A few days ago, I had to pick up prescription refills for Casey and Rob. As I picked up the bags, the woman behind me made a comment about the number of prescriptions I had picked up. I was immediately irritated – not just because of her comment, but because she was right behind me, not behind the “privacy” line.
I managed to walk by and only glare at her. So many words were flying around my head, but I kept my mouth closed. But, it did remind me of a day a long time ago where a woman decided to tell me how terrible I was to “drug” my kids.
At that time, Casey was on medication, but not Rob. He was a teen before he needed the help, while she was in elementary school. Her outbursts were becoming out of control and self-injurious. Her doctor had given me medication to try as she was getting upset, but she blew up so quickly, I rarely had enough warning to get them into her.
So, after a particularly bad weekend, I called her doctor and basically said, “Drug her or me. I don’t care which.” I know it sounds terrible, but I was going on days with no sleep and constant screaming and head banging. I couldn’t handle it anymore. I needed sleep – she needed sleep. We needed to be able to cuddle together.
It wasn’t easy to make that decision. I had been putting it off for a while, but the breaking point came. It took a long time to find the right medication for her. Even now, I dread thinking about making any changes to either of the kids’ medications. Increasing the amounts can have drastic effects – good or bad – and I’m on edge whenever we need to do that.
It’s hard to tell whether a behavior is getting better because of the medication or maybe something else. Rob’s anxiety is especially hard to judge because so many things could be causing the anxiety – maybe he was just getting used to them. It’s a crazy ride – choosing autism medication.
Back to the day I thought about in the store. I was picking up Casey’s medicine and had all three kids with me. Casey was trying to get away from me – she was not happy to be in the store. Mandy was playing peek a boo with Rob to entertain him. As I turned away from the counter with her medicine, a woman approached me and asked about Casey.
I was honest and told her she had autism, as did my son. She nodded and I started to turn away. She shocked me when she said she hoped that medicine wasn’t for Casey. I just looked at her as she went on to tell me that medicating my child was dangerous and that I had no idea what the side effects or long term damage might be. (as if I hadn’t considered that!)
I told her as politely as I could that what I did with my child was between me, my child and our doctors. She then told me that giving her medicine to make my life easier was a terrible way to be mom. By now, I am livid and praying that I don’t lose my temper in front of the kids and in the middle of the store. I started walking away and she actually got in front of me.
So I politely told her to get the hell out of my way. She stood right in front of me, still telling me how terrible it was that I gave Casey “poisons” that could ruin her life. I pushed my cart right at her and I’m sure my face clearly showed my anger. I was ready to hit her with the cart to shut her up. Luckily, she must have realized she went too far and stepped out of the way.
I still find it unbelievable that people think they have the right to comment on what medications I give the kids. I discuss medicines at length with their doctor and I do research and talk to pharmacists for their opinion and what to watch for. I’m not being irresponsible. I don’t like that they need so much autism medication, but they do.
I’ve wondered whether the kids notice a difference in themselves with their medications. Last year, I realized that Casey wants hers. She knows she feels better with it and if I don’t have it ready for her to take, she will ask me for it. Rob has only recently asked for his. Whether it is a habit for him or he feels better, I don’t know, but he wants it, too.
If you are trying to decide about autism medications, talk to your child’s doctor. If you still have questions, ask for a second opinion. Ask your doctor if they will have someone who uses that medicine to call you (They can’t give you that information as it violates privacy laws, but they can ask someone if they would be willing to talk to you.)
Talk to other parents whose child has autism. See how they feel about the medications their child is taking. Ask about side effects (but remember – medicines react differently for everyone, so take all advice with a grain of salt.)
Do your research. This is a huge decision for you and not an easy one to make. Maybe you will have a breaking point like I did. Or you can think of it this way – your child’s brain doesn’t work like a “typical” brain and needs help. If your child was diabetic, you wouldn’t think twice about giving them insulin. It’s just something their body needs.
Never feel like a failure for giving your child medication. By the time you have reached this point, I’m sure you have tried everything else you could think of – just like I did. Don’t let anyone make you feel guilty for your choices. Love your child and do what you feel is best for them. That’s all any of us can do.