SINGAPORE: In the world of disability parenting, I am considered one of the lucky ones. My teenage son has a school place, and I work flexibly, from home, as a writer.
Our mornings begin around 7am, as I coax, support, calm, cajole and patiently (or not so patiently) wait during each of my son’s transitions from awake to the moment he walks inside his specialist school. He no longer copes with school transport, so I am parked in the bus entrance of his school with a teaching assistant gently trying to get him inside.
He may have slept all night, or maybe only one hour. He has a neurodevelopmental and learning disability – and he is also a teenage boy. Which is the cause of these tricky mornings is anyone’s guess.
I get to my desk around 10am. My days (alongside work) involve appointments, admin, chasing email responses from a variety of teams my son relies on to access school, health care and the world around him. It would be a full-time job, except I also have an actual full-time job to pay our bills. I never feel on top of either.
He is dropped home before 3pm, and for the next few hours, I juggle his needs and the demands of my laptop. The evenings are long and he needs my support with almost everything. I am lucky if I am asleep by midnight. Somewhere in the short time he is out of the house each day, I also need to exercise, run errands and reset the house from the meltdowns that tear it apart.
I am so very tired – and I cling fiercely to any and all respite I get. I squeeze as many tiny joys out of my days as I can – creative work, a walk in the sun, a good book.
While his early years were fraught with isolation and fear for what the future held, what we experience now is both easier and harder. I worry far less about things that used to keep me awake at night. Will he ever speak? Not much. Will he ever make friends? Not with his peers, no, but with adults willing to meet him where he is, absolutely. Will he ever work? No. Will he ever be able to do the 24-hour flight to see my family in Australia? No. This one still hurts, but it no longer occupies my monkey mind at 3am. It turns out, when you take uncertainty away, it is easier to accept a life you never imagined.
Facing new challenges at every stage
While a lot of the big worries no longer cause my sleepless nights, they have been replaced by others. Will I lose the meagre hours I can get alone each day to work from home, just as I lost my first career? Will my world remain fixed to his ever-increasingly rigid routines? Will he seriously injure me?
With his increased size (he is now a head taller than me) come new challenges. A kick and headbutt from a frightened 16 year old is more dangerous than one from a six year old. Meltdowns are physically terrifying, and my other teen spends a lot of time with their bedroom door locked.
When my son was small, a well-timed piggyback could prevent him from running into the road. At the time a friend asked me what I would do when he was bigger. The answer? None of us has any idea how we will do anything with our adult-sized disabled kids. We must find new ways of coping as we go.
Blood tests, vaccines and routine medical care used to be administered with a combination of silliness and force. This is no longer possible. I am starting to see in real time why people with learning disabilities die an average of 20 years earlier than their non-disabled peers from preventable illnesses. If, at 16, you are already struggling to access basic health care, what happens as you age?
His current health care plan consists of “let’s just hope he never gets sick”, a method that failed us this winter when he fell apart spectacularly. Without the ability to tell me what was wrong, it took a broken television, a broken car windscreen, many sleepless nights and a black eye (mine) for me to figure out the problem. A vague memory of a friend with a parent with dementia talking about the extreme decline caused by a urinary tract infection came to me. Desperate, I got an emergency GP to do a test on nothing but guess work. Low and behold, the infection was there.
I wept from relief and also terror that such a simple infection could upend our world so completely. Exhausted and injured, I started the new year far from rested, feeling like I’d done 10 rounds in a boxing ring and more certain than ever that I cannot do this for the rest of my life.
It was many years ago that I understood that I had more in common with those supporting a parent with dementia than I did with parents of typical kids my son’s age. Although my son’s disability is not progressive, it is filled with similar unknowns. The challenges he has processing information means he finds the world and anything new extremely stressful. Safety lies in predictable routines and familiarity. Fear causes outburst, and outbursts cause him even more distress. He hurts me and he hates to hurt me.
An uncertain future
One of the paradoxes of being a carer to a child with a severe learning disability is that, while they cannot cope with uncertainty at all, we must deal with extraordinary amounts of it.
The school they go to is named by a panel of experts and written into a legal document (an Education, Health and Care Plan, or EHCP). That school could be miles away. We are currently awaiting the results of his post-16 school consultation. After nine years at his current specialist school, out of the blue they told me they can no longer meet his needs. I thought he would be there until he was 19. It was a bomb exploding in our lives. What was once reliable, fixed, is no longer.
People who will never meet my son will read reports and decide his, and by turn, my, future. I could be in the car for hours more each day, a task that would chip further away at the time I have to work, to breathe. Or worse, I could fail to safely get him there at all (the car is a dangerous place to be alone with him). I cannot move boroughs or counties or change my child’s school without these panels of experts, and likely educational tribunals and lawyers, as well. My future is not in my own hands.
Social workers assess his needs and mete out meagre parcels of support based on what’s available. All reports are written by those employed by the same councils who hold the purse strings. There is no true impartiality. The message is “be realistic” or, my personal favourite, “other people have it worse than you”. Over the years, many professionals have implied that when I secure something for my son, I am effectively taking it away from another child in need. To be a good mother, therefore, I must be an awful person.
And it’s this uncertainty, caused by ever-changing rules and budgets, that causes parents like me the worst stress. As we try to navigate and understand the implication of the latest special educational needs (SEN) white paper, we know that it will bring still more uncertainty.
It may seem overly simplistic, but I just want my son to have a suitable school – and for him to be able to physically get there, and be safe and learning while he is there. It can feel as though I am going insane when I am told this is too much to ask. And I, and parents like me, are frequently told this – by administrators, by SEN caseworkers, by the media, by strangers on the internet.
I have also been told that by demanding that my son and young people like him deserve an education and access to healthcare, I’m being ungrateful. As a parent who supports a disabled young person, I also believe I deserve to earn a living and have some respite, so that our whole family is not thrown into poverty and collapse. Apparently, this is also too much to ask. Stay quiet, do the unpaid work, save the council money. My own health and financial future can be sacrificed in the process.
Disabled young children, and their parents, deserve better
There is so much in our lives I am grateful for. But I also believe disabled young people and their parents deserve better. I am tired of being told that to have a school place at all makes us one of the “lucky” ones.
If it were guaranteed that my son would get what he needs, now, into adulthood and well after I am dead and gone, my life as a parent-carer would be utterly transformed. An unfathomable weight lifted. Because my son is not the problem. Disability happens. It happens all the time. It is a part of the human experience. Not supporting disabled people on the other hand, is a choice we make as a society. And it is the uncertainty of not knowing what support will be there that keeps me awake at night.
My son laughs more than most teenagers. He is affectionate and loving. He cares nothing for social rules and norms designed to keep us all in our places. He can access joy in the smallest things and can let go of extreme distress with a speed that would put a Buddhist monk to shame. He cannot hold a conversation, but he has taught me things that change the way I see the world completely. Being his parent is filled to the brim with love and exasperation. It is also too much for one person. I am frequently brought to my knees. What is expected of me is physically impossible and emotionally unfathomable.
In our hyper-individualistic society, raising a disabled child has been anxiety-riddled, stressful and rage-inducing. But it doesn’t have to be. If only our kids were given what we expect all children to have, a childhood, an education, access to healthcare – a little bit of certainty around their basic human rights.