As a parent of a child, or children, with special needs, there is a multitude of thoughts and emotions that you experience upon receipt of their diagnosis.
I went through a dissonant jumble of relief and enormous sadness – I think even grief. The fear that the vaguely imagined future they had ahead of them had somehow been lost, or at least had become far less certain. One of the positives, however, was a sense of hopeful expectation: support was finally coming.
Three and a half years later, we are still waiting and that sense of optimism and reassurance has slowly and inexorably seeped away. Climbing a mountain has always been one of my favourite analogies: after each stumble, rock face or energy-sapping section of scree, I have straightened myself up, taken a deep, laboured breath and kept on climbing.
Initially referred to primary care services for occupational therapy, speech and language, and psychology, after a year of waiting (and learning that the service we were referred to for psychology no longer had a psychologist) our youngest child (now 11) was seen by a consultant paediatrician. They felt that his complex needs – particularly for psychology – would likely be more quickly supported by the Network Disability Team (NDT) and a referral was duly made. His older brother (14) remained on the waiting lists for primary care services.
Severe anxiety and school refusal became a persistent problem
Running in parallel with this was the implementation of educational support, in keeping with the recommendations from their assessments of need. While our older child managed well in the school environment with minimum intervention, the nature of his brother’s needs were such that this was a place of sensory overload, struggle, fear and bewilderment – not helped by bullying that began in junior infants and was still making his life a misery six years later on. Severe anxiety and school refusal became a persistent (and totally understandable) problem: mornings at the school gate when he would cling to me screaming.
Glimmer of hope
I think my heart broke repeatedly and irreparably over that time.
While placement in a special school would likely be inappropriate for him, it became increasingly apparent that he could not survive in mainstream. There was a glimmer of hope towards the end of 2019, when we finally learned that he had reached the top of the waiting list for the NDT – we even had an initial parent consultation with an occupational therapist (OT) and physiotherapist – but then coronavirus arrived and everything stopped.
It always seemed extraordinary to me, just when all our most vulnerable children were thrown into a state of profound uncertainty and fear, and parents were striving exhaustedly to care for them at home, any faint support that we might have had was taken away. Before even beginning to work with our son, the NDT staff were redeployed to take on Covid-related tasks.
We were, once again, completely alone.
And as if this weren’t challenging enough, the sudden loss of school, while in sixth class and about to transition to secondary, proved totally devastating for his older brother and he imploded to the point where there were times that he could neither eat nor speak. The GP referred him to the Child and Adolescent Mental Health Health Services (CAMHS) for the second time in a year, but its advice was to refer him to the NDT.
Some 18 months later and here we are.
Following the second lockdown, our eldest became completely unable to attend school – his anxiety had become too acute. We are working with his fantastic secondary school to support his reintegration, little by little. I drive him in each morning, wait while he settles himself and finds the courage to go in (through the quiet entrance into the autism unit), and then I sit in the car for as long as he manages to last inside – usually between 30 and 60 minutes.
One morning, recently, he managed to leave the safety of the unit and walk the length of the main school ground floor corridor and back, a member of staff either side of him. He was silent and shaking all the way home afterwards, but went back and repeated it the following day.
I was so proud, I had to hold back tears as I drove.
Bullies
Our youngest has not gone back to school – I have registered him for homeschooling while we look for somewhere new, away from the bullies and ideally with access to a unit. Some mornings he comes with me to his brother’s school and we do his work in the back of the car while we wait. Then I juggle completing it at home with supporting his brother to get through any work that his teachers send him. Both need significant emotional support: we walk a lot – mostly in the local forest – which gives them time in nature and the chance to chat.
You can turn yourself inside out . . . and there is still no hope that the system will provide the support your children need
Our eldest is now on the waiting list for the NDT and has been referred, yet again, to CAMHS. His younger brother has the support from OT and physio at last, which is wonderful, and I’ve had fantastic advice and help from a psychologist through a couple of phone appointments, but I recently learned that there is no guarantee he will ever receive one-to-one support from primary care psychology through them, despite it being the very reason we were referred to them in the first place.
Trying to negotiate the system when many parents are already on their knees, physically and emotionally, is hard enough. But the fact that you can turn yourself inside out, day after day, year after year, and there is still no hope that the system will provide the support your children need, desperately: there are no words for how this feels.
As I type this, I realise that I am so exhausted, my words may well make little sense, but all I want is for my children to have the best possible chance at that vaguely imagined future.
I feel that I’m utterly failing them, but in reality we’re all being failed together.
– name of the writer is known to the editor