Thursday, 12 April 2012

High Days & Holidays

Me on holiday in Spain with Chrissy aged two

I’m back! Haven’t blogged for a while because I've been in South Africa celebrating my husband, Ian’s, 50th birthday.

Holidays always invoke mixed emotions. I enjoy the break and new experiences but feel guilty about leaving Chrissy. At each new place we visit I wonder 'what would Chrissy think of this? How would she cope?' Does that sound silly? After all, she’s 28, well past the age when children stop holidaying with their parents. The difficulty is that she understands enough to know a long period has gone by without a visit home but doesn’t understand why. There’s no doubt that she misses us - she gets upset if more than a week goes by without a visit home.

In previous blogs I’ve mentioned challenges that parents of children with autism etc face with special occasions like Christmas. They’re the same with holidays but worse!

I first took Chrissy on holiday when she was about 14 months old. We spent a week in the Lake District, where I’d lived as a child, with my parents. We were coming to terms with the fact that my dad, still only in his fifties, was in the early stages of dementia and there was ‘something wrong’ with Chrissy. She had just been prescribed Phenytoin for newly diagnosed epilepsy and all she seemed to do was sleep. Apart from our sadness over the unfolding double tragedy in our family, our holiday activities were similar to anyone else's with a young child.

Our next holiday was about a year later, when Chrissy, was two (photo). We were staying at a friend's Spanish villa. The flight out there was particularly memorable. Chrissy screamed & thrashed about non-stop to the point where a sympathetic fellow passenger offered to hold her so I could eat and drink something. Chrissy promptly threw up in her lap. I still blush when I recall the sight of our good Samaritan at the baggage carousel with vomit stains on her dress. There was more drama on the drive up to the villa, which was high in the mountains. Chrissy seemed to be in pain &, looking back, I realise it was probably caused by her glue ear. She's had countless ruptured ear drums and infections, and the altitude changes must have been agonising for her. I was so uninformed back then about her medical issues.

On another holiday to Cyprus when she was five or six, Chrissy ended up in hospital because she had a run of seizures. I stayed with her while her dad cared for her brother, Jamie. The hospital didn't allow children to visit, which made things very difficult. I remember glimpsing disabled adult patients through cracks in doors away from the main wards. My heart went out to them and their families being treated like pariahs. I had no idea then that Chrissy would end up like that.

As Chrissy grew bigger, her behaviour challenged us more than her health. When she was about eight she was allocated a week’s respite during the school summer holidays. We decided to use it to take Jamie and Alex, my other two children, to a camping site in the south of France. When I told a friend that we were going away without Chrissy, she was shocked. “She’s your flesh and blood. How can you even think about going without her?” she gasped. Ian didn’t mince his words in justifying our decision. We needed a break and previous holidays with Chrissy had been disastrous. There was no point in putting Chrissy or ourselves through what would be another ordeal. She’d had several shorter spells in respite and enjoyed it there.

We next took Chrissy abroad (on the Eurostar) when she was 14 and in the honeymoon period of the life-transforming new drugs regime. Our trip to Disneyland, Paris with extended family was a huge success, which we tried to repeat with another trip in her twenties but she’d just started on Risperidone then. She spent much of the holiday in a very peculiar trance-like state where she alternated between indifference to the Disney characters that tried to engage with her and sobbing inconsolably. It was bitterly cold there and she kept trying to take her gloves, coat and hat off. Her senses seemed completely out of kilter.

Since the enforced drug changes in Chrissy’s early twenties, she’s been too unstable to take out anywhere, let alone on holiday. It’s always been a wrench to leave her behind while we go away, and I was reluctant to go at all, and then for no more than a week. During recent years my husband has pressed me to go further afield for a longer period. He has a very demanding, high pressure job and wanted us to see the world while we were still young enough to do some adventurous stuff. It’s enough that he took on my three children from a previous marriage as his own – the least I could do was compromise on the holiday issue. Four years ago we took our youngest child, Alex, to Peru for three weeks, which involved spending a week on the Amazon. Only emergency calls could get through and I was unable to check how Chrissy was. Talk about cold turkey!

When we got back I learned that Chrissy had been very unsettled at one point with increased self-injurious behaviour but there was nothing I could have done and, to be honest, ignorance was bliss. We really threw ourselves into the spirit of that holiday and I astonished myself by climbing Machu Picchu ‘Old Mountain,’ something I never thought I'd be fit enough to do. I returned home with more confidence and renewed energy to deal with the challenges I faced with Chrissy.

The dilemma of whether to take a disabled child with severe behavioural difficulties on holiday can cause rifts between parents. I wrote a feature for Woman’s Realm Magazine about a couple that couldn’t agree whether to take their son, who has autism and moderate-severe learning disabilities, on holiday with their three younger children. I could see both sides. His mum felt very emotional and guilty, as I do, about leaving her child behind but his dad felt that they couldn’t have a proper break if they took him. Also, he made the point that the child himself disliked the unpredictability and routine changes involved in holidays. Also, as the lad grew bigger it was the dad who had to chase him if he ran off or physically restrain him if he kicked off!

It’s a contentious issue and I’d welcome comments from other parents on how they cope – or are family holidays a thing of the past for you since you’ve had a disabled child?


I am a SWAN UK (Syndromes without a Name) blogger
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14 comments:

  1. I have not been in this situation personally so cannot comment from that point of view but I totally agree that the rest of the family do need a break. It must be such an emotional roller coaster ride for you as it is clear that you do not enjoy having to leave Chrissy behind but it would be impossible to take her and without that 'me' time you would not be able to face up to the challenges that lie ahead.

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  2. Thannks Nanny Anne. Yes, very important for parents of special needs children to recharge the batteries in any way they can!

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  3. hi Jane. My son Ethan is 14 ,he has severe autism and learning difficulties. Before he came along I was a travel agent, I loved to travel in fact I lived and worked for my lovely holidays. I split up with my husband after Ethan was born, but when he was 10mths I took him and my other son abroad to Spain which was great, hard work but fun. Then the following year he became autistic and everything changed, I could no longer manage to take him and his brother for a full week away, it was too exhausting.I began to take UK family caravan holidays with a friend of mine who's daughter had become autistic. We found that 4 or five days was enough! The holidays were for the children, having a break ourselves never crossed our minds for years. Then whenEthan began going to respite around the age of 8 I used the time to take my older son away for some two night breaks. We got to Ireland, Budapest, Amsterdam and then a 4 nighter to Spain. I felt that I was getting a little bit of my life back, whilst spending quality time with my other son! We still did the seaside caravan holidays so Ethan got a nice holiday.By this time I had met my fiancé who has three children, so the seven of us have regular caravan, cottage or lodge holidays in the Uk. We have only flown once with Ethan to Ireland, being a nice short flight meant less stress though he was very noisy and alarmed a few people . He is now 14, his sensory difficulties cause him to lash out, shout and he is hard to control. We were going to try a week abroad this year,maybe hire a villa, but at the last minute I booked a lodge in Scotland. If I could afford to hire a carer for a week I may consider taking Ethan on a plane but at the moment everyone gets so stressed if Ethan gets upset, not a good way to start a holiday! We,re hoping to take the children on a short break to Spain when Ethan is at respite this summer. I think you just have to go with the flow, and do what's best at the time for your family. The little breaks I have when he is at respite is what keeps me going. I know he is happy where he goes, And I know a city break or just being in a hotel is his idea of hell! Shelagh x

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    1. Hi Shelagh, it sounds as though you've achieved a very good balance for your whole family. We hired carers from an agency during a holiday with extended family in Devon. They did just enough hours that we could eat out a couple of times & do activities with the other children that we wouldn't otherwise have been able to do. It took some planning but worked out really well. Jane x

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    2. Hi Jane that sounds a good idea! Something I will definitely plan for the future ! Shelaghx

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    3. Let me know if you do eventually try it. I'd be interested to see it goes for you & your family too x

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  4. I think there often is a gender divide about holidays with and without the kids. Even before Smiley came along, my (now ex) husband desperately wanted to have the odd holiday with just me and his parents seemed happy enough to mind my eldest daughter. I hated leaving her. Yes I could enjoy the time while I was away but I wished she was with us too. Then after Smiley was born we got one night away in a hotel in Ireland and paid her babysitter to mind her and stay overnight. This time I really enjoyed the break as I badly needed it, so I can see both sides x

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    1. Yes, you're right. Got to be compromise on both sides. Not easy! x

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  5. my son 15 ASD/SLD obsesses about going away but once there obsesses about going back home! eg waking up in the night and going to point to the suitcase.

    there have been disastrous times away as a family. particularly with now ex who could not cope.
    and ages about four to seven when communication (now via ACC) was not yet well established and frustrations were bigger as well as more sensory outbursts .

    now have a routine of four to five days annually near my parents in north wales employing a daily carer to assist on outings and /or go off for walks etc with him (via mobile creche co http://www.mobilecreche.biz/about-us.html who have provided us with a series of fantastic people for the past nine years!) paid for by his DP account.
    then while he is at respite for a long weekend or four-five nights in summer hols I take off with daughters (now nearly 10 and 12) in uk or near-abroad.

    if we can, another four or five day break with son but taking a carer with us eg center parcs. carers agree center parcs works well for all. a caravan in remote-from-town location was not so successful from carer point of view - no where to easily go. the allure of a mini town centre with starbucks in center parcs plus great swimming pool holds more appeal.

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    1. Hi Natasha, Chrissy's just the same! Grass is always greener :-) Sounds like you've got the balance just right. Great that you use the respite time to enjoy a break with your daughters. Thanks for sharing x

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  6. Cindy gilbert says: 'My 2 boys, Kyle and Ryan, are 10 and 8 1/2 now. I take them on holiday frequently. Every year, in the summer, we travel from Reno, NV to Albany, NY (where I grew up) for 3 weeks. We also take them on 2-3 other, shorter, holidays during the year. I always travel with my parents, or at least my mom. The airplane rides can get difficult, but we sit in the last 2 rows, so as not to disturb too many people and they each have their own device (iPad or DVD player) to keep them occupied. I think it's important for them to experience new things and new places. I always plan these holidays around the boys. What they want to do, not what I want to do. In my experience, it is the only way to travel with them. We do a little something each day, not too much. This way they are not overloaded. They seem to enjoy the time away from home, school and therapy.

    My husband and I also take time for ourselves. Either my mom or his mom will come to our house to watch the boys, while we go away for 1-2 weeks. The "moms" don't mind doing it, because they know we (especially me) need the break. I don't mind leaving them, because I know they are in good hands and I need the time away to unwind and relax. This has worked well for us and we have been able to visit Hawaii, Florida, Germany and Switzerland in the last year.'

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    1. Sorry you couldn't upload your comment Cindy. It's great that your parents help out so you have a chance to recharge your batteries & that you manage to take the boys away too. It's so heartening to hear how many of you strive to do things with your children & for yourselves that 'typical' families take for granted. I know how difficult that balance is to achieve.

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  7. We last took a family holiday in February of last year (2011) just o Ireland to visit family. We ended up having to call an ambulance for H while we were there and the hospital was 45 minutes away (20 as we were blue lighted in), it was terrifying. My fear then was how to get home, what if he stopped breathing on the boat?last summer our paediatrician advised us that it wasn't saf to take him somewhere where we couldn't get to a hospital quickly. Things are beginning to improve and I do hope in the next few years we could look at going away again. As yet we are too scared even to holiday in this country, though the destination might be close to a hospital, we worry what happens if he stops breathing on the motorway. Instead we have each had short breaks separately in Ireland with our eldest son.

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    1. It's amazing how we manage to find a way round a seemingly impossible situation. I do hope you manage to take H on holiday again - this time without any medical dramas! x

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