Thursday, 12 April 2012
High Days & Holidays
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