For many families, summer holidays can be a mixed blessing – kids can relax and take a breather from school, but parents are left juggling camps and calling in favours so that the kids are looked after while they’re at work.
One set of parents who find this particularly difficult are those who have children with special needs. Finding summer childcare can be a very challenging and expensive burden, and many breathe a sigh of relief when schools open their doors in September.
Ruth, a mum of three, works Monday to Wednesday. During term-time, her three boys are at school, then they go to a childminder in the afternoon. During the summer, ideally, she would send all three to camp each morning, and then they’d continue to go to their childminder in the afternoon. However Ruth’s youngest son, age seven, has Down Syndrome, and finding camps for him has been difficult.
“There are a huge amount of camps available for your typically developing child, but none of them are equipped to deal with Special Needs kids.” So Ruth had to send her seven-year-old to her childminder for full days, while his older brothers went to camps. “I’m paying for full-time childcare and also paying for camp. So because the camps don’t take kids with Down Syndrome, we are literally paying on the double.”
Ruth was able to send her child to one camp, run by the Down Syndrome Centre, but it was only available for a limited time. “This camp is fabulous, but he attended for two weeks only, and for two-and-a-half hours a day.”
Elaine, a mum of two children, one of whom has Down Syndrome, faced similar problems this summer. “I work from 7.30am to 1.30pm every day, then I fly out of the office and head to school for pick-up during the school year. For summer time, this means heading to whatever camp my mainstream child is attending and then home for two o’clock to pick up my daughter who has Down Syndrome. This year we’ve had a combination of three different SNAs coming in to cover my working hours.”
Dublin mum Siobhan works part-time and had difficulty finding childcare this summer. “Once the school year finishes, you’d think I’d be delighted to forgo making lunches and getting clothes ready for the morning, however in my case no - the challenge of childcare when you have a child with disabilities only begins. I need to work - both from a financial and ‘escape’ perspective. I will probably be lambasted by mums when I say this, but I hate the holidays! My son needs to be entertained all day, every day. He has very challenging behaviour so if he doesn't have activities assigned for the day he creates havoc. I'm wrecked when I stay at home for a day. Summer camps are very difficult to find when it comes to children with disabilities. Most won't take a special needs child unless you have a carer to accompany them and costs are too high for this.”
Elaine also says the most difficult part was sourcing the right childcare. “It took us quite a while to get everything in place so we only got sorted by the beginning of July which was seriously stressful!” She explains that she needed someone who her daughter would be comfortable with, but also someone who would be comfortable the extra needs she has. “It was a huge comfort to have someone who was not going to be phoning every two minutes with issues and questions but could just get on with the job. My little girl is actually a very easy child but would have the typical quirks of someone with Down Syndrome, for example a tendency to bolt, communication challenges, a need for structure and routine. This is why we tend not to attempt mainstream summer camps. I don’t think she’d be able to comply to the level expected and really don’t want to get the dreaded call to bring her home early, which has happened to a lot of her peers with Down Syndrome. This leaves just the special needs option for camps, which are few and far between. Getting an SNA in to cover meant my life was a lot easier, but that comes at a cost as obviously you need to pay a higher rate per hour than regular childcare.”
So how will Siobhan, Ruth, and Elaine feel next month?
“I cannot wait for school to open!” says Siobhan. Ruth agrees.“I honestly can’t wait for September 1st, when order will be restored. Kids with Down Syndrome crave routine, stimulation, order and activities, so it’s very difficult during the summer. I feel the kids actually regress in the summer and lose some of the skills they struggled to learn. It’s not all about the money – it’s about all our kids having the same opportunities.”
Elaine echoes their sentiments. “Right now I’m tired and can’t wait for them to get back to school and we can all get back to normal or as normal as our life ever is! Children with special needs thrive on routine and structure. The summer holidays are very long for these kids, and for us, with very few real options for activities outside the family and home. I found this year particularly demanding with regard to childcare and will welcome September with open arms.”
And in a less imperfect world, what would she like for her little girl? “I would love to see more opportunities for her in an inclusive environment. Her brother can do so much, which fits perfectly into my working day, but she can’t. So we all get stressed and she ends up being minded at home and wondering when it’s her turn to go to camp, which can be pretty heart-breaking.”
The other thing that Elaine says she wants (with tongue slightly in cheek) is something many of the rest of us might secretly like by this point in August too: “Shorter school holidays!”
Andrea Mara is a shoe-obsessed, coffee-loving mother of three from Dublin. When she’s not working or looking after her three kids, she’s simultaneously making tomorrow’s school lunches, eating Toblerone and letting off steam on her blog.
