Published on 12, July, 2020
Hello I have a 5.5 year old daughter and a 3.5 year old son. My daughter has absence-epilepsy and autism, she’s medicated for the epilepsy which has stopped the seizures which is great but the medication adds to mood swings, aggression and disrupted sleep patterns, she typically wakes between 4-5am. She is now on the Sen register and has been unofficially diagnosed, which is some relief as for a few years there was just so much confusion and judgement around her behaviour. Unfortunately my father in his late 70’s and lives too far away to help, to be honest I’m not sure he could cope. My partner’s parents help occasionally by taking our daughter out for an afternoon once every two to three months, which is nowhere near enough to have any meaningful impact.
My partner and I work full time jobs and split all childcare between us, it’s hard and we have very little time to ourselves but we love our kids to bits and ultimately value the opportunity to be with them as much as we are. That said the summer holidays are really taking their toll, trying to keep the children entertained for the better part of seven weeks without losing our minds is challenging to say the least. Can anyone offer any advice or empathy, I’m feeling a little fatigued here.
All the best
Rob
My brother has epilepsy and used to have seizures, the solution to dealing with epilepsy is a lot like the solution to dealing with seizures, you’ve just got to make the environment as safe as possible and observe the symptoms if you can as you can..
Hopefully as your son grows up he’ll do as I did and make his sibling feel normal and involved, it’s a great weight off of the parents shoulders too, because observing his normalising of your daughter will help you relax a-little and gain some more objectivity.
Make sure she stays on her meds, make sure the doctors don’t try to mess too-much, as it’s you will be the one who knows her symptoms best with various dosages. Make sure she’s well-hydrated and doesn’t observe harsh-lighting too-much, which can be more-harsh in darkness. Moving too-quickly after long periods of sitting can trigger bodily pressure-changes and head-rush, as does high-stress, which I have observed prior to my brother having seizures (thankfully very-rarely, but not rare enough, in my opinion).
I can’t really think of more storied-experiences I’ve had.. I hope this is reassuring though..
Thank you, I appreciate you sharing your experience.