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Autism adult with diabetes

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  • January 28, 2015 at 11:17 pm #17844
    Anonymous

      Hello all

      I am new to this forum. Just to give you some info, my brother is 26 and has autism pdd. We have never been able to utilize any of the services offered at Geneva center or surrey place because the wait lists for social skills was always long or they didn’t have social skill groups. Way back the government cut funding at 7.

      We recently got a diagnosis of diabetes and we are actually in crisis mode. He doesn’t like needles and having his bloodwork taken was stressful for all of us.

      I don’t know where to begin to find resources that we can use or to educate him about his health. We’ve had some issues of him sneaking out of the house to get pop. We don’t have passport funding though we applied.

      At the present time he doesn’t attend any day programs because we have always been worried. I’ve recently been looking up day programs and there are none downtown. Has anyone here had any experience with CORE? I am reluctant to put him in there because they do not allow family members to help with the transition into the program and I simply won’t drop him off and leave him fending for himself. I’m also worried about the 1:10 ratio. He requires some supervision especially if he’s not familiar with the people or program. Day programs in Toronto are far and few between I’ve researched. There was a promising one on the Queensway but it’s $100 a day and out of the way for us. We live in the downtown core.

      Any tips would be greatly appreciated. I don’t know how many people post on here as I haven’t seen too many frequent posts.

      January 29, 2015 at 10:37 am #18298
      pasfaw
      Moderator

        Hi Flounie & sorry to hear about the diabetes. You might want to try Surrey Place Centre again around this issue?

        Have you updated DSO-TR & the Passport office re. this recent development?

        I’ve heard good things about CORE & I’m sure they’d be willing to work with you to come up with a plan to ease your brother into the program gradually. (their ED is super!)
        Also, I’m assuming you’ve checked the DSO-TR website for day programs? There’s also a list of fee-for-service programs on ConnectABILITY: https://connectability.ca/2012/10/12/fee-for-service/

        Community Living Toronto’s Creative Village Studio on Dundas St. W., just west of Keele, might be a place to start?
        Also, is your brother on the waiting list for a person directed plan with DSO-TR? Might be something to consider, to think about holistic planning for your brother’s future?

        Petra

        January 30, 2015 at 11:50 am #18299
        elaimer

          Hi Flounie,
          In addition to the suggestions that Petra made, you might also want to connect with the Canadian Diabetes Association. http://www.diabetes.ca/

          Eric

          January 31, 2015 at 6:54 am #18301
          Sharon

            Hi Flounie, I don’t know where in the downtown you are, but I know it is difficult to get programs.You should call the DSO regularly to express how difficult it is to cope, don’t wait on them to contact you, also of course let them know about the diabetes ASAP. Salvation Army Broadview Village is starting a day program on Broadview Ave,( Broadview/Danforth area,) it is similar to their other program, and it starts soon, you may want to investigate it. S

            January 31, 2015 at 11:26 pm #18302
            Anonymous

              I have contacted Surrey place and left messages again and again for the outreach nurse. To be honest, I know it’s frustrating when trying to access services with Geneva center or surrey place.

              I have been frustrated and broken that over the years, calls to either of these two organizations has resulted in long waits for an accessment and then no follow up. I remember going to extreme lengths to Geneva center hoping to get him into a social skills group, only to have two accessments done (which one of them I felt was a waste of time because he didn’t get a chance to write the answer before the speech pathologist said “nevermind, next one” WTF?

              Anyways, a report was written but nothing else ever materialized. It was always a long wait.

              I have been a terrible mess as a result of this diagnosis. I’d contacted a place (won’t name names but one of the two) a year ago asking about any doctors that deal with autism (not a specialist, just someone familiar). They gave me one office for optometrist and dr but neither of them had dealt with anyone with autism. Left several messages, she said she’d follow up and I guess my case went by the wayside.

              Fast forward…left some more messages a few months ago, no reply. Luckily I was able to find both places that had experience with people with developmental exceptionalities. At this point it was too late as he had already diabetes. My point is, the system is so taxed, people get forgotten. This next part is a big one.

              When I spoke with an intake person somewhere that I won’t name, I was told that people get mad because I keep leaving messages for different people because they don’t know who is involved. First, I wouldn’t do that if people actually returned my calls. Second, if you aren’t a pain, people forget you.

              Waiting list for passport. I am supposed to meet with DSO in a few weeks to start another app but I am not holding my breath. Sigh…

              I’d called canadian diabetes association and they don’t really know of anyone with autism that has the diagnosis. Odd because there seems to be a link between the two from what I’ve read online.

              I’m near a mental breakdown these days. It’s all very hard to swallow, because food is the one thing he looked forward to. He is verbal but wont’ tell us if he’s not feeling well. So fearful and all these changes I am afraid he is going to regress more.

              January 31, 2015 at 11:30 pm #18303
              Anonymous

                I’m a bit hesistant for CORE because the ratio is 1:10 and he would need more support since he hasn’t been in a day program before and not used to being with other people.

                Variety village is an excellent place I’d like to take him to get someone to work on his gross motor but it’s very far for us (we are in teh west end by liberty village).

                My only reservation about CORE is that with the high ratio and the tendency for some people that get upset or aggressive, I am very fearful for him since he doesn’t advocate for himself. He gets frustrated with us but won’t show it with other people.

                We are on the waiting list for ministry funded programs for over a year. Coffee shed contacted us but the timing wouldn’t work out and he can’t get there on his own by ttc.

                February 2, 2015 at 10:34 am #18304
                Catalin91R

                  Hi Flounie,

                  My name is Renee Holford and I am the community supports manager at Kerry’s Place Autism Services. I would encourage you to contact us at the Toronto Regional office and ask to speak to Meggie, one of our Autism Consultants at 416-537-2000.

                  Regards,
                  Renee Holford

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