A medical check-up was the last phase in our very long journey towards permanent residency in Canada. I was sitting a row in front of Waleed and the kids in the clinic’s waiting room; it would be our turn any minute for a medical check-up and I still hadn’t finished filling out my 13-year-old son’s form. I was supposed to check off whether Seif had any of the following: HIV, heart disease, other debilitating diseases, or autism. I hovered around the autism box.
Early signs of autism
My son was diagnosed with high-functioning autism since he was five years old. All the signs were clear: sensory issues; social awkwardness; lack of eye contact; lining up his toys instead of playing with them; delayed speech; a fixation with the dinosaur world (his bedtime story came out of the Encyclopedia of Dinosaurs he had chosen from a bookstore); literal understanding; quirky behavior, and more. Through the years, we have helped Seif understand social cues, the importance of eye contact, and how to identify a joke from a non-joke. He adapted so well that people were often surprised to learn that he was on the autism spectrum. The learning disabilities that often accompany autism were a work in progress.
Autism in a box
I moved my pen closer to the box labeled “autism”. I suddenly felt worried. Was autism pinpointed because it was considered a problem? Surely the Canadian Immigration and Citizenship agency would not exclude people with autism from being permanent residents, right? I turned to Waleed and pointed towards the box.
“Should I check it off? His autism isn’t really an issue anymore,” I told Waleed. I could see the signs of nervousness take over his face. He told me that Seif’s school records indicated the exceptionality of autism and learning disabilities, therefore we needed to check off the box. I suddenly felt very hot and prickly. I gave Waleed the application and he put a checkmark beside the label.
At the end of the medical check-up, the doctor who examined Seif asked us to send him any records indicating that my son had autism. I overheard him speaking to a nurse in another room saying something to the effect of how “such things” severely complicate the application process. I hoped to God he wasn’t talking about Seif’s application.
Autism is considered a financial burden
A day later, Waleed sat beside me on the couch and shared with me what our immigration lawyer had told him: because we checked off the autism box, our papers would surely be flagged. He told Waleed that it would complicate our application process as people with autism were considered a “financial burden on the system”. I felt as if hot water was thrown on top of my head and could sense the heat trickle down to my feet. How could my son and all that he has achieved be reduced to a box on a form and dollar signs? The message that slapped me in the face was: Your son isn’t perfect enough to stay here. He doesn’t fit the standard mould for “normal”.
The lawyer told Waleed to prepare for the worst. If Seif’s PR application was rejected, all our PR applications would be denied as well. We would have a one-time shot to appeal the decision within 90 days of hearing back from the immigration agency. If we still received a rejection, then we would have to prepare for life back in Egypt, as our visas would expire August 2017. Suddenly the 8 months between our medical check-up and our visa expiration felt like a stone throw away.
Flashbacks of how Seif evolved academically & socially
The thought of moving back to Egypt after achieving so much for my kids in Canada rattled me to the core and brought with it a cascade of flashbacks. I love Egypt with a passion. What I do not love, however, is how people with disabilities are perceived and treated. Completing school, getting a job, and getting married become complicated issues because, unfortunately, society is judgemental.
When Seif was six years old, one of his special education teachers in Egypt told us that Seif may not be able to graduate from school because of the severity of his learning disabilities. Vocational training instead of university would be a more plausible route. A year later, another special education teacher advised us to consider moving abroad while Seif was still young so that he could receive a more specialized education that would narrow the ever-widening learning gap. We took her advice and explored moving to various countries: the U.S., Denmark, Australia, and Canada.
My acceptance in the Master of Teaching program at the University of Toronto meant that my family could stay in Canada for the two years I studied, as well as three additional years to work. Seif started grade 4 in a public school in Toronto receiving half-day support – particularly for English and math. It was a significant improvement from the one lesson per day he received in Egypt. It was still not enough, however. Seif’s special education teacher and principal suggested that he be moved to a school that provided an Intensive Support Program (ISP), meaning that he would receive full-day support for all core subject areas. We welcomed this opportunity.
Over the course of four years, we watched Seif in amazement as he evolved from a reserved and socially awkward boy, to one who was revered by his schoolmates, young and old. Academically, he knocked down one barrier at a time. He went from shedding tears of frustration while reading Dr. Seuss books in grade 4, to completing 700-paged books per week by grade 6. By grade 7, he no longer needed full-day support and returned to half-day support. His special education teacher told me in one of our parent-teacher meetings, “I asked students to write what goals they had for the school year and several of them wrote, ‘I want to read as well as Seif.’” I gasped. Then I instantly cried. Every teardrop splashed joy, pride, and hope. By grade 8, Seif was integrated into the general education classroom for Language, and only received support for Math.
As if these achievements were not enough, Seif earned two highly coveted school awards based on his character. Additionally, his growing self-confidence and belief in his capabilities fueled Seif to try out for the Student Council. I only found out about it when Seif told me how well his interview went. I asked him why he wanted to join and he answered, “I think it would be good for my future and would strengthen my resume when I apply to university.” University. I liked hearing Seif say that word.
On the athletic side, Waleed and I didn’t expect too much as Seif was diagnosed with low muscle tone in Egypt and we were told that sports would never be a strength for him. Being a former sprinter, I was baffled when I couldn’t catch up to Seif in a game of tag at the park. We encouraged Seif to try out for the school’s track and field team, thinking that the exercise would do him good. We were not mentally prepared for the surprise Seif had in store for us. Not only did Seif make the school’s track team, he made it to the Toronto City Championships and was the 7th fastest 7th grader in Toronto. By grade 8, he placed 2nd in the City Championships, with dreams of becoming the next Andre De Grasse. He put his running to use by participating in a fundraiser supporting Canadian youth. He was the youngest participant and raised over $800 within a few weeks.
Every milestone that Seif hurdled throughout his years in Canada broke through the “he can’t” and “he won’t” narrative I’ve been conditioned to hearing in Egypt. The “dis” in disability faded as I started to see Seif through a lens of possibilities – like a mirror reflecting a corridor of other mirrors. I became so grateful to Canada and all its wonderful educators for this paradigm shift.
The shock of possible PR denial
Sitting on the edge of my bed, rocking back and forth, I felt a sense of loss and grief at the uncertainty of remaining in Canada. The words that the lawyer told Waleed – how autism was considered a financial burden – sat heavily on my chest. We had come so far. We had done everything right. My son, yet again, was reduced to the confines of a label in a country that had given him so much to hope for and dream about.
It was a rare moment to see my husband cry. With a broken voice thick with regret, Waleed said, “I wish I hadn’t added that check mark.”
Up until the medical form, our PR application was a done-deal: I passed my IELTS English exam with flying colors, I completed a two-year Master of Teaching degree at the University of Toronto; I secured a job teaching in one of the most competitive school boards: the Toronto District School Board; my husband started his own business; we had sufficient money saved in our bank account; we paid taxes. How could all that we have worked hard for as contributing citizens be dismissed because of autism?
Turning shock into action
Our free-fall into the pit of uncertainty was replaced by action. We would not wait until we heard back from immigration. I secured a meeting with the principal of Seif’s school to ask for a copy of Seif’s Individual Educational Plan (IEP) as proof that he was receiving minimal hours of special education support per day. I also asked if we could revisit the exceptionality of “autism” in his new IEP. To do so, the school had to gather several specialists to review Seif’s case in a meeting (called the IPRC) that takes many months to secure, yet time was not on our side. By some miracle, we were able to book an IPRC meeting within a month, due to a cancellation by another family. I talked to the committee about Seif, replaying the show reel of how he had evolved. The committee thoroughly reviewed his file, read through samples of Seif’s school work, asked further questions, then unanimously decided to remove “autism” from his new IEP. They did not see it impacting him in any way, whether socially or academically.
Waleed and I were elated. However, that document was not secure enough on its own. We needed a formal medical assessment indicating that Seif did not have autism. The principal stepped up again, and sent a request for an assessment at a clinic linked to the Toronto District School Board. Knowing how long the waiting list is for such appointments, we were in utter disbelief when the clinic called back the next day confirming an availability ten days later.
Seif was interviewed twice and asked to fill out several assessments. We did not tell Seif the true purpose behind the interviews and assessments and how the outcome could change his whole life. We told him that we wanted to remove the autism label from his school files because it no longer affected him.
Waiting for the results of the assessments felt like an eternity. I reflected on how autism shaped our lives. It made us move to a new country and start our professional careers from scratch. It opened the door for additional educational support which helped Seif progress, transform, and shine. It then evolved into an obstacle that threatened our stay in Canada. It was like a full circle moment with a curve-ball thrown towards the end rather than closure.
When the medical report finally came, we celebrated. With the exception of a few social indicators, Seif was deemed not on the autism spectrum. We now had strong evidence to present to the immigration office if our PR papers were flagged.
PR application flagged & our appeal
By February, we were notified that Seif’s Permanent Residency application had been flagged, as our lawyer predicted. A follow-up medical assessment was requested. An appointment at a clinic was set for mid-March. Although we already had strong documentation in Seif’s favor, Waleed and I were a bundle of raw nerves, waiting for the final clinic date to present our papers.
Waleed accompanied Seif to the long-awaited appointment. In less than ten minutes, the doctor asked Seif a few questions, ruffled through the papers we had prepared, and selected the medical assessment from the TDSB clinic to mail to the immigration office. The waiting game continued to see if Seif was deemed “fit” to remain in Canada.
One sunny day in May
On a sunny day in May, I checked my phone while tidying up my classroom, preparing to go home. I had missed a call from Waleed. I checked the text message and read what my eyes had been longing to see: our PR papers were approved. Thankfully there were no students or teachers around to see me spontaneously laugh and cry at the same time.
Having to prove that Seif is not on the autism spectrum brought an image to mind: a conveyor belt where immigrants are placed, turned over, prodded, and dumped if they have any “defects”. My family has managed to pass the quality control. I can’t help but think of all the other families who have worked hard; have contributed to this country; and have become a part of the Canadian mosaic, only to be denied residency based on a discrimination of ability. Something is just not right about that. Something needs to change.