Feature image by Jennifer Hartley
Here we are. Day one. Welcome to J and J Jibberish (short form for Jacob and Jen’s Jibberish), a new Ottawa Life weekly blog that will focus on life in Ottawa (and beyond) with kids with special needs. Survival skills, tips, services, and lots of stories, good and bad, both yours and ours will fill this space.
Let’s face it, navigating through life for all of us is hard enough but throw in a severely mentally ill child who also has multiple special needs thrown into the mix (including autism, ADHD (he comes by that one naturally) plus a whole lot of other stuff, has some incredible, sometimes seemingly insurmountable challenges. Dealing with stigmas, his struggles, and now seeing the effects of his challenges on his little sister, can all seem daunting and overwhelming.
We are not alone in our journey. The Children’s Hospital of Eastern Ontario (CHEO) is one of the largest providers of child and youth mental health services in Ontario. More than 3000 children visit CHEO’s Emergency department with a mental health crisis each year. For years, we were one of those 3000 with Jacob and now with his sister, after a few rejection notices for CHEO programs she was clearly a strong candidate for, we are back at it trying to get care.
Mental health has also traditionally been underfunded. Let's be honest, and I will call a spade a spade, fundraising for kids suffering from physical ailments is easier than doing it for mental health. Stigma is an awful thing. But as anyone dealing with mental health issues can attest, mental health challenges can be just as painful and horrific as other physical ones.
So here is a plug for the RBC Race for the Kids to benefit CHEO's mental health programs. It's on Sunday, September 24, 2017 at Wesley Clover Parks, 401 Corkstown Road and you can participate in the inaugural run.
The overall numbers are staggering. At least 500,000 Ontario children – up to one in five – have difficulties that are diagnosed as a serious mental illness, and sadly the numbers are still on the rise.
It is a struggle the other J (Jacob) and I are well aware of and it our hope that here, you will gain a new perspective on all this special needs stuff and what it is all about if you are new to the topic, maybe get a bit of support as well as useful information if you are dealing with the system, and a few laughs. Our ride provides lots of humour along the way and if you can't laugh at yourself, then what have you got, right?
With Jacob’s blessing, I share one of his views of the world. He is absolutely brilliant and can be incredibly lucid one minute but then in a created world that would make Walt Disney jealous in the next. He will dazzle you with his encyclopedic knowledge of the Second World War that stuns veterans at the Canadian War Museum with its accuracy and perspective but in the next breath Jacob will tell you about how his brother, the Marvel Comics Thor (yes, he IS my son aren’t I lucky?), was really the one who killed Hitler. Jacob believes he and I are Suchus Djinn (look it up, I had to) and that is why he can only touch me. (He can’t touch anybody else, including his sister and dad. THAT is sad.) As you will read as Jacob takes over J and J Jibberish, he believes that I gave birth to Stewart, a 12-foot-long alligator who used to reside at Lil’ Ray’s Reptiles on Bank Street who now lives in Myrtle Beach. (I had to drive down there during March Break to visit him — actually stay tuned in the travel section of Ottawa Life next week for that adventure). Jacob, in his beautiful mind, honestly believes I also gave birth to Cooper (our dog), Chuckie Norris our gecko, and Thor of course. I have been busy… Honestly, I can’t make this stuff up.
But you will hear the sad stuff too. Meltdowns, suicidal tendencies and an overwhelming feeling of not being able to cope cause him so much stress it is breathtakingly heartbreaking. Even with medication (I begrudgingly administer or otherwise he wouldn’t be here), living can be unbearable for him.
So join me and Jacob, (and his sister too) as we traipse around looking for places both near and far that help kids like Jacob, and we will share those that don't. Looking for restaurants, programs, places in Ottawa and abroad that are great with special needs kids? Find them here every Wednesday with other stuff too. Jacob will be a regular contributor.
Since we are all gleefully plunking our kids back into the classroom, what better way to start Jibberish than on that topic: school, and specifically, the Ottawa Carleton District School Board. I have had good scraps on Jacob’s behalf with school boards in the past and this year looks like it could have a few more in store.
Now, as for Jacob… the poor kid has been through a lot of crap in the school system, to the point he currently goes to a private school out of desperation because the public system has not been there for him in the past. Let’s face it, they can talk all they want about “welcoming all students with open arms” but that requires a lot of patience and understanding and action and access to programs and once kids like Jacob are in them, LOTS of flexibility and creativity and tolerance, none of which is always forthcoming, not even for a kid with a CHEO file that would paper the OCDSB headquarters.
However, in a fit of self-punishment and what will no doubt result in some self-flagellation along the way, I am trying once again to see if there are any schools in the OCDSB that can help him. It is his right as a kid in Ontario to get a good education in the public system. We are going to put that to the test so join us as we go along.
Apparently there are two high schools with really great spec ed programs: Hillcrest and Brookfield with wait lists (of course) and some red tape will follow, I am sure, to even get on the wait list, as is the case for many services for special needs kids. Have an autistic kid? Expect a year to get care. Mental health? Can be longer. Getting into school? Stay tuned here to find out on that one and also to hear about navigating the mental health care system — and surviving it.
That said, so far, even since Tuesday when school began, the OCDSB and Hillcrest (which I know is amazing) are talking the talk and we shall see if and when Jacob gets admitted to one of their programs what the rest will look like. Time will tell if the system can cope with my Suchus Djinn.
Tell me what you think (Jennifer@ottawalife.com), the good, the bad and the ugly. I want it all.
Until next week, laugh. Laugh a lot.
