Families still waiting despite local MPP going to bat for children with autism

In March, the Downsview Advocate printed a story about my son with autism, Misha, and what the Ontario Autism Program (OAP) changes announced in February meant for children on the autism spectrum and their families.  The article highlighted the importance of Applied Behavior Analysis (ABA) therapy, an evidence-based best practice treatment for children with autism, and how the changes proposed by the Ford Government would not allow most children to access this life changing therapy.  

The OAP program changes were a ‘one size fits all’ plan that did not address the individual needs of the child.  I was devastated that other children would not get the therapy they desperately needed. As a result, along with other parents and advocates, I attended rallies, visited MPPs and organized my community demanding the government to not go through with those changes.  

I met with my local MPP, Roman Baber. At first meeting I was disheartened by his support of the OAP changes, nonetheless, I continued to meet with him.  At one meeting, I showed him a video of my son practicing for his Bar Mitzvah and explained this was only possible because of the therapy he received. Roman was intrigued and attended Misha’s Bar Mitzvah.  

The ceremony was very moving and meaningful.  All in attendance were in tears because they knew how far Misha had come.  Roman witnessed the benefits of ABA therapy firsthand.  

In April, Roman Baber was asked by Premier Ford to review the Government’s Autism plan. He continued to meet with me along with many other autism advocates and professionals.  Baber’s review of the OAP and later termed as the “Baber Report” was shared with the Government’s Autism Advisory Panel and then subsequently leaked by the Globe and Mail on June 28th.  In the Baber Report, Roman courageously criticized his own government’s plan and called for an immediate reset to the Government’s Autism plan.  

On July 29, the Ontario Government acknowledged that its proposed changes to the autism program were wrong and they reversed the course of the OAP.  Many Ontario autism advocates, including myself, praised Baber for his work and feel all the rallies along with Baber’s report set the stage for the government to change its direction and provide families with funding based on the needs of individual children.

The revised OAP announced by the government would be needs-based, sustainable, within $600 million and would treat as many children as possible.

The Ontario autism advisory panel made up of parents with lived experience, autistic adults, educators and other experts from a range of disciplines released their report on October 30^th.  This report included many excellent recommendations.  However, an implementation committee needs to be created in order to implement panel's recommendations.  Implementation of the new program is planned for April 2020.

Many children have lost valuable time not having access to therapy.  It will be well over a year from announcement of the disastrous plan back in February to the new OAP program implementation in April 2020.  Still, I extend a thank you to my MPP, Roman Baber, and all the advocates that made the government see the error of their ways.

Humans of Downsview: Nathan Baya, the leader behind Jane Street Speaks

Nathan Baya is an active community member who is behind the initiative Jane Street Speaks - a platform that "provides local artists with an opportunity to express themselves and shine their light." 

Nathan was born in Toronto and grew up in the Jane and Finch area. His parents immigrated to Canada from Congo; "I take great pride in my African routes and I'm happy I was born in the talented city of Toronto."

When asked why he started Jane Street Speaks he shared that it's because he struggled to get booked as a local artist. So he began putting on his own events to showcase his talent.

"I wanted to create a platform where I could provide the same opportunities for local artists from my neighborhood who struggled to get gigs as well." 

The events he organizes are all about self-expression through art and using art as a way to heal from traumas experienced in life. "I either have events where I showcase specific local talents from the city or I put on an open mic where the community gets the opportunity to come sign up, perform and show the people what they got."

Jane Street Speaks has been very successful at doing just that, however Nathan expresses that his biggest accomplishment is "not letting anything stop me. Life is not easy and not everyone is supportive of the path of being an artist. But, music and chasing my dreams is in my blood so I could never stop!" 

When I asked him what motivates him and how he finds the inspiration to continue being an artist, Nathan attributes this to his daughter. "I wanna be somebody that she can look up to when she starts chasing her dreams as motivation to never quit and always live in your truth." 

Nathan's initiative has been well received in the community, Jane Street Speaks puts together live performances,food and clothing drives for the homeless, workshops for youth and community events.

The work is necessary - Nathan shares,  "When people don’t get the opportunity to express themselves and heal from their traumas they suffer in silence. Why do that? We can come together as a community and heal from our traumas through the power of self expression."

Nathan created a popular slogan that has been turned into t-shirts and other merchandise seen around Jane and Finch. The slogan: "Support Local Before Global " is self-explanatory and reminds artists the only way to be global is through community support. It sums up the heart of his initiative. 

"I love this community it's filled with so many talented individuals who are doing incredible power moves in the city of Toronto and who are changing the narrative everyday about members who come from the Jane and Finch/Downsview community."

Catch Nathan's next project titled "Journey to Fatherhood." Follow @janestreetspeaks_ on instagram for more details. 

Joy of sleepless nights

I love my child.  But honestly, what I would love more than anything right now is something even close to a good night’s sleep.

Far too often, my nightly state of bliss, those precious and magical few hours where I can close my eyes and maybe, if I’m lucky, fall asleep, abruptly come to an end when I hear something loud and whiny.

To no one’s surprise, it was my son, crying. Oh Joy! It was 2:30 a.m., and I think: “I have to deal with this now. Goodbye sleep, hello crying child.”

I rushed over to his room, and a mixture of exhaustion and panic set in. “Maybe something is wrong, maybe he is hurt,” I thought. I picked him up and started asking him what was wrong. Obviously, my one year-old son couldn’t answer me yet, but I tried anyways. 

When situations like this occur, my go-to solution is food - always food. I mean, if he is eating he can’t cry, right?! I was still completely exhausted, but I decided to take him into the kitchen and get him some food. 

In the meantime, my son’s cries have now woken up my husband and I worried that because we live in an apartment, he may have woken up the neighbours as well - so I move even faster to take him to the kitchen. 

My husband held him while I struggled to find something, anything, to feed him. Of course, my son wanted ME to hold him and as his crying got louder, I got more nervous. 

I frantically rummaged through my refrigerator and I found two simple items, a yogurt and a mini muffin and I quickly presented them to him as a gift from me to him. He looked at them, then me, then again at the food and finally decided on the mini muffin. 

“Thank goodness,” I said to my husband, and we both breathed a sigh of relief. 

As my son rested on my shoulder finishing his muffin, his satisfied expression let us know that he was in the comfortable in the presence of his mommy and daddy. Even in the midst of exhaustion and worrying that I didn’t have enough strength to carry him, my toddler wrapped his arms as tight around me as he could, tucked his head under my chin and peacefully rested it on my chest. 

Through these actions, he showed us that he knows we are always there to provide him comfort.

After that, we lay on the couch together, my son was on my chest, my husband was in the bedroom, already fast asleep, and soon enough, so were we. 

We did it! Or should I say, I did it! Another “I love you mommy and daddy” moment. 

These are the kinds of moments I think all parents need, just knowing that your kiddo loves and appreciates you makes it worth all of the (mostly) sleepless nights.  

I must say that, despite all of this, I truly feel blessed to have a little one and to hear the words “momma… and dada…” come out of his mouth.