I’ve always been a positive person but parenting a child with special needs has reframed how I approach optimism into one of living life with pragmatic positive thinking.
I recently saw this tweet from educational consultant Doctor Marcia Tate on Twitter. She stated that “being positive doesn’t mean you ignore or lie to yourself about problems you face – it means you know you have the ability to overcome them! Keep the faith.” And she includes the inspirational meme below.
This resonated with me, because it puts into context the challenges the hubby and I had with T since we adopted him four years ago – how we were able to get through them and still remain hopeful.
When we first received T’s prognosis of at-risk fetal alcohol spectrum disorder in August 2016, it shook us to the core.
I remember reading up so much about FASD and joining online forums and feeling this tremendous sense of grief, a loss of what I imagined parenting would be like, of what our hopes and dreams for T would be.
But it was through that prognosis that we got access to life-enhancing early intervention therapy services for T: speech, occuptational, one-on-one supports in the classroom, and now behaviour.
I am not exaggerating when I say that these services altered his trajectory. I shudder to think about where T would be today if we had not received that devastating prognosis and thus unlocked these services.
It was smooth sailing for a while. T was in Montessori and although he had ongoing challenges, the teachers were encouraging.
Then in Spring 2019, in his preschool year at age 4, we received a letter from the school administrator telling us that T would not be invited back for the junior kindergarten year. A parent had anonymously complained to the owner about T’s behaviour.
That continues to be the darkest day of our parenting journey to date. I felt the world was truly out to get T and at age 4, he was already marked for life with a scarlet letter.
I took the news so personally and it took me two weeks to calm down and act civilly with the school staff, because I acknowledged this was a decision the owner made and there was no point taking it out on them.
The hubby and I are not wealthy. So public school was the only option forward.
It was through speaking with the principal in T’s new school that we learned about the fantastic kindergarten intervention program, a specialized program with small class sizes focused on addressing behaviour challenges with the goal of integrating the child into an inclusive classroom in grade one.
I met with a review panel – and our wonderful special needs consultant from Community Living Toronto joined me – and T got a spot in the program.
Life worked out for the better after all!
The program was amazing. T was in a room with five kids and three adults – 1 teacher, 1 child and youth worker and 1 special needs assistant. I could not have asked for more.
Then a few things happened. The amazing teacher, who had been with the program since 2004, had to take a medical leave after two weeks of school because of back issues. The replacement the school found was a disaster and the classroom became so unruly.
Then last November, I learned through reading an article in the newspaper that the school board was cancelling the program after nearly 20 years! Their rationale was they were moving to an inclusive model – whereas to me, and they will never admit it, it was a thinly-veiled budget cut.
That was another dark moment in our life. I felt like we had just found even footing for T and the rug was pulled right out from under us.
I didn’t take the news well. I tried to advocate against it and reached out to the media to get the story out. I won’t share the news article or the radio spot here but if you search “kindergarten intervention program” on Google News, you’ll be able to find a December article and radio story.
Despite the article, going on a morning radio show and deputing at a school board meeting, the program was still cancelled. I knew the chances of it being reversed was slim, but it was important for me to try, to say what I had to say, and then move on knowing I’ve tried my best.
What came from the process was that the principal – who is amazing and supportive – was able to advocate and secure a child and youth worker to work with T in the senior kindergarten classroom when he started this September.
So the dust had settled and the hubby and I were finally starting to move on. The teacher came back from his medical leave in February and things were starting to get back to normal. And feel hopeful.
Then the fucking pandemic happened! I repeat, the pandemic fucking happened. I’m actually sitting here and laughing because it is so comical in hindsight how absurdly asinine our luck has been. But I can guarantee you I was not laughing back in March.
Schools had shut down and T came home and we had to homeschool him for four months.
I’ve written countless times about how challenging the four months of homeschooling during lockdown had been, so I’m not gonna regurgitate that.
I only bring up the lockdown again to say that there ended up being so many positives – specifically the gift of time with T and T getting the one-on-one academic supports he needs. Yes, even if that support was us – with valuable daily assist from his teachers.
In closing, life of raising a child with great potential and challenging needs is never easy. As cliche as it sounds, it really is like a roller coaster – up, down and upside down.
Every parent will respond to the challenges differently. But for me, I am still able to stay positive for T because of a few things.
First and foremost, my life is infinitely more fun, meaningful, richer and more rewarding because T is in it. Sure, we have hard days. But the majority of life with T is wonderful.
I’ve also learned to stay positive in a pragmatic way. Things don’t always work out the way I imagined. Actually, chances are, they will rarely work out the exact way that I imagined.
And some moments will be so hard and so devastating. But I truly believe that we are all stronger than we think. And we will get through the hard moments and become all the better parent and person because of them.