Owen and Ben's Journey Through Autism

Owen and Ben's Journey Through Autism

Friday, August 31, 2012

Little bit of this.. a little bit of that.




As summer comes to a close, camp ends for Owen this week, and dance will be starting for Maddie, we really would not be one of the busiest families if summer didn't end without a big assessment. Actually, the biggest assessment that Ben will face for a while, the government funded IBI assessment to see if he qualifies for funding covered by the government.

I couldn't sleep last night. I tried, but I couldn't. I just had thoughts running through my head, I think I am still a bit in shock that we are going through all of this again. I remember how stressed and difficult it was the first time, and I really thought the 2nd time would be easier, but it's not.  It doesn't get easier. You find ways to cope, to try and rationalize what is going on and find a good way to handle it, but it still finds a way to creep up on you in the most random places, like for me, the gym.

I thought I had a handle on all of this, taking the, "been there done that" attitude, thinking it was easier for the 2nd time around, it's not. Ben is not Owen, Owen is not Ben. Yes they both have Autism, same diagnosis, but they are totally different people, and they are different sons. I was a bit of a fool to think I wouldn't be as emotional as I was the first time, because I am. My 2nd son went through a 2 hour assessment today with Bethesda and McMaster to *see* if he will qualify for funding, so that in 3 years we will finally not have to pay for therapy anymore.

I went with Ben alone this time, luckily Owen is enjoying his last day at camp, and Ryan was not feeling great this morning, so he stayed home with Maddie. Ben has a minor meltdown dropping Owen off at camp (Ben wanted to stay) and had a major freak out in the Bethesda parking lot, including but not limited to SIB's, screaming, and dropping. As we enter the building, he calms down as I brought a snack for him, and we go into a room with several different toys, all geared to his liking (trains, barnyard, cars). I go with the McMaster representative, and Ben is filmed showing his behaviour in different scenarios. We left on a good note, he did well, showed his true self, and right away they could tell transitions are so difficult for him. In the next couple of week, Bethesda will go into his preschool and observe him there so they can send his full assessment to McMaster to be reviewed by the panel to see if he qualifies for IBI therapy - 3 years down the road, we should find out in October 2012 if he is accepted.

When we were leaving, I ran into the woman at Bethesda who handles the intakes/outtakes for the IBI program, and has the list that says what number your child is, and roughly how much longer you will be on the wait list. When I called her about 5-6 months ago, Owen was number 26, today, he is number 20. Not a big jump - and he estimate of when he will receive IBI funding... NEXT summer, not this winter like we were hoping for.. next summer, 2013. My heart sank. Another full year of waiting, we are also done with NPCC, as Owen is now 5 and he is not eligible for a, "Team" anymore. So we have to look at other options again, for another year. Not cool government, not cool.

All of this hit me on the way to the gym with Maddie and Ben, but really hit me as I was working out on the cardio machine. I could feel my face clinching with my fists, my eyes watering: my mood changing. Why are we not living in Alberta? Another year Owen has to wait, and 3 in October for Ben??? Why are we still here?? Are we doing the boys a favour waiting this out? I don't know, all I know that this is not fair for my sons, and the worst part, is I have no control over this. Families like ours are stuck in limbo, waiting for years down the road when they will be finally tended too, having fundraisers like we have had to have to help pay for therapy because on our salaries, we literally can not afford it and live a normal life. What do families do?



All we can do, wait.   

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