14 February 2017

Institutionalising Disabled Children: Why Early Intervention Is So Important.

 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 

They do NOT need locking away.


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

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.

 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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