• Special Needs Jungle: Read the views of a woman at the coalface of SEN: Empowering parents is her goal 
• Reuters:  Talking things through in your head may help autism
• Aspie in the family: DSM V and the removal of Asperger Syndrome – a parent’s view   
• Special Needs Jungle: Get the Special Needs Jungle Blog delivered to your Kindle
• A boy with Asperger’s: Guest Post: Children with autism have significantly different gut bacteria 
• NASEN: January nasen news update 
• The Guardian: It saddens me to see young, vulnerable people having their lives made harder by Peter Halstead
• The Department for Education: Special Educational Needs Information Act – An Analysis 2011
• WebMD Newsroom: Autism Diagnosis Change: What Does It Mean? 
• Not As Advertised blog: The ASD boy and the haircut. 

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Parents In Power is a Parent/Carer Forum. Every Authority has a parent/carer forum and to find out more information or where your own parent/carer forum is located in your area go to www.nnpcf.org.uk . We are independent and  work with some of the most amazing parents of children with disabilities, their strength and fortitude is second to none, no matter what is thrown at them week after week.

I have a son who is now a young man, 19 years old with ADHD, Dyspraxia and Autistic Traits and he is the most awesome of people. His brother who is 17, puts up a lot with his brother and is one cool dude, but one thing is for sure they love each other to bits and boy do they look out for each other.

So I have walked that walk, that long and frustrating journey and I have to say, sorry folks, but it doesn’t end at  16. But I was lucky enough to get my son in an Independent Special School and paid for by the Local Authority.

Every parent/carer that I come across without a shadow of a doubt tells me they are sick of fighting for what they feel their child simply needs and is entitled to in order to lead a normal a life as possible and for their child to reach their potential in whatever that means.

Their problems are nearly always linked with their child’s school and the frustration and energy it takes in trying to get this part of their child’s life right, I mean let’s face it, what a massive part of their lives it is.

Meetings are daunting at the best of times, but when you get into school for a meeting and there is yourself and 7/10 professionals around the table it can sometimes actually be frightening. To prepare parents for such meetings I go through all the issues that need to be addressed, and the points that the parents feel they must point out.  We write them down on what can sometimes be a long list, so in the meeting the parent is satisfied that they have said everything they want to. Or if it is too emotional for them, I will bring these points up for them.

I have gone into meetings where the parents have been an absolute quivering wreck, feeling sick and just wanting to go home, yet just by me saying, “I am with you, you are not alone, I am there to support you” brings out the best in the parent. They are assertive, they get their points across and work down their list of questions. I minute it all for them. When they leave the meeting, although they hardly remember a thing that has been said, they feel so empowered.

That is one of our main aims, to empower parents to be competent and confident in supporting their children.  My biggest concern over the years has been to ensure that when a parent gets their child’s statement to ensure that it is quantified and qualified. So it does not say something like a ‘ systematic programme of speech therapy’. What does that mean? One hour a day,  a week/month/term and by whom. If it isn’t quantified and qualified how can it be legally challenged? A school might interpret that as an hour a month, a parent might interpret that as a couple hours a month. It needs to be fully explained in the statement.

Another part of school life that has really annoyed me are exclusions and as I write this I am eagerly waiting  for the release of the results of the Children’s Commissioner, Dr Maggie Atkinson’s inquiry into exclusions: http://www.childrenscommissioner.gov.uk/  This is due out 19^th March 2012 and I will reading this with a fine toothcomb, hoping she has captured the inequalities of exclusions for children with Disabilities, especially those with disability related behavioural difficulties.

My son was excluded 11 times in one year, what did he learn from this? Simply that every time he wanted a couple of days off school to misbehave,  it worked. No matter how hard I worked with the school and I worked a lot harder than the school did on this one, they still excluded him until the day the big permanent exclusion came. My son and I cried together all weekend. The result was an independent special school which could not cater for his academic ability.

For those just embarking on this journey I wish you luck, get as much expert support as possible you will need it.  If you don’t know where to start contact your local parent/carer forum, website address above and they will advise you.

It means you’re always connected to important SEN news, views and information as well as guest posts from interesting contributors.

If you’re Kindle enabled, whether it’s through a Kindle, ipad or smartphone app, subscribe from the links below:

UK:

US:

• TodayOnline: New definition of autism will exclude many, study suggests 
• HR Magazine: NAS pilots initiative to help people with autism find work
• Special Needs Jungle: Disability groups call for pause for thought in welfare reform
• Ambitious About Autism: Legal aid victory for young people aged 16–25 with SEN – Ambitious about Autism 
• Kensington & Chelsea Chronicle: Parents’ fears over future of autism service
• Brownsville Herald: Children with autism most certainly feel emotions   
• NAS Education update: Take part in SEN research to inform Government reforms
• Children & Young People Now: Shortfall in provision of speech and language therapy exposed 

This is what the NAS had to say on their website:

We are calling on the Government to pause the Welfare Reform bill and carefully consider its reform of Disability Living Allowance (DLA). The Welfare Reform Bill which will implement these proposed reforms is now in the final stages of its Parliamentary passage but the details of how the reform would affect disabled people have not been fully investigated.

Last week a Responsible Reform report (known as the Spartacus report) revealed strong opposition from disabled people, charities and other interested groups to the Coalition Government’s proposed changes to DLA. The report showed worrying evidence that the Government’s decision to reduce projected DLA expenditure by 20% may have been based on incomplete or misleading data about the reasons for growth in DLA.  It has also been revealed today that the proposed changes will lead to 500,000 disabled people no longer being eligible for this benefit.

Independent surveys carried out by some of the signatories to this letter have shown that cuts to DLA will force more disabled people into poverty, which is likely to increase the burden on the NHS and social care system in the long run. Such a potentially risky change in policy should not be taken forward without a robust and accurate evidence base and the support of disabled people and the experts in this field.

Last year the Government took the bold decision to pause and reflect on its reorganisation of the NHS after similar levels of concern and anxiety from medical groups and patients. Today Papworth Trust, Action on Hearing Loss, Brandon Trust, Campaign for a Fair Society, Disability Rights UK, Disability Wales, Ekklesia, Leonard Cheshire Disability, MS Society, The National Autistic Society, Rethink Mental Illness, RNIB, Sense, Three Cs, United Response and the Westminster Society are asking the Government to show similar foresight and pause the Welfare Reform Bill to investigate the strong concerns raised above. We ask Peers to support amendments to pause the legislation that will affect so many people’s lives.

Source: National Autistic Society

Surely the government cannot ignore such a wealth of disability expertise all telling them that this most vulnerable group of people will be thrown into poverty (not that they’re living the high life now) if their reforms go through unamended. Can they?