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SEN Support Group by mifei

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									                                                                     SEN* Support Group
Introduction and Contents
Some of the most valuable advice and support you can get as a parent is from other parents who have been there
before. It’s very comforting to know that you are not the only one in a particular (and unfamiliar) situation. There may
be tips to try, organisations to support us (after all, we don’t know what we don’t know!) or we may just need someone
to listen. This is obviously relevant to all parents, but being the parent of a child with special needs adds an extra
dimension.
A recent parenting course identified a few issues that parents of children with varying special needs would like some
guidance on – but there wasn’t a course to fit the bill. Consequently, Julie Shorter, the Extended Services Co-ordinator
for the Henley Partnership of schools has found a venue, the resources and the experts, to help us start a parent support
group to look at some of these topics.
This document records (at a high level – no names) what we’ve discussed, to use as a reference and to pass to new
parents. Please send any updates, useful contacts etc to Vic Morgan or Julie Shorter – If you print the document,
please shred the Contacts page when no longer required.
*SEN stands for Special Educational Needs


Contents
Introduction and Contents ................................................................................................................................................1
Meetings of the Support Group.........................................................................................................................................1
Forthcoming Events ..........................................................................................................................................................2
Potential Topics of Interest ...............................................................................................................................................4
Sports, Social Clubs and Days Out .....................................................................................................................................5
Financial Support ..............................................................................................................................................................8
General Support & Support Groups...................................................................................................................................9
Publications ....................................................................................................................................................................12
Equipment ......................................................................................................................................................................12
Hints and Tips .................................................................................................................................................................13
Words of Wisdom ...........................................................................................................................................................13
Contact List ...................................................................................................................... Error! Bookmark not defined.14



Meetings of the Support Group
Some meetings will simply be an opportunity to meet and chat and others may be discussions and others presentations
by relevant professionals and organisations followed by informal questions (likely topics listed below). We will also have
a library of books and DVD’s, and a file of our hints, tips and relevant organisations. The first meeting was held at D:two
in Henley on March 26th 2009 and will be fortnightly until the summer holidays, and monthly from September 2009

Updated: 20th May 2009                                                                                                                                                  Page 1
(please get in touch if you have any comments about this). Please note that we can provide childcare for the meetings, if
you give us some notice.

Next Meeting: Wednesday 3rd June 2009 19.30-21.30 Upper Room D:2 RSVP
Future Meeting Dates:
Day                       Time                   Venue                    Topic
Weds 3rd June             19.30-21.30            Upper Room D:2           Autism Family Support with special speaker
                                                                          Gita Lobo – RSVP to Julie ASAP
Thurs 18th June           10-12                  NOW AT THE Chiltern      With special speaker Steve Laurence,
                                                 Centre                   Oxfordshire County Council expert on
                                                                          accessing benefits, DLA, allowances, tax
                                                                          credits etc – RSVP to Julie ASAP
Weds 8th July             12-2.30 (Lunch inc.)   D:2                      Special “break up for summer” lunch cooked
                                                                          by the excellent cook Gillian – RSVP to Julie
                                                                          by JUNE 15th
Thurs 10th September      10-12                  Thames Room D:2          “Welcome back”
Thurs 24th September      10-12                  NOW AT Bishopswood       Hosted by Bishopswood, with a special
                                                                          theme. If you have any topics you would like
                                                                          covered please email Vic or Julie.
                                                                          TBC – moving to monthly meetings
Mon 5th October           10-12                  Upper Room D:2           TBC – moving to monthly meetings
Mon 19th October          19.30-21.30            Upper Room D:2           TBC – moving to monthly meetings



The Children’s Centre can provide (free) childcare for the sessions if booked in advance.

Forthcoming Events
Date                   Event                                         More Information / Booking
May 18th – May                                                       See separate email “Raising Awareness
                       Wokingham Autism Partnership – Raising Awareness of
23rd                   Autism, Events and Activities                 of Autism”
May 26th + half-       Please see separate email for activities.     See separate email “May half term
term                                                                 activities”
May 28th, June  Communication Passport Making Workshop – to make a Email:
26th, July 27th communication passport for an individual with a      clare.sherratt@oxfordshirepct.nhs.uk
                learning disability with members of a speech and     Susannah.hinchliff@ridgeway.nhs.uk
                language therapy team.
9th June 2009   How to run a workshop for parents on supporting      Sibs - For brothers and sisters of
Leeds: 9th June siblings - Training for professionals working with   disabled children & adults
2009 10am – 4pm families of disabled children.                       www.sibs.org.uk
                                                                     Email: info@sibs.org.uk
                                                                     Tel: 01535 645453
   th
10 June, 10-    Want to find out about the SEN system? Looking for a Didcot Children’s Centre, 2 Hillary Drive
11.30am         chance to talk things through? Parent Partnership    Didcot.
                Oxfordshire will provide impartial information and
Updated: 20th May 2009                                                                                            Page 2
                   advice. For more details telephone: 01865 810516
            th
Thursday 11        “LogicallY Illogical” Information and Insights into Autism   Northampton University
June, 7.30pm       by Ros Blackburn, who has autism. Organised by
                   Autism Concern of Northampton. Contact Julia on
                   01604 239404 or email julia@autismconcern.org
Friday June 12th,  Lone Parent Support Group meet at a local pub.               Henley
8pm                Contact Sue Prior on 01491 635734.
Saturday 13th June London Zoo Special Children’s day (please see separate
                   email)
June 13th, 2 – 4pm Mencap Fete (More relevant if local?)                        Leatherhead, Surrey
June 16th 2009     Free conference on autism and aspergers syndrome –           Dragon Hall, 17 Stukeley St, London
                   practical strategies for parents. Book online at
                   www.cambianeducation.com
        th
June 18 ,          KidzSouth – brilliant exhibition, call 0161 214 5962 or      Rivermead leisure centre, Reading
Thursday 9.30-4.30 email kidzsouth@disabledliving.co.uk for free tickets I
                   HAVE FREE TICKETS
June 18th,         Conference - Manual Handling – “Looking at it from a         The Rivermead Leisure Centre, Reading
Thursday 9.00-     young person’s perspective” (Running alongside Kidz          Book by calling Jean on 0161 214 4592
12.30              South Exhibition)
Repeated 1.00-     £45 per person
4.30
June 21st          Hemihelp fun day, for the whole family – 10-4, contact       Surrey
                   Hemihelp
              th
Saturday 18 July   SPECIAL NEEDS TALENT SHOW - KENTON THEATRE                   Contact: Jane
                   HENLEY.                                                      Telephone: 0118 970 6704
                   Hosted by Building For The Future                            Email:
                   We are looking for talented children to perform for          buildingforthefuture@googlemail.com
                   approximately five minutes each and it can be anything
                   at all ... dancing with help, singing harmonies, playing
                   an instrument, composing music on the computer,
                   poetry, acting, showing us a clever way to get around
                   etc etc. Basically, anything goes. The only rule is, it
                   must be something that the child is proud to perform -
                   perhaps it is something they have worked particularly
                   hard at, or been told they are good at. The idea is to let
                   our children shine and to give them a massive
                   confidence boost .
           th
Sunday 19 July     Lone Parent Support Group. Childcare and children’s
10.45-12           activities available. Contact Sue Prior on 01491 635734.
                   Will be followed up with either a picnic or BBQ.
Thursday 28th July HemiHelp filmmaking workshop for 11-16 year olds, at         Email Helen: helen@hemihelp.org.uk to
                   BBC Digital Learning Centre, London                          register your interest and find out more
Various dates,     Arts & Crafts – 13/6, 27/6, 11/7                             Crescent Centre, Earley
9.30-11.15 am      Cookery – 6/6, 4/7                                           To find out more or book your child a
                   This group is available to all Mencap members                space, please contact:
                   providing the opportunity for children with learning         Wokingham & District Mencap
                   disabilities and their siblings to enjoy various arts and    Tel: 0118 9798539
                   crafts in a fully supportive environment.                    Email: admin@wokinghammencap.org
                   There is a charge of £2.00 per session and we ask
                   parents to stay on site; there is a pleasant Café with the

Updated: 20th May 2009                                                                                           Page 3
                      opportunity for chat or some time to yourself on a
                      Saturday morning.
Summer                The Riverboat Trust have a specially adapted boat and          Julie will provide details later.
                      are offering 12 of us a trip in the summer, paid for by
                      the Children’s Centre.
Summer                Wokingham Borough Council have a range of sports
                      activities and clubs running in the summer, contact
                      Lucy.Skye@wokingham.gov.uk for details.
Summer Holidays       All 4 Sport is running multi-sport sessions specifically for   www.wokingham.gov.uk/sports
                      children with additional needs aged five to 11 years.          Tel: 0118 974 6264 / 6265
                      Tuesdays 4, 11, 18 and 25 August from 10am to                  Email:
                      12noon, at East Park Farm Pavilion, Charvil. £8.60 per         sportsdevelopment@wokingham.gov.uk
                      session.
                      Incl. Soccer, Goalkeeping camp, Tennis, Tri-Golf,              Or email Vic for the
                      Hockey, Cricket, Netball, Watersports, Survival Skills –       Spring in2 Action 2009 programme.pdf
                      camping, fire lighting etc at Dinton Pastures
                      I am not sure whether this is just for Wokingham people
                      – please contact them if interested.
                      NB. There is also an East Park Farm holiday Playscheme.
Summer holidays       Guidepost, Camp Mohawk etc. Please see “Holiday                Wargrave?
                      Club” entries in the “Sports, Social Clubs and Days Out”
                      section
November 26th         KidzNorth                                                      Bolton


Regular Forums/ Activities:
    Parent / Carer forum at the Children’s Centre at D:two. All parents and children very welcome. Contact Fran on
        01491 577414
    Lone Parent Support Group. Childcare and children’s activities available at D:two. An opportunity to get
        together over coffee and discuss any issues you would like. Contact Sue Prior on 01491 635734.
    Please see the “Sports, Social Clubs and Days Out” section for regular activities.


Potential Topics of Interest
Potential topics to discuss – please feedback what you want to cover and we will decide whether the information is
known in the group, or whether we need to employ an expert in the field. (Julie Shorter has funding and is starting to
book experts in various fields – details to follow.) Obviously, not all these issues will be relevant to you and your family,
you will be welcome to attend as many of the sessions as you like. The notes will be padded out as information is
identified.
 Sibling support
 School choice (all levels) – Gail Hanorahan (via Marion?)
 Anything related to therapy/ support etc for children with cerebal palsy.
 Speech related emotional and practical support.
 Epilepsy
 Parent support (emotional and practical)
 Social group for the children themselves (sports, ICT, disco etc.)
 Statementing (incl. A flowchart of steps to take) – Downs Syndrome society offer support and a workshop

Updated: 20th May 2009                                                                                                   Page 4
   Carers Allowance, Disability Living Allowance, Blue Badge Parking
   Charities to help, Funding for support / equipment – e.g. Cerebra
   Relevant organisations – eg. Hemihelp, Care for a family (Jackie Cooke, Social Worker), Autism Speaks, Didcot ADHD
    & Autism group
   Alex Crockett, Early Years SEN Inclusion Teacher (old term Pre-school teacher counsellor)
   Chiltern Centre – Marion Lee, 2-25 years
   Dads & Grandparents

Other topics originally proposed:
 Puberty support
 Immunisations support / advice eg.HPV for girls
 Behaviour support
 Wellbeing / De-stress sessions
 Helping children access clubs and play places
 Independent Parent Partnership - help with 'the system'
 Sharing information about tried and tested toys, days out, holidays etc
 Parenting Support discussing questions such as: What to say when he/she and others start noticing differences?
   How to maintain and encourage friendships? What to say when younger siblings overtake in size/academic
   achievement? Guilt management when you can't do everything the therapists ask? How to raise questions with
   teaching staff? How to help the children communicate frustration?

Julie passed round a questionnaire asking what our priorities were so she could start booking speakers. Please let us
know which of the following options interest you:
 Alyson Martin Specialist Nurse – Growing up / Coping with change. Alyson is a very experienced nurse who will come
     and tell us what she (and Emma Hyde) can offer. [Question from Vic, are there SEN Health Visitors?]
 Care for the Family Charity
 Help with form filling – Disability Living Allowance etc
 SEN Physiotherapist
 Speech and Language Therapist
 A de-stress pamper evening
 A local 18 year old with SEN who attends Henley College to tell his story
 A specialist parenting children with SEN course
 Something for Dads, any thoughts? Please ask if they would be interested.
 Anything else?


Sports, Social Clubs and Days Out
Area of Interest /                                                             Contact Details
Support
Club - Siblings    Woodley Siblings Club begins again on Monday April 27,      For further details contact
                   at Woodley Community Centre and currently has several       Mencap
                   spaces.                                                     Tel: 0118 979 8539
                                                                               Email: openmindart@ntlworld.com
                   There is also a NEW Siblings Group, starting in
Updated: 20th May 2009                                                                                          Page 5
                   Wokingham on Thursday, May 7. This group is for
                   children between the ages of 8 and 14 years living with a
                   learning disabled brother or sister. The emphasis of the
                   group is on the children having fun, developing their
                   social skills, trying out various activities and playing
                   games together. The group will run on Thursdays after
                   school at the Bradbury Centre, which is the community
                   rooms attached to the Rose Street Methodist Church.
                   Each session will start at 5.00pm and finish at 6.45pm.
Holiday Club       Camp Mohawk
Holiday Club       The Guidepost Trust                                            At: Bishopswood Special School in
                   A fully inclusive holiday activity club for children aged 3-   Sonning Common
                   16 are welcome.                                                Telephone: 01933 899980
Leisure            Theatre – The Wycombe Swan Theatre                             High Wycombe
                   Will give a free ticket to the carer when a disabled person
                   buys a ticket.
Leisure -          Legoland
Legoland           Lastminute.com are currently selling a Full Annual
                   Children's pass for just £10 (normal online price would be
                   £47.70) - the only catch is that it MUST be redeemed in
                   person before 31 May 2009.
                   Full details are here:
                   http://www.lastminute.com/site/entertainment/event-
                   product.html?skin=engb.lastminute.com&eventID=64369
                   2124-1&venueIDCode=4
                   When used with the CAN card, it means that a carer and
                   child can visit legoland as many times as they like in a
                   whole year, for only £10.

                   If you have proof of your child’s disability, you can get an
                   exit pass, to save queuing for the rides – you go to the
                   exit and are first in!
Play Place         Thames Valley Adventure Playground                             At: Taplow
                   A safe place for disabled children and their siblings to
                   play.
Play Place         Thomley Centre                                                 Menmarsh Road, Worminghall, HP18
                   A safe place for disabled children and their siblings to       9JZ
                   play.                                                          www.thomleyactivitycentre.org
                   Advanced booking necessary.                                    Tel: 01844 338 380
Sport - Football   All 4 Sport                                                    www.wokingham.gov.uk/sports
                   Term-time mini soccer courses for four to seven year           Tel: 0118 974 6264 / 6265
                   olds.                                                          Email:
                   I am not sure whether this is just for Wokingham people –      sportsdevelopment@wokingham.gov.u
                   please contact them if interested.                             k
                                                                                  Or email Vic for the
                                                                                  Spring in2 Action 2009 programme.pdf
Sport - General    Oxford Dyspraxia Activity Club                                 Contact: Julie Lambert

Updated: 20th May 2009                                                                                            Page 6
                     For 5-12year olds with a diagnosis of dyspraxia or            At: Tower Playbase, Marston, Oxford.
                     developmental co-ordination difficulities and run by a        Telephone: 01865 763621
                     trained physio.
Sport - General      WAMDSAD                                                       Contact: Melissa Ruel
                     Monthly sports fun club for physically disabled children.     Address: WAMDSAD, Braywick Sports
                     All sports are wheelchair accessible, easy to learn and are   Ground, Braywick Road, Maidenhead
                     loads of fun. Siblings welcome. Refreshments served.          SL6 1BN.
                     (Parents/carers must stay on site.)                           www.wamdsad.co.uk
                     On the third Sunday of each month 2-4pm. 2009 dates:          Tel: 0118 973 7258
                     17th May, 21st June, 19th July, 16th Aug, 20th Sept,          Mob: 07841 518 708
                     18th Oct, 15th Nov, 20th Dec
Sport -              Bulmershe Gymnastics Club                                     Telephone: 0118 9263686
Gymnastics           A weekly class for children with SEN, Saturday 12-1pm.        Email:
                                                                                   contact@bulmershegymnastics.co.uk
Sport – Horse        Riding for the Disabled                                       www.riding-for-disabled.org.uk
Riding               Very therapeutic for many conditions.
Sport - Swimming     Carnival Pool, Wellington Road, Wokingham                     Carnival Pool, Wellington Road,
                     From Friday June, 5 a weekly public swimming session for      Wokingham
                     disabled children and adults and their families and carers    Tel: 0118 977 0007
                     will be held at Carnival Pool.
                     It will run from 6.15pm to 7pm, and usual entry costs
                     apply. CAN Card holders only have to pay £1.20 per child
                     (under three years go free), and a carer can swim for
                     FREE.
                      Monthly Saturday family swims begin on June 6, and are
                     FREE. These take place from 6.30pm to 7.30pm.
                     Dates for future months include July 11, Augt 8, Sept 5,
                     Oct 10, Nov 14, Dec 5.
                      All swim sessions have a range of floats and toys.
Sport - Swimming     Gillotts swimming pool
                     A fun session for children aged 8+ 6-8pm on a Friday
                     night, Caroline Edwards would be happy to share the
                     supervision of children with SEN.
Sport -              All 4 Sport                                                   Contact: Lucy Skye (Information and
Trampolining         Is running trampolining for Children with Additional          Participation Officer for Children with
                     Needs. Starting on Thursday June, 4 and running weekly        Additional Needs)
                     during term-time at Loddon Valley Leisure Centre, Rushey      www.wokingham.gov.uk
                     Way, Lower Earley.                                            www.childcarelink.gov.uk
                     Age five to 10 years - 5.30pm to 6.30pm                       Tel: 0118 974 3750
                     Age 11 to 16 years – 6.30pm to 7.30pm                         Email: lucy.skye@wokingham.gov.uk
                     Maximum of 8 children per group. Cost £3 per session.
                     I am not sure whether this is just for Wokingham people –
                     please contact them if interested.

Please Note:
Many places will let a carer in free – so always ask!


Updated: 20th May 2009                                                                                               Page 7
Working Tax Credits. Any club registered as childcare allows parents who are eligible to claim Working Families and
Childcare Tax Credit to assist with fees. For information see www.direct.gov.uk.


Financial Support

Area of Interest /                                                                    Contact Details
Support
                     £250 a year – can be claimed. Julie will provide further
                     details.
Travel               Free bus travel in South Oxfordshire for disabled young          Contact: Ed Nieburg at SODC
                     people and accompanying adult (resident in South                 Tel: 01491 823129
                     Oxfordshire). Can be used in South Oxon 9-11 am, all day
                     weekends and Bank Holidays.
Equipment            Newlife                                                          www.newlifeable.co.uk
                     Foundation for significantly disabled children who need          Tel: 0800 902 0095
                     equipment at home.                                               Email: nurse@newlifecharity.co.uk
                     Vic has a list of lots of charities that can be approached for
                     funding (to be added later) – please get in touch if you
                     need them in the mean time.
                     The Community Chest                                              Telephone: 01865 256646
                     A pot of money which is made available to children aged 5-
                     13 who may have difficulty getting to ‘fun’ activities because
                     they can be expensive or difficult to get to. Unfortunately
                     the fund can not pay for a Support Worker or for any school
                     trips or activities unless under very exceptional
                     circumstances. Application forms are readily available from
                     school offices.
                     Direct Payments
                     Apparently where a family/carer gets a pot of money to
                     spend as they see fit.
                     Information about direct payments from gov. website. See
                     link below.
                     http://www.dh.gov.uk/en/SocialCare/Socialcarereform/Pers
                     onalisation/Directpayments/DH_080273
                     Henley Educational Charity
                     Provides financial assistance for the education of young
                     people. To be eligible applicants must be under 25 years and
                     living in the town of Henley or the parishes of Bix,
                     Rotherfield Greys or Remenham or be attending a state
                     maintained school or college in one of those areas. Financial
                     assistance can also including the purchase of uniform.
                     Application forms are available from school offices.
                     Rotherfield Peppard Relief in Need                               Contact: Sue Nickson (Chair) 01189
                     A small charity which can provide financial help for a wide      724520, Pat Fraser (Clerk) 01491
                     range of needs to those living in the parish of Rotherfield      629631
                     Peppard.

Updated: 20th May 2009                                                                                              Page 8
                    Rotherfield Peppard Educational Charity                           Application forms available from
                    Provides funding for young people up to the age of 25 who         Rotherfield Peppard Educational
                    live in the parish for educational projects, for example,         Charity,Two Meads,Church Lane,
                    school trips. Awards are not means-tested.                        Rotherfield Peppard, Henley-on-
                                                                                      Thames, Oxon RG9 5JN



General Support & Support Groups
Area of Interest                                                                      Contact Details
/ Support
Aspergers,         Speak Out                                                          Contact: Amanda Jones
Autism,            Speak Out is a Didcot based support group for parents/carers       At: Didcot
Dyspraxia and      who have children diagnosed with Aspergers, Autism,                Telephone: 07825 823449
ADHD               Dyspraxia and ADHD. The group is informal and offers a
                   chance for parents to share experiences and specific topics
                   are covered by visiting professionals.
Autism             Berkshire Autistic Society                                         www.autismberkshire.org.uk
                                                                                      Helpline: 0118 9594594
                                                                                      Email:
                                                                                      contact@autismberkshire.org.uk
Autism             Oasis Oxfordshire Autistic Society                                 Telephone: 01865 750160
                   Offers support, advice and information.
Cerebal Palsy      Scope                                                              www.scope.org.uk/index.shtml

Education          DCSF
                   A search engine to get a list of educational establishments, eg.
                   Can do a search by postcode / within certain radius, eg. 21
                   special schools in 15 mile radius of RG9.
                   http://www.edubase.gov.uk/home.xhtml;jsessionid=965F47D
                   3F1C5BD9D3DF6B7E661487602
                   All part of:
                   http://www.dcsf.gov.uk/ which also has
                   List of Non Maintained Special Schools
                   http://www.teachernet.gov.uk/docbank/index.cfm?id=3934
                   Approved independent special schools
                   http://www.teachernet.gov.uk/docbank/index.cfm?id=12386
General            (Local) Childrens Centres                                          www.surestart.gov.uk
General            ASNA                                                               Contact: Sophia Nicholls, Hon
                   ASNA is a registered charity launched in 2001 by parents,          Secretary
                   carers and people with disabilities, for people living with
                   disabilities and special needs. ASNA provides:                     ASNA
                   ·      social, spiritual, physical, emotional and educational      65 St Helens Avenue, Benson,
                   support for people living with special needs, and professionals    Oxfordshire, OX10 6RU
                   living and working with people with specials needs and             Tel: 01491 833395
                   disabilities                                                       www.asna.info
                   ·      training and awareness programmes / workshops /             Email : asna@special1.fsnet.co.uk /

Updated: 20th May 2009                                                                                                Page 9
                seminars / courses / literature / AV material                       sophia.nicholls@special1.fsnet.co.uk
                ·     consultancy is disability awareness and programme
                development
                ·     respite and support
                ·     resources and information and advice
General         Children’s Information Service
                Oxfordshire Children's Information Service:
                http://www.oxoncis.org.uk/site/index.php
                Which features a South Oxfordshire Guide:
                http://www.oxoncis.org.uk/site/images/images/ocis-south-
                guide.pdf

                Reading, Bracknell Forest & West Berkshire:
                http://www.childrensinfo.org/
                incl.:
                http://www.childrensinfo.org/westberksspecialneeds.html

                http://www.citizensadvice.org.uk/
General         Contact a Family / Care for a family                                Contact: Sophia Nicholls is the
                Help with: Information on local services, negotiating with          Oxfordshire volunteer parent
                agencies, helping families access benefits and other sources of     representative.
                financial help, support through periods of increased stress         www.cafamily.org.uk
                such as receiving a diagnosis or moving school                      Freephone helpline: 0808 808 3555
                Sophia will come and do a talk on the services offered - Care       Telephone: 01491 836765
                for a Family do holidays for the children and holidays for the      Email: info@cafamily.org.uk
                siblings AND weekends away for mums!
General         Home-Start                                                          Contact: Fran
                If you have at least one child under five then Home-Start can       Telephone: 01491 577414
                help. They support thousands of parents through Home-Start
                volunteers. The volunteers will visit in the families own home
                – usually once a week. You can benefit from Home-Start’s
                help if: you are feeling lonely or isolated in your community;
                you are finding it hard to cope if your child is ill or because
                you are ill; you have been hit hard by the death of a loved
                one; you need help with
                practical things like budgeting or healthy eating; you’d like to
                get to know what is available for parents and children locally
                but don’t know where to go or don’t have the confidence to
                find out or join in; you’d like to find out about local
                further education courses but don’t know where to start.
General         Independent Parent Partnership                                      Telephone: 01865 810541
                Offers independent support and advice for parents.
General         Learning Difficulties and Disabilities Service                      Contact: Lucy Skye (Information and
                Children's Services, Wokingham Borough Council                      Participation Officer for Children
                Lucy sends out a lot of information on clubs, sporting activities   with Additional Needs)
                etc. I am waiting to hear if this is open to us all or just those   www.wokingham.gov.uk
                under Wokingham Borough Council.                                    www.childcarelink.gov.uk

Updated: 20th May 2009                                                                                          Page 10
                                                                                      Tel: 0118 974 3750
                                                                                      Email: lucy.skye@wokingham.gov.uk
General          Oxfordshire Services Directory                                       www.oxfordshireservicesdirectory.o
                                                                                      rg.uk
General          PHAB                                                                 www.phabengland.org.uk
                 Phab' s aim is to promote and encourage people of all abilities
                 to come together on equal terms, to achieve complete
                 inclusion within the wider community.
General          Reading Children’s Information Service                               www.childrensinfo.org.uk
General          South Vale Carers Association                                        Details?
                 One group member was helped enormously by the South Vale
                 Carers Association in filling out a successful Disability Living
                 Allowance application.
General          Talking Points                                                       Telephone: 01865 810516
                 Want to find out about the SEN system? Looking for a chance
                 to talk things through? Parent Partnership Oxfordshire will
                 provide impartial information and advice. Sessions are held at
                 various locations.
General          The Children’s Centre                                                At: D:two, Henley-on-Thames
                  Offers many services (details to follow). You can book the
                 wonderful sensory room by ringing Fran.
General          The Chiltern Centre                                                  Contact: Marian Lee or Noelle Floyd
                  The centre offers a range of services and support including         At: Greys Road, Henley-on-Thames,
                 Respite and Buddies Social Group for young people age 13+.           RG9 1QR
                 Marion Lee, the manager of the Chiltern Centre, can offer            www.chilterncentre.co.uk
                 great fun care at the centre for SEN children so the parents         Telephone: 01491 575575
                 and siblings can have some time out. She also runs a social          Email:
                 group for both little ones and older young people – and is           chiltern@chilterncentre.demon.co.u
                 looking to set up a group for those in-between.                      k

General          The Oxfordshire Family Support Network                               www.oxfsn.co.uk
                 Produce a great newsletter which contacts, links and events to
                 attend - sign up to receive it at:
Hemiplegia,      HemiHelp                                                             http://www.hemihelp.org.uk/
Cerebal Palsy,   Provide support for people with hemiplegia, a great source of        Helpline: 0845 123 2372
General          information and practical advice (relevant to a range of
                 disabilities).
                 Information leaflets, incl. equipment, music, bikes etc:
                 http://www.hemihelp.org.uk/hemiplegia/publications/leaflets
                 /
Lone Parent      Lone Parent Support                                                  Contact: Sue Prior or Fran Bunkall
                 A regular support group meets in Henley. A free creche,              Telephone: 01491 577414
                 childcare and sensory room available for children with special       Email: sue@nomadhenley.co.uk
                 needs and childcare / activities for older children) is available.
                 See above for dates.
Parenting        Parenting support courses (free)                                     Contact: Marian Lee or Noelle Floyd
                 For parents of children with special needs.                          At: The Chiltern Centre, Henley-on-

Updated: 20th May 2009                                                                                             Page 11
                                                                                       Thames
                                                                                       Telephone: 01491 575575
                                                                                       Email:
                                                                                       chiltern@chilterncentre.demon.co.u
                                                                                       k
Parenting            Positive Parenting                                                www.parenting.org.uk/Detail.aspx?i
                     Run a parenting course for parents of disabled children.          d=25
Siblings             Sibs                                                              www.sibs.org.uk
                     For brothers and sisters of disabled children & adults            Email: info@sibs.org.uk
                                                                                       Tel: 01535 645453
Siblings             South & Vale Young Carers                                         Telephone: 01235 510212
                     Offers time out for siblings, one to one support, day trips and   Email: carers@svcarers.org.uk
                     fun activities.



Publications
Area of Interest /                                                              Contact Details
Support
Education          Code of Practice (DfES 0581/2001)                            DfES - now DCSF, Department for Children,
                                                                                Schools and Families
                                                                                http://publications.teachernet.gov.uk
                                                                                Telephone: 0845 6022260
Education             Inclusive Schooling; children with special educational    DfES - now DCSF, Department for Children,
                      needs (DfES 0774/2001)                                    Schools and Families
                                                                                http://publications.teachernet.gov.uk
                                                                                Telephone: 0845 6022260
Education             Audio copies of all text books.                           www.listeningbooks



Equipment

Area of Interest /                                                              Contact Details
Support

General               Dycem                                                     www.dycem-ns.com
                      A non-slip product, very useful for holding paper
                      steady for writing, crockery for eating, opening jars
                      etc. Need to open an account with Dycem, or
                      available from other sources. Comes on a roll or as a
                      ready made shape.
General               MERU                                                      Medical Engineering Resource Unit
                      MERU is a charity that helps children and young           www.meru.org.uk
                      people with disabilities. When no ready-made              Tel: 01372 752 203
                      solution can meet their needs, we use our design          Email: info@meru.org.uk
                      and engineering skills to custom-make specialist

Updated: 20th May 2009                                                                                              Page 12
                     equipment.
ICT                  AbilityNet                                               www.abilitynet.org.uk
                     A national charity helping disabled adults and
                     children use computers and the internet by adapting
                     and adjusting their technology. Our special expertise
                     is ensuring that whatever your age, health condition,
                     disability or situation you find exactly the right way
                     to adapt or adjust your ICT to make it easier to use.

Hints and Tips


Words of Wisdom
Special Mums have Special Babies
Sophia Nicholls read a great poem when she discovered her son had disabilities:
WELCOME TO HOLLAND - c1987 by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared
that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books
and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some
handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the
plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've
dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and
disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole
new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and
you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.
Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they
had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very
special, the very lovely things ... about Holland.




Updated: 20th May 2009                                                                                               Page 13
Updated: 20th May 2009   Page 14

								
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