"I am disappointed they are not listening to me"

About: Nottinghamshire Healthcare NHS Foundation Trust / Child and Adolescent Mental Health Services – Community(County)

(as a parent/guardian),

I have been trying to have my son assessed. I have paid for 2 assessments so far which show my son has sensory processing deficits, possible Dyspraxia; and since us officially been told he has hyper mobility, low muscle tone and difficulty co-ordinatiing movements. I am about to start paying for occupational therapy input to help with his sensory related behaviours.

But I am continually experiencing stereotypical beliefs and conflicting statements and report and am realising the sad truth that because of my diagnosis of Aspergers the professionals involved (sure start staff, health visitors, paediatrics) seem determined to prove I am responsible.

On one hand they say it's not my parenting but then conflicting comments and statements insinuate the opposite; I have been advised by professionals and non professionals to seek a different paediatrician and support due to what I have been experiencing over the last year and in their opinion because of my diagnosis; one said if my son was in foster care or adopted he would be assessed differently. I now am beginning to see the validity in this comment as more and more are agreeing and saying similar.

We have been turned down by CAHMS twice, been turned down by short breaks; been told my current paediatrician will not allow my son to go else where at same time they say he needs specialist help but at same time are refusing it but have sent me on a parenting course.

I feel saddened that all I have wanted is a fair open minded non judgemental assessments but instead have met with the opposite; they refuse to take any statements or views of those who know my son and have seen him seem to be dismissive of reports I have paid for yet they would of family if I had any. Because my sons behaviours differ in environment dependent on those around him they have since claimed his behaviours only occur when I am present despite others saying the opposite but as said they do not wish to hear from others.

I have asked them to observe in different venues and they have refused. It is claimed they say nursery saw no issues despite nursery agreeing he has sensory issues and nursery telling myself and another of issues they were experiencing, it would appear the professionals involved only want to hear from those which backs up their opinion of me.

This is only a short overview but I am disheartened to see the same views of parents on spectrum are automatically to blame for any problems arising in their children. It seems old beliefs die hard and parents like myself are defenceless against these actions.

It's confusing as at same time they say they acknowledge my son has problems and they believe me that he needs specialist help with his behaviours as he is getting so strong yet at same time make comments like I am disappointed they are not listening to me, or he only does behaviours at home and with you despite as I said many others witnessing his quirky behaviour and been on receiving end. As said these said professionals do not wish to talk to or discuss this with those who have known my lil boy over 2 years.

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Response from Rebecca Keating, Team Lead Specialist Community CAMHS (North), Child and Adolescent Mental Health Services, Nottinghamshire Healthcare NHS Trust


I'm sorry to hear about the difficulties you have experienced. In order to address some of these difficulties and think about how we can help you and your son moving forward could you contact me ( Rebecca Keating) on 01159560866?



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