A Little Bit of Everything

Most days I feel like a doctor; with twelve years of education and counting.

 

When the pharmacists know you and your wife on a first-name basis, you know it’s bad. From early on the medications started for each kid, and every year they get a little higher dose and a few more additions. At my last count, we were up to seven different medications for Ashton and eight different medications for Trystan given numerous times per day. 

 

Our counters in the house look like our own pharmacy and we have numerous pages of guidance on the walls for when and what to give. It actually scares me at times because I know one day somebody will miss or give the wrong medication. It is bound to happen at this point.

 

It is almost like quicksand. It starts small with a behaviour medication to keep the highs and lows at a reasonable level. But this increases anxiety, so you need to add anti-anxiety medication to the mix to keep them from being scared of people and places. Oh, but this affects their sleep so you need to add a sleep aid to make sure they aren’t overtired because that can lead to seizures, which includes another two medications to keep at bay. As I go further down the list, I actually laugh a bit because this was exactly how it happened. One after another for the last decade.

 

The worst was the behaviour medications. With Ashton, they levelled him off relatively quickly, but Trystan had some pretty hard side effects right from the start. I still remember the day I came home from work, and he cowered in the corner of the kitchen too scared to come within ten feet of me. Back then I wanted to cry at how bad I felt for him, but now we just know to lower the dose or increase a different medication to offset. Then, as they get larger and put on more weight, the doses need to move anyway so we have to start the balancing act over again.

 

With Trystan, this is the source of many of our behaviour medications. He is probably the happiest child you will ever meet and also his cuteness gets him out of a lot of trouble. But his stims are non-stop, 24 hours a day, to the point where his fingers bleed from hitting them against small objects so repetitively. A stim is a repetitive motor movement, use of an object, or speech; often children with autism stim due to overstimulation, understimulation, pain reduction, management of emotions, and self-soothing.

 

This is the reason we started the behaviour medications; it had nothing to do with negative or aggressive mannerisms, it was to slow him down. He still stims all day, but it has stopped him running around the house like he’s on fire. Baby steps.

 

The other medications that you will learn to love are sleep aids. As mentioned previously, there were periods where we averaged four to five hours of sleep per night for months on end. Once the epilepsy and seizures started, we needed to control the sleep as tiredness is a significant trigger. This led us down the road of heavier sleeping medications. Take it from me, don’t wait. Our kids are happier for it, and it is probably one of the main reasons our marriage continues to move forward at this point. Sleep is not to be taken lightly.

 

Today, we give both kids melatonin and sleep medications at 7:45 each night, and at 8:15 we are on the couch recovering from the day. The first few days, it was funny. Ashton went from wide awake to sleeping on the floor with an iPad on his face in a matter of seconds (not minutes). Now we at least get him tucked in before the crash. Trystan actually shows us to his room when he is ready. Again, the medications we learned to love.

 

The last thing to note is that children with autism in most instances do not like medications. Our kids will not swallow pills, or take a tablespoon down the hatch. We had to become smart, almost like “Breaking Bad” for those who get the reference. All of our pills are crushed and mixed in liquids, and all our other medications are flavoured and loaded into syringes to shoot down the throat and chase with drinks. It took years to get to this point, anything further is just a bonus. I would tell you how much we spend on flavouring medications per year, but honestly, those bills make me shiver. 

 

Everything we give our children is required – some will say they don’t believe in certain medications and that we should let our children act however they act. For us, having our children be able to participate in society, sit at a desk during reading time at school, or be able to sit still long enough for a picture or a meal is important. It is not just about making our lives better; it is about providing them a chance. Because in the end that is what all parents want, whatever is best for their children. 

 

And sleep; we all want to sleep.