Farewell to a costly summer – one family’s story of the disability price tag over the school holidays
As we say goodbye to summer, Family Fund’s media manager Rachel, looks back at why her summer was extra expensive due to her son’s additional needs.
“Six weeks out of routine, long days looming without structure.
It’s a time of pressure and intensity for all parents, whether working or full time caring, or like lots of us, a mixture of both.
Summer costs everyone more than term time – food, activities and usually childcare for a start.
But for a family like mine raising a child with additional needs, here’s exactly why the summer cost us more. Over £1,000 more…
1. Taking two cars on our family holiday – extra cost £150
The average family of four wouldn’t take the slightly unusual step of doubling up on cars. But for us, my autistic son could not hack four minutes of his jolly, neurotypical 2.5 year old brother and his disruptions in a confined space. Out of routine with no beloved school (my son loves his specialist unit at school) has seen car journeys end in scratching, hitting and general disaster between car seats. Having a second car also means that when the children need a day or a few hours apart – we divide and conquer in our quest for calm.
2. I took an unpaid week of annual leave – extra cost £250
Despite being married to a teacher and having a toddler in nursery, and only working part time, it’s still necessary for me to take extra unpaid annual leave in August. Our son needs one adult, and sometimes two, to ensure he is safe and entertained for the day. While many six year olds go to holiday clubs, playdates, or can concentrate and join in on longer activities, even watching a film from start to finish wouldn’t be possible for our son right now.
3. Lack of routine caused a meltdown which cost us our TV – extra cost £400 plus £100 for protective screen
You don’t blame dysregulated children for throwing and kicking when they’re distressed. But you do have to pick up the tab. This summer our TV was broken for the first (and hopefully last) time, which was a nasty shock and expense we didn’t need. We also purchased a screen protector, costing £100, to ensure the next TV avoids a similar fate.
4. Special interests – day trips – £200
My autistic son has visited some costly attractions multiple times this summer. In a way that you could simply refuse if a neurotypical child asked (and I have a second child who is neurotypical and who can be denied certain things and recovers without much fuss. His brother can’t be and doesn’t.) It’s hard to put an exact figure on it. But to meet his need for repetition and regulation, we’ve spent hundreds on tickets and petrol, driving him miles and miles to the places he finds comfort in.
5. Waste, waste, wicked waste – £200
Wasted food because it wasn’t ‘the right ice cream, chicken nugget, pasta sauce’ and out of line with his sensory needs. Or wasted tickets when he couldn’t emotionally manage a trip somewhere despite desperately wanting to go until he arrived. And wasted toys because he was too dysregulated or hyper to play with them or broke them due to meltdowns. The amount of things that just didn’t work out this summer runs into the low hundreds again.
When all is said and done – am I complaining about my summer? Not really.
My son’s autistic needs are accepted and respected in our household – just as I’d like mine to be if we switched places.
And I can tell you that he’s had some fantastic experiences that support his learning, build his confidence and ultimately enhance his quality of life. But the £400 DLA we get every month didn’t even cover the broken tele friends. I hope everyone is having the best possible return to school, it’s certainly been a long six weeks for us. Farewell costly summer.