My 17 year old son pulled out his own fully, adult-grown molar a couple of weeks ago.
You read that right. It made my stomach churn too.
Now, when you hear this, what does your mind jump to, knowing that he has autism?
Do you imagine an animal-like person, fit to live sedated and in a secure and padded room? Or when I tell you that two weeks ago, on only his fifth day back to school, he became upset, went into meltdown and caused them to evacuate the classroom when he became aggressive and they called me to come and pick him up – what do you think of him then? Or when I tell you that a few weeks prior to that, he ran away buck naked and up the street to try to get into a neighbour’s house – probably just to see what was in the fridge – does it reinforce your view that he is someone who should likely be placed in the care of a group home because he’s out of control and “too hard to handle”?
In seventeen years with Will, we have seventeen times at least a few dozen shocking stories to tell, that really make you shake your head and hold your breath. I imagine you hear about them and think “Oh. My. God. Is this for real?”. I hate putting the truth to words, but I know many want to say (or say in the privacy of conversations with their friends) “what is Stacey thinking? She can’t manage this on her own forever. He’s too much to handle.. and she has two of them!”. I know people feel this way. I’m not an idiot and I’ve had it said to my face, more times than I can count.
I get it. The stories are unbelievable and all the more shocking because they never stop. My whole life seems to be one big shocking story that seems as if I’ve made it up or exaggerated. I can see why you would think that. I think that myself sometimes. Some people parent their kids and come out of it with only one or two of those crazy stories to tell when they are giving the speech at their child’s wedding.
Honest to God – I don’t even remember half of these stories anymore. I really don’t. I believe it’s how I cope, it’s how I survive it all. A therapist told me I had classic PTSD (Post Traumatic Stress Disorder), that I ticked all the boxes on the DSM-5 checklist. I believe that’s very true, but I have also developed some coping mechanisms so that I could just get on with it. Blocking out the details of those traumatic events must be one of them.
We have been going through another intensive period with Will of late. I’m not sure if it’s because of COVID. If it’s because of all the change in our household with some traumatic experiences with his older brother leaving the house. It could be puberty, since it has hit him a little later than most. Or it could be as simple (but as maddeningly painful) as a toothache that he has had to put up with for nearly two years.
Nothing is simple with, or for this kid.
Will doesn’t know how to whine, complain or seek attention for himself the way neuro-typical people tend to do at one point or another. If he has a cold, he just deals with it. If he has pain, you won’t know it. If he’s going to puke – he just does it, then he’s over it. He doesn’t have the language to describe all that goes with those physical experiences, so there’s no drama required. It is what it is. But the problem with that, is that he (and his brother) often suffer in silence.
If you are a parent, do you remember when your child was a baby and you would examine every inch of them to make sure they were okay? You would be calling the doctor at the first sign of a spot or redness on the skin, for fear the rash was something terrible. You might take their temperature every single day, regardless of how they appeared, because you heard all the horror stories of children’s fevers causing catastrophic outcomes. You were hyper-vigilant and any missed ‘symptom’ would be met by your over-reaction to remedy it, so that you could erase the guilt you felt that you weren’t on top of it.
I have been living like that for seventeen years. Hyper-vigilance for any sign of discomfort. For illness. For emotional upset. For a need that needs to be met. You can imagine that so many things are missed.
For Will, it was his teeth. He won’t regularly go to a dentist and we haven’t been able to find one that both of the boys were comfortable with. It’s been a constant worry and challenge. We were waitlisted and had several issues with our family doctor referring us to the Sick Kids Dental Clinic (so worth it once you get in!). It took nearly a year for it to happen and in that time, Will started complaining “tooth hurt”. I couldn’t see any issues in his mouth, but knew it was a legit complaint for him to verbalize it. Progressively over the course of the year, the complaining got worse. But we could go days and weeks in between where he wouldn’t mention it and he was eating normally. We finally got our appointment in February and we managed to get x-rays and a surgery booked. The beauty of this clinic is the access to OR’s at Sick Kids, anaesthesiologists who have experience working with complex needs kids and staff who are ready for anything. Will’s surgery was booked for July and the plan was to have two teeth extractions, fillings and a cleaning and anything else that needed doing.
Then came COVID. The surgery was deemed non-essential and was postponed.
March to September was hell for Will. Hell. I have a child whose anxiety already presents itself as OCD and he fixates on thoughts that often lead to extreme behaviours. So for him to be suffering with an aching mouth for that long, meant that he obsessively fixated on doing everything he could to relieve it. In his mind, I think he believed that if it hurt, he should be able to pull it out like he did when he was younger with loose teeth. So literally hundreds of times a day, he would say “tooth pull. Hospital” and hundreds of times a day, you would hear me saying “Will – hands out of your mouth. Don’t touch”. Constant. Constant. Pain. Constant frustration. On his end, I’m sure he hated me. Why couldn’t I just take him to the hospital and get this pain out of his mouth?!
By the beginning of August Will was miserable. He had some swelling that appeared in his jaw, he had a low-grade fever and his cheek was warm. He couldn’t eat using that one tooth anymore either. So we consulted with the dental team at Sick Kids before making the trip and were told if we brought him, he would likely have it pulled via the ER. It was off to Sick Kids and Will practically danced his way in there but he came out hours after with a treatment plan of Tylenol until further notice. I’m not placing blame because I understand that this pandemic has put strains on our health system and they have had to make unprecedented readjustments to priorities of care. But bloody hell.. I wish they could know what that cost Will and our family.
It meant having to have my dad come stay overnight and sleep on the couch so he could guard the doors to make sure Will didn’t run away while I was sleeping because he was fixated on getting out and running (to the hospital?). We had to block all the doors and shadow him one day because he was on a mission to escape. After aggression that wouldn’t end and constant battles at the doors, I had to sedate him with medication — the first time I have ever had to do that! — to calm him down. It meant a day spent calling every dentist in our region of Ontario to see if someone would take him on and extract the tooth – to no avail. His situation was considered “complex” and the wait lists were too long. It meant multiple “virtual trips” to the walk-in clinic until FINALLY we found an ultra-compassionate doctor who listened and understood that Will could use some more than a prescription of Tylenol to get him through this. It meant finding Will sticking a nail file into his gums (sorry for the disgusting visual) to try and pry the tooth out himself, for the surgery-scheduler at Sick Kids to book us another date.
September 16th was the magic date and Will was beyond excited. Like Christmas-excited. This is a kid who used to hate doctors and offices and anything medical-related. We were thrilled. The day had finally arrived and he would finally have some pain relief and we could get on with a “normal”, pain-free life.
Within 24 hours of being home, as I was tucking him into bed, I found something in his covers. Thought it was a piece that had broken off a toy. Then realized it was a molar. A healthy molar. What. The. F*ck. (sorry virgin ear-readers – but swearing was warranted here).
He pulled out a third tooth.
In all of the seventeen years, with all of the behaviours, all of the near-misses and ninth life saves that we can’t believe we have survived – never have I been this upset.
Aggression is an expression of his frustration; like Marilyn referenced in her blog post, Mommy Guilt & Respite, it’s a form of communication. Running away and wandering is not necessarily Will escaping, but it’s his effort to get somewhere he is fixated on. His fixations and perseverative thoughts are an expression of his anxiety and an effort to have a sense of control. I can work with aggression, communication, running away, perseverations and anxiety. They suck for him and for me, but I can work with it. There’s hope for an improvement with all of those things if we work at it.
But pulling out his own healthy tooth, I can’t work on that behaviour. If he is that driven to remove something that is irritating him – that’s not something I can work with. I don’t think this is teachable and this time, the consequences are permanent and devastating. It doesn’t matter how many social stories I show him, or videos I have him watch, he does not understand that he will never ever again have those teeth and he will miss them. He needs them to eat. His gums will forever hurt. And it hurts my heart with a depth I can’t put to words, that this is one I can’t fix for him. They’re just teeth, but they are also a symbol of a barrier to his future independence. It’s just one more permanent example of how this effing disorder is so unfair.
Autism has so much beauty and brings us so many unexpected gifts. But sometimes it sucks and today I’m giving myself permission to hate it for all the way it impedes the fulfillment of my boys’ potential at having fulfilling and happy lives.
Today we are still living with drama of the mouth. Will just completed a round of antibiotics because of an abscess in his mouth that caused him to wake up with a grapefruit-sized swelling at his jaw. I can’t keep his hands out of his mouth because now, he’s obsessed with pulling out a fourth molar because his mouth is no longer symmetrical. Or it might be because he has pain in his gums from their healing, but he thinks it’s the tooth causing it and thinks it will disappear if it’s pulled.
The drama never ends. Will’s torment never ends. My hyper-vigilance is always in full effect and my own anxiety is always red hot.
I started this rant posing the question of what you thought of a kid like Will and if you thought I should be able to handle it on my own or whether you thought he should be under the care and supervision of professional caregiver outside of my home. I don’t really want you to answer that question. But I do want you to know mine.
Will isn’t too much. He is a lot. But he’s worth all of my angst and worry, anxiety and heartache. Not only is he worth it, but he deserves to live in a home setting with people who want to work at it. There is no poetic ending to this story or lesson learned. There is only love and hope that something will click and his inner turmoil will lessen.
I’m trying my best to pay it forward by dealing hope and sharing stories & tips on caregiving and how to survive hard things. I blog a lot about single parenting my adult twin sons who both have autism, and the challenges we face in surviving the everyday challenges and planning for a future full of unknowns.