Monday, October 7, 2013

Why was I inspired to do this?! How Autism Spectrum Disorder came into our lives.. Part 2

One of the things Chedoke held for parents of the newly diagnosed was a course on how to get your child to improve his speech (or start to speak if he didn't.)  We had a speaking child, but he needed some further development and we attended this workshop for ten weeks.  We met other parents who had kids like ours and at the end of the series, we were sent three people who were on the Autism Spectrum who told us about their lives.  One of them was my cousin David (who I ran into and walked with today.)

When he walked into the room, he saw us and his face fell.  It was clear that he knew why we were there and he was sad to hear it.  After his speech and the rest of the speakers, he came to tell me that if my child ever needed support or to talk, he would be happy to help.  He also advised us to get him into sports that were single- like swimming or track because he would be able to be part of the team.  David is a highly accomplished marathon runner, so he knew what he was talking about.

My gut reaction was that if my kid turned out to be a mensch like David, how bad could having a diagnosis on the Autism Spectrum be?  Anyone who knows my kid, knows he is a mensch, and honestly, I know people who would be happy to trade their typically developing kids with bad attitudes for a kid who might have issues, but is a mensch.  Thanks, David, for being the first person to make me realize that the DX was not some sort of a death sentence.  Today, I hope that I returned the favour by suggesting that David hook up with Yachad in Toronto.

The things that Chedoke provided us enabled us to really get practical and when we moved to Boston, we connected with a Doctor who was referred to us by our Developmental pediatrician at home.  She was amazed at our acceptance of the situation and how knowledgeable we were about our child as well as the disorder.

We have had our ups and downs over the years with regard to living with ASD.  In Boston, he qualified to be in a programme for kids specifically on the spectrum with teachers who had master's degrees in spec. ed from the New England Centre for Autism.  We pushed for integration, which was one of the things Chedoke had pushed us for in terms of advocating for our child.  The Board of Ed saw that we were specifically including him in programmes out in the community which were integrated and that we put our money where our mouths were.

When we came back to Canada, our decision process for where to live included Hamilton because we thought there would not  be a snowballs chance in hell that he could go to Jewish school until grade 8 in Toronto, but with smaller class sizes, it might be more likely in Hamilton.  Both Kehila and the HHA were good to him and he graduated in 2010 with more jewish education than I had.

He went to public school, where while he had an iep, he did not qualify for services, so he had quite a challenge in terms of getting used to classes with 30 kids in them (versus 8 in grade 8) and a school with 1700 plus kids in it.  He did have a learning resource teacher, but sadly he had 50 kids with iep's attached to him and i know he felt like our son needed more. He did pretty well through those years, but we knew that with some extra support, which he did not qualify for, he would excel!

At the end of Grade 10, our son was invited to the pilot Social Communications Programme at Ancaster.  That summer, we went to Israel for the summer and when he returned, he started at the new school.   Before leaving for Israel, he participated in a Shabbaton for Yachad in Toronto and came home thrilled with the new friends and contacts he had made.

In the new school programme, he has done incredibly well.  He has been getting an incredible amount from the programme.  All the students are high functioning kids on the spectrum and one is only allowed into the programme by invitation.  He got straight A's last semester and we were so thrilled with his progress, that whe he asked if he could work for the summer instead of going to Camp, we were open to it.  The next day we discovered that Yachad had a vocational programme at Camp Moshava ba ir and we signed him up.  He lived in Toronto on his own for seven weeks and the programme was amazing.  They taught him to negotiate the world of work, about professionalism, about dealing with colleagues and supervisors and how to be an attentive and agreeable employee.  My understanding is that next year, he will very likely be hired as regular staff.

Both of our kids now participate in Yachad.  They go to events and shabbatonim, they get volunteer hours for their participation and make new friends each time.  It is an inclusive programme where everyone but the advisors are participants and its really amazing to see.  Kids qualify from the age of 8 to participate in yachad programmes and they work to ensure that there is enough support for everyone so that everyone can participate and enjoy.    My son finally has jewish friends again (he had lots of non jewish friends...) and both of them look forward to participating in the programmes in the year to come!

Needless to say, this forms the basis of my intention to participate in the yachad marathone.  I love the programme and i think what they have set up is incredible.  I love how all are welcome.  Part of the goal here is to finish the walk and part of it is to raise yachad's profile and get people connected to yachad who might otherwise not know about it.  And of course to raise  money. 

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