Tip:
Highlight text to annotate it
X
My name is Kirsten and I like school
My name is Anne Hall and I live in London
My name’s Pauline and I’m Kirsten’s mum
I have one child, he’s a son
He’s 31 now - Daniel, and he has Friedreich’s ataxia
Kirsten’s got cerebellar ataxia
He was diagnosed when he was 15
But he had problems from being
possibly about 3 or 4 years old
but which went misdiagnosed
I’m in primary three, and I have some helpers
He seemed to be becoming more uncoordinated
and in comparison with other children
I could see quite a difference in his ability to
maybe run or build things
But he was my first child and my only child
so I didn’t really have a comparison
in terms of looking after another child
The first time that there was any concern
regarding her mobility and how stable she was
Was when she was about 14 months old
and she was being investigated then by a neurologist
and she continued to be
So cerebellar ataxia was mentioned on and off
quite a few times since then
so it wasn’t too much of a surprise
when that’s what they concluded
By the time he was 11 he was really deteriorating
I said that to the paediatrician a couple of times
but she didn’t really seem to give the weight
to what I was saying that she should have done, really
I went to see her once without Daniel
because it’s very difficult to talk about your child’s deterioration
in front of your child
So I was always quite circumscribed
by what I could say in front of Daniel
And she was reluctant to see me without Daniel
because I think from her point of view
that would be disempowering to the child
but actually it wasn’t helping
I went to see her alone
and she was most annoyed that I’d come without Daniel
But then afterwards she reflected on it
and felt that I perhaps had a point
It was a very lonely time for me
I think because I felt very lonely
you know, I had friends but I don’t think they understood
what the diagnosis meant and
they were - their capacity to support me developed
but at the beginning they were telling me things like
“it would be alright” and I knew that wouldn’t be the case
because I had actually seen what ataxia can do to people
The teaching staff are excellent
at the school that Kirsten’s at
Because she had balance problems and coordination problems
prior to going to school
the nursery had several meetings with the school
and the other members of a multi-disciplinary team
before she was going
so they therefore expected her to come
and they knew about the problems that she had
at that point in time
When it’s writing time, my hand shakes a wee bit
In terms of Daniel’s schooling, he had good friends
and the school was supportive
And he’d had a teaching assistant before
because he’d had handwriting problems
and coordination problems and so on
That had to be increased
And, actually, educationally
– he was in a mainstream school –
and educationally he got a lot of support
once we had a diagnosis
I think having a diagnosis unlocks doors really, in a way
The one thing I would... well a few things I would say
is push for as many things as you can
Educationally wise, make sure that everything is in place
that can be in place that your child needs
Kirsten has, for example, a computer
that’s for her use in the classroom
because it is more difficult for her writing
Make sure that the school has the knowledge
that you have regarding the condition
Don’t be frightened to speak to the teachers
and, if need be, from your own consultant
ask for second opinions elsewhere
if there’s anything that you’re not sure about
Just ask and ask until you get answers
At the beginning I think I was quite inside myself
Probably quite depressed, although I was working
and apparently doing everything
And Daniel had to deal with what he had to deal with
and I think perhaps there was a period when perhaps
I wasn’t as supportive to him as I could have been
though, you know, I’d try to keep everything ticking over
But we got beyond that stage, I think
At least, I got beyond that stage of being so…
absorbed in what was being taken away
and was able to focus more on
the future and what we could do
so I think that’s what helped me deal with it
and what helped me help Daniel more