Bringing up a child with special needs is no mean feat; doing it as a single parent on medication for depression makes it quite a challenge to be mastered – and you never feel remotely on top of things.
The plan has been for a tutor to come to our home Mon, Weds and Thurs to provide learning for Daniel. This is vital, since he has been unofficially excluded from the education system for 6 months now.
As I came downstairs earlier, the babysitter said, “He’s just been threatening us with a screwdriver.”
So shocked was I that I laughed. “It’s not funny!” Hissed the babysitter. “I know it’s not fucking funny,” I hissed back, “But what do you do when you come downstairs and someone tells your that your child threatened them with a screwdriver?”
I went for a walk because the tutor wanted some time alone with Daniel to see if things might work better, so the babysitter came part of the way to the High Street with me. I know she is on my side, and I know she understands that shock can produce some unexpected reactions.
I returned from my errands and sat down with the tutor and the babysitter because we may have to reduce the tuition time and build it up slowly, over time. The tutor asked about the situation with the Local Authority and Cranmere Primary School, on whose roll my son remains.
“You need to speak to the Head of the Board of Governors,” said the tutor. It is, surely, illegal to exclude a child and still have their name on the roll. I told the tutor and the babysitter that neither the school, nor the Local Authority, nor the Media seem to be interested in this glaring fact.
I will indeed seek to meet the Head of the Board of Governors at Cranmere and the Headmistress.
Ain’t this situation just a gift that keeps on giving!
More than six months on, we have only just received funding for home tuition; we only just have a new draft EHCP; and we are discovering more questions to which we need answers, and my son falls further and further behind academically, not to mention the lack of a social context that, coupled with fear, makes a little boy threaten people with a screwdriver.
That’s MY little boy: the light of my life. Tell me, folks out there; if that was your child, how would you feel?
Whilst trying to absorb the shock that my Little Bear has threatened two adults with a screwdriver, I am seated with the aforementioned tutor and babysitter, with my son on the nearby settee, listening to the tutor talk about how far behind Daniel is academically, and asking me whether it is not illegal for a school who let a child leave still to have his name on their roll. “Have you spoken to the Head of the Board of Governors?” Asks the tutor.
“I’ve spoken to the business manager or the school,” I say, “And she tells me that it isn’t so much a case of tem receiving funding for a child, but of funding being ring fenced and then somehow ‘clawed back’ if it turns out that the child was not there. Although,” I add, “I’m not sure you can claw back something that you didn’t receive in the first place. I wonder whether the school has, in fact, had funding that was intended for Daniel, but used it for other things.”
“You need to ask for a meeting with the Head of the Board of Governors,” says the tutor, “And the Headmistress needs to be there, too.”
It is still sinking in that my son has behaved threateningly towards the tutor and that, when I try to argue for some clemency owing to his exclusion from education entirely for six months, I am told not to justify inappropriate behaviour, whatever the child’s wiring. I remember the conversations with Xavier at the gym, in which he suggested that I learn a system of defence for when Daniel reaches puberty and the addition of testosterone makes him stronger than me. I recall anothe conversation with Xavier, in which he said, “Rachael, you’re a hero for the way you deal with things; but you need to make the right phone calls now; you need support.”
Indeed, the training that I had undertaken, which I see in retrospect as a focus on external ‘manageable’ goals: becoming a fitness instructor, and a Bodypump instructor, I have had to relinquish on account of stress hormone, cortisol, reacting badly and diminishing my serotonin levels. Just before Christmas 2018, struggling with the external directives to ‘be jolly’ I put my own Fluoxetine up by 20mg a day, and this has been agreed by my GP as sensible under the circumstances. I honestly wonder whether it would be easier for me to oversee the Brexit process, and I consider, in the few quiet moments that I get, dropping Theresa May a line and offering to help her to grow a massive set of gonads.
WhatI told the tutor yesterday, with the babysitter nodding because she already knows, is that I have written to the Local Authority on several occasions asking why funding for my son is earmarked for the school that, with the case worker’s help, let my son leave; indeed, facilitated his leaving. I have written to the Department for Education; Dominic Raab MP; I have had correspondence from Mary Lewis, Councillor for Childrens Rights; I have approached all of the newspapers; I have blogged, I have telephoned schools and the Jisaw Trust and social services and the Childrens Rights and Quality Assurane wing of the Local Authority – I have sought to put a rocket up the backside of anyone and everyone who has anything to do with the fact that my son is being denied his legal right to an education, and the upshot is that you can’t make zombies jog.
I am exhausted with explaining this; I am exhausted and distressed by the introduction of a new element into our home – a tutor – which scares my son enough to produce these fearsome behaviours, and I am exhausted with the tension that these ‘incidents’ generates, alongside fear for my son’s academic prospects and the implications for him later on in terms not just of independent living, but of harmonious living in society – a society which doesn’t appear so far to give a fuck about him.
After the tutor and the babysitter had left, and my mother had visited with Castor (my Wolfy shadow dog), I am left along to get the housework done: the worktops wiped, the laundry put away, the dinner prepared, the driveway cleared of rubble left by roofers and swept. These hard-labour tasks help me to feel slightly less bereft. When Allison arrives to babysit, I’m in my gym gear.
The gym is my Happy Place. Over the last two years I have found the key to coping and to stress-release and confidence; to better mental health in conjunction with my meds and adequate rest. I know people there and I like the buzz and hum and pounding of feet on treadmills, weights and heavy-lifting; healthy activity all around. I walk in and I see one of the cleaners, “Hey, how are you doing?” He asks, smiling. I smile back, “I’m here to burn off some crazy.” I say. On my way up the stairs I acknowledge another familiar face and, and at the top I hear Sammy say, “Bonjour!” I tell him that my son’s fear makes him act like a tasty geezer, and that I’m so tense and stressed a a result. “Go on in and do what you need to do.” He says.
I enter the sacred space. I weave through the interval class and find a treadmill with a view overlooking the swimming pool. I plug my headphones in and hit, “Go”. I get up to speed and run for 40 minutes, during which time I float off into fantasy, check in with my feet and legs and watch the people working out all around. After that I do 30 minutes of upper body weights work and Olivia comes to say hello. I tell her my day and she laughs at the shock and ridiculousness of it. I laugh, too. She leaves and I carry on with some dumb bells until I feel it’s time to stretch and then go home. I can breathe more easily; I walk taller; I may be down at times, but I’m not out. I’m doing this. I take my meds before I go to bed and wait up a little while until just after 10:00pm, when I give Daniel some more medicine for the cold that he has manifested today (and which may have fed some of the behaviour). I tuck him in and say, “Night night sweetheart; you know where I am if you need me.”
He frowns and smiles, “Of course I know where you are, Mummy; you’re in your room!” I know, I say, but he can come and get me if he needs me. “Night night little one, I love you.” I say. “Night night Mummy, I love you too.” He is my beautiful, amazing, precious Little Bear; I would, and do, walk through fire for him; I go through hell at least one a day, especially over the last 6 months while the Local Authority and the education system have jettisoned him without any regard for legality or even courtesy.
I get into bed and, after a while, he isn’t sneezing or coughing, and just before I fall asleep, think, “I’ll ride my bike tomorrow.”
ASD: on being a special-needs single parent 