Even people who know very little about autism know that most people on The Spectrum love routine. Truth be known, I think most people in general love it too. It’s comforting. Parents and schools spend time and effort trying to build routines for autistic kids and they thrive on them. Then suddenly, for six weeks over the summer it is snatched away from them. And they crash. And their parents crash.
I think you’ll find most parents struggle to entertain their kids for 6 weeks straight. We also have two very mainstream daughters, who love the holidays, but HAVE to have an
agenda. What are we doing today? Where are we going? Can I have? You all know the score.
Summer holidays fill most Special Parents with dread. Of course, there are fun times and relaxing moments, but there is always the lurking fear that their child will struggle
to get through. And this causes anxiety for all concerned. We’ve had summer holidays that have worked and some that definitely haven’t. Last year was great, we had regular carers for our son and I took the girls on holiday with their grandparents. My husband
also had a two week ‘break’. OK, it was a work trip, but it was a change of scenery for him. This year has been different. We don’t have any carers at all and we decided to try and take a family holiday together.
When our son was younger, he could tolerate being away from home. But in more recent years, he hasn’t coped and we’ve had to abandon ship. So, for the past three years, he has
stayed at home. It’s always hard leaving him and he spends so long looking at the holiday photos of me and his sisters on my phone. The guilt I feel when I’ve seen him doing this is heart breaking. So, this year we decided that we’d ask him if he wanted
to come with us. And he said yes. We booked flights to the Channel Islands to stay with family friends: we would give it a go.
So, the planning started. The countdown calendar, the social stories with detailed photos. We talked about it. Over and over. He talked about it with his teachers at school.
We couldn’t have done any more. He’s never flown before, but seemed really excited.
To cut a long (and extremely stressful) story short, three of us ended up home after less than 48 hours. It transpires he loves flying, but still cannot cope with sleeping anywhere
that is not home. You can do all the preparation in the world, but you cannot change a brain that is hard wired to reject change.
As he is now 13 and a half and a good couple of stone heavier than me, it is not possible to simply ‘calm him down’ like you would do a four-year-old. We had no option but to
abandon ship (or plane). Urgently. Pretty heart breaking for all concerned. Especially leaving our two daughters, when we had planned a week together. They still had a fantastic time with their grandparents, Auntie, Uncle and cousins, but it wasn’t what
we had planned. What everyone else can have. Or, should I say, most people can have. It was compromised. Like it always is, when you have a child with a disability.
So the three of us return home, to a week of rain and a quiet house, without the constant chit chat, bickering, mess and crappy 2018 pop music that accompanies our daughters.
Our son was visibly relieved to be home, so we could breathe a huge sigh of relief on that score. But it was too late for me, my sadness had already kicked in. Sadness, like Churchill’s Black Dog, that looms over us special mums every day. Why me? I can’t
do this anymore. Everyone else’s life is so much easier than mine. I just want a holiday with my family. And of course, social media didn’t help. Smiley faces of normal families….everywhere. I was seconds away from deleting the Facebook app, I tell you.
Which, if you know me well, is pretty desperate.
People tell me I’m a positive person. And that my blogs are positive. But sometimes, having a child with autism is, as a dear friend who is in the same situation as me once
described it, is ‘just shit sometimes’. And that’s all I can say about that. It is.
So, for a few days I wallowed in these shitty thoughts. Cried lots of real tears. Yes, us Warrior Mums do allow ourselves to do this sometimes. Despite all the Wonder Woman
memes that we pass around on social media, all the boxing glove and fist emojis that we tap into our What’s Apps and text messages to each other. We cry. We are jealous. We are bitter. We wonder what life would’ve been like if….well, we all know what if.
If I’m being honest, I’m still in this crappy place a bit. The sadness of the aborted trip will linger for a bit longer, as we struggle through the rest of the holidays.
After the tears had stopped, I started to quite enjoy the quiet house and some QT with my husband. Chilling out with the blond fella that we co-created. Reconnecting and relaxing.
Having a laugh.
I had a parcel of flowers and wine from my lovely friend who lives in my world too, visits and messages from my church family, and a brilliant book sent through the post from
my best university friend, along with a note saying she was sorry that the holiday didn’t work out. It was one of the best books I’ve ever read and the escape I needed. See, the positives – they are a-coming.
That’s the thing. There are always positives. Even in the bleakest of times. The sun will come back out, the black dog will go back into his kennel (good job really, if you
know my feelings about dogs), I will put my trainers back on and go running, school will start again and everyone will be happy back in their routines. But, it’s really OK to be a bit sad. We’re only human after all.