My son, Adam lives with autism. He is 22 years old. He copes with the byproducts of autism daily but he manages to have a good life nonetheless. He is a busy person who loves to move, create, experience and explore. He is an artist, a decorated summer and winter Special Olympian and he enjoys cycling and kayaking as of late. For everything Adam has accomplished whether it was learning to speak, read, tie his shoes, swim or live on his own, there has been struggle. His is a life with double and sometimes triple the obstacles faced by others who live without physical or mental afflictions but for every time autism rears its most browbeating attributes, with his family and amazing support staff at his side, he rises up and shines.
As his mother, in my heart, I always want the most recent challenge to be the last. We have already gotten up and dusted ourselves off so many times in the twenty years he’s been living with the effects of autism that I just want it to be smooth sailing from the end of each hurdle for the rest of his life. I always want the conquered hurdle of the moment to be the last, but life does not work like that no matter how much I want it to. For my family, there have never been any miracles or quick fixes for the heavy duty stuff that autism is able to lay upon us — upon Adam. For all the joy, triumph and miracles we never thought we’d see surrounding Adam, I am weary from pressing myself up off the ground after having been run over by the Mack Truck that autism drives from time to time. I can’t dust off the tire marks anymore; the repeated rolling over me has left deep grooves that have reached my soul — and then I look to my son, who gets up faster than I do every time and just continues on with his day and I realize that I need to do the same. But I am getting older. For me resilience is becoming harder. It (autism) is still here. It isn’t going anywhere and while Adam is older and manages it better and better, it won’t stop being a life long challenge for any of us, especially him. Living daily with Adam’s autism might have become easier in general, but its the occasional out-of-the-blue sucker punches that’re going to get us as long as we live.
The Covid-19 pandemic was the perfect setting for a good old autism sucker punch. Hell, we even readied ourselves and still it took us down and delivered a flurry of rapid-fire fisticuffs that took our breaths away for months. The pandemic was hard on everyone and it was a right *$&! for people living with special needs. Everything in Adam’s life changed and he just was not able to understand why he couldn’t do the things he loved to do. He was in his last year of school and the sudden staggered school schedule confused him and shattered the routine he’d proudly created for himself. He was fine with washing his hands more often and actually loved wearing a mask but he wasn’t sick and just couldn’t understand why he couldn’t go to the social dances, speed skate or participate in track and field. He didn’t understand why he couldn’t volunteer, go to the movies or to his favorite restaurants. We couldn’t let him go for walks on his own anymore as we wanted to make sure he stayed protected from the virus. What if he took his mask off and went up and spoke to someone? What if he tried to enter somewhere and didn’t understand the Covid protocol? It was easier for us to accompany him during this time than let him be on his own because no one understood very much about this pandemic and we had to keep him safe. No matter how we tried to explain the pandemic to him, Adam felt like he was being punished. He felt punished and he resented us for “punishing” him. He became bored, frustrated and angry. All the skills he learned that enabled him to live on his own fell by the wayside as he plummeted into behaviors brought about by the loneliness and boredom caused by the pandemic restrictions. At 21, autism aside, Adam wanted what every young adult wants — independence, separation from his parents and his family, the opportunity to work and be productive, to make new friends and the ability and freedom to be his own boss. He saw that his younger brother still had these things in some form but because of Covid-19, he’d lost them completely and it wasn’t fair. Autism never plays fair and we chose his health and safety as priority one and postponed his launch into complete independence.
Adam developed severe anxiety and he quickly became someone we did not recognize and though we tried, we struggled to help him feel better. With everything and everywhere locked down, it took us about 3 months to find a psychiatrist and several tries attempts at finding the right medication to help our son. We drove back and forth to the hospital on days when he felt so anxious he asked to see a doctor. He was lonely and needed people but of course, he didn’t want Mommy and Daddy at this stage of his life, who would? I set about trying to increase his support staff as in his latest condition it seemed best for him to have 24 hour supervision and I sought to create a team that was a blend of people with years of experience as well as people close to his age so that he would feel less “baby sat”. Support persons were difficult to find but as usual, I kept trying as I believed there had to be people out there still willing to work with people like my son during the pandemic. I made the social services agencies aware that I needed assistance putting these things in place for my son urgently. Social Services struggles in the best of times to do whatever they can to help their clients and try as they might, they could not be as immediate as Adam needed them to be because nothing was happening immediately during Covid. Still, everyone at the agencies inched along working as hard as they could to help us, help Adam, and I am extremely grateful for their efforts. Unfortunately, things hit rock bottom before they stabilized and got better. Not only did my son singlehandedly destroy his community support apartment, he starting hitting himself in the face to try and stop whatever it was that was that was making him irritable. He also became aggressive towards us because we are his family. He looks to us for answers, comfort and to make things better and with my son’s autism, sometimes rationalizing and waiting are not strong suits. As spring 2021 approached, Adam settled. He was calm. He was living in a bigger, brighter place. He was happy and he was in control of his life once more. He became (as he likes to call himself) “the boss” again as plans to help him heal slowly fell into place. I hired him the most amazing, compassionate support staff, got him a fabulous psychiatrist and through the social service agency, was introduced to an absolute miracle worker in the form of the wisest and most intuitive psychologist in our area. The sun shone on our son and our family once again. As more people were vaccinated, things began opening up and we all slowly got our lives back. Adam started smiling again and he re-discovered the joy that was suddenly cut out of his life. At our 2nd annual staff meeting in May, the team was so happy and proud of Adam’s rebound. We had much to celebrate and if I could pick a theme song for our family to describe this time of renewal it would be Ella Fitzgerald’s Blue Skies. You know the one, right? ~
Smiling at me
Nothing but blue skies
Do I see
All of them gone
Nothing but blue skies
From now on
Shortly after our merriment in May, Etta James’ Stormy Weather had taken over the number one spot on our music chart as it had throughout the years, knocking MS. Fitzgerald’s Blue Skies completely out of contention. Because Adam had taken to hitting himself hard in the face over during the first year of the pandemic, I sent him to have his eyes and ears checked as often as I could, even paying out of pocket as by the second visit, it was outside what our provincial health care would cover annually. On each occasion, Adam had perfect hearing and 20/20 vision in each eye. His father, his support team and I did all we could to make sure he was okay as we went through the process of the therapy and the medication working together to gradually help Adam with his anxiety. He’d stopped the destructive and self harming behaviors. Even the dosage of his medications were reduced. (I hear you, you’re thinking we should still be singing along with Ella, right? WRONG). Despite all our efforts to make sure his eyes and ears were healthy and unharmed, Adam somehow had damaged his left eye. In early June, one of our support workers found his left pupil looked cloudy and we took him to the hospital where they said it was a massive cataract. In young people massive cataracts are often the cause of blunt trauma. We had made sure his eyes and ears were in good shape so while we knew he did engage in harming himself, we were sure he hadn’t done any damage. The x rays and scans were clear, he could read the eye charts perfectly with each eye and he displayed perfect vision. Did he fall? Did he hit his head? Everyone on our team was stumped. Adam is not only the most surefooted person we know, he hadn’t had any accidents with his return to skating and track and someone was always with him and there wasn’t an incident we knew of that could have caused this eye condition. Now, hold on a hot minute! When Adam started leaving the movies in the middle of a show back in May, was that a sign that he couldn’t see well in that eye? No, Batman was too long and not his kind of movie and I mean, Pattinson, the vampire boy? Not Adam’s type of superhero. Plus with the second movie he’d gone to see, he’s already seen a couple times. Maybe he left because he was bored with it? He’s the kind of guy that would leave if he wasn’t having a good time. Soon after he saw that Top Gun revival with his Dad and sat through the whole thing. Surely if he couldn’t see well, Tom would have noticed, right? The questions swirled around our family and his support team like a tornado. Everyone was stunned and saddened when the doctor had discovered Adam wasn’t seeing out of his eye at all but were hopeful that it was just a cataract because you can fix a cataract!
We were referred to a specialist who wanted to make sure the rest of the eye was in tact and he performed a more revealing ultrasound and saw a small funnel retina detachment that he felt could be repaired along with the cataract. With the cataract being so big and thick and the retina being detached, laser technology was not an option and Adam was referred to a surgeon in Kingston. After the appointment the surgeon booked him for surgery the following week. I asked the first specialist if there was a chance that my son would lose vision in his eye and he told me that that was always a possibility but so was restoring some percentage of vision in the eye. I know that matters of the eye need to be tended to quickly, and I realized that while my son’s condition was serious, given the time between the in-depth ultrasound, the referral to the surgeon and the date of Adam’s surgery, it was still serious but less urgent than it seemed before and I began to prepare myself and my family for the reality that Adam might be down to one functional eye. My husband and other son also reminded me that there was a window of hope but being in this autism rodeo as long as I have, as the main person speaking to the doctors over the years, I knew we had already started down a darker rabbit hole because of the lack of urgency for the next steps. The surgery took longer than anticipated because the surgeon tried his best to repair the extensive damage to the retina but when my husband relayed what he had said post surgery, it confirmed what I knew in my heart — what I most feared. Adam was going to be permanently blind in his left eye.
I will say this, if Adam was not autistic, he would have said something about his eye when he first noticed his vision was changing. While he reads, understands, spells, texts, writes and speaks, verbal communication has been his primary hurdle. He is a man of few words. He is an observer and a planner. The fact that he can communicate as much as he can verbally and by writing and typing is incredible considering he stopped speaking at 14 months and did not utter a sound until he was 2 1/2 with phrases and sentences returning 2 years after that. If Adam was not autistic he would have drawn attention to his left eye which was slowly failing him. Instead, he quietly adapted, much like an animal would I suppose. This quiet sucker punch to me was the worst one autism has delivered since his diagnosis. I actually feel I accepted his diagnosis of autism better than I am accepting that my son is blind in one eye. I think it is the worst blow I have received. I have learned to navigate around and incorporate Adam’s autism into our lives and it has become our normal. I don’t resent it for being a part of Adam because it is what makes Adam unique and the Adam we know and love, but I have spent so much of my life with my husband doing all the extras to protect him from the things that he would not readily be on the look out for, that I cannot understand how he wouldn’t just say, “hey, what’s going on with my eye?” I mean he talks about things that make him uncomfortable all the time. Why didn’t he say anything this time? Autism. Fucking autism, that’s why. And what is worse, I missed it. The doctor said this damage occurred long enough that the retina was too scarred to be repaired. Somewhere between the eye exam at the end of winter this year and June, Adam was losing vision in his left eye. I’d seen him numerous times and the staff was working with him every day and we missed it. If Sam (who works with Adam) hadn’t stared at him that day when she thought she’d seen something cloudy in his eye, we wouldn’t have known anything was wrong. We took him to the doctor immediately but it was too late. We missed it but in my heart, I missed it and I don’t miss much and when it comes to Adam, his brother, Logan, their father and myself regarding our health. This is the first thing I’ve missed and it sickens me because I can’t change it. I can’t fix it. I can’t give him my left eye. If it was a possibility that you could transplant and eye, I would have done it without a thought for myself. The whole time I was going between the ER and the specialist and the surgeon, I was thinking, this will will turn out aright. We might not get 100 percent of the vision back but we will get some and we will get the right glasses. It will be fine. Adam has autism and he’s been through so much and come through so much and he’s so healthy, he’s never sick and he heals quickly and shit, the guy lives with autism, he doesn’t need any more grief. He will be fine. He’s always fine. Then “will” turned into he “should” be fine and that changed to he “might” be fine and as logic switched back on in my brain and reality slipped back into the channels that keep me focused, the sentence I saw in my mind clearly read “he’s lost the use of this eye and we are entering a new phase of Adam’s adult life journey”. My head hit the mat hard and then my body landed in slow motion. Autism pinned my neck down with it’s foot and the referee counted me down for the loss and I haven’t had the energy to get up. Not this time. Not yet.
I know as a parent, we try to do all we can to take care of our children and I know I can’t protect them every second of every day. I let my sons do all sorts of stuff but I’ve always been able to advise them, and show them how to be smart and protect themselves as best as they can but this was a big blow for me. It’s the biggest blow to Adam, of course. He now has to live with monocular vision and really take care of that right eye. Of course, he’s adapted to it since he first started to lose vision on the left. I mean he duped us all because he just went on being himself never giving any physical indication that he could only see on his right. He went kayaking, swimming and hiking as usual. Heck, he even went to an outdoor concert in Toronto before his surgery and after the surgery went to a barbecue at someone’s house. He’s going for walks and going to his favorite restaurants and in a couple weeks he starts working again at the Y and at the food bank and he’ll be able to go rock climbing and kayaking again in about 3 weeks. He’s moved on so now I pretend that I have as well when I’m with him. I’m not going to give him any indication that I am worried or sad about what has happened. I need to continue to encourage him to live his best life just as I always have and show him that I trust that he understands that he has to be super careful with his vision now. We have discussed that he will be seeing more of his eye doctor to help him with this new journey and I have to step back and give him his space. As usual, I am in awe of him and I am very proud of his resilience. He’s living his life. He’s adapting more to this change every day. He’s donned his very cool protective glasses (he has several pairs) and is as handsome as ever while wearing them and he knows to always protect his eyes when outdoors in the sun as well. I will schedule him regular eye exams and make sure he continues to eat healthily and act with caution when he’s doing his activities and be there and be as ready as I can for the next hiccup.
But, I’m not good with it. I feel like I’ve been beaten this time. Even though I did everything I could to make sure his eyes and ears were not damaged, it still wasn’t enough. We’re all tired. I am tired. I am so very tired from doing all I can to have just fallen short of being able to protect our boy. I am deeply damaged by this one for sure. I don’t know when this wound will heal and contrary to my personality, I kind of feel like staying down for the count with this one for a while. After all we went through during Covid with Adam’s autism I didn’t think I would have anything to share or write about because we came through it, you know? Nothing but blue skies, right Ella? And I didn’t want to re-hash it or re-live it or garner any sympathy from anybody, you know? I thought, well, this is great because we’re all just going to move on but this bitch ever so silently and stealthily wound up and got me on the jaw and I saw stars and I haven’t recovered. Adam seems to be on the mend but his momma just doesn’t have it right now and I’m not sure when I’ll get that gumption I need and rely on to move past this one and I don’t even want to try right now. I am deathly afraid that one day he will lose vision altogether even though he may have sight until the end of his days. He’s not the only pirate-come-lately in this family (oddly enough, I think they all lost vision in the same eye) but he is the only one with autism. I am his mother and he has autism and now he has one functional eye and I will continue to worry, fuck it! It’s my baseline. I know as time goes on, this left eye blindness will not take up the forefront of my mind. I know that one day I won’t feel the stabbing pain of useless guilt 90 percent of the day and one day I won’t wake at night worrying about his sight. One day I know I will be able to be completely engaged in a conversation without having my thoughts drift to my son’s blind left eye. I know until then I will continue to do what I do best when I am working on coping with heavy stuff — I will pretend that I’m okay, especially around Adam, in the hope that one day, I will make peace with it as he has. Though I am worn down and and blemished by 20 years of autism’s attacks on my spirit, I hope I too can be resilient, but for now, I may have to let Etta James croon about the way I feel a little longer ~
Don’t know why
There’s no sun up in the sky
Stormy weather, stormy weather
And I just can get my poor self together
Oh, I’m weary all of the time
The time, so weary all of the time