Summer is here at last. Best of all, it’s a Saturday. We don our sandals, put on sun cream and sit in our garden. I can see my five-year-old beaming as she looks up into the sky (birds flying really high) from her favourite spot before skipping down towards the plants. A fleeting moment of perfect happiness.
Many parents seem to have the luxury of time this summer, hosting barbecues, taking their children to playdates or birthday parties. But for our family of three, two working parent household with one child with additional needs, summer is even more of a juggling act than usual.
My daughter, a smiley girl who squeals with delight when she goes on the swings, who loves chocolate, playing with water and spending time outdoors, is amazing and extraordinary. I do not believe she should be defined solely by her Autism. Nor should it define us, as her parents, despite this condition shaping much of our everyday lives, from weekend outings to holiday preparation, attempts to make new friends and meals to be cooked. But I am not sure everyone understands this, and so as she grows, so does the space around us.
I want to fast forward the prolonged hiatus of the summer, even if I love the warmer weather. Because, you see, most of the year, my daughter attends an autism specialist unit, combined with some time in a mainstream environment. My girl has gained some skills and grown in confidence. She is happy and so are we, thanks to the amazing staff who are specialists in what makes her tick and are willing to put in the work to make things happen. Like seeing your child point for the first time or match cards and shapes in a simple game. It is those small moments that have transformed our lives and lifted a weight off my shoulders.
At times, it seems that our efforts to live a family life as full and ordinary as possible are turning us into fishes swimming furiously against the current. The world of special needs doesn’t seem to be set up for working parents. I have seen time and again how in most households one of the parents (often the mum) is a stay at home parent or holds a part-time, working from home job. The social get togethers, so important for psychological well-being and to meet others who understand, take place mostly during school hours, as do the ASD parenting courses.
I feel anxious when I think of the weeks ahead, and the hastily arranged childcare plans put in place for my daughter. Because our jobs are quite far from our home and we work five days a week, we had to turn down our local special needs playscheme, offering us a place for one day a week only. It is hard to find another provider who understands my girl’s needs, someone who gets ‘presuming competence’, PECS, sensory processing issues. I find myself having conversations with council staff during my lunchbreak, visiting settings after work and keeping my fingers crossed, because I have run out of time to seek alternatives. Daily routine involves more complicated steps and relies on transport running like clockwork.
Work is a necessity not only because of our financial circumstances. It is about the psychological well-being that it brings to us parents, the parity of two in a relationship earning money and contributing to the bills, the opportunity to help others. It reminds me of the whole person I am, with my ambitions for the future and the richness of my contradictions. So I don’t want to feel guilty, even if I do feel at times thinly stretched on the ground, wishing I had the superpower to be in two places at the same time.
So far, my daughter is taking it all on her stride. We are lucky enough that the weather is nice and dry, so she is able to spend time outdoors most of the day, bouncing on the trampoline or riding a scooter, where the echo of children’s voices won’t be there to provide a sensory overload.
And every five days, we will make time to enjoy another wonderful weekend, exploring the local parks, watching her bounce on the trampoline in our small garden and indulging in the occasional ice cream. Because, what is summer without a treat?
And it will get us a little bit closer to September.