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why tthey don't understnad "invisible disability"?

wood36

I would greatly aprpciateif if you could kindly give me some advice.

My 11 son has ASD. He still needs help for :

  • un/dressing
  • washing
  • brushing teeth
  • toileting (has not completed toilet training yet, he still need nappies)
  • communication 
  • and he is Statemented
  • and he is awared DLA with high rate of care component and low mobility

My son finds these things are very difficult due to his high level of anxiety and sensory integration problems.

A social worker came and did Carere's Assessment today, as I still have to lift him to un/dress or wash but now I have got hip joint problems and thnigns are very difficult for me to lift him.  What a disappointment it was! She told me my son "looks nornal, therefore, no help is needed from communicty care"

She insisted that he has "healthy" arms and legs and he can do maths in school so that he should be able to do all sort of things by himself and she really insisted that he is perfectly normal and should not be treated as "child with Special Needs", althought he has Statement!!!!! She also told me that one of her cliant's all joints are twisted and on the wheelchair and compare with her, my son is far more than normal.

 I am very frustrated and feels extremly sad, as people, even professioanls, can't understand his invisible difficulties (realted to ASD and mental health issues) think that mys son's difficulties are just becuase  "he is lazy" or due to "my poor parenting hence he is a spoiled kid"   Why they only can understnad and see physical side of disability? why "invisible" disability/difficulty are not equally treated as physical side of problems? It is 21st century but why (majority of ) people think "disabilty" means "on wheelchair" - for example?   

Anyone could possibly give me some comments on this issue? anyone agree with me? I am so frustrated becuase, not only my son's difficulties were acknowledged (ignored) but also his difficulties were viewed as "being lazy". 

Parents

  • I think the way you have been treated is very bad indeed and incidents like this are common place it seems. One mum told me recently, that when her SW visited, she wanted to know why her son flapped, rocked and had a meldown on their lounge floor and if she could stop him from doing it!

    The real tradgedy is that incidents like this run the risk of putting off those most in need from even attempting to access support through SS. It has me I can assure you.

    Having jumped through hoops in most cases to get your child even assessed by the NHS professionals, it's a complete insault to then be denied access to support, when the child has already been diagnosed and identified as having needs.

    Sadly, ignorance is not just confined to SW's. I had a PCSO tell me once that their was nothing wrong with my son's! Clearly, she fancied herself as a medical professional as well, because in that one statement she managed to lord her opinion over a fully qualified ED Phych with more than 30 years experience, a Speach & Language professional, OT, Childrens Consaultant and the opinion of SENDIST! I was so aghast, I was stunned into silence.

    She went onto say that day release from Schools to colleges for education in more practical based subjects, was only for the 'Naughty Children' and that those with Disabilities are not the focus of bullying because of their disability! The depths of ignorance out there defies belief at times.

    My son's continue to encounter such prejudice which has gotten worse the older they've become and it's disgracful. One of my boys is so appaulled, he's started up his own campaign to raise awareness.

    You are not alone Hun. Fight your corner for your son. He and you, deserve support.

Reply

  • I think the way you have been treated is very bad indeed and incidents like this are common place it seems. One mum told me recently, that when her SW visited, she wanted to know why her son flapped, rocked and had a meldown on their lounge floor and if she could stop him from doing it!

    The real tradgedy is that incidents like this run the risk of putting off those most in need from even attempting to access support through SS. It has me I can assure you.

    Having jumped through hoops in most cases to get your child even assessed by the NHS professionals, it's a complete insault to then be denied access to support, when the child has already been diagnosed and identified as having needs.

    Sadly, ignorance is not just confined to SW's. I had a PCSO tell me once that their was nothing wrong with my son's! Clearly, she fancied herself as a medical professional as well, because in that one statement she managed to lord her opinion over a fully qualified ED Phych with more than 30 years experience, a Speach & Language professional, OT, Childrens Consaultant and the opinion of SENDIST! I was so aghast, I was stunned into silence.

    She went onto say that day release from Schools to colleges for education in more practical based subjects, was only for the 'Naughty Children' and that those with Disabilities are not the focus of bullying because of their disability! The depths of ignorance out there defies belief at times.

    My son's continue to encounter such prejudice which has gotten worse the older they've become and it's disgracful. One of my boys is so appaulled, he's started up his own campaign to raise awareness.

    You are not alone Hun. Fight your corner for your son. He and you, deserve support.

Children
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