Friday, February 12, 2016

Somewhere on the Spectrum. Written by Kim

Somewhere on the Spectrum

There were signs...there were always signs. I would call his name and he wouldn't respond, transfixed on whatever tv show he was fixated on. The stories he would tell me that started in the middle, without context that were delivered in his flat, monotone voice. The stare that was super intense, the need to sniff things, the joy at being in tight spaces...the signs were there all along but it took years for me to put the pieces together.

When Connor was 10, I worked at his school as an educational assistant. The staff room overlooked the front area where the children played during recess; one day while the children were outside and I was on my break I noticed him out there, all by himself in a sea of children. Children who were running after each other, screaming, teasing, kicking balls, jumping rope. Connor was walking in a circle. I turned to his teacher and asked if she'd ever seen him do that before and she hadn't...but everything started clicking for me. The time he was in the bumper cars driving in a tight circle in the corner while everyone else interacted, the rages, the sleep's like all the pieces had been floating around me and suddenly dropped into place, forming a perfect picture. Connor had Autism. I knew it in that moment.

The path to an official diagnosis was long and complicated but we did finally get the diagnosis of Autism shortly before his 11th birthday. Even though I knew it was coming, I was completely unprepared for the emotions that came with the diagnosis, the fears and uncertainty. Connor, such a smartie pants...he knew what the testing and appointments were all about. When we got the diagnosis and I shared it with him, I asked what he thought about it. He said "I'm still the same person I was yesterday". Wise beyond his years! Things weren't ok, but his acceptance and belief in himself have carried us a long way on this journey.  

Connor has always had a daredevil streak and a wild temper and as he got older, both got harder to manage. There were meltdowns that involved broken windows, sharp objects thrown in our new pool within days of installation...and later experimenting with smoking, then drinking, then drugs. Through all of it, we have mostly struggled husband and I are solid but we don't have a lot of support from family and friends. We live in a rural area without a large Autism community and have always struggled with a lack of understanding and awareness about how difficult this journey has been. "He doesn't LOOK like he has Autism"...whatever the hell that means. "But he functions so well!" No one really understands the desperation we have felt at times while raising him.

Connor has always been strong academically; in high school he took a full slate of science and math courses with an eye towards taking a science degree in university. We were proud and terrified at the same time. There were still major bumps in the road; Connor got his driver's license then totalled my car driving too fast while on a fast-food run at lunch time from school (he didn't have permission to be out with my car at lunch due to a previous indiscretion). It seemed that each time he would regain our trust, he would blow it again. During his high school years, he did his best to hide the fact that he was Autistic from his peers; he changed schools at the start of grade 10 so was around mainly new people. He hid many of his quirks and gravitated towards people who were on the fringes...unfortunately those people weren't always good friends.

Connor was accepted into a science program at a university four hours away from us; he was convinced that he wanted to go away for university (his older brother attends university 30 minutes from home) and while we were petrified, we also knew he would learn independence in a way that wasn't possible if he stayed at the end of the summer, we packed him up and drove him to his new home in residence at university. We dropped him off Saturday morning; there was music blasting and the older students welcomed the freshmen with open arms. Connor was just one of the gang! We drove home feeling worried and proud...and then Connor's daredevil streak got him in trouble again.

2:00 Sunday afternoon (the day after we dropped him off) and I had just sat down with a cup of tea; my husband and younger son had gone to our older son's apartment and I had just finished cleaning Connor's room when he called. His university is built on a steep hill and one of the activities they had arranged for frosh week was a slip-and-slide (long sheet of plastic with soap and water)...Connor's daredevil side had him running and jumping onto the plastic...and he broke his femur on his last run. He was transported by ambulance to the hospital and would need surgery. I threw a few things in a bag, jumped in my car and took off, calling my husband on the way. I spent the next week with him in the hospital, sleeping in short bits on a cot they were good enough to bring in for me. He had to learn to walk again, do stairs etc. Classes hadn't even started yet and his semester was in jeopardy but his stubborn streak wouldn't allow him to take time off. I rented a wheelchair, bath seat etc. His residence committee arranged for him to have a room on the first floor near the bathroom and moved all his things for him while he was still in the hospital. Filled with trepidation, I took him back to his university and while he was in the bathroom, I started moving a few things around to allow him better mobility in his room. That's when I found the bong.

Once again, trust gone. I confronted him then drove home fuming...I felt betrayed. Over the next few months, we clawed our way back towards a (somewhat) normal relationship. He came home for Thanksgiving and was walking with crutches; we had a great weekend as a family and I looked forward to Christmas.

By the time he came home for Christmas, he was able to drive again; he took the car and went to visit a friend one day...when he came back, he went up to his room without stopping to say hi so I popped into his room...and all I could smell was weed. Angry doesn't even begin to describe how I felt. We sat down with him and explained the potential implications of the decisions he had made and made it clear that this was the last time. If he wanted to stay with us, he couldn't use drugs. Period. We knew he was struggling with accepting his challenges, that he was depressed...we offered to arrange for counselling. He wouldn't hear of it. It was a long two weeks before he went back to university.

And we clawed our way back to "normal" again. Connor finished semester 2 and returned home for the summer; he got a job at McDonald's, working full time. We had the drug discussion when he came home and really, he had little time or freedom to make it happen...but he did make it happen, right before returning to university for the fall. My husband caught him outside one evening, smoking pot after I had gone to bed.

Nobody outside of my husband and I get it. My mother in law told my husband I should be able to keep a neater house and have more time to entertain them when they come; what she and no one seems to understand is that there are days..weeks...months where I don't even know who I am anymore. We are so locked in this battle for our son that things like sending birthday cards to family members are no longer important. I don't have time for people who can't accept where we are in our life right now because it is chaos, absolute madness. On top of what we go through with Connor, our youngest son has a NVLD, anxiety and epilepsy and this fall sustained a serious concussion while practicing for his sport...but I still have hope.

Connor barely made it through first semester this year; he is in his second year of university now and lives in an apartment with two roommates. Somehow, somewhere along the way this fall, through the struggle and despair, something clicked for him. He has finally accepted that he needs support. He arranged for counselling at university, has talked to his academic advisor about reducing his course load and doing his degree over five years instead of six...he came home at Christmas and worked at his job. We made it through the holidays without any major incidents; he is attending all of his classes and getting his work handed in. He has even come up with a strategy to help him focus in class and reduce his ticks (which were apparently disturbing his classmates)...a stress ball! For the first time in a long time, there is a tiny bit of light in the darkness.

I tricked myself into believing Connor would have a "normal" progression through the teenage years to adulthood and beyond. All the people in our lives who believe he is like everyone else...well, I guess they rubbed off. I've had to come to a place of acceptance (again) that this journey is far from over. I don't know how much Connor will need our support in the coming years but I do know that he is closer to independence now than he has ever been before. He is even starting to tell people he trusts that he has Autism...and that is a big step towards his acceptance of self. I couldn't be prouder.

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