One Day

I often wonder to myself why I am so tired. Sounds a bit silly when you are a parent carer but I think we can become used to our situations and they soon become the norm for us. When I took a quiet walk on my own recently on holiday in Cornwall after a ‘bit of a day’, I played back to myself what we’d dealt with. Here’s what happened in one day:

• 6am - my daughter wakes for the day. Raring to go. Gets downstairs and starts signing and saying ‘car’. She wants to go out. We have to keep her amused till her bedtime at 8.30pm ish, we cannot use a car ‘unit’ now.

• She screams ‘aaaahhhhh’ very loudly intermittently for the next few hours, bringing us her shoes to tell us she wants to go out. I feel sad for her, and feel bad I am not taking her out. The noise is distressing for us all.

• Bounces on bed, bangs head on sloping loft ceiling. Curious about sensation, does it again.

• We decide to drive to a playground. Getting her dressed is easy, she is motivated to go and knows getting dressed is part of that. Suncream is not. It’s like getting suncream on a crocodile. She yells throughout the application.

• In car, tries to open back door. Thankfully child lock is on (unlike in another car the other day…).

• Arrive at park, swings for 4 minutes. Tries zipwire but keeps letting go. Sun blazes down on us. We find a shady spot for snack and coax her in to the cool.

• Home for lunch. She wants to eat somewhere other than the table so violently grabs plate and scatters food (mayo and Boursin included) over the holiday cottage sofa she has chosen to eat on.

Beach time. Reapply suncream (thrashing crocodile style) and head to beach.

• On our way to the beach we pass a children’s brass band. Our daughter desperately wants to get out of her buggy to dance. Live street music is one of her very favourite things.

We hesitate as we know she would not be content watching from a few metres away and would want to get ‘involved’. We do not want to put that pressure / awkwardness on the children in the band.

We eventually let her out of her buggy but try to block her from getting too close. We are then approached by a lady from the band. We bristle, worried about what she is going to say. She asks us ‘what does she want?’. We explain and she tells us to feel free to let her get up close and do what she wants to do; ‘the children will be fine’ she said. So we do.

The children are awesome. They do not flinch when she goes right up to their instruments. Someone brings her over a tambourine. She dances to the music and, (in my eyes) only enhanced the performance. She has excellent moves. I cry happy tears.

• We settle on the beach but she spots the dreaded food hatch.

She makes a break for it and runs to the hatch (we once made the short sighted mistake of buying food from here). She marches in front of the people gathered there, folds her arms on the counter, and waits. As food comes out for others she tries to grab it. She keeps signing ‘food’ to us. Totally understandably. We have no way of communicating to her that we cannot buy food from there and we are eating at home.

We could not just buy the food (we very much considered it) as we have to pass that hatch every day on the beach and we come to this place every year. It would only exacerbate the problem. We repeatedly try to guide her away and she shouts extremely loudly ‘aaahhhhh’, turning heads.

She is 10 and super strong and wriggly. We try to coax her back to the beach with a bucket and spade and promises of ‘swimming’. We are stuck. People are staring, the lady from the hatch is glaring at us. Our daughter tries to grab a man’s food. He shouts ‘F**k’. We apologise and feel increasingly distressed. My heart is pounding so hard and I feel so exposed and humiliated. Eventually we manage to coax her down to the beach with buckets. We were in that situation for 30 minutes.

It was the second time it happened that holiday.

• She wants to go into the sea but will not allow us to put her wetsuit or life jacket on. Both essential. She thrashes around as we try to get her in her wetsuit. Crocodiles spring to mind again.

• She goes into the sea with us all, bobbing up and down like an elated seal as her little feet lift off the sand. She shrieks with joy. It is glorious. I feel so happy.

• We exit the water and try to remove her wetsuit and get her into her buggy which we then try to drag across the sand to propel her pass the notorious food hatch. We manage this over the course of 30 adrenaline-fuelled minutes. Lots of shouts of ‘go, go, go!’

• Push buggy and all equipment up characteristically steep Cornish hill.

• Get in. There is sand everywhere. We shut the door and sigh loudly, she is contained and safe.

• Big clear up while managing meds, ketogenic meal and showers.

• 9.15pm – she goes to sleep.

• 10.15pm – she has a tonic clonic seizure – not unusual but always horrible.

• 11pm - We go to bed.

It’s not just the physicality of the challenges that cause exhaustion; it’s the intense emotional extremes. That’s why we, and most parent carers I know are exhausted.

We have a social care review looming and I feel panicky about how we can possibly convey the impact of this to someone who is not living it. No matter what courses they may have completed.

The brilliant BBC Series There She Goes captures so much of this perfectly. I would love for every professional assessing support needs for families with disabled children to watch this.
Because unless you live this, you really cannot imagine it.