HOT
OFF THE PRESS: Lenehan
review calls for urgent action.
A
review published by the Department of mental health, regarding the care of
disabled children and young people is calling for urgent action to prevent
these children and young people from being institutionalised at a young
age. See the original article here:
I
didn’t get the memo sending us back to the dark ages? Institutionalised?
A recent article even stated that these children are being moved
some 300 miles from their family home because there are no spaces at local care
homes.
These
children do NOT need
institutionalising.
They
do NOT need locking away.
They
need EARLY INTERVENTION.
These
children and young adults are our future generations and with the ratio of
children being diagnosed rapidly increasing, something needs to change NOW.
Why
is it that after all of these years, I am still hearing stories from parents –
who are overly concerned about their child’s development – that after referral
they’ve been discharged from services and assessments, because their child has
shown a certain amount of empathy, or had normal eye contact, or didn’t show
any repetitive behaviors?
Why
are so many services disregarding parental
observations, and instincts based on a half hour meeting with a child they
have only known through paper?
When
we were first referred to the community pediatricians, we were asked a lot of
developmental questions, a physical examination was completed, and some
educational tests were done. We were discharged at 3 years and four months,
with a child who was:
‘An
extreme version of
normal’
We
were told to go a parenting course. The consultant was so judgmental, and
unhelpful that from that one 30 minute appointment I had lost all faith in a
system designed to help and intervene.
My
daughter and our family were at this point at crisis stage, the HV actually
said to me, that if my Mental Health wasn’t stable she wouldn’t have been leaving
me. She was worried for my family an I because of the lack of support and the
deterioration in my child’s and my mental health.
Not
one single person believed me! I was on my own and that is one lonely place to
be.
Eventually
things had got so bad that they were forced to refer her again as an emergency
and at four years nine months she was finally diagnosed. This is a full two and a half years after
I had asked for help.
My
natural maternal instinct as a mother was spot on.
And
it has been each and every single time I have suspected something amiss with
her. She now has a multitude of diagnoses, learning difficulties and has just
started a special school, which she is loving. I am hopeful for the future. But
I am also very bitter that no one listened and we couldn’t get that very early
intervention that we so desperately needed. The refusal to assess her early,
has led to us missing out on, or a delay in every single service that we may
have been entitled to.
Mentally
she is three years behind her
peers, but physically she is able. Which leaves
her vulnerable in the way she
is treated and peoples expectations of her.
I
spent two years of her life researching and googling, and fighting for her
rights. Those years we will never ever get back, but it was essential for our
future and I would do it all over again if I needed to.
My
advice is to do your homework, join
support groups, which can be found in the
search option of face book and ask
lots of questions, document everything. Keep
a behavior, sleep and food diary - know your stuff. If you go to your
appointment where the opening line is
“There’s something different about my
child” and no real explanation of this
then expect not to be taken seriously.
Especially if your child has the ability
to mask those subtle symptoms. Know
what you want, don’t be afraid. You need to
be strong and assertive. I wish any
of you the best for future appointments. I
hope that you are taken seriously
and I hope that you are successful in getting
early intervention for your
child, because in my opinion it is KEY.
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