We are just over one week into Son 2's summer holiday. Now we are lucky, because he gets a shorter vacation than most, four and a half weeks rather than the normal six, and we do have some respite. He will be attending a local special needs playscheme for two days, that is ten hours, a week.
Those hours are precious. They give a chance for us to recharge our batteries, for me to write. In the past I had to try to fit my own errands, as well as fun for Son 1, into the precious free time. It's easier now there are two of us around and of course Son 1 is independent, apart from the occasional lift.
Son 2 just doesn't do going out. He likes routine and familiar places, such as the playscheme which he has attended for years, but he has a huge fear of the unknown which permeates his life, whether at home or at school. This, of course, affects the whole family. For years now holidays and even day trips have proved impossible. We tried, we really did, but having to put your child through what is for them a form of torture is no fun for anyone, including innocent members of the public who happen to witness the resulting distress. As a child gets bigger the expression of anxiety becomes less socially acceptable and more difficult for carers to physically handle. And as children get older they can and should make their own decisions about what they want to do as leisure activities. But it is something that other parents, even those with differently affected special needs children, don't always easily comprehend.
Of course this time next year Son 2 will be under the adult social services team. His playscheme is run by a children's charity and not linked to his autism-specific out of borough school, so he may have nothing and that is a worry. It would be lovely to think that with maturity he will become more adaptable, but I seriously doubt that will happen.
For now we are spending our summer largely bunkered up in our own house and occasionally, as long as Son 2 can't hear any emergency sirens, the garden. I try not to get into conversations with friends about their wonderful holidays and fun camping trips. And I take vitamin D tablets to try to counter the lack of sunlight which is implicated in MS.
There seems to be an agoraphobic tendency running down my family, though thankfully one I escaped. We've developed our current approach to the summer holiday in order to preserve Son 2's mental health and existing behaviour levels, as a deterioration in those would affect us all year round, as well as his potential adulthood care. It's worth it.
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