As parents, the question of whether to medicate or not to medicate our special needs kids, has always been an important one for us.
We’ve always seen medication as a ‘last resort’, of sorts. Something that was always an option, but one we didn’t want to consider unless traditional therapies, strategies and tools failed to help.
Next month marks 10 years since Gilbert received his autism diagnosis. 10 years of therapies, strategies and tools. 10 years of learning, loving and leaning. 10 years of struggle, triumphs and toil.
We’ve considered the thorny issue of medication for nearly all of those 10 years. However, we never took up the option, the one of ‘last resort’.
Our Medication Story
Last week, we visited a psychiatrist with our son, after months, (okay, years), of escalating anxiety. We’ve tried every therapy, strategy and tool we could find. We adjusted our own behaviours. We gave him space and understanding. We did everything we could to help. But none of it was enough.
It’s painful watching your child struggle with fears, thoughts and feelings you can’t understand.
It’s tough trying to comfort them when there’s no comfort you can provide.
It’s exhausting continually dealing with the fallout of their anxiety and managing the needs of the entire family.
So, after much deliberation, we found ourselves in unfamiliar territory last week, as we waited to see the psychiatrist. I had no idea what to expect and neither did my husband. There wasn’t a lot we could do to comfort Gilbert, as he tagged along as a very reluctant participant, worried about what lay ahead.
The psychiatrist instantly set me at ease by talking directly to Gilbert and asking his permission to talk to us. His respect for my son reassured me he was there to help. After looking through years of reports and records, and listening to our concerns about day-to-day life, he recommended trialling medication to control Gilbert’s anxiety.
I was relieved, in a way. It had been clear to us for some time that we had to do something else, try something new. The psychiatrist echoed our thoughts and validated our concerns. During the session he witnessed Gilbert’s anxious behaviour and it was his opinion that we needed to get on top of the anxiety to make any further progress.
While Gilbert liked the psychiatrist, he was unimpressed about the idea of medication. He was concerned he’d overdose or become addicted. He was scared of the thought of taking tablets (something he’d never done before). Most importantly, he didn’t see the need for medication – he wasn’t sick and he didn’t have a disease!
We needed to address his very valid concerns and help him see that trialling medication was the right move. It was important that he see it may not be the right medication or the right approach, but we needed to give it a shot, just to make sure.
Over the next few days we talked about the medication, told him about the medication we were taking ourselves, discussed the extremely low risk of addiction and overdose and showed him what the tablets looked like. We explained why the psychiatrist had prescribed them to him and went into the workings of the brain and what the medication would do to help him better manage his thoughts, feelings and fears.
Our approach worked and he finally agreed to try the medication.
On Thursday night, he took his first tablet, a night-time tablet to help him sleep. For a moment, we thought he’d somehow tricked us, as the tablet went down unexpectedly easily. We checked his mouth, checked his hands and the floor around him. With no sign of it, we hoped it had gone down. It did. He was fast asleep before 9.30pm, something we haven’t witnessed in many years.
He woke up happy, after having the best sleep he’s had in years. He even told us that, which was a bonus in itself! He further surprised us by agreeing to use his own money to pay for snacks at a school outing, something he’s always fought us over. Everything was easy on Friday morning, a welcome change for the whole family.
After another successful night on Friday, we decided to start his day time medication on the weekend so we could monitor his behaviour and deal with any side effects at home. So far, there have been no side effects and Gilbert has been happy to take his “street light” tablet (it’s long and thin, like a street light) each morning.
The effects on his behaviour are already becoming clear. He has been less stressed and better able to use coping strategies to deal with disappointment. He’s been more social with us at home and generally happier. He rated Saturday as the best day of the week (his first full day of day and night-time medication). It’s been a positive start – I just hope it continues that way!
It’s still early days, but Nathan and I are amazed at his progress. It’s clear he’s been battling debilitating anxiety for a long time. To see some of the weight lifted from him, and see him emerging from himself, is a relief.
To be honest though, we’re also upset that we didn’t take this step sooner. It was our fears and assumptions that stopped us from looking into medication as a serious option from the start. We were determined to try everything else. We could have made life easier for him sooner, had we been able to put our own emotions to the side. That has been a bitter pill to swallow (pun intended).
However, there’s no point in dwelling on the past. We made the best decisions we could at the time and we’re committed to supporting him into the future, whether that future includes medication or not.
That’s all we can do as parents – make decisions based on the best available information at the time. Hindsight can be a valuable thing, but only if you don’t get caught up in regret for opportunities lost.
Should You Consider Medication for Your Special Needs Child?
In the end, that’s a question only you can answer – it depends on you and your child. However, here are some points to help you in your decision.
Medication is not for everyone
You only need to go on any online parent forum to find evidence of that. The same medication will not have the same effect in every person and side effects can vary too. It’s unfortunately a case of trial and error, which can strike fear into every parent’s heart. It’s a risk that might not pay off and that can be hard to accept (I know it was for us). In the end, it’s all about whether the risks outweigh the potential benefits and only you and your child can make that call.
Medication can’t fix everything
Medication can assist with a variety of symptoms and conditions but it’s important to understand it can’t fix everything. Medication corrects chemical imbalances in the brain and is commonly used in cases of anxiety, attention issues, depression, mood disorders and other similar conditions. It’s not a magic bullet and it won’t magically fix every issue you and your child face.
Medication takes time to work
It can take time for medication to take full effect. In our case, we’ve been warned that Gilbert’s anxiety could get worse before it gets better. We know we may still need to tweak the type of medication, as well as dosage, in the months to come. It can be hard to wait for results and even harder to work through the inital bumps in the road. Again, it’s a case of weighing up the potential long term benefits with the immediate challenges ahead.
Medication is not the only answer
Personally, I don’t believe it should be the first tool used in the toolbox but it can enhance the effectiveness of other tools. We’re already seeing that with Gilbert and his greater ability to problem solve now his anxiety is being better managed. Only a few days in and he’s finally using the strategies we’ve spent years teaching him. Medication alone would not have brought about this result, so quickly.
Medication is not to be feared
I know we feared medication for a long time. We worried about side effects and long-term risks and whether Gilbert would even try to take medication at all. However, medication is not to be feared. If medication is recommended for your child, do your own research so you understand what it is, what it’s being prescribed for, what it’s supposed to do and any potential side effects. Be informed but don’t be scared.
Everyone needs to be on board
This can be a challenge, particularly if your child is younger, but it’s important your child is on board with taking medication. In our case, we needed to wait until our son was ready to give it a go himself before starting as we would have been doomed to fail. Our kids are individuals and we need to respect their concerns, fears and objections. Talk to them, discuss their concerns and help them work through them.
It’s taken us 10 years to consider medication for our son and, yes, a part of me wishes we’d come to this point sooner. However, taking our time has allowed us to teach our son strategies to deal with everyday life. It’s given us the opportunity to become more educated about our options. Most importantly, it’s allowed Gilbert to be in the position where he can make an informed choice.
Medication may not be for everyone but it’s an option that all special needs parents should consider, especially in cases where traditional therapies and strategies are no longer having the desired effect.
What’s your experience with medication for your special needs child? Has it been good, bad or a bit of both?
Would you like more support as a special needs parent?
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I can understand how it would be such a different decision, with so many aspects to weigh up. Such a tricky area!
This was even trickier than working out which school setting would be best (and that was another decision that took much energy, time and debate!)
I’m so glad you are seeing such positive changes, that must be such a huge change for everyone!
We are coming up to a year of medication for our teen and despite it making a huge positive difference for us, I still sometimes catch myself wondering if we did the right thing… even though I know we did! I think that just goes to show that these decisions are never easy, and that they are never made lightly, and that is what quiets my fears, because I know that we are constantly assessing and questioning and checking to make sure we are doing the best we can.
I needed to hear this Kate. While it’s all amazing right now, it could change at any moment and I know I’d instantly worry and question my decision. We can only do the best we can with the information we have at the time. It’s good to know you are also on this rollercoaster ride with me!
The tweaking, side effects and getting worse before better would all have made me hesitate so much. But I think it sounds like you’d given non medical strategies a long, consistent time to see if they worked. Now there’s another tool, as you say. I hope it keeps working.
So do I! So far so good though, so here’s hoping!
Wow those are some really valid points. Thank you for sharing your personal experience and decision-making. Medication isn’t a band-aid or right for everyone. I’m a teacher and have met so many parents struggling with this decision.
It’s a decision so many special needs parents need to make. I’d heard many horror stories from other families and I confess that did factor into our decision making (a big reason why we deliberated on this for 10 years). It’s early days but everything looks promising so far (and so much calmer and happier too!)
It is so encouraging to read Gilberts experience with medication. It sounds like it has done the world of good for everybody, not just him. We only want the best for our kids, it is hard to make some decisions on their behalf without knowing what the outcome will be. You are doing an amazing job x
It has definitely been one of the hardest decisions of my life to make, but so far it’s paid off. The best bit is seeing his self-esteem soar and his self-belief and confidence grow – I’m so very proud of his growth so far.
Oh wow. What a good news story…and yes I know it is early days (and nights) but you sound like it might be an option that works. And I can only imagine that your son will realise the benefits too. I liked the balance in this post and the fact that the psychiatrist respectfully sought your son’s permission.
Here’s to more wins!
Thank you for linking up for #lifethisweek 9/52. Next week’s optional prompt is Share Your Snaps 2.
It is a good news story and it keeps going on – this last week has been the most calm and organised we’ve ever been, as an entire family. It’s quite frightening to see just how much of an effect anxiety can have on an individual. I’m so relieved we’ve been able to help Gilbert find a better way to live – let’s just hope it all continues well for him and for us!
Glad to read that you’ve found a solution for your son which offer some relief for him and you both.
It is a real relief for all of us. I’m still in awe of the change that has come about in less than a week. Fingers crossed it continues!
I’m glad the medication has helped. These things are really tricky to weigh up and we usually end up feeling guilty either way even though we shouldn’t!
I know! It really shouldn’t be that way but it seems to always be the way!
We didn’t go into medication for our lads lightly. In the end one is on meds and the other not. It’s transformed some of his life and that’s worth it for us. Thanks so much for linking to #spectrumsunday!
It’s definitely an individual decision and one that’s not right in every situation. I’m glad that it’s made a positive difference for your boy!