I want to talk about what it's like to be the sibling of someone "unwanted" in society & the parent of a kid with #ASD. This is a thread about neuro disorders; how cruel society is; why parents of kids with #autism fight like they do and how this fighting impacts family dynamics.
My sister, Jen, is Developmentally and Mentally Delayed (DMD). She's 46. She is my parents' retirement. And my parents are tired. At 71 and 72, they spend each day ensuring Jen's mental, medical & physical needs are met. It's exhausting.
I am my mom's rock.
I listen to her cry.
I'm crying as I type this out because I feel so many people don't fully, nor want to understand why parents of #autistic kids are so angry at the government. My whole life has been spent watching my parents fight. Fight for inclusion. Fight for funding. Fight for support.
My mom just wanted to be heard. Acknowledged. I also want @m_layton to know how instrumental his dad, Jack, was in my parents' fight, when he was a #topoli councilor. He helped my mom with some TTC issues. My mom was a champion for the disabled to achieve transit independence.
Ok, I've stopped crying.
I always stop when I think of all the good politicians who helped.
While all this fighting was going on, my parents had two more children after me and Jen. The three of us grew up in the shadow of Jen. Everything we did was only done if Jen was included.
While other families went on vacations flying to warm places, we did not. Jen was anxious about flying. Anxiety & stress about unfamiliar things or scary things can trigger meltdowns so epic that once a stranger told my mom she should have Jen sent to an institution.
So no to Disneyland, right? Lots of families didn't go. What about family outings to restaurants? Hard no. Too many sensory issues. Theme parks? Yes. But let's make sure there's something for Jen to do and then you girls take turns looking after her while mom walks away...
Weddings? Family reunions? Showers? Celebrations? Backyard barbecues? Camping trips? Not often. Definitely better exclude us because we might bring Jen and Jen "might" have a meltdown and ruin the day.
What about sleepovers? Those happened, right? No. Not if Jen couldn't come. It was important to my mom that neighborhood kids learn to be tolerant and inclusive of Jen. This proved to be fruitless and by the time I was a teen, I didn't have to accomodate for her any more.
So now you have a snapshot of the social stress. Let's look at the financial impact. My parents spent thousands of $ on occupational, auditory, physical, psychiatric and speech therapies. None of these were funded directly but there were associations that had grants who helped.
School was a total gong show. My mom argued with trustees & teachers, calling anyway who would listen, to get services established to support not only her kid but others like her in school. My mom fought for integration of Jen into regular classes. My mom was a force to be had.
One incident stands out. My 12th birthday was coming up. I wanted a Bianchi ten-speed bike. Really bad. I'd been riding the same banana seat, purple CCM bike since I was 7. I begged. I washed dishes. Cleaned. Did laundry. Made tea. Was super good. I counted down to June 14.
On my bday I got a cake, an Ocean Pacific t-shirt (all the rage at the time) but no bike. I was ANGRY. I was also 12. I also had no idea how much it was costing my parents to meet all of Jen's needs. That was the summer Jen needed hearing aids. They weren't covered by benefits.
Of course I didn't know this. All I knew was Jen, once again, was ruining my life. And during this messed up period where money was tight, dad was working double shifts and mom was stressed to the max, I was dealing with unwanted advances from a relative. It got dark. At 12.
I tried to commit suicide when I was 13. I hurt so much. I was the "oldest". I was protecting my younger sisters from someone living with us. My mom was fighting with Jen's high school about kids who were bullying her. My dad wanted me to go to her high school to protect her.
Everything was a mess. Everything. I did not want to go to the same high school as my sister. I wanted to be free. My parents were angry. I was angry. And sad. And bitter and resentful. These feelings that would stick with me for years.
I spent most of my time as a kid being picked on for being Jen's sister. If I did something other kids found stupid, one boy in particular would ask me if I was as retarded as my sister. Then there were the kids in the neighborhood who would pick on her.
I fought all of them. Especially those who would ask my sister to jump so they could laugh at her breasts bouncing. One Sunday afternoon, I was out riding my banana seat purple bike when I rode into the schoolyard and witnessed teen boys asking my sister to pull her shirt up.
I threw my bike down, grabbed a ball hockey stick from the ground, and I hit the kid who was leading the chant in the face. I broke his nose. And then I grabbed Jen and I pushed her home screaming how much I hated her. I'm hyperventilating. She's crying because she's mad.
But that's how it was. People took advantage. People are cruel. Life went on. Jen stayed forever five years old and we grew up. We're all married and I was the first to have a kid. I was 30. She was diagnosed on the #autism spectrum as #ASD - the disorder.
I made a decision not to fight. I decided I wasn't going to use the system only to be gutted by the cruelty of politicians who are supported by the ignorance of some voters who see my kid as society's "unwanted" problem. I spent my own $ on my kid's therapies and social programs.
This financial burden comes with tremendous sacrifices and only by fate am I not subjecting my other kids with the same childhood I had. I could only have 1 kid.
But I'm with those kids. The ones living in shadows. I've decided to fight for you.
And the moms.
And the dads.
So @fordnation & @MacLeodLisa, I'm fed up with what a legacy of government cruelty & societal ignorance has done to not only my family, but what it will do to those currently raising special needs kids. It's too late for Jen. For my mom. For my kid. I've been silent for too long.
Thank u to anyone who read this. Please call/email your MPP & demand a fairer plan. Reach out to #Austism Associations in your area & ask how you can help with fundraising. But most importantly, stop bashing these parents on twitter, calling them "entitled".
Jen and I.
Jen is 4 (r). I'm 2.
It's been a very emotional day.
Missing some Tweet in this thread?
You can try to force a refresh.

Like this thread? Get email updates or save it to PDF!

Subscribe to Cj Smith - Commuter Extraordinaire 🚴🚗🚍🚃
Profile picture

Get real-time email alerts when new unrolls are available from this author!

This content may be removed anytime!

Twitter may remove this content at anytime, convert it as a PDF, save and print for later use!

Try unrolling a thread yourself!

how to unroll video

1) Follow Thread Reader App on Twitter so you can easily mention us!

2) Go to a Twitter thread (series of Tweets by the same owner) and mention us with a keyword "unroll" @threadreaderapp unroll

You can practice here first or read more on our help page!

Follow Us on Twitter!

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just three indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3.00/month or $30.00/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!