Looking back, one could say my life has mainly revolved around medication.
Age 6. “If Mommy ever tries to accidentally give you Alyssa’s pills, this is one time you can say no. Always, always say no.”
Age 12. Friend: “Why does Alyssa have to take so many medications?” Me: “Well, she has Lennox-Gaustut syndrome, which means that she has a lot of seizures. If she doesn’t take her medications, she’ll get worse . So far, she has taken Klonopin, Dylantin, Phenobarbital, Depokote, and Lamictal. Do you know what some of the side effects are for each of those?”
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What can I say? My parents were trying everything possible to control Alyssa’s seizures and as the older sister, I was along for the ride. I had to get some bragging rights from all this bizarre knowledge!
Age 16. Lesson learned: do not ever go anywhere without the medications. Even if you’re just running errands or going on a day trip, if you don’t have them, you will regret it.
Age 25. Having to put work calls on hold when Alyssa starts unexpectedly throwing up due to doctors messing up medication amounts.
Growing up with a special needs sibling in the house means there is always something new and interesting happening… and something the rest of the world has probably never considered. Medications are one of those things that I think my parents did a fantastic job informing the rest of us kids about. Here are a few things my parents did that may help other parents out there.
1. Be upfront. Whether your other children are toddlers or teenagers, explain to them what is happening. Depending on their age, let them know what medications your special need child has to take and prepare them for the side effects. Your instinct may be to shelter them from what is happening, but kids know when something is up. It is far better to give them the facts than let their imaginations run wild with the worst possible scenarios.
So prepare them for the times when their sibling experiences bad side effects. Reassure them that everything will be okay. Let them know that you have questions too and provide an environment where questions are welcomed and encouraged. Even if you don’t have all the answers, they will be relieved to know that the whole family is learning together.
2. Give your other children permission to say no. I think this was one of the most important things my mom ever did. With three kids under the age of three, there were times when my mom would inadvertently try to pop pills into the wrong kids mouth. Very early in my life, I remember her sitting me down and explaining that this was one instance where it was okay–in fact, incredibly important!–to “tell Mommy no.” As a result, there was never an emergency situation with the wrong child taking the wrong medications.
3. Always be prepared. For our family, this means never leaving the house without medications and taking twice the amount we think we’ll need when we go on vacation. You never know when your outing might run late, you decide to spend a couple extra days with relatives, or (at least in Colorado) when you’ll be stranded somewhere overnight due to a blizzard! And trust me when I say that leaving a party early or having to buy extra medications that are not covered by insurance is not the most fun you’ll ever have.
What have you found to work best when it comes to handling your child’s/siblings medications?