Jacob is now at Elkhorn!

I never doubted I would write this post. I am astounded, though, that it took so long to get here. Jacob completed his first week at Elkhorn! It was the hardest battle I’ve ever fought, but it was worth it because he is exactly where he should be.

Being a parent is hard but being Jacob’s mother takes the parenting struggles to a whole new stratosphere. Doctors readily admit that Jacob’s medical condition is so rare they have never seen a patient with PMD until him. Why did it take so long for school administrators to recognize the same thing and reason that maybe I do know my son better than they do?

Along the way, there were some people who adamantly opposed Jacob’s attendance at Elkhorn for reasons that never had anything to do with his ability. I was given excuses such as “how would the other parents at Elkhorn react to Jacob at the school?” “If it’s done for Jacob, we would have to do it for everyone” and my favorite, “a parent is not allowed to choose a child’s placement”.

Many months ago, a Superintendent sitting across from me in the principal’s office, told me in a professional-sounding tone, that Jacob could attend another school. The one she selected was not fully wheelchair accessible – he could only enter the basement. When I asked what he would do there, I was told that since the gym is on that level, my son could “watch the other kids participate in phys-ed”. And she was serious. She failed to realize how offensive and discriminatory that was and she didn’t stop to think how Jacob would feel being a silent bystander in that situation.

The first time I proposed that Jacob attend Elkhorn for three full days a week, instead of the 1/2 day a week that he had been doing since May 2011, I was told that I was looking at an uphill struggle. I nodded my head, I said I knew that, but I didn’t know. Not really.

There was no way I would have predicted that what I thought was a reasonable request would cause such turmoil and upheaval at the head office of the Toronto District School Board. If someone would have told me that the issue of my son’s education would disrupt the lives of several senior administrators and bring some of the more progressive and empathic thinkers to tears on more than one occasion I would have suggested they were exaggerating. And if I was told that my son’s schooling would be the subject of several television, radio and newspaper stories, I would have chuckled in disbelief.

At the end of every phone conversation I had with one of these “school board officials” during the spring and summer, I hung up the phone with trembling hands, my insides raged and my head felt like it was going to explode. I still can’t understand how these people were able to ignore the fact that my son thrived during the year he spent one afternoon a week at the school under discussion. He made friends. He learned along side these kids, participating in his way, even answering questions in French class.

As time passed and this fight escalated, my body had trouble adjusting to its new normal – a constant level of anxiety so high that breathing became a task I had to consciously remember to do. Nights became unbearable. I would wake with a start, gasping for air, terrified that I lost one of my kids somewhere, only to remember that the true source of my angst was Jacob’s school situation.

I voiced my request for the first time in February 2012 and it took until October 23rd, nine months later, to happen. I had many long and difficult weeks to ruminate over my request for Jacob’s schooling. I repeatedly asked myself it is was worth pursuing, or whether I should give up the struggle.

Each time I kept coming back to the same stedfast conclusion – this was the best thing for my son.

A father wrote a letter to the School Board requesting them to allow Jacob to attend Elkhorn three full days a week. He described how his kids’ lives have changed since Jacob started attending the school. He explained how his son first told him about Jacob but failed to mention the simple fact that my son was in a wheelchair. It wasn’t a detail that struck this child as important.

The teacher wrote a report that explained how the other kids gravitate towards my son as his wheels cross the threshold of the class each week. She wrote about how the other kids take turns pushing Jacob’s wheelchair at recess, reading to him and walking next to him in the hall. She wrote about how kids from other classes come by to say hi to my son. She detailed how his mere presence in the school transforms the kids from egocentric beings to caring and gentle little people who want to be near Jacob.

And so, I persisted. Jacob deserves nothing less from the school board, and he deserves nothing less from me. And as of last week, he got what he deserved.