Friday 19 July 2019

Proudest day of my little girl's life was ruined for us

'Mild' in relation to disability should be a cause for celebration, but not in this country

Illustration: Tom Halliday.
Illustration: Tom Halliday.
Brendan O'Connor

Brendan O'Connor

So we sit facing the psychologist braced for the verdict. It will either be bad news or bad news. She is a nice woman and you can't blame her for the situation, but I find myself resenting her for what she represents. Even though I suspect she thinks that this is all as farcical as I do.

The last time I saw the psychologist I was answering really intrusive questions about my four-year-old. The psychologist, to give her her due, was apologetic about the questions. And I and my wife, to my shame, were talking my daughter down.

I talked down her ability to do everything from go to the bathroom to eat her dinner. I even told the psychologist something that I hadn't really told anyone else, something that I had not witnessed myself, but something that we all generally found too awful to conjure up by speaking it. In summer my little girl nearly died. As in, she probably would have if she hadn't had the incredible luck to have a heroic paramedic in the room, who only happened to be in the same place as her by total fluke. And he struggled, but he saved Mary from choking.

The psychologist had spent some time with Mary as well, insulting her by asking her to do things that were way too easy, and annoying her by asking her to do things that were way too abstract for any four-year-old. We had been warned since Mary was born about these tests, advised to keep her up all night the night before so she wouldn't pass.

And now here we were, and the psychologist was ready to pronounce. A verdict had been reached. It was the morning of my 45th birthday and I was sitting here in this slightly shabby building waiting to hear, basically, how disabled the State had decreed my child.

Mary has Down Syndrome, which, to most people's eyes, is, to put it crudely, disabled enough. It's certainly disabled enough for Mary and for us. It will mean that while we will hopefully have a wonderful life, she will not have what you might call a normal life. And she will always need, as we refer to it in our house, extra help.

My wife views this as meaning that Mary will always be dependent on the kindness of strangers. Because Mary does not really have a right to the extra help she needs. It depends on whether there is any will to give it or not. And boy do they let you know. They even deliver the extra help Mary requires through one of those HSE/religious/charity hybrids the State farms things out to, just in case anyone missed that this is charity. And, then, at the age of four, they ask Mary to jump through some hoops for them to prove that she is disabled enough to deserve their charity.

In their eyes, Down Syndrome is not disabled enough. Not on its own. If you want any extra help you need to have Down Syndrome and you need to prove that it's holding you back. They call that moderate.

If you met Mary you would notice the fact that she has a disability. I would like to think it wouldn't be the first thing you'd notice about her. But you would notice it. You certainly wouldn't need to get her to jump through hoops and ask her to prove that there are things she can't do. You wouldn't need to ask me and her mother intrusive questions. You would get it.

But the State doesn't get it. They need to humiliate Mary and her family in order to ascertain whether she is officially disabled enough to merit some extra help. They need to label her, and we have to play along with this labelling. It's disgusting really. Because we don't think of her in those terms. She just is who she is. We really only get reminded of her DS when we deal with officialdom. My wife used to joke that her worry about this assessment was that they would tell her Mary had Down Syndrome.

From the day Mary was born the word 'mild' has haunted us. No one ever talks about how disabled a kid is when the kid is small. They will say the odd thing like that she is "doing great". But there is really no such condition as mild Down Syndrome.

Different people with DS are, like all of us, differently challenged in different ways and different people have differing levels of health problems, and DS is a patchy thing. So a person can be good at some cognitive tasks and not so good at others. But no one ever says: "Your child has just a small touch of Down Syndrome."

But the word 'mild' arises. The odd person says to you, after you have "linked in" to the system, that Mary might be mild. But they quickly dismiss the notion, and say, "but, look, you can cross that bridge when you come to it".

At the beginning, in our innocence, we were confused. We thought mild was a good thing. But people spoke of it as if it was the worst thing that could happen. And gradually we realised why. You see, mild should be a good thing. It should mean that Mary has a better chance at an independent life.

But in Ireland, parents speak in dread about the mythical mild diagnosis. The mild diagnosis in Ireland means your child, at school age, is instantly cut off from whatever meagre bit of services they may have been getting. It means they will not get any designated resource teaching hours. It will lessen their chances of getting a special needs assistant.

If you have autism, a physical disability, a visual impairment, severe emotional disturbance or a speech and language disorder, you automatically get up to five hours a week resource teaching hours.

If you have Down Syndrome, you have to prove you deserve extra help. And if you are classed as mild, you get no hours of your own; you fight it out with the kids who have problems with spelling and maths for the school's general allocation of learning support hours.

But let's not get too technical. Basically, the mild diagnosis means no speech therapy, physio, occupational therapy, not that Mary gets much of that anyway. It means you can't even go to the friendship club, where you might meet other kids who have DS or another learning disability in common with you, where you can have a foot in the camp of one of your tribes. Mild and you are off out into the big world on your own with no extra help. The only problem being that you still have Down Syndrome.

The psychologist has a long report to present to us but she has the decency to get to the important bit first. Mary is mild, she tells us with an apologetic smile. And our hearts burst with pride for our smart and funny and plucky and determined and enthusiastic little girl. And then the anger rises. Not disabled enough, the State has said.

This one has potential, the State has said, so we won't be helping her out. And like so many parents before us we sit politely through the rest of the report, all the time thinking, now we have to go to war again. And what should be the one of the happiest, proudest days of Mary's little life so far is ruined.

Gene Kerrigan is on leave

Sunday Independent

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