim is loud singing. Just melodies as he's nonverbal. He loves books, and he can flip board pages for hours on end. Andrew is enthusiastically affectionate with people he trusts, like his family members and therapists. He forms very tight bonds with the therapists he likes, and rejects the ones he doesn't.
Andrew has some challenging behaviours. Being nonverbal and in an early phase of PECS he tends to get frustrated when his needs are not met, which can escalate in to very loud screaming, stomping, and hitting. These behaviours are of course quite disruptive and at times dangerous, which makes us fear for him joining a mainstream class. Andrew is an elopement risk, so we have to put child resistant doorknob covers on his bedroom door and our front door. At 6, he's still not fully toilet trained and frequently has accidents, but his therapy has contributed immensely to improvement. As he gets older we can take him further from home or out for longer periods of time, but he tires of strange environments quickly and will sometimes get very upset without the familiarity of home. This fact makes the prospect of selling our home to continue his therapy ever the more terrifying.
For three years, he's been in ABA (at times IBI but not currently). He's done both in-centre and at-home programs, strongly preferring the latter. Over his time in therapy we've seen him make huge strides in communication and self-regulation, and we seen him lose that progress during extended breaks or changes in venue that don't suit him. The principles of ABA have become integrated into his daily life at home, where visual schedules, PECS binder and routine rule all.
Bedtime has become a daily challenge. Andrew seems to fail to associate being tired and frustrated with sleeping as the solution. Instead he fights to stay awake. Without the help of his mom, he will happily stay up until dawn, yelling and jumping on his mattress. This has obvious consequences for him, his parents, and our neighbours - to say nothing about my employer.
Since February 6, 2019 we've had to limit his therapy to communication-related programming, despite his clear need for broader OT and life skills teaching. We're focused on giving him the tools to communicate his needs clearly in the hopes that we can mitigate his frustrations before runaway behaviours take over.
His mom has resigned her position with the local Catholic School Board, where she has worked for several years. She is tearfully done at the end of this week, after which she will be spending her days learning from our therapists to take over as his primary therapist after the funding runs out. Of course this would never be allowed of a professional therapist, where dual relationships are strictly forbidden in the service of maintaining clinical objectivity. But forced false austerity is far more important to this provincial parliament than ethical delivery of services to the disabled.
Autism has already brought a great deal of stress and uncertainty into our home. We fought the Liberals for proper treatment in 2016, and after we won that fight our son's future became much clearer. I openly supported Amy and helped with her campaign. I trusted her and Patrick Brown to do right by the autism file while restraining out of control spending at Queen's Park. I'm not typically a conservative, but I felt that the Wynne Liberals had to be removed, and Patrick was my best bet. When Pat was ousted for allegations of sexual misconduct, I stood by the party as a hasty and ruinous leadership race fractured it.
And then Doug Ford won, or rather stole, the leadership. In a display of pure contempt for democracy, he overrode the will of several riding associations and replaced candidates at his discretion. His bombastic promises and total lack of platform didn't seem to phase his base, among which I was no longer.
On May 7 2018 he stood in front of TV cameras at the City TV leaders' debate and PROMISED the autism community that he would take care of our children's needs. And now we're here. I and 40,000 other families are standing on the edge of a chasm, and Doug is about to shove us in. Amy Fee, the shining-armoured knight of our cause, has meekly and mousily remained totally silent except to bleat support and declare the changes "hard". Lisa MacLeod, the Minister Responsible for Women's Issues, is overseeing the largest mass-destruction of women professionals' careers in living memory.
I will do whatever is necessary for my son. Don't weep for him, we are privileged and lucky enough to be able to survive on one income, even if it means losing our only home, cashing out our retirement, and living a pauper's existence while Doug chugs buck-a-beer. Instead, weep for the families who do not have that luxury - the single parents, the underemployed, the families with 2, 3 or more children in need of therapy. We fight for them. We fight in the hopes that the Ontario we've been sold since childhood is real, and this money hungry kleptocracy is just a bad dream. We fight to wake up from that living nightmare, so that we can then fight for children with all disabilities, and adults with ASD who live on half a poverty wage.