Why is it that after all of these years, I am still hearing stories from parents, of children who are overly concerned about their development.
That after referral, they’ve been discharged from services and assessments, because their child has shown a certain amount of empathy, or had decent 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’ told to go a parenting course and give up smoking! (Me not her)
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 me and my family because of the lack of support and the deterioration in my child’s and my mental health.
I would like to point out that I had a new born baby and so emotions were heightened.
I was in no way depressed at this point, just stressed out to the absolute maximum. 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 9 months she was finally diagnosed.
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 a delay in every single service that we may have been entitled to.
Mentally she is three years behind her peers, physically she is able. Which leaves her vulnerable in the way she is treated and peoples expectations of her.
Those years we will never ever get back, but it was essential for our future and I would do it all over again I needed to. I once heard a story in a support group, that made me well up with pride.
A lovely lady had suspected Autism for her 9 year old for a long time and had heard the horror stories, so she took it upon her self to know every single inch of her child inside out, she done so much research and had written out the perfect referral proposal that her boy was seen within 4 weeks and diagnosed on the spot.
The DR congratulated her on her extensive knowledge and she is now on the pathway to getting her boy what she needs.
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.
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.
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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