Although our Local Authority case worker has failed, over a nineteen-month period, to find my son an appropriate school place he has, ironically, succeeded in referring my son to something called ‘Access2Education’ (or A2E).
If you are a mobile telephony retail pop-up, by all means distinguish yourself using a jumble of letters and numbers. If, however, you have anything to do with education – or its lack – this is downright inappropriate. Interestingly, the characters of this organisation’s title signify all the more potently the discrepancy with which we are faced: my son is alienated from other children and from education full stop. While babysitters and I do what we can to plug the gap and encourage some learning activities with my son, it is more than just a poor substitute – it is an outrageous kick in the guts.
‘A2E’ operates to enable children who cannot currently attend school (due to relocation, physical impairment, exclusion due to behavioural challenges, being in or out of Care and so on) to engage in activities which are, shall we say, didactic. My son and another child are the only Primary School attenders, and the other child was off sick on Tuesday, which made it seem as though my son is the only child not in Primary School in the country. I know that this is not the case, and that there are thousands of people in precisely our position, but it is of little consolation in the face of the epic shambles in which we find ourselves embedded.
I considered refusing to bring my son to this unit, or facility, or whatever it is, in order to try to provoke threats, by the authorities, of legal action against me, towards which I feel I have considerable counterpoise. But my son is bored and misses being in school; what right do I have to cheat him out of extra stimulus at this critical time? I feel we have been press-ganged into our present predicament, but it is perhaps some compensation to my son for the boredom and cabin-fever brought about by the situation entire. I acquiesce, and bring my son twice a week, for two hours.
My hackles have been up ever since this referral materialised and, on being introduced to the ladies who preside over its delivery, they have risen further. The lady who encourages my son to perform activities (which are very good: baking, marble-run construction, some reading to follow) is well-versed in working with children on the autism spectrum and this is something of a breath of fresh air. But the goody-goody virtuousness of these women irks me. I spent Tuesday morning being advised to make myself scarce in order to ease the transition, for my son, from being at home with me to being in a centre dedicated to learning activities with other adults. It’s only for two hours. While I can see the advantage of the plan, I object to being told what to do by some do-goody beyond-reproach politically-correct bint whose exaggerated gestures (for my son’s benefit) simply make my fists itch.
She was explaining to me, on Tuesday morning, how my absences would aid the transition for Daniel, and how it would be good preparation for when (finally) he does get a school place and I have to drop him off, and I was nodding away, agreeing because it’s the right thing; but when I said, “I take your point but, owing to this situation his attachment to me is greater and, as his mother, I know that ‘slowly slowly’ is the right approach,” and when she replied, “Oh yes, but it would upset him if we had to accompany you off the premises” I leaned in closer, and said, “I’d like to see you try.”
All summer long we have waited for a school place; that is after the Case Manager and the SENCO at his old school said that his behaviour merited approaching more specialised schools. This is not the case: in fact, his old school were not prepared to go the extra mile to help to fund a dedicated Special Educational Needs Teaching Assistant to enable my son to go through Year 3 and onwards at the school. I thought that this was fair enough at the time, because being the one child with special needs in a class of 30, and being sent to the Headmistress every time a piece of autism-spectrum unpredictability occurred and asked to write letters of apology rather than having someone trained to help him to cope take the time with him to help develop calmer living strategies is not at all a good scenario. The school were simply not the right one for my son. But to make out that his behaviour meant searching for a more specialised school rather than to urge the case manager to correct his failings and go back to schools he had already approached, and impress upon them the urgency of the situation and the Local Authority’s legal and moral obligation did two things:
It made my son seem more ‘severe’ or worse than already diagnosed; it made it seem as though he could not integrate with society at large and must be marginalised from an early stage; it made it seem that nowhere mainstream with support could touch a child like him, because he was even more ‘special needs’ than we had originally thought. It made me negotiate yet another bit of denial about my son and his wiring and his abilities to live peacefully along with everybody else, and to question again the extent of my knowledge about my own child.
Had I been so wrong about my own child?
In early September, when the Autumn term began and, with it, Year 3 for many children, my son overheard the sounds of his old school friends playing from beyond our back garden and said, “Mummy; when am I going back to school?”
The second thing that the school’s SEN team’s handling of his case has done has been to bring home to me the reality of my situation when it comes to stress.
It came home to me that my son was not only not in school, but that the search for more specialised environments for him was – is – mismanagement: these new, specialised schools are not the ones for my son who, though a little tantrum-thrower and drama-queen when my mother and I are in charge is, after all, a little boy of seven years old and an only child and, as such, will take his chances and try as hard as possible to get his own way. That he has autistic wiring means that he is lumbered neurologically with a high level of fear: of learning and – significantly – of getting it wrong.
I was the same. I would rather not have tried the work altogether than risk failure. I went all the way through mainstream school with a sense that I was somehow deficient and disabled, and believing that the only reason that my parents didn’t tell me that I had a learning disability was because they reasoned that I would do better overall than if I had known about this thing that was wrong with me. And I somehow muddled through to A-level where, suddenly, things just made better sense to me. And I did well.
If only I had had support.
I have gone from praising the support that my son was receiving at the old school to feeling dumped; manipulated. Just under eleven years ago a severe traumatic brain injury has left me differently well, wired. My original wiring was none too mentally well; but since the injury it has elevated the effects of a neurochemical imbalance to the point at which I have suffered several breakdowns. Thankfully, I was placed on the right medication three years ago, and this has enabled me not only to be a better, more emotionally available mother to my son, but to find other strengths that I could only ever dream of in my ‘former life’: I can lift weights. This sustains me physically, mentally and emotionally; I have better coordination, greater self-esteem, more confidence in myself. This body and this brain that had used to let me down all the time are now, when all is well, a finely-tuned partnership of strength, emotional and mental stability and – best of all – for the first time ever in my life (aged 45) I no longer apologise for my very existence.
However, at the beginning of September, when it became clear that there was no school place confirmed for Daniel, I began to feel frayed at the edges. I began to skip classes at the gym and, on one occasion, my trainer left me in order to get another piece of equipment and returned to find me in tears. She was amazing; she held my hand and said, “Oh honey, I’m here.” After a few moments she asked me if I felt okay to continue and the answer that I gave her confirms that I am on the right medication and also the benefits of training: “Yes,” I said, “I’m not going to let this crap cheat me out of achieving something good.”
I went on to deadlift 50kilos of iron. That, dear reader, is a hitherto undreamed-of event. Not only did I never dare to imagine that I could attempt such a thing, but I wouldn’t have credited myself with the capabilities to accomplish it. Not spindly, crappy, never-skinny-enough chronically-fatigued not-very-well Rachael. Now I am ‘Mummy Muscle’ as Daniel calls me, and I love it. But, up against a situation such as this, when the flow of stress-hormone cortisol saps my motivation and leaves me exhausted (whilst interrupting my ability to sleep), I have had several occasions on which I simply haven’t felt able to carry on.
I woke up yesterday from a night’s inadequate sleep. I negotiated, in a fog, breakfast for Daniel and coffee for me; I had a quick bath, dried myself and got dressed hurriedly, absent-mindedly, expecting the Ocado delivery at any moment. I plastered on some make-up and I put some clothes out for Daniel on the spare room bed. I took delivery of the groceries: a pretty simple task involving sorting items into their appropriate cupboards, fridge and freezer. After this, Daniel decided to play the “I can’t get dressed without your help” card. He can, but he is determined to force upon us both the illusion that he is a baby, and so he kept this up for an hour, screaming at me every time I reminded him that if I helped him I would in fact be diminishing his own capabilities to do what, with practice, is straightforward.
He threw the kitchen roll and its holder on the floor, and began to tear off sheets, placing them almost neatly in a sea over the ground. He upturned the recycling tub and the contents seemed to be afloat on the kitchen-tissue sea; he swiped books and papers from the worktops and on to this growing scruffy archipelago. By now, I had grown tired of repeating the same phrase over and over and I noticed that it was about 45 minutes in to this tedious palaver. “Stop it!” I shouted, “You’ll end up believing your own bullshit! I’m not playing!” I began to pick up the litter and, after a little while of shouting “How dare you!” at me he went upstairs and got himself dressed. It was now time to leave for A2E and I hadn’t had time to eat breakfast, so I drove all the way there breathing hard, thinking, it’s no use fighting these people; they have the best intentions, I’ll have to go along with this.
I managed to get out and go for coffee; I even managed to find a poster of the map of the world for our dining room/snug wall, and a decorative flint heart to hang in the kitchen by the kettle. I felt quite pleased, and even quite grateful to A2E for giving me this breathing space. I ate breakfast. I stopped, on my way back to collect Daniel, to gaze into the window of a sportswear shop, imagining myself in the gym or on my bike in various pieces of apparel. But, as I walked back to the centre, my head began to fizz and my legs became more leaden with every step. I breathed more shallowly and felt more frail, diminished.
As I drove us home, the knot of uncried tears rose inside and lodged above my scapula. I swallowed hard and breathed out, “huff”. I made Daniel’s sandwich in a dream and placed his lunch on the coffee table in the lounge for him. The knot was loosening, and I was gritting my teeth; I picked up the phone and said to Mum, “Can you help me?”
She came to collect him for the afternoon almost immediately, and I got into bed, aching inside. I wanted to cut myself in the hope of bleeding out some of this pain, some of this knot of tension, tears and overwhelmed frustration. I think I slept, but I’m not sure. At 5:00pm a text message announced that Mum was bringing Daniel home. I got up and made myself a cup of tea, feeling less substantial, more rubbed-out, like a fizzy vision rather than a real thing of flesh and blood.
Daniel was adorable and eager to help; I made us toast and jam and we competed with each other on various games on the ‘phone and iPad. Towards his bedtime we both grew fractious; Daniel tried the “I can’t get changed without your help” game again and I said, “Not this again; you can do it yourself, I’m too tired!” Daniel threw one thing and I upturned the recycling tub this time, muttering “fuck this shit” through gritted teeth. Daniel stomped upstairs and I sat in the kitchen, crying. He came back with his pyjama tee-shirt on the wrong way round and said, “You see? I can’t do it!” I said that this was a minor mishap and that he had made good effort, so I willingly helped him to get his arms out of the sleeves and we turned his tee-shirt around.
He brushed his teeth and I put my glasses on, hoping to hide the tears. But when he got into bed and I opened the book I was too choked up to read. I said, almost apologetically, “I’m not wired like other people.” He began to cry, too, and I tried to reassure him. “I love you so much,” I said, “I hate it when we fall out and aren’t friends,” I get so tired, I said; one bit of stress and I can’t stay awake properly, or do very much at all. “I love you, Mummy,” he said, “Me too.” Anyone who says that people with autism lack empathy are wrong; they sometimes ‘get’ the impact of something; Daniel sometimes connects emotionally, though it takes a while. Thankfully, the day ended with us in harmony and, though sleep was a bit of a lost cause, I managed some and I managed not to sweat the problem too much. Perhaps I was just too tired.
ASD: on being a special-needs single parent 