Latest blog The summer holidays is ready to be read online here https://www.fireflyfriends.com/uk/blog/the-summer-holidays/
Send coffee. Send chocolate. Send help (Insert other generic mum jokes here).
I would have used a lovely picture of Amy ready for her last day of school for this blog.
However, I cannot because in spite of my constant effort to be organised, I got my days mixed up, misread the term time calendar, and actually thought tomorrow was her last day.
So as I type this I ache to my core. I have somehow managed to condense almost two days of child free errands into one day.
I have feverishly prepped meds and feeds, I have re-organised Amy’s room, I have returned phone calls that I missed whilst I was at the gym earlier, I have walked the dog, amongst many other tasks.
Excuse of course the messy bedroom pictured, I am sure we would all have much preferred the beautiful last day of school photo that will never happen now!
I don’t feel the dread many people feel in relation to school holidays.
I look forward to Amy being around lots more and seeing what adventures we can get up to. But I do dread the exhaustion that will come with it.
I have been making a more conscious effort to get her in her walking frame more, and to hoist her more.
It’s all quite time-consuming but I know it’s the right thing to do.
The easiest thing isn’t always the right thing.
If Amy could have her way, we would spend the whole day walking (and she would have her music on the whole time or cue frantic angry hair pulling.)
Much as I love trying to get fit and getting out into nature, it’s physically very demanding.
This year more than ever, now that Amy is 8, I find myself comparing her childhood to my own.
It’s not necessarily a good thing to do, but I think it’s natural.
It makes me realise just how much additional planning goes into things and also how non-inclusive so much of it is.
Almost every holiday club or activity day seems to be geared towards able-bodied/neurotypical children.
It’s just another thing we have to miss out on. We don't get a choice. Every time an ad comes up on my social media for it I feel resentment knowing that there isn’t any point even enquiring.
Why is it that people who need the help the most are the ones left without? Why don’t our children get the same opportunities as their peers?
I have mentioned to people before how in the school holidays we struggle to get basic day to day jobs done.
Those not in our situation have sometimes retorted “oh well, jobs can wait! There’s always tomorrow!”
But sadly no. Constant daily soiled bedding, management of tube sites/maintaining hygiene, preparing meds, medical interventions etc don’t all take a day off.
Sure, some of those things probably could wait a little, but realistically no. Our house has many 100s of invisible cogs turning. If one cog gets jammed then everything comes to a halt, or worse.
Unfortunately for us, independent play is not possible. My daughter’s level of enjoyment and activity is dictated solely around what those around her do for her.
It’s a lot of pressure but I do feel an almost constant guilt that what I am doing isn’t enough.
I also feel bad that sometimes I really would just like to rest.
As a child I was great at independent play, I was (and still am) quite introverted and would happily draw all day, read, or colour in. I would watch films (sometimes the same video over and over!) and whilst I know I will have been hard work for those caring for me, I know that a lot of the time I was quite easy in some respects.
So really comparing doesn’t work. Amy dislikes crafts, doesn’t enjoy being read to, and isn’t really interested in teddies.
Even if she was, she would still need someone there to facilitate it all. I worry sometimes she must be frustrated, or bored with me.
It’s a constant journey mentally.
Some of our days out go spectacularly well, others a disaster. I guess it’s the same for any family.
But I do find that sometimes if Amy really dislikes something, it puts me off going again.
For example, the last time we went to an aquarium she had a particularly bad episode of irritability.
I am not sure if it was a sensory issue as the place was busy, that she was in pain, or that she was bored.
Whatever was going on, she was inconsolable.
It was a scramble to get her back out of the building as it was so busy. It was disheartening because once again she had had a bad time doing something everyone around her loved.
The same happens at the cinema and in certain coffee shops. I know that part of it is lighting and space.
I have noticed over the years and can now enter somewhere and know whether or not she is likely to become distressed.
Getting the balance between trying new things and sticking to what we know is hard.
We want to broaden Amy’s horizons and give her every chance to enjoy so many things.
Equally, we have to conserve energy and carefully choose what to do.
Otherwise, we risk causing all of us mental health issues, wasting money, petrol and energy.
Sometimes she will surprise us and on the day thoroughly enjoy something new - or she may enjoy something she usually dislikes whilst with carers.
It seems many stars have to align for the best days… lack of pain, not too tired, not too many seizures, correct activity at the right time of day, suitable music/toys etc.
This year I am compiling a list of things to do, and places we would like to go.
Obviously, this is always subject to change. Lack of sleep, illness, mood, many things could affect this. Then of course, fuel costs, prices for things, changing facilities, weather and so on too.
Amy likes lots of position changes and activity changes.
This can all become very tiring, but I am hoping to try to eat sensibly, stay hydrated, and as rested as can be so that I can be the mum she needs me to be.
It is rare for her to want a “lazy day”, there is never an option to just pop a film on etc and I have accepted this.
What are you doing with your school holidays? Any tips to get through?
Wishing everyone all the best.
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