Barry Hudson is a very well informed, articulate father of an autistic son in Ontario, autism advocate and director with Medicare for Autism Now! Barry describes his family life with autism and the impact of autism on family life. He describes waiting lists and other obstacles that the Ontario bureaucracy uses to prevent children with autism from receiving autism services. Children with autism who are not considered severe enough do not receive treatment. Children with autism who are considered too severe do not receive treatment. A child with autism who clears these hurdles will have treatment services discontinued if they do not pass periodic improvement tests.
Barry also provides an informed articulate history and criticism of Canada's failure to provide a national health care scheme to cover autistic children in Canada, a failure made more pronounced by the fact that some other countries have identified autism as national priorities and put programs in place to provide treatment.
5 comments:
It is indeed a very sad and frustrating travesty being perpetrated against Barry's and the children of other parents with autism. I'm an adult aspie myself, who has experienced this utter lack of empathy and action, from both the medical and political establishment, particularly when it has been known for some time now, autism's growing hold over our communities and the dangers it poses to them. Depression, suicidal ideations, gastrointestinal ailments and assorted behavioural issues, from the time I was about 13 years old and was just realizing I wasn't like the other kids, has followed me ever since; I am now 53, jobless, penniless, and friendless, yet fortunate to have a younger brother, who loves and supports me. I have also long ago given up trying to attain a diagnosis, let alone therapy, especially when told the last time I tried that, I was a strange, but nice fellow and should just get use to it. So, as I have come to realize for myself, in stark clad hideous terms, and what Barry seems to have adduced through his huge effort, on the part of his child, there are few who could actually help, if they even cared. This must change.
There are many services in Ontario if you are willing to look for them and spend the time working with the system and not ranting about it.
I loved the ABA program (full sarcasm) and happily lobbied against it when it was up for full Parliment funding... my Russ did very well in it until they told me he wasn't learning something fast enough and they wanted to shove food in his mouth. Or how I had to walk around beind him with a fanny pack full to cookie crumbs to shove in his mouth when he behaved. ABA is a farce.
If I can find funding, good Ped, good eye Dr, good child psych, in school counselling, get a personal laptop for my eldest to use until he graduates Gr 12, private speech (both), private social skills programs (eldest), private swimming lessons (youngest), tutors (eldest), private piano lessons (youngest), karate lessons (eldest), gymnastics (youngest), support workers (both), PPM 140 (both), good classroom teaching (both). Have to ship the eldest 30min one way, but I found the perfect highschool program for him starting a year Sept and we're off to see it the first of Oct. Regular program and the HFA crowd gets their own resource room to use as they need it during the day AND the school board has to pay his private busing to it just like they do the younger's to his classroom. Guess what, it's a RURAL highschool too. Geez, in "no man's land" there are services... therefore, the rest of the Province can find them too. Oh, the younger has an all day, every day autism summer daycamp to go to starting after Gr 8... Geez, that would be a rural CL supplying it.... it's a 30min drive one way but ACSD pays mileage and I've done it before for our T-T daycare when they were small. Oh, and there's Special olympics, RURAL SO... we don't have to go to the city for it.
Parents don't want to work at it. They want it done for them. Ask any professional out there and they will tell you that only 25% of the parents are willing to hold up their end of the work load. Which leaves 75% whining nobody does it for them. I'm one of the 25%.
FW2 good to see you haven't abandoned your emotional views on ABA. For your information though every major review of autism treatments by credible authorities in the last 30 years disagrees with your anger and says ABA is the most evidence based effective treatment for autism. The US government and two recent US federal court decisions agree that ABA is a medically necessary treatment for autism. Have a good day FW2.
FW2 – You are confusing rant with advocating. You do understand that all the services you partake in came about due to parents advocating, and in the case of private services, created the demand to support the business? You also do know that the continuation of ACSD, SSAH, and like funded programs continued for ASD because of parent advocates, right? I very much like you noting PPM140 since this school directive to use ABA for ASD children in schools in Ontario as an Education Ministry requirement came about solely due to parent advocacy of which I was one of those “ranters” that worked with the Ministry and Minister personally to make happen in Ontario. It took us near three years to get this for you and your children – you are welcome. I specifically take exception to your comment that “parents don’t want to work at it” – I personally do over 20 hours of therapy with my son (reading and generalizing) and my wife and I both use every waking moment to support our son’s learning and therapy. There may be some parents not as active but to generalize this to everyone but you is an insult. Not all children on the spectrum can learn via your earlier noted method of screaming them into compliance. I have seen the benefit of ABA for children with significant challenges and indeed our son. As Harold notes your disregard for the science is a common known. That you find it necessary to insult those that work to give you the services you use shows you to be no more than a hypocrite. Please do make sure to let me know when you want to opt out of the services that parents like myself have made available to you – I am fairly certain I did not see you in the meetings we had with the ministry nor did I see you at the Select Committee for Mental Health (and other committees) when I testified.
FW2... Wow! What an ignorant comment to make! I have 4 children, 5 years old and younger. My twins are severely autistic. We have managed to pay for 15 hours per week for both of them over the last year and a half. My 1 and half year old has spent over 4 days in a vehicle, since my twins are in therapy since, as you can tell I am largely out numbered for there to be a 1:1 ratio for me to to do all the work. I am up till all wee hours of the night finishing what was impossible to finish through the day. I am up 1st thing, since I must get my oldest off to school where we live which is in the country and the twins have therapy 30 mins in town. Back home at lunch since her school doesn't provide full day kindergarten. Along with the many cardiologist appointments one of the twins has on top of IBI, Speech, OT and regular doctors appointments. I wish I was 4 people and I could afford the time to provide my children their full needs myself, but I don't. My youngest child has delays her self which also has time consumption issues with her own appointments. I think this exactly the problem with this country's concept of autism and their families as a whole! But I will tell you this.... Even though we have very little time, I still manage to take another 10-15 hours a week to work on their skills. I am so tired of people calling advocates whiners. Just because some of us have the reasoning capabilities to see how upside down this society treats our disabled peoples and are prepared to keep pushing for the rights of our children and family or friends doesn't mean we want other people to do it for us! That is all fine and dandy you are what you call the 25% but I believe most of us are fighting for when we are not here and no one to care for them. The other thing to remember we are all wired differently and some people are not capable of working 30 hours with their children, many parents would love to help their children, but maybe emotionally can't those formative years. I know the 1st year follow my twins diagnosis and expecting our last child was one of very deep pain and fear. Had we not had the ability to come up with the resources to provide the therapy, we would be 1 year wasted and not because we are lazy. And a note should be made, we are a $40,000-$50,000 a year income, supporting our family of six. So please don't make the mistake of prejudging our financial situation. Another thing to keep in mind please, I am not sorry for any of it! I could have laid down and gave up, but there are many families that will need this whole issue to be assessed. Or, in some cases, left to watch their child restrained to a bed in the psych ward when they become full grown adults, because they didn't get the help they needed.
** The last I checked most parents that have children on the spectrum weren't handed a educational background in IBI or ABA or even special needs worker. We end up with a crash course on surviving autism... Every last parent that tries in their own ways should pat themselves on their backs! You are doing it!!
Post a Comment