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Thursday, 13 July 2017

What SEND families find most difficult about the holidays

Anthony on holiday

In some ways, this is maybe one of the saddest posts I've written.  Generally I wouldn't put myself into the 'sad' or 'angry' blogger categories.  I definitely share how I feel and how *I think* my boys and family feel about things that happen. But I'm not sure they are really sad posts. When I asked some SEND families what they found difficult about the holidays I wasn't expecting half hearted remarks but I didn't expect to feel so down hearted after reading them.

Perhaps it's because as a family we are now managing to go away and find solutions for some of the challenges we face, during non-term time.  Our family can go to a beach if we find the right one. Perhaps it's the cumulative affect of hearing about the reality from several sources.  And although I'm not one for 'sad posts' I want to share what's been shared with me.

I didn't ask for life stories, I just simply asked 'what is the one thing you find most difficult about the holidays'. Originally I was going to group them into ideas (lack of changing places, things are too busy etc) but as I read them it seemed that each was important and deserved not to be categorised.

See how you feel after reading the responses unedited.  Imagine this is how the holidays made you feel.  I think it makes for difficult reading.. maybe that's the point. I'd like to thank everyone who commented and to let them know I'm thinking of them.



"The lack of places to go that offer changing places toilets. 
That leaves us quite isolated and bored in the holidays"

"Stuck at home mum. Partly because places are too busy. The lack of danger awareness thing.
But mainly because I just can't take them out on my own. Brody is like a tall and heavy 1 year old. And Sydney is well and truly into terrible 2s. It’s an awful thing to admit, but if I’m honest sometimes I feel like I’m a stuck at home mum – not a stay at home" 

"Everywhere is too busy!" 

"Lack of Changing Places Toilets and also coping on my own with a child in a wheelchair and a VERY independent minded 3 year old who's a runner - so stressful worrying about him bolting when you can't run after him and push a wheelchair!"

"Getting outside our garden because everywhere is too busy for D and, with her lack of awareness around road safety etc, it can get very stressful. She loves - for example - a trip to the coffee shop but hates the getting there and getting back through people"

 "Lack of childcare meaning you basically have to give up work for 6 weeks? Benjamin's 1:1 clinical support worker is term time only, and he can't go to holiday club without one, so he's stuck with me for the hols - less fun for him, frustrating for me."


"Finding places to go that are not necessarily designed for all abilities but even just wheelchair accessible. I took my 7.5 year old to a trampoline park and thanked my lucky stars that I'd left Lyla with her grandparents cos there were stairs everywhere even up to the cafe and she wouldn't even have been able to watch the action from anywhere."

"Not feeling like a crap mum to my other 3 daughters aged 14, 9 & 4 as days out are so limited and hard especially during the week when it's just me. When days out often start with a quick trip to a London hospital. When you 9 year old looks ups places she wants to go accessibility guides."

"Currently on school holidays here and it is the violence and destruction I find hardest of all. Staff at school are paid to not leave my son's side but I have to eat, pee, cook, clean and look after his sister too. I can't do it and by end of every summer I have a breakdown."

"Everywhere is too busy for my violent little darling and she hates not going to nursery"

"I used to enjoy the summer holidays before my autistic son hit puberty and refused to leave the house, and before my daughter got too heavy to lift so can only go places for short times as there are almost no changing places toilets in Ireland, though I can help her use the toilet in an emergency. Probably the worst thing is seeing all the happy family holiday photos on Facebook that remind me of all the things we can no longer do"
~ Anon ~

"Finding things to keep my son entertained - he can't go to holiday activity clubs as they are not able to support his needs. We are also not travelling anywhere, as our attempt to go on holiday in February was so traumatic for us all, due to my son struggling with the change in routine and the pressures that bring on holiday brought him."

"Feeling guilty that I can't take my other 2 children out as my youngest with autism will rarely leave the house. Seeing photos of what other families are doing is a constant reminder of all the 'normal' things we're missing out on."
"Family coming to visit us. It sends my son into a tailspin, and it becomes even more difficult to manage his behaviour."
~ Anon ~

"Anxiety means we are often torn between a rock and a hard place. Number One wants to go out, she hates being stuck in the house. But when we go out she is so stressed because places are so busy that she is also unhappy"

"Sweet My daughter never wants to leave the house, no matter what's on offer, we even had trouble leaving the house to go on holiday. Most of her fear comes from soiling herself when out, but she is also really afraid of getting lost, crowded places and just not being at home/school/nanny's house, the only places she feels ok."

Some people struggled to name just one thing, I think because it's sometimes because actually it's all the challenges added up together that's the hardest thing: 

"I find taking all three under 7 out on my own when my partner is at work very challenging. During the holidays everywhere is so busy. Crowds are a major trigger for Sonny. There's only so many times you can go to the park.  And .. lack of routine is stressful for Sonny. It's a big change that doesn't come gradually." 

"The loneliness and isolation, friends wanting to go out and do these exciting things that are not possible for us. Very limited places we can visit due to noise, crowds and safety oh and the possibility of someone dressed up, my son is terrified of costumes. The restriction of always being on my own with 3 children of different ages and very different abilities. The meltdowns and mess. The fact that all my time is taken with my son's care , so very little time for anything else. Even parks are difficult as my son can't physically do all the play area equipment. My own anxiety, and my pain and mobility due to my osteoarthritis. Sorry I really could write an essay." 

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You Baby Me Mummy

12 comments:

  1. It absolutely did make for a difficult read. My heart goes out to all of these families. I love your blog because you tell it how it is and I love the honesty. Great post x

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  2. Thank you for posting! I loved reading about other people's experiences and how some of them managed to cope and how some didn't/don't. I hope they will be able to find alternatives that are more suitable for them. #DreamTeam

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  3. You are doing so much good with this post sharing reality and hopefully making people feel less alone with issues like this but also making others more generous in their thinking too.

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  4. Oh yeah... Having 2 children with conflicting needs and wants makes it super hard! I also feel like a Condemned To Stay Home mum... It's quite depressing reading all these comments together. But thanks for doing it anyways!

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  5. Thank you so much for writing this and sharing it. Collectively we are stronger. Maybe one day things will change. #PostsFromTheHeart

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  6. It definitely makes for tough reading. Sometimes it helps to know that other parents are struggling like you do but this just makes me sad that any of us have to feel so lost and trapped when other parents are casually enjoying the holidays we dreamt of before life changed. Im with Sheri - feeling like a crap Mum to my other son. But we just take a day at a time

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  7. It breaks my heart that i am so looking forward to my 1st summer holidays with Harry and for all these mummies it's such a hard time of year. Why does the support stop when the schools close ? #PostsFromTheHeart

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  8. I got such a tight feeling as I read through all of the comments. As difficult as it is to read, it has made me think about all of the possible challenges this year and what we can do ahead of time to avoid many of them.

    One of the things this Summer is that we are having 2 mini breaks, and for some of our holiday we are splitting up as a family. This might sound a bit strange, but it is a lot easier for us to manage. #spectrumSunday

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  9. This post gives a real insight into how difficult the long school holidays are for many families. Social media can become full of images of families having amazing adventures together which doesn't help those families who are pretty much house bound all summer due to circumstances well beyond their control. #spectrumsunday

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  10. The long school holidays create so many issues. I help at a foodbank and we always get more people coming during the summer because the free school meals / breakfasts stop. These things make such a difference to families as well. It's such a shame that there isn't more support available outside school time. :(

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  11. Tough reading, but also reassuring to know we are not the only family floundering at this time x

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I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

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