“Have you ever considered medication for Jude?”
The voice inside my head was screaming to be heard “Medication, of course not. There’s no f**ing way that I’m giving my son medication and turn him into some kind of drugged up zombie.”
That’s not the exact words that came out of my mouth in reply, as my public voice is much more polite. Instead, I sort of mumbled something like, “it’s not really the route we want to go down.”
This question came up during a meeting about Jude’s progress at school. This wasn’t one of your regular parent evening type of meetings where you get to discuss handwriting, reading and maths. We’re yet to have one of those meetings. Instead, our meetings involve about 10 people, so many you forget exactly what it is each person who’s there does/
I know the topic of medication will be divisive, but I want to try and shed some light on what goes through a parents mind when this is even a suggestion for your child.
For some of you reading this, medication might be an essential part of your everyday routine for you or your child. For others, you’ll probably be shocked and horrified even at the idea that a 5-year-old might be on medication for mental issues.
That’s the reality of the size of the challenges that Jude has been having for the last 2 years, that an anti-psychotic medication was suggested as a possible solution for him.
The word itself makes me want to cry or throw up. How can my beautiful, gentle, wouldn’t hurt a fly, boy even be mentioned in relation to a medication that is anti-psychotic?
The hardest thing is, if I’m honest, at times his behaviour can appear exactly that, psychotic.
Jude has always had meltdowns, even as a baby. When he was really young they were dismissed as colic, but looking back it’s clear it was related to his autism. As he has got older these meltdowns have progressed from uncontrollable crying and distress to real physical self-harming.
What began with bouncing around the floor on his knees, turned into to him slapping his arms and legs. When this wasn’t enough to satisfy him he began to take his anger out on walls and radiators, slamming them with the back of his hand. This was soon followed by slapping himself around the face, and then repeating all of these behaviours with his fist.
What I’m describing isn’t a moderate, light impact he’s making. When Jude is having a meltdown and the red mist has descended, there is no filter. He slaps and punches as hard as he can, even if it is against a wall. It’s as if he loses control of all sense of reality, and can’t figure out how to regulate himself again. I can’t quite understand how he hasn’t broken any bones yet other than that as well as being autistic he must also have some kind of X-men superpowers that mean his bones are indestructible.
The one saving grace so far is that he has never turned this behaviour onto his brother, even though his brother is a major trigger for these behaviours. When other children upset him his anger and frustration is reserved for him alone. Occasionally he has taken it out on us before, but only really if we are trying to prevent him from hitting himself.
Watching this happen you go through a whole range of emotions, and for a long time I struggled to make sense of it. All you want to do is stop him from hurting himself. If you can just stop him, hold him tight and show him how much you love him, then surely he won’t feel the need to keep doing this?
This natural reaction never worked, and most of the time it would just make him even more frustrated. During an hour or two of meltdowns, it’s hard to stay calm and controlled and think rationally, so you forget and try again. You’re desperate, you don’t know what to do.
Then you feel guilty. Guilty that you can’t figure out what it is that is making him so upset. Guilty that you haven’t found a solution to his problems. Guilty that you’re not a good enough or strong enough parent to be able to deal with this.
Sometimes you feel angry. When you wake up after 3 hours sleep night after night, and go through an hour or two of meltdown after meltdown it’s hard not to.
When it happens 6, 7, 8 hours a day, day after day, sometimes you can take it no longer and you snap. You shout at him, you try to stop him from hitting himself.
Maybe if you restrain him long enough he’ll run out of energy and just stop. But no, there’s always more energy, there’s always one more slap. Everything you’ve done managed somehow to make it worse, and even make him lose a little bit more trust in you.
Then the guilt kicks in again. What have you just done?
Jude needs a better parent than you, that’s why he’s doing this so much. Someone else would be able to get through to him, and stop him from feeling the need to do this.
And then, eventually, he stops. Within a few minutes, there’s a smile on his face again. The mist has disappeared, it’s as if nothing ever happened. If it wasn’t for the red, puffy face, and legs covered in bruises you would never know.
All you want to do as a parent is find a solution. You want your child to be happy. You want your child to never feel the need to hit themselves ever again. You want to stop living in fear of your child breaking a bone from slamming his hands against a radiator in anger.
So the issue of medication never went away. We discussed it further over the coming months, learning about other children who were on medication and the difference it had made to their lives. We were told it was a long process to be approved anyway so we may as well get it started.
Since that time we’ve done our own research, met with various behavioural analysts, child psychologists and doctors, and it’s taken nearly 2 years to be at a stage where we actually had a decision to make. The different departments and experts were all in agreement and ready to trial some medication, but were we ready to go ahead?
I had played it over again and again in my mind over the last 2 years, trying to weigh up the pros and cons.
As with any medication that can make a difference, there’s a whole range of possible side-effects to consider, such as
- Increased appetite and significant weight gain
- Increase in saliva and drooling
- Stomach problems
- Possible increased anxiety and stress
But we find ourselves at what feels like such a critical point, that the potential cons are still outweighed by the positive effects it could have.
By choosing not to give it a chance, aren’t I just being selfish to my own feelings rather than what could be right for Jude?
If Jude had some kind of disease or illness wouldn’t we give him whatever medicine he needed to make him better?
If he has a chemical imbalance within his mind causing this extreme anxiety shouldn’t we do everything we can to try and help him reduce this and improve his way of life?
People take medication for all kinds of neurological disorders, so shouldn’t we take a chance if it can help?
I fully accept that autism is a part of who Jude is, and this medicine is in no way a cure for that. I also know that his life can be so much better than it is right now. Watching him hurt himself every day, looking so lost, angry, and out of control, surely he deserves more than that? If medication can reduce the amount of anxiety he feels going about his day to day life, if it gives him that little bit of extra help he needs then surely it’s worth a shot?
When Jude is relaxed his world really opens up. He is so much more interactive, has a greater attention span, and I know his capacity to learn is so much bigger. If he can’t get past his anxiety, how can he be in the right frame of mind to learn, and develop the life skills he’s going to need?
So, 4 weeks ago, after much to-ing and fro-ing we took a leap of faith and went with the recommendations of the various experts.
We’ve begun a course of risperidone. The amounts are minuscule at the moment, the lowest possible dose to allow his body to adjust just in case there are any physical side effects.
And so far so good.
It’s still very early days, and there hasn’t been too much improvement as yet, but when his meltdowns happen he seems to snap out of them quicker than before. Jude’s sleeping has been more consistent, which has definitely had a positive effect on his mood.
There doesn’t seem to be any visual side effects, which hopefully means his body is reacting well to the medication, and there won’t be a problem in the future. He’s being closely monitored by the hospital, and any associated risks seem like they’re worth taking.
So, right now, I’m at peace with the decision we’ve made. I really hope it’s one that will have a positive impact on Jude’s life, enabling him to be less anxious and prone to meltdowns.
I know that this isn’t going to be a magic cure, and is just one part of a strategy to try and help Jude be more relaxed and content.
But hopefully, it’s one that helps makes a difference