Click on names below for more information

About Autism..... ACE..... Adders..... Adults in the workplace...... Aspire Consulting Psychologists..... Angel Adams..... Asset..... Auditory Processing UK..... Autism Bucks..... Autism Cymru..... Autism Research Centre..... Autism Speaks..... Autism West Midlands..... BTCV..... Brookdale Care..... Camphill Communities...... Charlotte Wilson..... Council for Disabled Children..... Contact a Family..... Dr. Hilary Dyer..... Eagle House Clinic..... Education Otherwise..... Equazen EyeQ..... Flower Associates..... Fostering Solutions..... Holidays for people with special needs..... INPP..... IPSEA..... IS2D..... Joint Educational Trust...... Living PROSPECTS..... List of Special Schools and Units..... Looking Up - monthly autism newsletter..... Mencap..... Nasen..... National Autistic Society..... NoRSACA..... OASSIS..... Rainbow School..... SENDIST..... School-resources.co.uk..... SEN Legal..... SOS!SEN..... Special-abilities.net..... thedotdots.com..... The Learning Assessment and Neurocare Centre..... TreeHouse Trust..... VIPs in SEN..... 3H fund.....

As I’ve mentioned in the Velvet Bulldozer we have had to use independent specialists to get to the bottom of our children’s difficulties.  We’ve usually turned to them in total desperation when we’ve been getting nowhere with the Local Authority.  Some of the following information may help you:

Dr. Angel Adams

I was lucky enough to be told about Dr. Angel Adams in 2004. I was even luckier to meet this remarkable and very experienced lady and have her assess Jack. I can highly recommend her assessment. Having taken Jack there we finally knew why his life had been so hard. I know it sounds odd but Jack was so relieved to discover what his problems were. He isn’t stupid (which is what he’d been made to feel) and he needed to know who he was. There were genuine physical and psychological reasons why certain things were so difficult. We now know that Jack has severe ADHD, is on the Autistic Spectrum (Semantic Pragmatic Disorder and meets criteria for Asperger’s Syndrome in many areas), has Auditory Processing Disorder, Dyspraxia as well as the already diagnosed Dyslexia. Finding out meant we could then move on to accessing the most appropriate help for him. We had to pay for the assessment but it was worth every penny as her specialist reports gave us the ammo to get Jack some help at last! Dr. Angel Adams is a highly experienced clinical psychologist and known as a leading advocate for parents, grandparents and foster carers in the UK. Her expertise is in assessing, diagnosing and treating children with complex psychological and neurodevelopmental disorders. She works at the CAMHS psychiatry team, Sutton Hospital, Sutton, Surrey. Her private practice is in Kingston, Surrey.

Dr. Adams can be contacted through: www.drangeladams.com.

In conjunction with her affiliated team of professionals and parents, her mission is to provide a wealth of knowledge, practical and science-based information and or therapies to help empower parents to raise socially competent children, no matter what age or what diagnosis. Dr. Adams has been a continuing support since 2004 to our family. A wonderfully kind woman and a very warm human being – and we can do with more of those!
 

Dr Hilary Dyer- International Educational Psychologist and SEN Legal Specialist

Dr. Hilary Dyer is available to share her knowledge, expertise, warmth, and energy with parents of children with Special Educational Needs, in conducting independent assessments of needs, and in offering a range of legal services covering the SEN Code of Practice and SEN legislation.

Dr Hilary Dyer is a fabulously enthusiastic lady. I was very pleased when she emailed me, out of the blue, asking if she could attend my talk to the National Autistic Society - North Somerset branch? Could she attend - I was THRILLED!!! And it was wonderful for the parents who attended to have time to chat with her and get her advice. I am happy to point you towards Hilary. Her energy and passion, for helping people caught in the SEN system, were infectious.

http://www.drhilarydyer.co.uk

Dr. Hilary Dyer 01507 578795

h.dyer@tiscali.co.uk

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Eagle House Clinic

Eagle House School is an independent school that provides specialised education for primary age children who hold Statements of Special Educational Needs for Autistic Spectrum Disorders (ASDs) and associated social and communication difficulties. Attached to the school is the Eagle House Clinic comprised of a multi-disciplinary team. The clinic provides a comprehensive assessment of the child or adolescent with neurodevelopment disorders and or social communication disorders. A formal diagnosis will be made by the team if appropriate and information regarding the level of functioning across all areas of development.   The findings of the assessment will be documented in a detailed report which can be used to make recommendations for:

1. Annual Reviews.

2. The type of educational placements.

3. Contribution to the Statutory Assessment of Special Educational Needs.

4. Special Educational Needs and Disability Tribunal.

5. Type of therapeutic input most appropriate for child or adolescent.

Eagle House School and Assessment Clinic

224 London Road - Mitcham - Surrey - CR4 3HD

Tel: 020 8687 7050 - Fax: 020 8687 7055
Website: www.eaglehouseschool.co.uk

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Special Speech and Language Therapist

I can also thoroughly recommend Speech and Language Therapist (SALT) Charlotte Wilson – another woman passionate about her job.  Her SALT report regarding Jack was excellent and extremely thorough.  Ms. Wilson can be contacted at:

cwilson1972@topenworld.com

17 Branscombe Street, Lewisham, London, SE13 7AY.

 

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Education Otherwise is a UK-based membership organisation which provides support and information for families whose children are being educated outside school, and for those who wish to uphold the freedom of families to take proper responsibility for the education of their children.

And they’re jolly nice people!  We were members when we were homeschooling our mob and it helped not to feel so isolated and to be able to contact others with the same mindset.   Contact:  
 

Information Helpline: 0870 7300074 

 

PO Box 325,
Kings Lynn,
PE34 3XW

 

www.education-otherwise.org

 

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More Independent Psychologists and Assessment Centres

 

In the Velvet Bulldozer I have sung the praises of Professor Colin Terrell (Aspire Consulting Psychologists, Nuffield Hospital, Cheltenham, Glos, GL51 6SY, telephone: 01242 574646) and Dr. Angel Adams  (www.prosocialskills.co.uk).  Here’s another thought if neither of the above are able to help you.

 

Take a look at www.flowerassociates.co.uk.   Mr. Dirk Flower was extremely kind and helpful to me when we were trying to unravel the diagnosis for Jack this summer.  He was very concerned for Jack when I explained what was going on but said that he couldn’t get involved on this occasion as Jack was now too old (his practice deals with younger children).  However, in spite of the fact that he wasn’t going to make a penny from us he spent time with me on the telephone and gave us some very good advice.   ‘Janet’ had recommended him to me as she had worked with him during previous Tribunals.  I trust Janet.  If she says someone is a good egg then that’s good enough for me.

Email address: admin@flowerassociates.co.uk 

42 Harley Street, London, W16 9PR.  Telephone: 01928 282750 or 0207 436 3813

 

The Institute for Neuro-Physiological Psychology - INPP in Chester


If you are visiting the Velvet website it is presumably because you are
worried about your child.  We took our son Jack to the INPP twice and found
them to be helpful and sympathetic.  They were very straightforward and
honest with us - which was very much appreciated.  Sally Blythe, at INPP,
diagnosed Jack's Auditory Processing Disorder and confirmed that he had
Retained Birth Reflexes, which were impacting on his life.   These diagnoses
were a very important part of Jack's personal 'jigsaw puzzle' and helped us
to finally achieve a better understanding of our son and his complex mix of
difficulties.   Their assessments made sense and I would commend you to take
a look at their website: :

http://www.inpp.org.uk/index.htm

INPP has pioneered research into Neuro Developmental Delay. The INPP
Programme has been providing effective help for the under-achieving child
since 1975. Since that time it has successfully treated several thousand
children with an 80% success rate. There are therapists using the INPP
programme in 16 countries throughout the world.

INPP is a private self-funding organisation which provides:

Assessment and supervision of remedial programmes for children with specific
learning difficulties and adults with balance-related emotional problems


INPP can help children with specific learning difficulties, co-ordination &
behavioural problems such as:
· Dyspraxia (Developmental Co-ordination Disorder)
· Dyslexia
· Attention Deficit Disorder (ADD)
· Under-achievement
· Co-ordination Problems
· Concentration Problems
· Developmental Disorders including:
(DAMP) Dysfunction of Attention, Motor, Perception
Asperger's Syndrome

 

 

 

The Learning Assessment and Neurocare Centre, Horsham, West Sussex.

Tel. 01403 240002     www.l-a-c.com    info@l-ac.com

 

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NoRSACA operates a range of services for children with autism and their families based on sites in and around Nottingham

www.sutherlandhouse.org.uk  

 

_________________________________________________

 

 

The TreeHouse Trust (TreeHouse) is a UK charity, based in north London and founded in 1997 by a group of parents whose children had recently been diagnosed with severe autism. TreeHouse was established in response to the huge
unmet national need for specialist education for children with autism. Its aim was to provide an educational centre of excellence for children with autism and related communication disorders.  They also run Treehouse School.
 
As of the 1 February 2005, TreeHouse has merged with PACE, a campaigning charity for children with autism. PACE is now the TreeHouse Policy and Campaigns Team.
 
TreeHouse are just launching the publication of a new manual to help parents campaign constructively, and help to change services and provision for all children with autism in their local area. It is called:
 
'Constructive Campaigning for Autism Services: The PACE Parents' Handbook' and it is available through Jessica Kingsley Publishers (www.jkp.com).

Treehouse think that the Velvet Bulldozer works well alongside their handbook. I've been invited to the launch and am pleased to be associated with this book.

You can find out more about Treehouse by visiting their website:

www.treehouse.org.uk  

This is a super organisation.  They regularly publish a newsletter
full of pertinent snippets  If you would like to receive the Newsletter
(current and future editions) all you need do is email Tom Hoyle at
(thoyle@treehouse.org.uk) with 'Request Newsletter' in the subject line.

Tom said it would be really handy too if readers/supporters gave them the
following information information for their records. They promise to look after it but it could be
valuable for TreeHouse's national policy and campaigns work:

Name
Address
Postcode
LEA/PCT
Email
Telephone

They would appreciate it if you could tell them whether you are a
parent/professional/campaigner/policymaker...And whether you would prefer to
receive the newsletter by post or email.. Check out the policy and campaigns
part of the website at:

www.treehouse.org.uk/policy_and_campaigns.htm
 

_________________________________________________

 

I went to a fascinating talk given by Professor Baron-Cohen and our children have agreed to take part in the genetic research programme.  His books aren't bad either!!  Actually 'An Exact Mind' (www.jkp.com) is truly amazing.  The intricacy of the drawings will take your breath away.

Diagnosis of Adults

If any of you know of any adults seeking diagnosis may I suggest you contact this clever and caring man. Professor Baron-Cohen holds diagnostic clinics for adults with Asperger’s Syndrome Check out Cambridge Lifespan Asperger Syndrome Service (CLASS). ‘This is a clinical service for adults with Asperger Syndrome.  Currently there are very few clinics in the UK specializing in the regrettably very late diagnosis of adults with AS.  The clinic primarily offers a diagnostic opinion, and takes national referrals, but also runs some social support groups for local patients’.  
http://www.autismresearchcentre.com.

 

Adults in the workplace

Autism West Midlands offer support into the workplace for adults with Asperger’s Syndrome and might be worth talking to for this sort of advice.

www.autismwestmidlands.org.uk

Autism Speaks

Autism Speaks is the only charity in the UK raising funds for research into the causes of autism, so that we can improve the quality of life for those living with this confusing and isolating condition

www.autismspeaks.org.uk

Autism Bucks seems to be a proactive group for those of you within the area.

They also run The Spectrum Club for adolescents with Asperger's Syndrome.

The aim of the club is to enhance social skills through common interest and
assisted activity.  They also like to help their members achieve as much
autonomy as possible.

The club has one venue in High Wycombe, and is open every fortnight on a
Saturday afternoon. Another venue in Aylesbury is soon to be opening.

Check them out on

http://www.autismbucks.co.uk/

Autism Cymru

Although based in Wales, and obviously very helpful for those of us who live in Wales, Autism Cymru are a good organisation to contact for information on anything to do with Autism.  Check our their website:

http://www.awares.org

Sandy will be leading two workshops at the Autism Cymru Conference April 22nd and 23rd 2008 in Cardiff City Hall.  If any of you are attending the conference please do come and say hello.  If you haven't attended these conferences before I'd highly recommend - excellent speakers from whom I've learned a lot in the past. Take a look at the Autism Cymru site:
 
http://www.awares.org/pkgs/online_library/library.asp
 
They are well thought of internationally and often run excellent workshops/talks, etc throughout the year.
 

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Foster Care

http://www.fosteringsolutions.com

Fostering Solutions is an independent foster care agency who are passionate about ensuring positive outcomes for children and young people in foster care. I know there are many children in foster care or who are adopted who have special needs. I also know that there are some fantastic foster carers/adoptive parents out there who are desperate to find help.

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About Autism, a parents perspective

http://www.aboutautism.org.uk/school.htm

I'd recommend you take a look at this interesting site set up by parents to try to help other parents - good for them! This is a web site which has been written by the parents of Zoe, an autistic child living in the UK, with a view to sharing as much practical knowledge as possible.

________________________________________________

A site full of all sorts of useful information.  I was reading a very interesting piece regarding dyspraxia there the other day. Would
recommend you check it out.

________________________________________________

School resources website

http://www.school-resources.co.uk


This is a very helpful site.  It is just changing hands but I feel confident
that it will continue to share information of help to parents, SENCOs,
teachers and  LSA.  Anyone, in fact involved in the care of children.  Do
check it out.


________________________________________________

Equazen EyeQ

Two of our children have been taken the Equazen EyeQ Omega 3 and 6 supplements for the last few months. I wish I’d found this supplement years ago as I really think that it has a very positive effect on them. Equazen themselves are very interested in special needs education. This is because they have received so many enquiries from desperate parents! They really do want to support us and so try to share information, etc., that may help. All the Equazen staff are friendly and helpful I’ve found. I’ve also found that their Evening Primrose oil is excellent for me. They run the Learning Alliance, which is a non-profit making part of their organisation. The Learning Alliance holds an annual special needs conference, which was excellent and very informative – I was the last speaker of the day and a very lively question and answer session ensued!!. Local events are also planned I believe.

Do check out their website. http://www.equazen.com/default.aspx?pid=206

Alternately contact them at 31 St Petersburgh Place, London, W2 4LA.

Tel. 0207 243 7100

________________________________________________

Voice of Independent Parents in Special Educational Needs www.vips-in-sen.co.uk

SEN website resource providing help, advice, support, and
information, for parents, carers, teachers and governors. Regular news and
events updates. Campaigns. Legal contacts. Key documents, reports,
publications, legislation, policies etc.

It shares the same aims as ours for cutting through the jargon, legal and
bureaucratic speak, to bring parent/carers up to speed quickly on what to
expect and to become well informed.
 


________________________________________________

Holidays for people with special needs

I offer advice in the Velvet Bulldozer to parents who are looking for holidays that might be suitable for their children/adults with special needs.  I didn’t know such organisations existed and our children have now enjoyed some wonderful holidays. If you haven’t yet dipped into a copy of the VB (picked up from your library maybe) may I suggest you check out some of the following:

Mencap – (who have a list of these sorts of holidays) www.mencap.org.uk - this is a good place to start.

We can personally recommend Chrysalis Holidays 01942 671581 (our children have enjoyed several holidays, in the UK and abroad, organised by Chrysalis).  It gives them a lovely feeling of independence in safe environment and a break from Mum and Dad!

 

Also you could take a look at:

Special-abilities.net       

www.abilities.fsnet.co.uk/Holidays.htm

 

Holiday information and funding and financial help with holidays for special needs children and their families.

3H fund (Help the Handicapped Holiday Fund)

www.3hfund.org.uk Tel: 01892 547474

 

Some other holiday ideas (all the children have VERY long holidays and need to be very active)

Some of the following company's holidays are suitable for high functioning, able bodied people (Alex loves these).  Great fun in the great outdoors:

BTCV Conservation Holidays, 163 Balby Road, Balby, Doncaster, DN4 0RH.

www.btcv.org

email: information@btcv.org.uk

Tel: 01302 57224

Casa Felicidad, Fuerteventura

If you have a child who is OK on a flight (four hours) and are looking for a
quiet holiday in the sun do check out the following:

www.casa-felicidad.co.uk


This very comfortable and pretty apartment that sleeps four or five and is
in a very peaceful location (on a golf course overlooking the sea) near the
little town of Caleta where you can find everything you need if you want to
go out.  However, if you want to eat in then the kitchen is fully fitted
(oven, hob, microwave, fridge/freezer, washing machine).

There is a TV/DVD in lounge and a separate TV for watching videos that can
be moved into either bedroom (if your child cannot be separated from the
video player for the duration of a holiday - we know it can make a
difference between a happy time and frankly a trial!).

There is a hot tub in the front garden, fabulous views from the rear garden.
Very quiet community swimming pool just paces away from your door.   The
beaches are peaceful and spacious (there is a selection some quieter than
others, some virtually deserted!!) so you should be able to find a space for
your family VERY easily.   Fuerteventura is the largest of the Canary
Islands but the least populated.  The weather is rarely sticky but often
bright and sunny with a breeze.  We love it and have just returned from a
very good holiday with our two youngest boys.

They played ball on the wide main beach, went to the golf driving range with
their dad and generally chilled out.  We felt safe there with them.

Even on the one dull day we had a good time.  The boys all went bowling and
had a bracing walk along the cliff walk.  They both looked tanned and really
good well we returned them to their special needs colleges which is good in
the depths of dark winter

 

 

 

For those of you.......

.............with older children there is a question mark about what happens when your child leaves special needs college if they still need support.  I do talk about this in the Velvet Bulldozer but here are some further thoughts as things have moved on since the book went to the publisher:

 

Camphill Communities

Helping People with Special Needs

Two of our youngsters are now enjoying a fulfilling and happy life in Camphill Communities.
This is a wonderful organisation that has schools, colleges and communities
for people with a range of Learning Difficulties and Disabilities.  You'll see from the
Velvet Bulldozer that I think that if you are looking for a suitable place for your child I can
commend this organisation very highly.

If you are looking to help out, or even do a gap year helping out, then do
look at the Camphill website under job opportunities.  They have co-workers
who travel from all over the world to live and work with helping people with
special needs in their colleges and communities.  I asked one lovely young
lady from Russia why she came to South Wales  (she was helping out at Coleg
Elidyr).    She said that she had come to improve her English but that she
'had learned so much more!'  I think that says it all.  Co-workers can be
any age over 18 and some are just taking a sabbatical from the rat-race.

You don't earn much money but the experience is priceless!! We have had very good experiences with Camphill. They really have helped Alice a lot. Alice is moving into a supported living house as part of a small Camphill community in the summer (she likes things to be quiet) and very much looking forward to it.  Alex is going for a two-week trial visit to another much busier Camphill Community (he thrives in this sort of atmosphere) and hopes that there might be a place for him early next year when he finishes at his special needs college.

www.camphill.org.uk

I’ve also recently found the following which may be of help to some of you:

 

Living PROSPECTS.   Living PROSPECTS supports about 200 people with learning disabilities in a range of living and day opportunities settings throughout the UK.

Its first home opened in 1979 in Aberystwyth and Living PROSPECTS now has services in different parts of England, Wales and Northern Ireland.

People with learning disabilities are supported in a variety of living situations -

  • in one of 25 homes or
  • in supported living projects,
  • in their own homes
  • or in a home support scheme to provide short-term support in the homes of families in SE England (a project which PROSPECTS is setting up in partnership with CARE).

Its philosophy is guided by the Principle of Personal Value which acknowledges in people with learning disabilities their individuality, integrity, dignity, independence and spirituality as well as their place as part of the ordinary life of society.

The flexible services provided by Living PROSPECTS respond to the changing needs and wishes of those receiving them. Those needs and wishes are assessed in partnership with them through the Essential Lifestyle Planning process.

Living PROSPECTS is committed to responding to the aspirations and needs of people with learning disabilities regardless of the degree of disability. A number of people supported have multiple disabilities. It enables people with learning disabilities to live their lives to the full, recognising each person as made in the image of God and with the equality of respect that flows from that.

 

Information services

I’ve found the National Autistic Society to be extremely helpful for all sorts of reasons and would strongly suggest you contact them if you are helping anyone with an Autistic Spectrum Disorder.  Check out their website:

 www.nas.org.uk

As a member of the NAS (and I'd recommend anybody with an autistic member of
the family to join as they are a very helpful organisation and useful to see
what resources are around) I receive regular updates from them about new
publications and useful fact-sheets.    Do click on the following link to
check out what's available currently.

www.nas.org.uk/pubs
 

Take a look at the I Exist campaign that the National Autistic Society are currently running;

 

http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=1584

 

  • 63% of adults with autism do not have enough support to meet their needs.
  • 60% of parents say that a lack of support has resulted in their son or daughter having higher support needs in the long term.
  • A third of adults (33%) say they have experienced severe mental health difficulties because of a lack of support.
  • Over 60% of adults with Asperger syndrome or high-functioning autism have struggled to receive support from their local authority and/or health service. Of these, 52% were told that they do not fit easily into mental health or learning disability services.
  • 61% of adults rely on their families for financial support and 40% live at home with their parents.
  • 92% of parents are worried about their son's or daughter's future when they are no longer able to support them.

NAS North Somerset Branch 

 

NAS North Somerset Branch is clearly an energetic and very helpful group who hold lots of meetings and could be life changing for you.  They've just held their Autism Heroes event which brought a lump to my throat just reading about it.   I'm speaking there on 15th October 2009 and looking forward to meeting them all very much.
 

For more information please contact Liz Kelly at northsomerset@nas.org.uk

NAS Denbighshire & Conwy Branch

This is a lively group. I gave a talk there in June 06 and it was a good evening with friendly and passionate folk. If you live in this area please enquire to:

Dave Morgan,                                                                                                                                                                                                                         NAS Denbighshire & Conwy Branch                                                                                                                                                                                     43 Aquarium Street                                                                                                                                                                                                             Rhyl                                                                                                                                                                                                                                         Denbighshire                                                                                                                                                                                                                        North Wales                                                                                                                                                                                                                        LL181PH

dmorgan@antennaaudio.com

Tel: 077386 80326

Autism Survey

I've just completed this survey ( www.autism-survey.com )  having heard
about it through the National Autistic Society.  It didn't take long to do
(perhaps 10 minutes) and you might find it worthwhile to complete as the
more of us who speak out the better.  It is anonymous!
 

Help regarding Disability Living Allowance.

This is a very helpful section of the National Autistic Society website
which deals with Frequently Asked Questions regarding claiming Disability
Living Allowance (DLA)for your Autistic child/adult  - and they are entitled
to claim this allowance which can be very helpful financially:

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=300&a=3330

You should also be able to claim if your child is Dyslexic - talk to the DLA
advisors they are very helpful.

It doesn't affect any other Benefits - in fact it may mean you can claim
supplements to other Benefits.

There are also helpful hints on filling in section 2 of the DLA form.

I'd also advise talking to your Citizen's Advice Bureau as they are
experienced and this form can be a little tricky if you don't know what they
are really asking.
 

Taking your child to the Dentist!!

This looks useful too:

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=128&a=8614
 

Nasen

Nasen is the leading organisation in the UK which aims to promote the education, training, advancement and development of all those with special and additional support needs. Nasen reaches a huge readership through its journals: British Journal of Special Education, Support for Learning, new on-line publication Journal of Research in Special Educational Needs and the magazine Special. Nasen House, 4/5 Amber Business Village, Amber Close, Amington, Tamworth, Staffordshire, B77 4RP. Tel: 01827 311500 Fax: 01827 313005 http://www.nasen.org.uk email: welcome@nasen.org.uk

Jargon Busting

I  talk in the Velvet Bulldozer about 'jargon busting and understanding short
forms' when you enter the world of special needs.  To help you further with
this may I commend to you the following very helpful page on the National
Autistic Society website:

Glossary of terms

A glossary of terms used in the field of autism and Asperger syndrome. Some
terms are central to autism, some describe related or concurring conditions:
many are terms parents may hear, particularly from professionals working
with and for them. The source of all terms is included. If you discover
relevant terms you think should be added, please email webeditor@nas.org.uk
using the subject 'Glossary of terms on the NAS website'.


http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=655
 

 

Advice about schools for children with special needs

Here's a piece of good advice from one of my readers - thanks Alison.  If
you're seeking a suitable school go to this site:

http://www.mugsy.org/schools.htm

It is part of the NAS Surrey Branch website which is a mine of helpful information.  I already recommend you visit it generally but this page specifically would cut out a lot of scratching around.  Good luck
 

 

Mencap

I know this is mentioned in the Velvet Bulldozer but I really do feel that you should add the Mencap website to your list of favourites.

http://www.mencap.org.uk

Mencap is a very helpful organisation on a wide range of subjects related to people with Learning Disabilities. I looked on the site and then telephoned the free helpline (0808 808 1111) this morning regarding a query about Benefits for one of the children.  As I've mentioned this can be a complex system and it was a very worthwhile conversation with somebody who is impartial.  I feel I've been pointed in the right direction and they are asking one of their Benefits Advisors to telephone me next week to talk to me in detail.
 

_____________________________________________________

 

I was sent details about an organisation called IS2D.  They cover many subjects close to my heart.  It may be that they are close to your heart also so here are their details:

Jane Maguire, IS2D, 50 Southern Way, Farnham, Surrey, GU9 8DF.

Tel: 01252 718807

www.is2d.org.uk

I went to an IS2D event late in 2004.  Very helpful, very interesting, worth the trip.

One of the speakers was a young lady with ASD called Ros Blackburn.  She had us enthralled for an hour.  She spoke fluidly, entertainingly, intelligently and very movingly but certainly without a trace of self-pity.  She was marvellous.  She very matter of factly talks about how ASD affects her life, her obsessions (the word ‘lizard’ and glittery paper for instance).  She clearly has a wide vocabulary but admits to being incontinent and incapable of coping with daily life without support.  She told us she is a ‘serial escaper’ and once when arriving at a speaking engagement at a school surprised the headmaster when she climbed over the wall to get in (she had to know she could get out) instead of  driving up to the front steps of the building with the others in her party!

It was a very moving account and insight of life on the ‘other side’ and I’m so glad I met her.  It certainly helps me in my daily dealings with our four.  Some things that crop up aren’t logical but sometimes we just have to go with the flow!

‘IS2D is a not-for-profit organization that aims to make a difference to the lives of people with a label of ‘Autism’ or ‘Asperger Syndrome’. 

Their aim is to deliver training courses in: Autism awareness, equalities and diversity, advocacy, sexuality and relationships, Person Centred Planning, Disability Discrimination Act compliance. 

Their vision is to create real employment opportunities in training and development in partnership with people with a  label of Autism and Asperger Syndrome.   They believe in supporting people to acquire experience, support, qualifications and mentorship in training and development.

Possibly a good organisation to have in your address book.

 

_____________________________________________________

The Rainbow School

The Rainbow School for autistic children was founded by a group of parents with autistic children, in September 2000.

The Rainbow Charity for children with autism                                                                                                                                                                    520 Garratt Lane                                                                                                                                                                                                                London SW17 ONY

TeL: +44 20 8879 7700

http://www.rainbowschool.org.uk/

 

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Brookdale Care

14 Parkway
Welwyn Garden City
Hertfordshire, AL8 6HG
United Kingdom

Tel: 01707 332244
Fax: 01707 332255

Email: referrals@brookdalecare.co.uk

 

Brookdale Care specialise in residential care and secure hospital services for people with Autism and Aspergers Syndrome (Autistic Spectrum Disorder). Our services are designed to meet the challenging needs of adults and adolescents on the Autistic Spectrum in a highly supportive, therapeutic and homely environment.

Making A Referral

Making a referral to Brookdale is a straightforward process. The first stage is to contact us by phone on 01707 646 646 or e-mail us on referrals@brookdalecare.co.uk

 

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SENDIST (Special Educational Needs & Disability Tribunal)


For up to date SENDIST information check out their website.

http://www.sendist.gov.uk/basic.cfm?aid=1E2035E1-2F6E-11D6-A1B700A0CC5E79D9&section=4

Please note the address has changed and they no longer accept Appeals from
Wales (the new details for Welsh SENDIST are on this site too).
 

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Funding advice for Special Needs Schools

Joint Educational Trust.  If you’ve read the Velvet Bulldozer you’ll know that we found this a life-changing organisation.  If you haven’t read the book I’d still urge you to contact them for advice.  It is possible that they might be able to put you in touch with a charitable body who may help to fund special needs schooling for your child.  JET have a list of all these plus they are able to guide you to those organisations who may be especially relevant for you.  In our case it was organisations who offer help to adopted children.

Joint Educational Trust, 6 Lovat Lane, London, EC3R 8DT.

Telephone 020 7283 3445.

Website address www.jetcharity.org.

Also try :

Educational Grants Trusts www.educational-grants.org.

 

 

 

Educational Advocacy & Advice

I mention IPSEA several times in the book as I found them very helpful.  Do check out their website for current up-to-date information:

www.ipsea.org.uk

 

 

 

The objective of Adders is to promote awareness to AD/HD (Attention
Deficit/Hyperactivity Disorder) and to provide information and as much free
practical help as they can to those with the condition, both adults and
children, their families in the UK and around the World via their website.

www.adders.org
 

 

 

ACE (Advisory Centre for Education) is also an extremely helpful organisation:

 

www.ace-ed.org.uk

 

 

 

It took me a while to find OAASIS (Office for Advice, Assistance, Support and Information on special needs) but I was glad I did:

http://www.oaasis.co.uk/home.htm

 

 

 

May I also suggest you contact Asset.

 

Advocacy Services for Special Education and Training

enquiries.asset@gmail.com

 

http://www.assetuk.org

 

I can most certainly recommend Claire Franklin who is part of the Asset team.

 


Auditory Processing UK 

 www.apduk.org

Very interesting and proactive organisation.  If you suspect any of your
family suffer from auditory processing (at least two of our boys have been
diagnosed and I'm sure the third has it too) then it is worth contacting
ADPDUK for help and advice.

Auditory processing is often confused with deafness.  With auditory
processing the hearing is fine it is the slowness of getting the messages
from the ear to the brain which is a problem - especially in mainstream
school settings.
 

 

 

Contact a Family

Another extremely useful organisation I mention in the
Velvet Bulldozer.  Worth trawling their site for all sorts of infomation
about a huge range of disabilities:

http://www.cafamily.org.uk/

 

 


SOS!SEN - IMPORTANT NEWS!!!!!!  SOS!SEN are an excellent organisation.   If you are involved in any sort of battle regarding your child's special needs, trying to get a Statement for example, I REALLY would recommend  that you talk to SOS!SEN  and try to get to their events.   You'll learn a lot!! I have spoken enthusiastically before on this website about two-day workshops I attended last year and the year before, given by SOS!SEN.  They were extremely well put together and I know I wasn't alone in feeling empowered by the knowledge I gained there from this fabulous organisation.  The sort of information they can impart is invaluable, as is the opportunity to ask questions and get advice directly from SEN Barrister John Friel and SEN solicitor Melinda Nettleton.
 
This would be particularly invaluable if you have a SENDIST Tribunal looming as SOS!SEN stage a 'mock tribunal'.   The people involved in the mock up have all been very involved in Tribunals themselves and it will help to de-mystify this in a unique and extremely helpful way.  I will never forget how isolated we felt as we battled on.  This event gives you the chance to meet up with other parents and also talk to some of the leading special needs legal experts in the country and drink in their advice.  I think you'll find this money well spent.   Also Marion and Bob, who run
SOS!SEN as a charity, are two of the most passionate and caring people you'd ever hope to meet.  They really know their onions too!!!  I'd have given my right arm for the chance to talk to people like this when we were in the thick of the battles- a couple of minutes of good advice from them would have changed a lot of things.  And it was fun.  Very good value too!!!   Interested ?  Read on........:

For more details: phone SOS!SEN on 020 8979 2324 or email sossen@blueyonder.co.uk

SOS!Special Educational Needs  Registered Charity 1112475   
35 Staines Rd, Twickenham TW2 5BG
tel: 020 8538 3731  fax:  020 8255 7657
 
Please note the new website address.  Very useful.  I strongly recommend that you visit this site: http://www.sossen.org.uk
 

HELPING PARENTS OF CHILDREN WITH SEN  - WHAT DO WE DO?

We offer a free, friendly, independent, confidential and local telephone helpline for parents and others looking for information and advice on Special Educational Needs (SEN). We concentrateon helping people to find their way through the legal and procedural maze which is so daunting to so many who try to obtain satisfactory provision for a child’s special needs.

Our aim is to encourage parents and carers eventually to become empowered and confident to

tackle for themselves the obstacles and difficulties, which arise, and in turn to use their knowledge

and experience to help others

WHO ARE WE?

We are all volunteers who have spent much of our lives in education or related services.

WHAT HELP CAN WE OFFER?

interpreting official letters

interpreting the SEN Code of Practice and other related documents

checking proposed and revised Statements of special educational needs

helping prepare letters of request, comment and complaint

finding independent professional advice – e.g. independent educational psychologists, lawyers etc.

giving guidance on the next available procedures which may be suitable

acting as a “friend” to accompany parents on visits to the offices of officials in the

education, health and social services and to meetings in schools

advising on preparation of case statements for SENDIST (Special Educational Needs and Disability Tribunal)

presenting cases at the Tribunal

helping with complaints to the Local Government Ombudsman

organising training workshops and other opportunities for parents and carers to come together

WHERE ARE WE BASED?

We work from our new offices at 35 Staines Rd, Twickenham TW2 5BG. This location makes it

easy for people from surrounding authorities to come to see us if they have a particularly complex

problem.

HOW DO WE WORK?

We can be called on the Helpline and one of our co-ordinators will listen carefully and either

provide an immediate answer to questions or, more likely, take a few details and ask the most

suitable member of the team to call back. On those occasions when we are not available a message

and phone number can be left. The line is open 7 days a week

WHY DO WE DO IT?

We started the Helpline in October 2002 because we recognised that there are many parents and

carers who are not fully aware of their children’s rights to special education and of the complexities

of the procedures to obtain these rights. Many did not have the financial resources to obtain the

help of the legal profession but felt that they could not get anywhere without it. Whilst the role of

lawyers and expert professionals is very important much can be done to help even if finances are

very limited.

HOW SUCCESSFUL ARE WE?

Between October 2002 and February2004, we were contacted by 142 callers. We are growing fast.

We have evident success from Tribunal results where most or all of the requests by parents for

better provision have been upheld and, amongst other successes, in helping parents negotiate and

obtain from their LEAs

agreement to carry out Statutory Assessments.

rights to school transport,

improved Statements of Special Educational Need,

increased educational support for their children in mainstream school or by placement in specialist schools

therapy for children with speech and language, sensory, and motor skill difficulties.

As a result of our workshops parents are becoming more sure about the types of questions to ask at

Annual Reviews or when involved in the drawing up of Individual Education Plans (IEPs) for their

children. Above all we have evidence that more and more parents are increasing their knowledge

and confidence and that they are passing their knowledge on to other parents.

HOW ARE WE FUNDED?

To ensure our total independence we will not accept any offers of finance from local education

authorities. We do not believe that any fee for our help should be charged to parents Our funds,

therefore come from the usual range of events – social evenings, jumble sales and coffee mornings.

We do receive modest donations. We do not have a separate office and volunteers work from home.

Basic costs are, therefore, not too difficult to cover. Other costs are.

Surplus funds, therefore, go to help parents with limited means and who are trying to obtain the

detailed advice of independent educational psychologists or therapists and to paying on occasions

for legal advice.

SOS!SEN on 0208 979 8853 or email sossen@blueyonder.co.uk.

For good up to date advice on the Statementing process click here

Click here for sample SOS!SEN newsletter

SEN Legal (this is what I talk about in the book – one contact can lead to another but it is so difficult if you don’t know where to even start!!).

SEN Legal provide:

  • Help for parents who are unhappy with the advice given and the provision they are receiving from their school or local education authority (LEA).
  • Help for former pupils whose schools failed them.
  • A family friendly service available 9-5 weekdays, or evenings and weekends to fit in with parent's working hours where this would be more helpful.
  • Expertise, Experience, Efficiency.

SEN Legal is a Solicitors practice that specialises in education law and special educational needs. They provide a service throughout England and Wales offering advice, help and representation on all aspects of education law, including special educational needs (assessment, statementing, placement, SEN tribunals), admissions, inclusion / exclusions, school refusals, bullying and home tuition. We are a member of ELAS (the Education Law Association).

I cannot endorse them as I haven’t used them but the solicitor, Melinda Nettleton, is very well known in the world of SEN so it might be worth following up.

 

 

Seminars/Workshops/Events for Parents

 

I do talk about this in the Velvet Bulldozer (which I hope you are about to order from your library if nothing else as it really will help you). We knew nothing like this existed when we were in the thick of things.  I have now attended some extremely useful events on diverse issues such as; challenging behaviour, Direct Payments, ‘speaking the language’ (ASD), I’ve mentioned the fascinating talk I went to given by professor Simon Baron-Cohen.  I know all these things take time but I regard it as time well spent.  I’ve learned a lot which I’ve been able to apply to the situations we’ve found ourselves in regarding the children. 

The NAS  (National Autistic Society) often have events around the country and if you join you will be sent details.  They always offer discounts on fees for parents/carers. 

If you belong to something like the All Wales Forum they will often cover the cost of your fees.

The other thing about attending events like these is you do get to meet a lot of other parents.  You will gain strength and comfort from talking with other people in the same boat as well as learning more about your child and how you can actively help.

Surf around the web and check out some of the following organisations:

 

Autism West Midlands (very helpful organisation):

www.autismwestmidlands.org.uk

Autism West Midlands are holding a conference on June 30th and July 1st.  There’ll be a certain very nervous ‘Velvet’ person speaking there if you want to come along and heckle!!!!

They often run very helpful and interesting events. I’ve two flyers on my desk at present for the following :

‘Autism and the Senses’ to help those who live or work with people with ASD (for example our son Richard doesn’t feel pain in the same way as you or I might which can be tricky if something is wrong.  Twice he has broken his arm (left and right – playing football!) but nobody thought it was broken as he wasn’t reacting like a chap with a broken arm!  This wasn’t too serious but we have to watch him as he might not be aware of the pain from appendicitis for example.

 

‘Advocacy and Autistic Spectrum Disorder’.  Advocacy is a buzz word at present so it wouldn’t hurt to learn more.

I’ve also recently been in touch with the Council for Disabled Children who seem to provide very interesting information.

www.ncb.org.uk/cdc

020 7843 1900 

 

LOOKING UP

THE 40-PAGE MONTHLY INTERNATIONAL

AUTISM NEWSLETTER


Editor: Adam Feinstein, email editor@lookingupautism.org

Web page maintained by Joel Feinstein


LOOKING UP is a monthly 40-page international newsletter devoted to autism. Aimed at parents and professionals alike, it is a lively and informative mix of the very latest findings in autism research from around the world and articles which explore the impact of autism in all areas.”

 I highly recommend you to take a look at Adam Feinstein’s ‘Looking Up’ website –packed with interesting and relevant articles and snippets.

 

 

I hope that you achieve your goal of a happy and well rounded child.  Maybe one of these contacts will help you with this.

Click here or on the Velvet Bulldozer to return to Home Page
 

 

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