Thread by @ottawa_asd_mum

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,

4) frustrated, depleted, and experience some degree of struggle every single day. But we’re ok. Despite the challenges and the additional barriers put in place by devastating program changes and painfully slow-moving government response—we’re doing ok.

Others are not.

5) @ToddSmithPC, I want to tell you about a family I’ve known for nearly two years. A sole support mother and her 9 year old son. When I met them, her son’s challenges were perhaps “typical” of a 9 year old, mildly autistic boy. Minimal aggression, some struggles in school,

6) sensory barriers, and difficulty fitting in. I say “typical” not because autism can be described in a blanket statement of challenges, but because at this point, I have to assume you’ve heard of these types of set-backs enough that there is little to no shock-value anymore.

7) Maybe like me, and thousands of other parents in the autism community, you’re numb.

About a year ago, unexpectedly, this boy took a turn. In his Gr. 3 classroom, he shared an EA with 3 others. He wasn’t supervised during recess. He became frustrated at school and was unable

8) to access the curriculum. He got picked on. Became fearful. Came home injured on a regular basis. This escalated Todd, until he could no longer attend. He missed 80% of the school year as he wasn’t properly supported. As a sole-support parent, there was no way his mother

9) could afford any type of therapy at all. Diagnosed in 2016, there have been no resources to help: No public service through the OAP, no private service affordable enough for a single-income hovering over the poverty line. A 5-minute walk to school was impossible. Frustrations

10) and fear exhibited as aggression and violence. This 9 year old couldn’t be forced to leave his home—so home he stayed. His mother, without appropriate care for her son, or the resources to pay for them, stayed home with him herself. And soon found herself unemployed. Over the

11) course of the year, behaviours grew more severe. Isolated, alienated, this once cheerful boy became angry, hostile. Today, he can physically subdue his mother. At 9. He stopped sleeping; collecting maybe 3, 4 hours before facing another day without supports. He grew

12) increasingly violent. Destructive. Damaging their home, destroying their belongings. Urinating on furniture. Throwing chairs. He became withdrawn; unable to attend extra curricular activities. He became erratic; respite workers unwilling to take on the task of caring for him.

13) His mother is alone, unemployed, without help, lost somewhere in an OAP waitlist, waiting on an algorithm that won’t favor her child. Through an online go fund me, saving small financial offers from friends and family and putting aside as much money as a jobless single mother

14) can: she was able to purchase 6 hrs/wk of ABA for 6 months. Today, they are entering month 4. However, @Todd, this boy’s behaviours have become so severe, that even a 1:1 senior therapist was not adequate to support him. His budgeted hours were reduced to 3/wk, as he requires

15) 2:1 support from a pair of BCBAs.

In September, this boy started Grade 4. By some miracle, he was willing to go, and through targeted advocacy, received 1:1 EA support in the classroom. By October, he was destroying property, refusing to enter the class, refusing to use a

16) washroom, attacking faculty, throwing rocks, melting down, putting classmates at risk, forcing staff to evacuate the portable that he would routinely elope. Today, he is in class no more than 15mins/day. On a good day. If his mother can wrestle him through the doors of the

17) school. They have funds for 2 more months of therapy. By Christmas they will be completely out of options. This boy is unsafe. His mother is unsafe. She is scared and exhausted and is terrified for, and of her baby boy. She has nowhere left to turn as every resource that

18) should be there to support a family in crisis like hers is unavailable, or out of reach, or frozen.

My family is ok—but this family is not.

The only support this family is getting is from within the ASD community. From other tired, exhausted, depleted families who see

19) their worst nightmare in this mother’s reality.

Todd, this week the Ontario Autism Panel Report was released. And described starting on page 15 are the recommended Urgent Response Services. Services that would recognize, identity and spring into action to support families

20) in *crisis* like this one.

@Todd, this family needs emergency supports. They’ve been waiting for service for 3 years, but they’ve been in a severe state of crisis for more than 365 days. Exposed to violence, aggression, financial hardship, barriers to education, safety

21) risks, elopement, fear. And a neverending hallway of doors that close in their faces. They are alone, @Todd. And I can’t imagine the reason why. They need the @OntarioPCParty and @fordnation to see them, to help them. To recognize that his is an emergency, and it cannot wait.

22) @krushowy of the @TorontoStar quoted you this week as saying that “there are things in the report that we can act on rather quickly”. @ToddSmithPC, the Urgent Response Services must be one of those things.

For the past 9 months, (and beyond), tens of thousands of worried,

23) desperate parents have rested their heads on their pillows and wondered what the @fordnation government would have in store for them the next morning.

Tonight, @ToddSmithPC, before you rest your head, please know that this family is waiting on you. Where do you turn, when

24) you bolt your front door at night so your child can’t get out, and bolt your bedroom door so they can’t get in? When there is no family. No money. No help. No reprieve. No hope.

This is my effort at transparency, Todd. This is reality.

They may be only 1 of the

25) 23,989 still waiting, living in this degree of fear, but that is 1 too many. @ToddSmithPC release the funds, and save lives. This family, and god knows how many others are counting on no one else, but you. @Sflecce @JR_Ottawa @sletersky @AmyFeePC @MTaylorNDP @JoelHardenONDP

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#autismdoesntendatford

#thetimeisNOW #doNOTdelay #needsbasedtherapy #ImplementationCommitteeNOW #OAPPanelReport #UrgentReponseServices

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