It is mid November. I am standing in a school room full of strangers, describing my daughter’s needs, so we can agree on the contents of what is still legally known as a Statement of Special Educational Needs. I have visited my preferred setting where she would thrive, but with cost cutting rife, my four year old has the odds stacked up against her.
Since her speech regression and retreating further into her shell, aged 20 months, I’ve been learning a new language. I am describing her needs with words I wasn’t familiar with two years ago. It is amazing how quickly you become fluent in another language and you adapt to new situations, new challenges, when the life of someone you love and care for so much is at stake.
I need all my energies to make it through this long, heart wrenching, agonising process of describing a thousand times how your life is different and how her condition impacts on everyday life in a myriad ways. I want to reconnect with the enthusiastic, warm, caring, glass half full person I once was. The careless Saturday mornings reading The Guardian. Enrolling her, at five days old, in our local Sheffield library branch. Instead, for a long time I found bitterness and anger and hopelessness choked me and it took me four seasons to shed them and regain a sense of balance and hope.
And yet sometimes, when I am tired from juggling work and being a special mum, even if I love her to bits and I am truly grateful that my husband is a rock, in some dark hours I remember how life once was and I miss how simple it used to be to go along with the flow, not be the ones swimming against the tide.
And if I go to sleep with a ‘why?’ choking in my throat, it’s because my life was once so different… I didn’t know a word about autism or sensory processing issues. If I wanted to take our family to a small, busy restaurant, all I had to do is get the credit card and go. We planned potty training for the optimum two and a half to three year window. We read her stories and bought educational toys. My daughter was going to be someone special and really bright. Perhaps a journalist, a doctor, a member of a dwindling group: a much needed politician-with-principles.
She gave amazingly good eye contact at two months old; at six months old, she babbled and looked attentively at a book. She wanted to be in our world and for us to go into hers All gone in the flick of a switch.
Sometimes I can almost feel the weight of her diagnosis, an intrusive presence, like watching a TV channel I cannot switch off. Autism has turned my one and only life into a game of two halves, pure happiness come draining marathon.I would have never come across some of the amazing people I have met along the way who helped me keep my head above water. Strangers come second family whose words, hugs and understanding comfort me in the not-so-good days.
Life is a steep learning curve. Like everyone else, I could do so much more than I once thought I could. You fall, you pick yourself up, you shed your skin, you grow a new one. The person I once was wouldn’t have understood my life as it is now.
I wake up with a heart full of hope and I feel our cocoon of love all over again, a smile in my face. She’s the best.