Trust the process

We’ve been through a tough time lately, our family. Some are more aware of the details than others, because they’ve been there in the trenches with me. Boy 2 thankfully has been happily enjoying life at boarding school, so has been spared from most of it.

I’m looking at options of how best to proceed, but I have to tell my story right now, today, because it sits inside me and it’s fucking seething and furious and fighting to get out. All the time. And even my husband said this morning “Sweetie, just write about it, even I’m getting kind of sick of hearing it.”

So when I last wrote, we were only just starting to understand Autism meltdowns/burnout. Well, no, that’s not true. We didn’t understand the first thing about it. Most of what I now know I have learnt post crisis.

Jack has had 3 meltdowns since he turned 16. This last one lasted 5 days, 5 days and nights of pacing and roaring and shouting and raging. We were exhausted, beyond worried, and in complete despair. We were advised, and as parents, decided as a couple that it was time to try the Psychiatric route. While I deeply regret this decision, it’s not because I’m anti-medication. I’m not, and have myself been on anti-anxiety medication for years. I have seen medication help a lot of people, and I’ve seen the devastating consequences when they decide to come off their meds too.

So we check into this facility, right? One where I can stay with him, be with him, while we figure this out. By there was no time taken to figure out shit, no screening and assessment. An appointment with me and (I shall call her here, for purpose of anonymity) Dr X. Where I tell her about Jack’s ASD, the full history of the meltdowns and the apparent triggers. And by the time I get back downstairs they have started medicating Boy 1. Not a bit of a sedative, mind you. Full fucking, balls to the wall, injections and pills and Lord alone knows what.

I am so deeply uncomfortable with it, but am a mother in crisis, who has now handed herself over to the professionals, the Psychiatrist with 30 years experience. This fact is mentioned often, whenever I try and question anything. I have been told “We have to shut his brain down, so it can heal”. And as much as that doesn’t make sense to me, I am constantly told “You have to trust the process.” So I try, and I do.

My child becomes a zombie, in the true sense. Constantly walking, pacing, not sleeping, but also not awake. And I pace with him, because he is so drugged that his eyes are closed and his mouth is slack and I just can’t fucking take it, I can’t take it, I can’t take it. My son has never hurt anyone, never done anything criminal, never broken or destroyed furniture. He was a child in the midst of an emotional dysregulation episode, surely all this can’t be necessary? Trust the process, trust the process. We checked in on Tuesday and by Saturday I could take no more. I begged the nurses for a doctor to come and see my child in person, please please I beg of you, this can’t be right.

Being a weekend, and Dr X not available, the Dr on duty come to see Jack. Immediately he recognises that he has developed Akathesia, a movement disorder side effect of the medication, and instructs the nurses to take him down from (I believe, I speak under some correction, because the nurses wouldn’t give me his files. That’s right, they wouldn’t) four anti-psychotics to one.

And I like this doctor, I get a good feeling from him. And so I tell the nurses the next morning, I would like to change doctors. I don’t understand what we’re doing here, I don’t understand what we’re supposed to be treating, I want a second opinion. Oh, no, they say to me, with big scared eyes, you’ll need to speak to Dr X about that.

By the time Monday comes and I see Dr X again, Jack is calmer. And again she says, trust the process. And interestingly, directly after, says “You’re making me feel like a fake.”

I am red flagged as difficult, crazy mom. And that’s when the real shit starts.

Two nights later crazy walking dead zombie Jack is back. I say to the nurses, I cannot have you give my child that anti-psychotic tonight, I just cannot, surely this is my right as a mother, to question what’s going on? They say they can’t allow a change in medication without consulting Dr X. So, as I’m sure is hospital protocol, the nurse disappeared into an empty ward with the phone to contact Dr X. I’m literally begging to speak to her myself, but apparently that’s not allowed. So I did, in fact, storm into the room and grab the phone from the nurse’s hand. The nurse looks fit to faint from the shock, it’s apparent that everyone is terrified of Dr X. And I say listen lady, I am not fucking happy with this situation at all. And then I am told the following….

Mrs Kastner, you have done nothing but cause trouble and question my decisions here. You will follow my treatment plan, as prescribed by me, or you will leave. But I promise there is not another facility in this province who would take in you and your son right now. And you WILL NOT see another doctor at this facility.

There, just like that. By which time every fibre of my being is wanting to get my son the hell out of there as fast as I can. But I cannot, he is a zombie, and I’ve no idea what I’ll do with that once we get home. I am stuck, we are trapped. We are trapped, and my heart is breaking for my child.

I go outside and sit in the garden and I phone Sensible Sister. She’ll know what to do. And she is calm and measured, as she always is, and also outraged and horrified. But together we decide that I cannot, at this stage, be thrown out of the facility, I have to see this thing through. At this point, I have no choice. So I write a sucky-uppy whatsapp to Dr X, apologising for interfering with hospital protocol blah blah.

And I lie on the mattress next to my zombie child and I cry and cry and cry. On day 11 I finally allow my husband to visit. But I meet him first for coffee, to try and prepare him for what he will see, and I know he’s not going to like it. And I see his heart break when his boy doesn’t recognise him, and he tries to take him for a zombie walk outside, but my boy can’t climb a couple of stairs. And I say to him, I know, I know, I’m so sorry, but we’re in this thing now, and we have to trust the process. And he is heartbroken, shattered, but he agrees. We made this decision together, we have to trust the process.

On Day 12 suddenly I see a little bit of Jack, and I am just so relieved and so fucking excited. He asks for pizza, and I arrange for one from the restaurant down the road. And he eats the pizza, and I get him a Coke Zero which he isn’t usually allowed, and I’m so grateful that he is kind of speaking and I can kind of understand what he is saying that I weep with relief.

Day 13 dawns and he is a little bit more awake. And we are told we can be released. And I am so tired, and so sad, and so homesick that I say, fantastic, what great news. A final goodbye to Dr X, and a pile of pills to give Jack when we get home. With no explanation of what they are, what we are treating, what diagnosis, what possible side effects.

And, as bad as that story is, it’s about to get a whole lot worse. That is when the nightmare really began.

Day 1 and 2 back home we were cautiously optimistic. Little bits of old Jack, interspersed with really mean stranger. But by day 3 the shit really hit the fan. Jack went crazy, constantly shouting MY BRAIN IS MELTING, I want to kill myself, I want to stick a knife in my heart. And I try to phone Dr X, I leave messages, I send whatsapp’s which are blue ticked but never responded to. I beg for a second opinion, for some assistance. I then send an email, cc’ing everyone who worked with Jack while we were at the facility. And Dr X replies to all. “I am treating him for a differential diagnosis of Bipolar disorder and/or temporal lobe epilepsy. Add another pill, I will forward the prescription.”

With every pill we give him, Jack gets worse and worse. And we can’t just stop the meds because we don’t know what that will do either. In the meantime, I am phoning like every Psychiatrist in the country, like every single one, desperately trying to get an emergency appointment. And no one can see us before July.

While still leaving desperate messages at the facility, for Dr X to call me, for any fucking Psychiatrist there to PLEASE PLEASE CALL ME. I need to get my son off this toxic shit, but I need to do it safely. My child is suicidal, this is new behaviour, and it’s escalating. Please, please call me. And I get no response. Nothing.

How can this be? On all the medication it says “If you are seeing any side effects contact your doctor immediately.” How can this be?

Through a family member who is a Dr I manage to get hold of another Dr by phone. He says the child is having paradoxical effects to medication. (I have since learnt this is more likely for the neurodiverse brain, and therefore should be especially carefully monitored.) His ridiculously high doses of sleeping medication is making him unable to sleep, his anti-psychotics are making him psychotic. We need to get him off these medications immediately. And he consults with his Psychiatrist colleague and they advise me by phone which medications I can immediately remove and which I need to gradually reduce. And I grateful, so so grateful to this man who took an hour out of his Friday afternoon to get the full details, who gave me his home telephone number in case I needed him and his cellphone was on silent in the night. And he says “You do not have to thank me. There is a child in crisis, and this is my duty.” He is a real doctor.

And by day 4 off the medication my child is back. And I get down on my knees and I thank God, for getting us through this.

And an angel network of special needs moms gets us an appointment with a psychiatrist. Who advises against medication for now due to Jack’s sensitive brain and does a full 90 minute assessment. Asks all the right questions and takes every element into consideration. And rightly says there is no reason to be treating for Bipolar, or Epilepsy at this point. Autism meltdown/ burnout with some other insightful diagnostic details, proper referrals to professionals who can help us to ensure it doesn’t happen again.

And we are working on it, every day I am learning so much. About my child, the various challenges that come with ASD, how to help and support him through the difficult adolescent phase. The stars have aligned, the miracles are happening, the butterflies and lighthouses are showing me the way.

This particular earthquake shook our world so hard. It turned it completely upside down. And as the pieces fall back together, they fit differently. A new path is unfolding for me, for our family. I have met incredible new people, am entering a whole new world. I will learn everything I need to know, and I will share it with other parents of Neurodiverse children. The gift of every ordinary day holds new joy for me, I see the blessings of my life with fresh new eyes.

And this process I trust. My child is on no medication, and he is lovely. He is not sick, he does not need to fill his mornings and evenings with pills. No one, NO ONE, will ever again put anything in my child’s body that I have not researched properly, and expressly approved.

This last lesson was a hard one, and I wish we didn’t have to learn it. I am focusing on my family, on healing our trauma and steadying our boat. But one way or another I will ensure that Dr X is not allowed to do this to another family, ever again. You cannot just zombie people up, so that you can fill your expensive private clinic beds, and then cast them adrift. I will not be quiet, and I will not just go away. Because I can be a feisty one when I am messed with. But you ain’t seen nothing yet until you have messed with my child.

Still no word from her, by the way. Not a word.

Could you even believe it?