It is the summer of 2012. After five years, our small family is moving once again back south. We say goodbye to our lovely neighbour and our small, sunny garden, where our daughter used to play, spinning the wheels of her ride-on toy and lining up DVD cases.
We settle into our new town, where life is as good as it gets. I have a great job around the corner from our rented flat. It’s a golden, warm summer, and on weekends we do fun stuff together, like going on trips to the park, the lake and our local library. I have never been this happy before.
Until one day, our life changes. We receive an email from some friends we had met at the antenatal class. Their child is progressing well, engaging in imaginative play, saying more words every day. That day, for the first time, I know instinctively that my daughter is following a different path.
Soon, we get a letter calling us for a two-year developmental check, telling us what she should and should be doing. Unspoken anguish when I realise that we don’t tick quite a few items on that list, such as pointing. So I ask Google who, like the Rubbish Heap from Fraggle Rock, holds the key to knowledge. That day, for the first time, I learn that speech regression at any age is a red flag for autism. That a focus on spinning wheels is another classic symptom of autism.
It takes me three days to muster the courage to voice my concerns aloud, first to my husband, then to others. It takes me the best part of a year to overcome my need for denial, so that I can help my daughter develop.
The health visitor carrying out the check listens to our concerns and refers us to a speech and language therapist and clinical paediatrician. We wait for weeks, it feels like forever, stuck in a limbo cycle, alternating hope and despair, waiting for and fearing answers, all while drowning in the certainty and the inevitability of what we already know.
The much-anticipated diagnosis is handed out with much dignity. We go home with an information pack and no more tears. It was later that the long-term emotional impact hit me. Some parents go to Amsterdam instead of Italy; we feel alone in Mars. For weeks, I want to grieve for the child that could have been; the one whom I hoped would become an articulate feminist, a journalist, an honest politician. Anger, loneliness and immense sadness. It becomes difficult to hold on to your job, to maintain your friendships. Your old life, your hobbies and ambitions, your past identity, all disappear like a dot in the distance. You cling on to your soulmate, your rock.
Reaching out to other parents is healing and powerful. At last we are not alone, because other families’ struggles and successes mirror our own. My ‘sister in autism’, my friends, my online alternative family, keep me sane, hopeful and whole, teaching me to lean on good times through the rough ones, reminding me of my old motto: tomorrow is another day. Or, like they say, if life hands you lemons, wipe your tears, heal your soul, roll up your sleeves, breathe the stress out of your body and make some lemonade. You are not here to let nobody tear you down.
I must confess that, before my daughter was diagnosed, autism didn’t mean a thing to me. It was something that happened to others; something to do with Rain man. But I remembered that knowledge is power, and so my life became a steep learning curve. As a parent, it is essential to make the most of every opportunity to educate yourself about autism (through books and beyond), as well as taking time to find out what your child’s strengths and weaknesses are. From the Early Bird course, to attending the Autism Show, reading ‘More than words’, finding motivating ways to use a PECS choice board or discovering the fascinating world of sensory stuff with your child’s occupational therapist. And I cannot forget the home visits from the fabulous folks at AFSO and many lengthy calls to IPSEA about educational rights.
You will grow a thick skin when so-called experts don’t agree with you about what’s right for your child, driven by their own agenda. Be open-minded, civil, negotiate, persuade where you can, and always remember it’s not popularity contest, so don’t be afraid to put your foot down when you need to.
Sometimes you will bite your tongue because you can’t face explaining to bystanders again that yours is not a spoilt child, that she’s not ‘just like other children’. You may lose touch with some ‘friends’, because she can’t function at birthday parties, or you may catch yourself envying a colleague whose children ‘didn’t stop talking all weekend’ (while yours struggles massively with communication.)
If you work, life will become even more of a balancing act. Even though work will bring financial and other rewards, it will cause you some headaches, such as finding suitable after-school care or holiday clubs and maybe even accessing support at nursery, if your child was diagnosed at a young age.
You will learn what your child enjoys and develop your family routine, starting with a 5.30am ‘wake up call’, an 8am trip to the playground (even when it rains, several sensory-seeking sessions sorting out hairbands and hairclips in boxes and ending the day with your best rendition of the CBeebies bedtime song.
Time will pass, sometimes very slowly, others very quickly, and after many school visits, meetings, mediation and even an educational appeal, your child will start school in an autism-specialist environment. You will get a lump on your throat watching her hand you the PECS card for school during your holidays because she misses school (how many of us do this during holidays?). You will have a proud mummy moment (perhaps unnoticed by others) when she shouts ‘pitta!’ in a busy supermarket. And even if you try to anchor yourself in the present, at the back of your mind you will dream not of her being a journalist, but of starting a social enterprise to provide her with a job in the future.
And you will continue pushing her on the swings, finding sensory toys in charity shops, explaining things gently because she understands so much more than we know, playing ‘Let it go’ for her and putting the hairbands back in the box with her, as she learns and develops in a different way, at her own pace. Always hoping for a future where she can make a contribution to society in some capacity, be loved by her family and friends and be happy.