Parenting and chronic illness
Hey, I'm Lucy, & I'm chronically ill. Aside from the full-time commitment my collection of illnesses takes, I'm also mum to an energetic, cheeky four year old. You can find a bit more about me on my blog: Home, Parenting and ME.
People who either aren't disabled, or are disabled but don't have children, often tell me they don't know how I do it. I'll be honest, some days I don't know how I do it either, but those days are generally few & far between.
Having C gives me a purpose in life that I wouldn't otherwise have, he gives me a need to keep on pushing through & a reason to get out of bed on the bad days. He is my greatest accomplishment; being a mum is my favourite thing in the world.
That being said, with the summer holidays fast approaching, I definitely am panicking a little.
The key for my health/stability is routine, which, to a certain extent, goes out the window during the summer break. Instead, all my energy, & then some, is used on ensuring C is entertained. Mum guilt is one thing, disabled mum guilt is another level!
I try to limit C’s screen time, but given my circumstances, it isn’t always as limited as I’d like. Sometimes I can't physically move, and screen time for C means I can rest, whilst still spending time with him. I feel guilty that I can’t accompany him on school trips... I wish I could run around the park with him... I’d love to push him on the swing when he asks; the list of disabled mum guilt goes on.
I personally feel there isn't enough support for disabled parents, & for young children of disabled parents.
Last summer holidays I became quite unwell & my occupational therapist made some calls to see what support we could get... Pretty much nothing! I did make use of some groups at the local children's centre, but that was only possible on the days I could physically take C to them myself. So basically, the days I could hardly function, were the days he had no escape, from the reality of a situation he didn't choose.
I'm currently trying to plan for this summer, with so far, not much luck... It's bittersweet because whilst I LOVE spending time with my little boy, he’s your typical hyperactive 4 year old, who doesn't do well stuck in the house, being looked after by someone with very limited energy. 6 weeks is a long time; even one day a week respite would make the world of difference, as I'm sure most of you would agree.
One issue I keep facing is finding an activity that sounds perfect, to then go on & read no disabled access. My child has to miss out because his assisting parent has a disability?! We also have to rely on public transport because concentration & sensory issues prevent me from driving, but getting my mobility scooter on & off buses is difficult. Plus, dropped kerbs seem particularly sparse in my area. I imagine many of you can relate?!
Everything a disabled parent plans, requires thought processes that may not even occur to others.
For example, a ‘spontaneous’ trip to the park turns into something that requires forward planning- from small details like charging my scooter overnight, or planning an accessible route that my energy levels can tolerate, to ensuring the outing on the whole won’t cause me to crash. As well as the regular parental concerns like food, toilets etc.
The joys of parenting however, far outweigh the additional struggles for me.
What’s something that you do, or have in place, to ensure a smooth ride on this crazy; tiring; but wonderful journey?