Today, April 2nd 2014 is #WorldAutismAwarenessDay. Around the world today there are thousands of parents, families, and other advocates that are doing all they can to bring awareness about the autism world. Many are raising flags, others are choosing to Light it Up Blue. I chose to remain quiet about the whole thing. The thought of advocating leaves me feeling drained. I prefer to keep the energy I have to cope with the daily demands it brings to our family with our adult son.
That is until I received an email today that brought me back to the ‘reality of our autism world’, and that is the need to advocate whenever I feel strongly about something that seems unfair or doesn’t sit quite right with me or that simply needs to be voiced.
A few days ago was the year-end for a government program from which our son receives funding so we can pay for the services he needs. This program helps us to afford and find the opportunities and activities that helps in many ways to bring more meaning to his life. We are very grateful for this program. I was informed today that the government in our province will no longer accept receipts that are out-of-region or out-of-province for activities and outings. This news hit me like a brick wall.
You see, a few years ago our son began telling us that he really wanted to go downhill skiing. You could almost say that ‘Persistent’ is his middle name. He was not backing down on this one so we better get used to the idea that he was going to be on a ski slope one day, soon. He was letting us know that he REALLY wanted to ski. It took a little while for us to get comfortable with that thought of him going down a hill. We asked the young woman that we had hired to support him to see if she could do this with him. Her eyes lit up at the opportunity, and that said it all. She loved skiing, was very comfortable doing so and looked forward to the opportunity to teach our son this new skill. Knowing that if anyone could teach him to ski, it was this young woman, she knew him well enough. The first time out with him they went down the very smallest hill, actually I don’t even think it’s called a hill. The first time down was a breeze for him, so they got on the chairlift and up they went to the bigger hill and have been skiing down those ski trails since and have had so much fun together. This is not an activity that our son can do alone, he needs the support of someone who knows him well. What I saw upon his return from those afternoons that our son got to spend on the ski slopes, was a rosy cheeked young man that came back home laughing and so happy. There was a huge sense of accomplishment for him I feel. There’s no doubt that he had such an amazing time. Just look at his smile. Skiing has been such a wonderful activity that as helped him learn so many different skills, where many of these teaching moments have been able to spread out into other areas of his life. It’s been such a winning combination in so many ways.
Knowing that those skiing afternoons possibly may become non-existent for him in the future because of the distance he’d have to drive to a ski slope in our province, brings me incredible frustrations. How will I explain to him next winter that he probably won’t be going because I cannot use this funding for the skiing activity where he was going. He won’t understand that. All he will get is the ‘no skiing’ part and there are not going to be any happy moments out of that one. He doesn’t understand the government bureaucracy and the reasons behind their decision making. That makes two of us. This frustrates me to no end. It feels like another door just got slammed shut.
The problem that I have with the news I received today is that it places limits for our son again and who knows how many more people with special needs in our area who love downhill skiing or any other activities out of province for that matter. The place where he was going skiing is less than 20 minute drive from this young woman’s home. How perfect, or so I thought, it’s just a hop, skip and a jump into the next province . It couldn’t get better than this. We were so grateful. Now to think of ski slopes within our own province, the closest one that I can think of is 2 hours from our home, which means almost 3 hours from this young woman’s home… which would make it a 6 hours return trip for her to drive our son skiing for a few hours. Where’s the logic in that? Less than a 20 minute drive where they were going, as opposed to 3 hours one way to get to a ski slope.
I easily could have let this brew in me for days, frustrated by a government system, but it would get me nowhere productive. I felt frustrated that it’s our children that get the short end of the stick, again. So instead of brewing over this today, I instead decided to take out the native drum I made myself a few months ago. I closed my eyes and began drumming. I knew at least this would bring me comfort for the moment if nothing else. Minutes passed I don’t know how many, listening to the rhythmic drumming… and the more I allowed myself to let go of this news and to just drum, I began feeling so much calmer. To my surprise, many insights of things our son might love to experience in his life began bubbling to the surface. They were things that spoke of who he is, and his many interests. It felt like a magical moment. I asked my husband to grab a paper and pen and to jot down what was coming to me as I continued to drum. In those few minutes I clearly saw a better life for our son… opportunities with no limitations, somehow unfolding exactly as it should. How awesome. These insights are seeds, part of that dream for a better life for him… seeds that need to be nurtured, watered and fertilized, and also allowed to grow. No limitations. This brings me comfort and that’s what we’re going for.
Tomorrow I will be making phone calls, and advocating… helping bring awareness to the right government people that make these decisions. Asking if they may reconsider the out-of-province issue, when it’s minutes away for our son to experience the downhill skiing that he loves so much as opposed to having him drive 5-6 hours to go skiing. They need to hear from families and how sometimes a decision that seems to make the most sense to them, isn’t always the best one for our children and our families. But first, I need a little bit more drumming time!!