Holidays (or not)

Sharon Foxwell by Sharon Foxwell Additional Needs

Sharon Foxwell

Sharon Foxwell

I'm Sharon, I have a daughter with epilepsy and a severe learning disability. I blog about our livewire life.

Holidays (or not)

School holidays are different when you have a disabled child. I know it’s not just me that has to muster a tight smiled response as other parents are saying things like “only a few more days to go and we can chill” / “no more school runs for a bit” or even just, “almost the weekend” as I am gradually being flooded with a sense of dread and predicted exhaustion.

While I love spending time with my family, school holidays are HARD. One of the things I feel that is most misunderstood by those not in this world is that, in many cases, when you have a disabled child, especially in specialist provision, school is not just school.

It is a place of care and respite; it is the only thing that enables us to function day to day. My daughter is cared for beautifully by an awesome group of people who are professionals, who give it their all. This provision allows me to work, take the rest I need, and ultimately retain my own identity, knowing my daughter is receiving a brilliant education.

If a day of school is taken from us we are floored.

Be that through strikes (I sincerely hope the teachers and teaching assistants receive the pay rise they so obviously deserve) or through the lockdowns where so many families with disabled children were simply abandoned. And so it follows that, rather than being a beacon on the horizon, school holidays often feel like a looming threat.

As a parent, this is a painful truth to process; especially when ‘everyone else’, every media outlet, business or community group, is shouting about all the fun things there are to do. Sharing opportunities and family days out; 99% of which we could never dream of doing, or certainly not without an eyewatering level of planning and a big team of people.

I used to fight against this, to try to keep up, to try to make our days fit what we ‘should’ be doing in a school holiday; but not anymore.

I have discovered that going with the flow, for us, is the only way. There is a surprising freedom in this; once expectations are gone and I find myself saying a clear but polite, “thank you but that won’t work for us” to offers of days out, the pressure evaporates.

I was in the supermarket recently and we had an experience that I think illustrates this well. Our local supermarket has introduced the cutest little trolleys for children to push. I wanted my little girl to have a go I thought she’d enjoy it and, if I am honest with myself, we may feel a glimpse of what it is like to be a ‘typical’ family. But my little girl is uninterested in what she is supposed to do. She instead found her way to the freezer aisle and determinedly opened each freezer drawer and leant inside, feeling the cool blast on her face. She did this for at least half an hour. In days gone by I would have fought against and discouraged this, encouraging her to do the fun thing she was supposed to do (the little trolley).

I have now learnt to embrace her choices, tune in and even join in.

Turns out that an icy blast on your face on a hot day is quite a nice feeling, sort of like a reverse facial, I am sure it must be good for the pores. The payoff here is vast. It delights her to have me in her world. I have learnt more about this by reading about Intensive Interaction as a technique for engaging with children with learning disabilities. It makes a lot of sense.

I am taking this learning and applying it to the holidays this year. We may find ourselves with our heads in freezers, but we will connect, relax and have some fun among the work and chaos. And that for me, is a success.

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