Parents’ top tips for summer serendipity with your disabled child

Ah, the school summer holidays, don’t you just love them? Six, long, glorious weeks of unstructured days stretching out before you...

But just how glorious are those weeks when you have a child with disabilities? If you’re lucky enough to be able to do paid work while your children are at school you will know there are a dearth of out-of-school clubs that will be able to cater for your child during the holiday. For some parents, this means splitting their holidays so one parent is always home, maybe managing one week all together. For others, it means relying on family or searching for inclusive or specialist play schemes to cover some of the time.

Parents’ top tips for summer serendipity with your disabled child

When our children were growing up, we would book a villa in Europe, usually Italy because of their Italian heritage, that had a decent pool and wifi and take grandparents (including Italian Nonno) with us. We would often drive all the way – the road trip being part of the holiday, while grandparents flew or took a longer time to drive and took one of the children too. This meant the cost was split, we had privacy for those inevitable meltdowns (that was just me…), we could cook for ourselves, with Italian supermarkets being fun to browse in (and cool) and best of all, there were more adults to do the caring. Happy days!

But that was us - and every family is different, with different needs. So I asked the members of our SNJ, Let’s Talk about SEND Facebook group for their tips on making those long summer days as much fun as they can be. I’ve put them together along with some tips of my own, borne of 20 years of experience...

Planning ahead...

  • I try and stock up on toiletries and cleaning products before summer starts so I can reduce taking children out shopping. Also, visit local parks early before they get too crowded. - Pauline
  • Use the long break to complete a ‘same, but different book’ to make the return to school easier. 6 weeks is a long break, and we find it helps to talk about the return to school, little and often, using the book each time. Julie
  • ‪Get any school uniform you need as early as possible and go really early in the morning to get new shoes whilst there is almost nobody else in the shop, and then wear them for a short period every day! Julie
  • Clarks do "autism hour" events when it's quiet contact your local branch - Christina
  • My child really struggled in reception but having a visual schedule helped her. Then we broke up for the summer and it was awful, daily meltdowns. It suddenly dawned on me if schedules worked well for the week at school why stop using them when school stops! We generally just put ‘park’, ‘Day out with friends’ etc. Also just getting out the house every day even if it’s just a 10-minute walk. Kerry Ann
  • Make use of Facebook groups such as 'DLA days out' to get local advice or if people have visited same areas. Can be very useful! - ‪Sus
  • ‪If you have carers, book as far in advance as you can so you get the availability - Samantha
  • If you’re looking to book somewhere, AirBnB have accessibility filters so you can filter out places that aren’t suitable.
  • There are also more and more places specially designed for people with disabilities, and there are also websites that offer holidays for disabled people, taking the hard work of figuring out what’s accessible and what isn’t away.
  • We do a basic plan with some flexibility built in - just one activity a day. Last holiday I used a PECSholiday planner and was so surprised how it seemed to help. We often have themes for days which can be creative and bring lots of fun ideas together. One summer was completely Harry Potter. Also having continuity on holiday with some activities continuing same time/day etc. Tara

Days out

  • Fill little spray bottles for blasts of cooling water on hot days – Lisa (You can buy empty ones in Boots or similar in the holiday section) There are also commercial varieties available but if your child doesn’t like this, a mini-fan or just an old-fashioned fan are great. You can also have fun making your own!
  • ‪I have two children who are complete opposites. I let them both make a list of things they would want to do and put them on a planner so they both have some visual structure of the holidays and take turns or compromise. I’ve even got them to let me have a couple of days doing what I want! Also, I’ve learned not to put myself under the pressure of doing something every day - it’s a lot of pressure over a long six weeks for us mums! Claire
  • Make sure you ALWAYS have water bottles with you, wherever you go. Keeping hydrated is vital for children, especially for those with medical conditions. Many coffee shops will also allow you to refill your water bottles for free. Plus this website is listing all the places you can find free refills or water fountains so you can also help save money and the planet by not buying plastic-bottled water.
  • If visiting UK attractions have a copy (even if just scanned on your phone) of diagnosis or Disability Living Allowance (DLA) paperwork so you can get the carer in, usually free. Depending on the attraction they will often go out of their way to help. I’ve found the National Trust are very good for this. Sus
  • Don't forget Merlin passes, GP Carer's Break payments if you have them, and CEA cinema cards too!
  • If going to an attraction or museum, get in early or call them up and find out times that are generally quiet. Miriam
  • Do some scenario planning ahead of days out such as having an exit strategy and a quiet place to go wherever you are. Think up a ‘plan b’ in case things go wrong. Check out information before you go, so you know locations of everything. Miriam
  • Take suitable snacks in case you can't get something out to meet your child's dietary needs or preference. Miriam
  • Make sure you have a cool bag with an ice block in containing extra drinks and wipes -nothing beats a cool wipe on a hot and sticky face! (But don’t flush them). My husband designs these cool bags, they’re fab, keep stuff cool and are very stretchy! TT
  • Don’t forget hand gel, spare clothes, basic first aid kit with medicated cream and plasters as well as an empty bag for trash – don’t leave it behind!
  • I tend to go to places where I know I won't be judged (our LA's disability card is great as they have an app of what is available) Where possible I always take another person to help or go with a friend. I also tend to do a day out followed by a day at home and where possible have people round to ours rather than goes to their house as that way if it becomes too much for one of mine they can go to their safe space. Rosemary
  • If you are out and about in woodlands, parks, stately homes etc, walk for 10 minutes away from the car park and I guarantee you will fund a quiet spot. Take a small towel and change of clothes where ever you go so that streams can be explored. Hours of fun. Rachel
  • For day trips have a beach trip bag ready, going to the park bag, going to the countryside bag ready by the door. You can just go without too much delay. Plus always keep a sensory bag by the door or in the car -absolutely vital. - Justine
  • Check your area’s Local Offer website. Good ones list events suitable for children with disabilities so keep an eye on them – as well as your area’s Facebook pages for Short Breaks/Carers/parent support groups.

Flying & other journeys

  • Always use the special assistance at airports – it’s not just for people with limited mobility. You can get through the security queues much faster and if you go there immediately when you arrive, they can help you check your bags at the special check-in desk, so you don’t have to wait in the long check-in queues. Make sure you book it when you book your flight, or add it before you go.
  • If you are flying with a wheelchair, be prepared for a wait after you land while they bring your chair around. Just relax in your seat (if possible!) while everyone else squishes by. You may find that at your destination airport their systems are different so they have to put the wheelchair user in an airport wheelchair, as they’ve taken their own chair through to the baggage claim area. If this is going to be a huge problem, make sure you alert the cabin crew before you land so they can do their best to help.
  • ‪Check with the airline as seat reservations may be free for disabled travellers and companions. Lisa
  • As with the water tip above, keeping hydrated is important, especially on planes. If you’re flying, you should be able to take EMPTY water bottles through security and fill them up afterwards. This site, Water at Airports can help with where to find them – and you can add your own that you’ve found too.
  • Take a pack of distractions - multiple Rubik cubes and sweets work for us - Sus
  • ‪Invest in portable power packs for keeping electronic devices charged. - Sus
  • A small whiteboard with journey details broken up in sections plus toilet breaks; printed maps of different parts of journey and a watch. Google Maps is fantastic for this kind of detail. It gave our son more control and less anxiety plus he kept us all on task! We even covered the dreaded traffic congestion from the highways agency website where it identified hotspots and roadworks, plus switched on traffic update notice on the radio. Our Son became our human satnav - Justine

Holiday your way!

  • We have learned over the last 14 years that what our ASD/PDA boys like best is staying at home and relaxing having friends over and unlimited of self-limited screen time. We have very few planned activities as these are really stressful for them, even if they want to go. We found this meant we had much happier, more relaxed boys. I have water balloons/water guns/trampolines/endless soft inflatable balls/tennis etc to keep them busy. Susan
  • Canal boating has been our only way of managing a "real" holiday.. with grandparents, but a lovely time where everyone could do what they wanted. Did the first one three years ago, doing a second this year - Benedicte
  • Our son has complex Ehlers Danlos syndrome (EDS), is a wheelchair user and has special dietary needs. ‪Our biggest problem is exhaustion so we pace his week - what we do on one day means the following days need to be very flexible with plans. We take each day as it comes, but have plans for trips out so that it breaks his week into manageable chunks. ‪It’s very easy to be isolated when you are unable to take part in physical activity at the age of 14. This then leads to depression and lack of self-esteem. ‪I have no issues with him being on the X-Box for a few hours if it means he can rest, but still interact with his friends. He only has people he knows who he ‘talks’ to. ‪We also make sure that there’s family time where we are all together. Sarah
  • We have been to Scotland for the last week in August as that's when Scottish schools are back and it's quieter. Get an annual pass if there is somewhere they like then you can go in at 3pm multiple times when it's a bit quieter or if they can't manage you can come out earlier. Christina

So lots of tips there - feel free to sign in and add yours to this blog post too!

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Tania Tirraoro

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