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Stories About Autism

Summer holidays aren’t what I thought they’d be

August is here, our week of summer club at school is over, and the the holidays have begun for real. Five more weeks of waking up every day and thinking ‘Oh my God, what are we going to do today?”

Every parent I know has a bit of a love-hate relationship with the 6 week break. They begin full of energy and ideas, places to go, things to do, maybe even a holiday or two. By the end of it the parents feel like the 6 weeks have lasted forever, and can’t wait for school to start again.

For autism families like ours, the summer holidays present the same problem we have every weekend, “What are we going to do today?” The summer break is like we now have 18 consecutive weekends back to back.

Now don’t get me wrong, I’m not complaining about spending time with my kids, I absolutely love the time I can have with them in the holidays, and hate it when I have to leave for work every other day. It’s just the holiday period is challenging, and the main problems we have are two-fold

  1. Jude is unable to spend any amount of time in the same room as his brother Tommy. This means they pretty much need one-on-one care all day long.
  2. There’s a real lack of places that we can go to that Tommy and Jude will enjoy, and that aren’t jam packed with other kids, their worst nightmare!

So, during the month of August it feels like you spend half the time scratching your head trying to come up with good ideas to keep them active, and the rest of it feeling guilty that their holiday isn’t as fun as it should be.

When I think back to my summer holidays, like most kids, I absolutely loved them. I’m sure they took a lot of planning on my parent’s part, but they seemed simple enough to me.

I was busy every day playing tennis and football. Going to the park with friends, having day-trips to the beach with family. Visiting the cinema, the theatre, exploring all of the culture that London had to offer. For a week or two I’d get to go abroad, usually with more friends and family, and where there’d be kids clubs to keep me entertained all day long.

Every summer, when I sit on the train going to work, I see families excitedly travelling to whatever fun-filled activity they’ve got planned that day. I see them with suitcases ready to go to the airport. I see them talking about the film they’re going to see, or what sight in London they’re off to explore.

My summer holidays were just like those kids, jam-packed with activities.  Plus, just like them, I was always around other kids,  and therein lies the main problem…..the fact that during the summer holidays every other kid is off school too.

Right now, at the ages of 8 and 5 friendships are something that Jude and Tommy have been unable to develop with other children. The only real friendships they have are with the people who look after them. So, their holidays and weekends don’t consist of spending time with their friends doing fun activities together like mine did, instead it’s with us, their parents, or other carers, one on one. Basically adults, not other children.

Jude can be extremely anxious around other kids, to him they are loud and unpredictable. Tommy is much more tolerant, but he doesn’t really understand how to interact with them too much, or join in with what they are doing. Because they both have such limited communication skills, socialising is very hard for them.

All of the traditional holiday activities that might be fun, well guess what? Every other family thinks they’ll be fun too, meaning there’s hundreds of other kids there too.

So, what can we do for the next 5 weeks?

A summer holiday abroad is out of the question. Two hours at a busy airport, before another 2-3 hours on a plane is a bit out of our reach right now.

There’s no other sports or holiday clubs in our area that could cater for their needs, so that option is out.

Cinema? There are a number of autism friendly showings that are popping up, but unless they release a Mickey Mouse Clubhouse movie then I don’t think they’d last more than 3 minutes.

The theatre? Same as above

Museums, or other exhibits? The same applies, they wouldn’t be interested, and again the number of other people around would be too much.

The beach? We’ll try and do some trips. From past experience an hour or two is the most they’ve been able to handle, but it can be worth it.

The park? We’ll spend as much time here as we can. On a good day we’ll get an hour at the park, any more than this and both Jude and Tommy seem to struggle coping with it.

Swimming? Although they both love being in the pool, the amount of noise in a packed swimming pool, and the whole changing room scenario just ruins the experience.

Tommy gardenOther than that, what can we do?

We’ll be praying for dry weather, so that there’s lot’s of opportunity to play in the garden. To be outside bouncing on a trampoline or playing in a paddling pool, without the stress of other children

We’ll try and go for walks along the river, timing it so that it’s at a quieter time of day. Tommy will be able to go crabbing, and we’ll try and make sure he doesn’t keep putting his hand in the bucket to pick up the crabs.

We’ll go for lot’s of drives. An hour or so a day listening to music whilst being driven around the countryside is Jude’s idea of heaven, and means there’s no stress from he outside world. These drives may coincide with a trip to the golden arches of McDonalds, the only restaurant we can have a ‘meal’ at!

We’ll also try and get to the sensory room we visit once or twice a week, as it’s somewhere Jude or Tommy can have exclusive use. This means an hour of uninterrupted play without the risk of any other children upsetting the mood.

Other than that, there’ll be a lot of time spent at home, doing whatever it is they both enjoy, separately. So in Jude’s case it will be lot’s of physical rough and tumble, lot’s of bouncing on the bed, pushing and pulling, and sensory activities with blankets. For Tommy it will be puzzles, painting, sensory play with things he can touch, looking at books, and running around.

And of course the sacred iPad. There’ll be lots of use of the iPad, especially when they have to spend time together. For Jude it’s a real comforter, one that, as he is becoming more and more skilled in using, has increased his independence.

I used to be envious of other families, and all the fun things they seemed to be getting up to in every holiday time. But then I realised it’s not about all the things we can’t do, all the things that I think Tommy and Jude should be having fun doing. It’s about focusing on what they really enjoy, and making sure they have the best time possible doing whatever that is.

So if that means most of their holidays are spent inside at home, or driving aimlessly around in the car, then so be it. If that’s what they love then my job is to make sure they have the most fun possible whilst doing it, and for the next five weeks that’s what I’ll focus on doing

 

 

20 comments

  1. Jon Newcombe - August 4, 2016 6:49 pm

    Hi James, as the father of a son with dual diagnosis of down’s and autism, I can completely empathise with your comments. You capture the challenges perfectly: no ‘why me?’ type of hand-wringing but, by the same token, no ‘right on’ patronising sentiment. Like you, I find it hard not to beat myself up about not providing days of endless fun at holiday time (training days are like a poke in the eye too) but if they’re happy doing what they do, then that’s all that matters I suppose. It can be a lonely existence though when you see ‘normal’ families enjoying a hassle-free day out. Keep on smiling 🙂

    • James Hunt - August 4, 2016 9:59 pm

      Hi Jon, thanks for your kind comments, I’m glad you enjoyed the post.

      You’re right, it can be tough at times, and lonely, but then you have a magic moment, and you realise it’s absolutely worth it.
      Hope you have a good summer 🙂

      • Nick - August 12, 2016 7:13 am

        Hi, my wife sent me this link to read,
        We have a boy with autism and have the daily struggles during the holiday period, fantastic words. Enjoy your summer

        • James Hunt - August 17, 2016 10:29 am

          Hi Nick, thanks for reading, glad you enjoyed it. Hope you and your family have a good summer too 🙂

  2. Al - August 5, 2016 9:01 am

    This really chimes with me. Our eldest (9) has recently had an autism diagnosis but the younger 2 haven’t (and probably won’t). Every day he either demands to know a detailed itinerary of events or sets out his own for us. He hates going out unless it involves us buying him things for his various collections and although we’re all looking forward to our holiday in Norfolk, we’re also dreading it too. At least it’s very open there and there are places we can go where we won’t see a soul!

    • James Hunt - August 11, 2016 12:32 am

      Hi Alex. Thanks for your comment. Yes, what you mention can be difficult at times, our kids have a desperate need for control. I hope your holiday goes well and you get to have a good family break. Good luck 🙂

  3. Laine Snape - August 5, 2016 6:32 pm

    Hi James,

    All I was going to add is try not to beat yourself up. It’s not an easy task. But as I read on you had worked out the answer any way. Let them do what they most enjoy, ,great if you break it up with nice walks when you can, winters great st the beach anyway , they are lucky boys having you, you and I know how awful some children’s lives are, parents who just don’t care or don’t know how to parent at all. Xx

    • James Hunt - August 11, 2016 12:33 am

      Thanks Laine. I’ve learnt letting them do what they enjoy is the key to a happy life! I appreciate your kind words, wouldn’t have it any other way xx

  4. Margarita Voelker - August 8, 2016 9:18 pm

    I am a little like that. I had pictured our summer time quite different. I had almost every minute of it planned. It turns out my daughter Becky, (12), (autism spectrum), had a different plan. She is at “early stage” puberty, and she had a really hard time. Her hormones just kept us all out of sync. Sleepless nights, disrupted behavior, etc. etc. So, I had to reinvent the summer time, keep it simple, quiet as possible. Trying to figure out ways to keep her under control. It is almost time to go back to school, just when I had figured out how to keep peaceful days. Ah, that’s our life, but at least we were able to be together for two months. I was able to keep my attention on them full time. It is what it is. She is a good kid. I consider my self lucky, when I see other families in more critical situations. Hope everybody had a nice summer. Time to get ready for school!! Again.

    • James Hunt - August 11, 2016 12:35 am

      Hi Margarita. It sounds like you figured out a way to have a great summer, really happy for you all. Good luck with the transition back to school, got another 4 weeks left here 🙂

  5. Barbara Snyder - August 11, 2016 3:56 pm

    I love it I laughed and felt at home with this father I love the crabs part and the golden arches and yes it hurts sometimes but I get hugs and still love watching old Disney movies for you see we have a beautiful 13 and a half year old daughter who is still not fully potty trained and has a lot of sensory issues and wouldn’t trade it for all the money in the world and yes she has autism it made me into a better person and couple and laugh and my husband loves is beautiful family

    • James Hunt - August 17, 2016 10:25 am

      Hi Barbara, thank you for your comment. Your daughter sounds just perfect, so glad there’s so much love in your family 🙂

  6. Annie - August 11, 2016 10:50 pm

    Hi James, thanks for putting it so beautifully out there. Yes, our summer is no way to be the same with typical families and I know exactly how you feel when this fact came to us…
    I am making peace with it slowly though. I come to believe that yes we miss out on somethings but what we gain is not to be compared with a typical experience. Yes, my kids are not entertained by movies and theaters and not get to play in the sand (not yet) and interacting with other kids, but the hours and hours they spent with me ( I do Son-rise playroom time with my son) is so precious. I come out of this experience every weekend amazed at how much more I learn about him and appreciated him more. He slowed me down and “forced” to really get to know him as a person and not just “tasks” to accomplish and “objects” to pass around. I will forever appreciate this time and who knows when him do recover (I’m very hopeful) we will take him to beaches and fun noisy places !!

    • James Hunt - August 17, 2016 10:26 am

      Hi Annie, thank you for commenting. We learn so much from our kids every single day, and the attitude that you are showing is so important. I hope one day you get to go to the beach, but I’m sure you’ll be happy either way 🙂

  7. Jaime Langdon - August 12, 2016 2:02 am

    Oh my thank you so much for this! I feel the same exact way! I have a 12 year old daughter with severe autism who is non verbal. I struggle with this every day of the summer. I feel so bad when I don’t get her out and do something active. It’s the constant list in my mind of possible places to take her and one by one they don’t work most days. She loves swimming and is a natural swimmer so yay but this year she developed a fear of going to the pool at my mothers development, I don’t know what happened,it could’ve been anything, the water was too cold, the changing room freaked her out, anything. I can get her to go the YMCA pool but its usually bogged down with kids and that just makes me uncomfortable.
    Any way your post helped me not feel like the bad mom, the scaredy cat the won’t go places anyway and gained some perspective!
    Thanks for that! Much luck to you and your boys!

    • James Hunt - August 17, 2016 10:29 am

      Hi Jaime. It’s tough when we can’t figure out what it is that has made them not want to do something they previously loved. Especially when it then limits our options even more of what we can do with our kids. Thank you for reading, and I hope you and your daughter have a good summer too 🙂

  8. Rainbowsaretoobeautiful - August 22, 2016 6:06 pm

    We have something similar. I think my post at the beginning of the summer was called something like ‘Yay for the summer holidays?’. It’s about how we always have a good holiday time but it’s probably just not what anyone thinks it’s like when they ask. They are different, just like most of our lives. Tomorrow’s post is about taking David to the beach (I’m supporting the Makaton sign’s of the week and this ‘s sign is ‘Beach’), and its the same thing, same but different. I think as the boys have grown I’ve gathered more instinct for what will and won’t work and I’ve developed an attitude that enjoys the times that works and tries not to worry when it doesn’t. It’s ok to call it a day early.. even when sometimes it’s really early. Thanks so much for sharing and for linking up to #SpectrumSunday, I hope we see you again in for the next one in a few weeks.

  9. Emma Plus Three - August 24, 2016 9:58 pm

    It sounds like such hard work! I’m lucky that my son always wants to be out and about and is happy to be around people. But he is struggling with the lack of routine over the summer and every single day the first thing he asks is “what are we doing today?” and he demands an answer, it’s exhausting when you’re running out of options! x #SpectrumSunday

  10. Jade-Marie : Tiptoes Clever - August 29, 2016 6:54 pm

    Such a lovely post James! It’s always hard when those expectations that we may have had come to the surface. This piece is filled with such a deep love and understanding for your boys, their happiness is paramount to you and that is apparent. Some days are tougher than others. Hope you have all been having a great summer, your way!

  11. Someone's Mum (Danielle) - September 3, 2016 4:15 pm

    It is so tough. We always try to do too much and then feel very guilty when we have a very overwhelmed and anxious E. We like to get to places really early before many people are about. Also, another good place is if you can find a national trust place with really big grounds – we like Croome – You can get there and past the bit where the people are focused into the more wilderness type bits. E loves wandering aroung there and if we’re careful we’ll hardly see anyone once past the entrance and past the cafe! It sounds like you’re doing the very best you can to give them varied experiences, working with the limitations you have! Thanks so much for linking with #SpectrumSunday

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