I have two beautiful children. They are the sunshine in my life. They make me laugh with their humour, quick wit and love for puns. They make me cry when they thoughtfully draw a beautiful picture just for me or leave an I love you note. They make my heart fill with pride when they reach for the stars and try their best. They are my beautiful children who I love dearly.
My beautiful children live with refractory epilepsy and are on regular multiple medications. They also require emergency medications that belong to the benzodiazepine family. They are hard core drugs. Drugs that many adults become addicted to and reliant on. Drugs that numb the brain. Drugs that my children have paradoxical reactions to. Drugs that change who they are, send them crazy and make them forget.
The regular medications my children take change who they are. At times they over shadow the beautiful, kind, smart, polite, caring, funny, respectful children that I know they are. We get glimpses of the ‘real’ children and my heart fills with hope. Hope they will always remain in there and when the haze of the drugs is one day lifted, their true self will run free.
There are many days that my heart sinks and fills with sorrow. Watching a new medication change their personality, make them wobbly, aggressive, unable to concentrate or find their words. Watching their bodies seizing and them unconscious. Watching their limbs jerking and eyes rolling back. Watching their mouths and face twitch. Watching the fear on their face as they know the seizures are coming and unable to stop them. Watching their despair as they know they will soon be vulnerable and at the mercy of the people around them. Watching the emergency meds burn, distress them and make them hallucinate. Watching the emergency meds turn them aggressive and violent towards others. It’s not easy to watch, it’s certainly not easy on them.
There is one thing that makes my heart sink and feel like lead. It’s the dread, the sadness, the frustration, the sorrow I feel when my children act in a certain way beyond their control and they are judged. Judged by both people who know them and those that don’t. Judged as being rude, naughty, annoying, frustrating, obnoxious, a bad kid.
This is what I want you to know.
When he screams out ‘I’m bored’, he is having trouble concentrating and being inside and is feeling trapped. Please don’t take it personally or judge him.
When he growls at you, he doesn’t know how to respond, is feeling frustrated or trapped. Please don’t take it personally or judge him.
When he climbs on the furniture or paces the room, he needs vestibular movement or proprioceptive feedback. Please don’t judge him.
When he climbs on furniture, crawls around the room, touches everything and won’t talk to you, there is some sort of seizure activity going on in his head. Please don’t judge him.
When you say no and he throws a tantrum better than any two year old could, throws things, screams in rage or thumps the ground – he has lost all ability to reason. Please don’t judge him.
When the environment is noisy and too busy and he runs from the building and hides. Please don’t judge him.
When he fidgets, touches things and is moving constantly, his brain will not let him be still. Please don’t judge him.
When she won’t tell you she is not feeling well and is going to have a seizure. Please don’t take it personally or judge her.
When she won’t follow your instructions or speak to you, she is probably unable to as she has seizure activity happening. Please don’t take it personally or judge her.
When she starts biting, hitting, kicking and screaming she hates you, she’s probably had midaz and is reacting to it. Please don’t take it personally or judge her.
When she has her fingers in her mouth and is ignoring you, she’s most likely having a seizure. Please don’t take it personally or judge her.
When he or she sits in a trolley at the shop and is crying, sleeping or tantruming. They have probably had a seizure, about to have a seizure or have had rescue meds. Please don’t judge him or her.
When he or she is being carried around in public, they’re probably fatigued from drugs or seizures. Please don’t judge him or her.
When we park in a disabled car park (with a permit) and all four people get out and don’t look disabled, there’s a reason they have the permit. Please don’t judge us.
I could keep writing this list and I know other parents with children on multiple medications or other disabilities could add a whole lot more. The lists aren’t excuses for behaviour, they are reasons. Reasons that when dealing with them, require a modified way of responding to. They require understanding.
My children are just children. They are children who are dealing with a whole lot. They are children who have their brains affected by hard core medications with horrific side effects. They are children who just want to be understood. Children who when you think about what they deal with, might be better understood. Please walk a moment in their shoes and think how you would cope. Would you cope as well as they do?
Please be kind and try to understand. Epilepsy is not just seizures.
Ragdoll Mumma Angela xo