Last week was a challenging one. As we venture out into the world anew as the parents of a child with autism this world that seemed somewhat friendly before has suddenly become a little on the hostile side. We have already come to realize that we will need to be strong advocates for Van. Our whole view on our lives and future are beginning to shift as his future becomes the integral sun that our planets are circling intensely. Obviously parents with "typical" children focus with similar intensity on their children's future but for us it has moved into a new realm. As before we wanted what was best for him within reason, now we will sacrifice whatever we need to, to ensure that he has the absolute best, perhaps without reason. In the past two weeks we have spent copious amounts of time visiting and researching daycare facilities, researching autism and attending the Ottawa branch office of the Ontario Autism Society (where we spent two hours speaking with the family intake coordinator and browsing through their resources), and getting our ducks in a row to tackle the large list of potential resource providers. We thought the paperwork ended with the adoption process. But no, another huge mountain of paperwork awaits. Ugh.
So we have already faced what I imagine will be a lifetime of societal hurdles. Last week we were invited to attend one of the daycares we had contacted. It is a private school recommended by our psychologist. Oddly they asked us to bring Van too (oddly because normally you meet them first before dragging the child along). Well it seems they had no intention of offering him a spot. It turned into the principle painting this frightening picture to us regarding the struggles with having a child with autism and how they wouldn't want to take him as he would be disruptive to the children already there (it went on and on but that's just a sample). It was awful. We left feeling dirty somehow. I of course complained afterwards and told them to revisit their policies. I guess complaining will have to become second nature now.
The second experience was at the YMCA. We were overjoyed to discover that child minding services are provided to members while you work out. Great we thought! $5 for 2 hours, in the meantime Pat and I get to work out together. All they asked was what his name and age was. I recognize I probably should have mentioned the autism but frankly it's new for us and we were still at that point where maybe there was a tiny bit of denial (no more though I can tell you). When I went to pick him up one of the fellows working there came up to me and stated in an unfriendly tone that Van "needed to learn to listen better". He proceeded to glare at me then at Van. I then told him that Van has autism and that one of his struggles is listening. He then got angry and stated that nobody told him that. This is true, I hadn't mentioned it and I accept this was wrong but my god this is a young child. Surely they have struggled with behaviour issues before. Van is not the kind of kid who throws things or has massive tantrums. He just goes into his own world and shuts others out. His behaviour can't possibly have been the worst they've experienced but this guy made me feel like it was. Needless to say I was upset. A bit of crying and yet more complaining to management. They assure me that it was all a misunderstanding and that Van is welcome back at any time. I hope so because respite is important when you have a child, especially one with special needs. But do I trust that this guy will be patient and understanding with my son?
It is obvious there will be many future struggles that we will have to work through and that advocating for my son will become my second full time job. That's ok, he's my son. That's what I'm here for. To protect him and try and give him the best life possible. That is why we are now leaning towards another, much nicer, private school for him. Initially we were thinking only daycare but now we are beginning to assess our finances and are leaning towards some sacrifices so that we can keep him in private school for the next few years. Whatever is best for him has become our motto.
On a final note, the family intake worker at Autism Ontario said that siblings can be so very helpful to those with autism. We were worried that a sibling may not be a great addition. But we were reassured that it will be a positive thing for Van....for our future child as well I hope.