The New ‘ Special Needs Budgets for Parents’ a.k.a. spending cuts masquerading as an olive branch

For anyone who hasn’t read or heard about it:-

For my children and for 1000’s of other’s, this could have serious consequences:-

So let me get this right- they say they are giving parents ‘ more control’ – so how exactly does that work then? By some ( highly likely unqualified or even more likely inexperienced) person decide what is a ‘special need.’ For those children with high functioning autism or Asperger’s even some professionals are guilty of just seeing a shy, quirky, naughty , socially inept child and may even blame parenting skills ( or alleged lack thereof) for years. So will they be bunched into the ‘ persistent social, emotional and behavioural difficulties’ rather than being given the specialist help they require for a NEUROLOGICALLY based lifelong condition.Aren’t things enough of a battle already?

And let us not forget that by 2013, Asperger’s Syndrome is going to be removed from the DSM-V ( the main diagnostic criteria guidelines)…. so my children are a) going to have a condition that ‘ no longer exists’ and b) no longer have a ‘ special need.’

But you can take ‘labels’ away, you can rename anything you like, or refuse to accept its very existence but that doesn’t mean that it isn’t real and it isn’t being experienced. It just means it no longer shows up on medical documents, education records or government statistics……it is a government ‘ initiative’ equivalent of sticking your fingers in your ears and going ‘ la, la , la.’ If it can’t be assessed and diagnosed and it isn’t recognised in schools , we don’t have to fund it. Voila! money saved.

Strangely there is an old philosophical thought experiment:- that has sprung to mind here “If a tree falls in a forest and no one is around to hear it, does it make a sound?” And it basically comes down to this premise:-The possibility of unperceived existence or can something exist without it being perceived? For Asperger’s syndrome- the answer is a resounding ‘ yes.’ Ask any family member of a relative with Asperger’s……


4 Comments (+add yours?)

  1. syzygysue
    May 15, 2012 @ 21:37:14

    I have had 23y of the denial of ME in children … but as you imply the tree falling in the forest still crashes noisily regardless of observers. Point I wanted to make is that cognitive dissonance can only last so long in the face of personal experience of a condition. The truth is that overwhelmingly GPs and teachers under 40y now understand that ME is real and can be a devastating illness in spite of the psychiatrists … I hope that children on the autistic spectrum don’t have to wait as long for proper recognition and resources.

    BTW The DSM V is also removing narcissism 🙂 Need I say more.


  2. highlanddream
    May 16, 2012 @ 06:31:21

    I can’t even contemplate 23 years of denial Sue… I know the emotional rollercoaster just 3 years has taken out of our family mentally and physically. I admire your strength and determination wholeheartedly. However , there is no ‘ plan B’ is there? As a parent of a child ( or children) with additional needs who struggle daily, it doesn’t matter what professionals tell you, or how little support you and you children receive or how deflated , angry etc you feel… you just have to keep going and keep fighting as waving the white flag just isn’t an option. These are your children and parents do what they can even in the face of the most serious adversity.

    Love the note about narcissism! Doesn’t mean there will be no pools of reflection that won’t tempt a few parents with a little push! D


  3. syzygysue
    May 21, 2012 @ 22:59:40

    I hope that you do not have 23y!! You are right about having no choice .. the white flag is not an option because your children need you to keep going. But I wanted to make the point that it doesn’t stay the same. You have such little ones at the moment.. and as the years go by, they will change. Sometimes, that could be for the worse, but on the whole, as they grow up, they will acquire their own strategies and emotional maturity which will make it easier. You have very clever children, who are totally supported by you, and those are highly positive factors. Its just a question of dealing with the short term, and to some extent letting the future sort itself out.

    BTW I can’t believe that the professionals have a lot more to offer than your little ones get from you .. so the important thing is to take care of yourself so that you can look after them. S


  4. highlanddream
    May 22, 2012 @ 06:40:26

    Thanks for your comments, Sue, they are always appreciated:) I can help my children with many things and I always do – we work on transitions, anger issues ( taught Makaton to my son when he was virtually non-verbal), obsessions , routines, visual timetables, sensory issues and more importantly- acceptance. I accept them wholeheartedly for who they are but I try to help them with strategies to deal with this funny old world of ours- it isn’t going to change to reduce ignorance and to meet their needs either now or as they grow , sadly. BUT and this is a big but, I need professional help or at least acknowledgement when I cannot be with my children ( e.g. school , nursery.) My children have a social communication disorder so they struggle to interact a) at all for my son and b) appropriately for my daughter. They are upset as they haven’t been granted that strand of Autism where they are indifferent to their peers and oblivious to them …. they DO want to interact and have friends they just don’t know ‘how’…. so the loneliness and tears are very real. They are perfectionistic, controlling, impulsive and non -compliant and have huge sensory issues. If a teacher or nursery staff won’t even acknowledge this and won’t accept the child is struggling ( or just as damaging – accepts the diagnosis , nods head in appropriate places , but just doesn’t ‘ get it’, and continues to treat the child like a neurotypical naughty child)- as is the case with my daughter…. this is why she is in a bad place right now. It is so very difficult to explain that when a child on the spectrum behaves in a challenging manner , they aren’t doing it to be deliberately difficult and defiant but because they are struggling massively- something in their environment is having a huge impact on them . Add to this my son in particular is rendered mute in such cases and this is seen as the ultimate sign of defiance rather than a very worrying sign of huge anxiety. It is hard to break common misconceptions that a child CAN be intelligent AND autistic and that when they misbehave in this manner they need masses of encouragement, support, understanding…. not shouting, ‘ red cards’ and naughty chairs. My children don’t have friends…. very typical of children on the spectrum…. so i can read social stories about ; making friends and playing and sharing until the cows come home ….but I can’t give them the practical experience they need to make it a real means of helping them. I am not an OT, i don’t know whether all the things I am doing helps my children with their sensory issues, but I know at least I am trying … and it is better than nothing as children aren’t referred for ‘ sensory issues’ any more. My daughter has a stammer…. but it is thought she will ‘grow out of it ‘ ( she may do- she may not…. family history of long term speech disorders and impediments)… so it is at home where we try our best to help her with her speech and put strategies into place…. but that doesn’t happen at nursery. I can offer huge amounts of love and I can try to my best to do all i can to help my children with the ‘triad of impairments’ of autism but a) as a mother , the ‘ am I doing enough? can i do more?’ is an ongoing internal dialogue with myself. and b) There are many aspects of their ‘ condition’ I simply cannot help with but i have to try as there is no other input. If my children had exzema, or broken bones, or a hearing difficulty or visions difficulties etc I would not expected to be ‘ doing it alone’ and I would not expect for my parenting to be brought into question. But with a ‘ hidden’ disability…. that is what families have to cope with on top of the very real stress of actually dealing frequent challenging behaviour and lack of sleep aswell as coming to terms with the fact that you have a child ( or children) that is ‘ different’ and all the emotions that go with that. Sorry for the rant Sue…. I know you of all people understand , but I don’t want you to think it is a rant at you… it isn’t… apologies:) Seemingly I deal better with things when I ‘write them / type them down or at least get things off my chest! beth x


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N.B. the title of this blog comes from my son’s very literal understanding of ‘ magic carpet ride’ ….. he believes this to be a ‘car pit’ ( as in ‘ sand pit’) and demonstrates this with a plastic lid and toy car. The magic comes in when the toy car is covered with the lid and it disappears!

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