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Parenting and chronic illness

homeparentingandme

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.

lucy wearing sunglasses sat in wheelchair with four year old son on her knee smiling at camera

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?

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Comments

ritaweaver

I can’t imagine how difficult things are for you but would like to share my experience as someone who has invisible disability! In the past 3 years I had to travel to London to visit hospital with my new born baby through to toddler! For many of my journeys I have suffered excruciating pain and not been able to sit on the train as my appointments took so long (up to 6 hours). That a lot of the time I would travel during rush hour!! Once all trains to my destination were cancelled and the only way to get there was to take a train to a nearby station to change. Unfortunately there were no lifts and I needed to change platforms I was relieved when a member of staff carried my prism for me but would only do so if I took baby out which as you can imagine added to my suffering!! I don’t go anywhere now without checking first so I get some of the challenges you face and appealed at the lack of provisions supplied to enable the disabled especially as the whole ethos to care in this country is to enable!!! But you know some of the best memories I’ve had with my children is packing some lunch and going to the park with plenty of bubbles to blow xx I feel guilt over rides our logic!! Children don’t want expensive days out they want time with mummy so as long as we continue to devote that to our children they will be happy xx P.S as they get older they tend to want more expensive things but I’m hoping by then more will be done to enable us xx

Pippa_Alumni

Thank you for sharing this @ritaweaver, really interesting to hear about your experiences! I'm sure you've seen them already but just in case- you may like to look into a 'please offer me a seat' badge.

feir

Luckily my children are all older, but when i first became disabled with pain everything went to pot here. my house was a dump, never had so many flies in my kitchen (i sleep in the kitchen on a chair), it was really depressing, then when my pain settled down i tried to go back to normal. Even just being stuck at home and doing housework caused me to become in too much pain again, and i was stuck downstairs on top of that. Mentally i am not doing great but when that lifts i do manage to get my kids into a routine where they do all the housework, i did feel guilty until i remembered it's all their own mess anyway, i do have some numbness and instability when mobile so have accidents and my kids clean that up automatically now, they also do what i'd consider caring acts for me like make a brew without me asking, My middle son has additional needs and when i first managed to get upstairs i saw his room was a tip, had to move him downstairs so i could keep a better eye on him, my daughter sleeps in the living room with him as they are quite close.

I encouraged my older kids to take my other son out as he can't go out on his own, they happily did that. I'm hoping to find the finances for a mobility scooter so that i am not trapped at home any more but i also worry about disabled access when i get one, and i worry that people will treat me different if i socialise with my children but most people treat me ok when i do get the chance to go out so i'm not too concerned about socialising. It will be nice to just go out as a family again.

We use a game site for family time now, it's completely free and has a good variety of quizzes that all of my kids enjoy playing and we can play them together (they are answering question type quizzes) or they can just sit with me and play them themselves. I am going to treat myself to giant bean bag at some point so i can get down on the floor and play other things with them. We also do normal family stuff like watch films and tv series and listen to music. Sometimes we chat on facebook even though we're in the same house as it saves on shouting upstairs for me also i take an interest in what they post on there but i was doing that anyway.

Although i see the down side to having a family while disabled (because our quality of life went down) i also see a plus in that my children have become more caring and empathetic and a little more independent. My children were already affectionate (i am too lol) but i'd say they are a little more so now.

My ex lives close by, we get on, and is a source of support also, he is there when i need to go to hospital so my family is looked after then and that is one less worry for emergencies. When i become too disabled to care for him at all my ex will be taking on my son with additional needs full time.

Sometimes i feel guilty that the roles have reversed somewhat in my family and that i am dependent on others to survive but i concentrate on how i am entitled to a life and my kids would rather i was here and don't seem to mind helping me at this time.