Additional Needs
I don’t want the care. I need it.
by Sharon F
on 29th April, 2024
The Normal Family
How I laughed. I probably laughed a little too loud and a little too long.
You see, one of the things that ‘Special Needs’ parents (for want of a better phrase) grieve over, in addition to the ‘loss’ of the child they were expecting to have, is the ‘loss’ of the normal, perhaps idyllic even, family life that they were expecting to have.
Even in those days, before Freddie was born with his (apparently) family-destroying diagnosis of Down’s Syndrome, that (apparently) promised lay waste to any hopes of normality that we could ever harbour (heads up, folks – it doesn’t), we weren’t quite a ‘normal’ family anyway.
From the outside we must have looked like a regular, Ladybird book, Topsy and Tim, ideal family (only without the robotic, slightly glazed-over, patience of the mother. I’m waiting for the series where she finally flips her lid and starts setting fire to things).
A mum and a dad, only ever married to each other; two children, a boy and a girl; a three-bed semi with a family saloon on the drive; we even had a cat just like Postman Pat’s Jess.
I’m sure when we first moved in we must have looked to the neighbours like any other, ‘ordinary’, young couple.
They did not see the mother of one of us, who came to help us move in, become extremely agitated when I placed tins of cat food on the ‘wrong’ shelf in my cupboard.
If they had they would not have been alone in not understanding what the problem was. I didn’t either. Not then.
They also wouldn’t have been aware that sometimes, on lovely sunny days, my husband could not comfortably go out into the back garden, because he could hear the infinitesimally faint beeping of their car immobilisers, parked in the street out front, and the noise, inaudible to me, was almost unbearable to him.
After we acquired children, I, Mummy, stayed at home while Daddy went out to work. I didn’t wear a frilly apron, but I did bake things.
Anybody peeking in through the kitchen window might have concluded from the fruit bowl that our favourite was lemon sponge, or that I enjoyed a refined cup of lemon tea in the afternoons.
They would never have guessed that the reason there were so many lemons in the fruit bowl was because some members of my family like to peel and eat them like oranges.
That caused a few ‘issues’ at the school whose fresh-fruit-only snack policy couldn’t encompass the idea that a child who chose to eat lemons and redcurrants could find his senses so offended by more socially acceptable fruits like bananas and apples that he would vomit if he ate any of them.
It also didn’t encompass the fact that it took so much energy just for him to process the information he received during the first hour or so of the day, never mind to keep functioning in a ‘normal’ way like his peers, that by morning break he’s be shaking with hunger, despite having had a good breakfast, and a bit of fruit just wasn’t going to replenish him. He needed carbs.
It didn’t have to be a sugary snack, if they’d just let me provide him with unsweetened Scottish oatcakes he would’ve been fine with that.
But no, it had to be fruit; they couldn’t change the rules just for us, even though everyone at the school was very well aware that we were not ‘normal’.
No one at my daughter’s school was aware of this, though, as we had sent her to a different one, so that she would have a chance to be judged on her own merits, to be treated as a typical kid from a typical family, instead of being automatically tarred with an unfair brush.
This seemed important when she started school. But then an accidental breach of confidentiality during a meeting at my son’s school allowed another mother to become party to my son’s diagnosis, because her son had the same.
This lead to me being invited to a Parent Partnership coffee morning, where I discovered that there were actually a few of us, apparently, "chocolate-box", families, that didn’t quite fall onto the ‘normal’ spectrum.
One or two were faces that I knew, but I’d had no idea they were facing similar challenges to us.
Then the husband of one of the Alpha Mummies, a woman who treated me with a particularly nauseating blend of pity and disdain, developed a case of blabbermouth, and let slip a few secrets during some locker-room banter that my husband overheard, and, uncharacteristically, shared with me (he couldn’t stick her attitude, either).
Neither of us ever breathed a word to anyone else, but we basked in the secret satisfaction of knowing that, in any person, and any aspect of life, the veneer of perceived ‘normality’ may only be skin-deep.
By the time Freddie came along I was quite at peace with the idea that family was ‘different’, an adjustment perhaps made easier by the fact that neither my husband, nor myself, come from the perfect Mum + Dad + 2.4 kids model of nuclear perfection.
In my husband’s family there were three kids and one adult, and not another living soul anywhere nearby who was related to them.
The only adult worked two jobs to make ends meet, so often the younger children were looked after by the eldest.
In my family, however, there was just one child, but three adults, because my Gran lived with us.
A childless aunt and uncle lived across the road, and I spent a lot of time in their house, and sometimes went away with them for the weekend.
Even with all this handy, free childcare, sometimes my mother would be so overcome by frustration that she’d try to ignite the doormat, or something.
I’d never heard the word ‘divorce’ until 1977 when my parents parted. Now divorce and ‘blended families’ are common.
Eventually my Gran developed dementia and was cared for by my mother.
In the adjoining house there lived a lady even older than my Gran; but in her case she was the carer: for her adult daughter who had schizophrenia.
In the house on the other side lived a man, with two women and several children whose relationship to him we could never discern. They had an extravagant collection of cats.
Prior to that the house had been occupied by a middle-aged couple, who kept two dogs and a goat (bear in mind this was a town house in the middle of the city).
The more I think about it, the more I realise how few of the families around me have conformed to what my daughter’s little classmate, and many other people, would consider ‘normal’.
All around us are (and always have been) families of widely differing shape and circumstance.
There are grandparents who have taken over the care of their grandchildren. There are children who take care of their parents.
There are families with no children, and there are people who are separated from their blood relatives by some unbridgeable gulf, who make family from the friends they have around them.
I don’t think it is only ‘Special Needs’ families (that phrase again) who grieve over the failure to achieve this iconic state.
However, as for me, I refuse to believe I have been robbed of, "normal", family life, because we are just fine.
