1/ Tonight, maybe three blocks away from where I sit, a Santa Claus parade is still chugging it’s way down the Main Street in Barrhaven, #Nepean. I was there. But I had to leave.

My husband left maybe 10 minutes before I did. My son Jack has severe autism, and each year we try
2/ our luck with the parade, and each year, it’s no better than the last. Too late, too many flashing lights, too many bad memories from the year before. This year may have been the nail in the coffin. He doesn’t have many words to tell us, but it’s clear this “fun” Christmas
3/ activity just isn’t for him. My husband took him ahead home leaving me with my daughter who is also on the autism spectrum.

The Parade has been cause for reflection for me. A year ago, we stood roadside, and with just the right amount of happenstance, @MacLeodLisa’s
4/ festive float passed by as my son melted down, kicked his snow boots into the road, clawed at my husband’s face, thrashing, drawing blood. Our MPP waved to the crowd, oblivious to the chaos playing out below. How appropriate this memory is, when compared to the past 9 months
5/ that Ontarian families of autistic children have spent rallying, begging, imploring, pleading the @fordnation government to reconsider the egregious changes proposed by @MacLeodLisa, then Minister of Children, Communities and Social Services. For my family, Lisa coasting by,
6/ surrounded by happy children, waving to the crowd and bouncing to the beat of Jingle Bell Rock as we struggled a mere 10 feet away, literally bleeding in the street, is a perfect metaphor for the agony of the days passed since February 6, 2019.

There’s no reason to
7/ blame you for our parade disaster, Lisa. That was our fault, and our son lacks the ability to articulate what is borthering him; how he’s feeling. Although, 5 years old then, and 6 years old now, he is still benefitting from the therapy that gives him the tools to communicate.
8/ This year, he called out “GO HOME!”, and home his father took him.

That meltdown wasn’t your fault, @MacLeodLisa .

However, I’ll happily articulate what IS your fault.

You ignored families. You made it about you. You accused the Official Opposition of giving families
9/ “false hope”. You ignored the science. You threatened this community’s lifeline to therapy, both literally with @ONTABA1, and figuratively in casting out a half-baked plan that wasn’t worthy of lining the bottom of a birdcage. You communicated that you didn’t care. You failed
10/ to listen. You accused us of taking an inch and then demanding a mile. You failed to empathize with those you were meant to keep safe. You failed to represent those you were mandated to serve. You shut down, built walls and turned your back on the autism community.
11/ And @MacLeodLisa, THIS is what we blame you for. You knew families were in crisis. You knew we were begging for your help. And you did nothing. Our lives are not a Christmas Parade. You can’t just coast on by, smiling and waving, and bopping to beat of the music.
12/ As the mother of two beautifully brilliant autistic children, I will never forgive you for the choices you made and the path you took that quite literally stole 9 months of my life.

It doesn’t matter whether I am a parent who continues to protest weekly outside your
13/ constituency office. Or a parent pounding out angry tweets, penning frustrated letters, sitting in Question Period day in and day out, or simply sitting at home desperate, wondering when support will arrive from the @fordnation government. You have stolen 9 months of our
14/ lives on top of the years we have already spent waiting. And today we continue to beg @ToddSmithPC for urgency. And today we continue to wait; 17 months after you, Lisa, were first handed the file, and first concocted the Childhood Budget Scheme that will continue to
15/ terrorize this community for months, if not years to come.

But I mentioned, Lisa, that I left the parade. I left because the moment your float came into view, and the moment I saw you waving cheerfully to the crowd, 9 months’ worth of frustration and agony and ire bubbled
16/ to the surface and I cried. I cried like my son did the year before. I cried like I have on nights when you stripped away our hope. When you chose to ignore the needs of autistic children in the province and stubbornly insisted you were right. I cried like thousands of
17/ families still do. I cried, because I’m not sure you’ll ever know just how badly you hurt us, @MacLeodLisa.

And because I cried, my daughter cried. And we decided to follow the other half of our family home.

It’s just a parade. It’s not the end of the world.
18/ We’ll celebrate the holidays in our own way later. We can walk away, and it will be ok.

But we can’t walk away from the mess you made, Lisa. The mess that will continue to haunt families while you visit Disney, attend sporting events and rock out to the Rolling Stones.
19/ You can move on, Lisa. But we can’t. It may have been your job, but it remains to be OUR lives.

Our whole lives, Lisa.

Merry Christmas, anyway.

#autismdoesntendatFord #NeedsBasedTherapy #AllIwantForChirstmasIsTheOAP #onpoli @MacLeodLisa @ToddSmithPC @JR_Ottawa @AmyFeePC

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More from @ottawa_asd_mum

Oct 22, 2021
1/ I am the parent of autistic children and I need to stop watching Question Period in the Ontario Legislature.

I need to stop putting myself within earshot of redundant, scripted talking points that may sound good on paper, that may yield an MPP an “attaboy” (or girl) from
2/ someone on the sidelines who doesn’t know any better, that may earn someone political points for “making good” on promises their opponents failed to keep.

But I know better.

I know that best intentions from professionals were put on paper then twisted beyond recognition
3/ by bureaucrats who care nothing about the people they are paid to serve, and everything about the bottom line.

I have 2 school aged autistic children in Ontario. So I tune into Question Period to see if the Opposition delivers on holding government to task. I hope they will
Read 18 tweets
Jan 26, 2020
1/ Offering peace of mind to 25% of children will not placate 29k desperate families.

A year ago, thousands across the province rallied against a generalized funding program that would meet the needs of some, create waste where unneeded and leave many without the support they
2/ desperately require; particularly those with severe needs and those who are over the age of six.

After years of waiting, immediate funding, even if it falls far short, may very well be “better than nothing”. Families in crisis may prefer to take something for fear that they
3/ will otherwise remain on a waitlist forever. This is survival mode after years of disappointment and desperation.

Get help to families immediately. Urgency is required, but also in a method that doesn’t force 29k kids into one category or another, sending a message that this
Read 7 tweets
Nov 19, 2019
1/ Today is November 19, 2019. And we are still waiting for a plan from the Ontario Government.

Advocates, parents, researchers, therapists, stakeholders have reiterated to the @fordnation government, time and again, that urgency is critical.

And here we are.
2/ going on 10 months since @MacLeodLisa flogged us with her “plan” to remedy the Ontario Autism Program we are no better off than where we were.

Throughout the summer, while @ToddSmithPC was touring the province ‘listening’, the consistent answer to our questions was that
3/ ‘The Panel’ was hard at work on their recommendations, which we saw come to fruition just shy of November. The Panel recommended Needs Based Therapy. The Panel recommended Urgent Response Services. The Panel recommended reverting back to a chronological waitlist. The Panel
Read 30 tweets
Nov 3, 2019
1) Hi @ToddSmithPC. I hope you can find a moment for this, and I’m willing to try every avenue to reach you, as this is important.

I’ve spent the past year trying to advocate for services for my family. I have two children with ASD and had the opportunity to tell you about them
2) In person on July 3 in Ottawa, and again on August 19. I’m tired, @ToddSmithPC, but I’m privileged and I know it. I have a partner who stands equally beside me in every aspect of parenting. I have extended family who have been ready and willing to support us both
3) financially, and with extra sets of hands when needed. I was able to leave my job to care for our family. We accessed tens of thousands of dollars in savings, and tens of thousands of more in credit to buy early intervention for our kids. We are tired,
Read 30 tweets
Aug 8, 2019
1/ Suppose we woke up tomorrow morning feeling 100% optimistic and satisfied in the @fordnation government’s promise for the Ontario Autism Program. The anger is gone, the trust is there, and come April 2020, our kids will begin transitioning into a Needs Based Program. Cool.
2/ For the first time in a year we wouldn’t feel compelled to protest, rally or advocate constantly for the well-being of our kids. I bet it would feel good, just to trust, to relax, to appreciate what we’ve been promised.

Let’s sit with that for a moment.

...
...
...
3/ Ok. Now what?

⏰If your child is on the list, you’ll wait for a call. Or a letter in the mail. If you had a waitlist rank before April 1, it doesn’t mean much anymore.

⏰A private therapy centre calls and has an opening for your child. Should you take it? Should you pass
Read 21 tweets
Jul 22, 2019
If in Ontario, and your child is diagnosed with Autism, you will need:

1. Savings. If you’re hoping to purchase the bare minimum of health care services for your child.

2. Credit. Because savings will run out in a matter of months, if not weeks.
3. Collateral. As therapy can span years. Selling a car or remortgaging a home so your child can learn basic life skills is a reality.

4. Six-figure salaries. And even this isn’t the answer; no one has an extra $80k lying around to pay for clinically recommended services.
5. Family with Money. If you’re lucky, your support system will come to the rescue to help out for a month or two.

6. Time. Because @fordnation and governments that came before felt that a 2, 3, 4+ year wait for service, that is intended to be delivered in early years,
Read 8 tweets

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