Welcome to the October edition of the CFSG newsletter. I am pleased to have managed to produce 4 issues this year. Unfortunately this issue is different to the one planned because for various (valid) reasons those people who kindly volunteered to write pieces have not been able to produce them in time.

In these circumstances this issue attempts to provide details of charities, groups, websites and companies that maybe of use to some of you. If you have found an organisation of whatever type that has been of benefit (especially if it is not well known and of a specialist nature) please let me know as it may help someone else.

I now no longer have any pen portraits for the next issue therefore please send me a pen portrait about your child, so that I can include it in a forthcoming newsletter. It is very useful for other parents to see how other children are getting on.

Finally I would like to welcome new and returning members to the group.

Simon

NEWS

Good News!

With the continuing and often new problems we have to deal with as parents or people with CHARGE and for parents with young children it is good to be able to announce some positive news.

I have been contacted by 2 mothers following their daughters’ GCSE results. Both Caroline Marett and Zara-Jane Arnold achieved 9 passes at GCSE obtaining, Caroline obtaining 3 B’s and 6 C’s whilst Zara obtained 1 B, 6 C’s and 2 D’s. Caroline has stayed on at the 6^th Form at Mary Hare and Zara is at College studying for a BTEC in performing Arts.

Zara was also interviewed by J17 magazine in September and gave a speech at the SENSE meeting at this year’s Labour party conference.

I am happy to report other achievements not just academic but also sporting for example. Please send me your stories.

David Levey has resigned as the co ordinator of the European CHARGE Network. I would like to thank him for the work he has done in support of CHARGE Syndrome in his various capacities.

INFORMATION and ADVICE

Hanna Levey contacted the Family Fund Trust to assist financially in providing for a tricycle for her son Joshua as she knew these tricycles could be £400-500. They in turn contacted Whizz-kidz (the movement for non mobile children www.whizz-kidz.org.uk

A senior mobility therapist from whizz-kidz visited and initially assessed Joshua’s needs. She in turn contacted Malcolm and Mary Jones at Wise Wheels for a further assessment. Malcolm recommended a Tri 1 because Joshua is physically quite strong and has good control steering. This trike is also versatile, cool and has a folding frame option so it can be transported in a car. Joshua chose his favourite colour – yellow although usually the bikes are only made in red. Malcolm was very friendly and professional. It was good to see how he custom built the trike to Joshua’s specific personal needs. He was there for the delivery to make sure that all the specifications and adaptations were appropriate. For Joshua’s parent’s it has been such a joy to see him confidently racing along. It’s such a cool trike that all the neighbourhood children and friends want to have a ride on it as well.

Contact for free assessment of tricycles, walkers and hand cycles- Malcolm and Mary Jones at

Wise Wheels, Fairleads House, Top Street, Northend, Southam, Warwickshire CV47 2 TN

Tel/fax: 01295 770806

Mobile: 07980 649010

Email: squirejones@supanet.com

Website: www.wisewheels.co.uk

Tomcat Trikes Ltd - Provide custom built trikes

Contact Bob Grifin

Tel: 01453 890732

The Family Fund Trust

They give grants and information related to the care of the child. The range of grants includes holidays, leisure, laundry equipment, driving lessons and lots more. The range of information they produce includes subjects such as benefits, holidays and transport.

Family Fund, PO Box 50, York Y01 9ZX

Tel: 0845 1304542

Email: info@familyfund.org.uk

Website: www.familyfundtrust.org.uk

www.patient.co.uk

An extensive directory of UK (and non UK) websites on health, disease, and related topics including:

Database of patient groups, self help groups in the UK.

Equipment suppliers and manufacturers.

Patient advocacy.

Dycem

Leading manufacturer of non slip material. Their products are not sticky but have amazing grip without use of any adhesive. These non slip features are particularly useful for customers with mobility/gripping problems to help them safely maintain their independence. The products are child friendly and they can help visually impaired people with daily lives with elements of contrast/colour and tone.

Tel: 0117 955 9921

Email: uk@dycem.com

Website: www.dycem.com

Training

In England the Learning and Skills Council (LSC) is responsible for planning and funding education and training for people over 16. Its aims include helping people find, stay in jobs and making training and education accessible to all.

The help desk number is 0870 900 6800. In Wales the National Council (ELWA) does the same job on 08456 088066.

SNAP! News

The recruitment agency providing nannies and childcare workers for children who have special needs.

Tel: 020 77292200

Statementing - problems with

IPSEA

The independent panel for Educational advice gives help in asking the LEA for a statutory assessment of your child’s special educational needs. The wealth of info includes sample letters. Find them on www.ipsea.org.uk/ .

Tel: 0800 0184016

NDCS (National Deaf Children’s Society) provide an advice service to assist with statementing together with information sheets and sample letters.

The NDCS also provide an omnidirectory which is a guide to technology and contacts for deaf and hard of hearing people. This for example has details of all schools for the deaf.

Tel: 020 7014 1106

Website: www.ndcs.org.uk

Contact a Family has a very useful fact sheet on statementing that includes lists of types of school/education provision and also details of the Code of Practice (2001) find them on www.cafamily.org.uk .

For those of you with children under the age of 2 it is your entitlement to request the assessment for statementing of your child. The local authority has no choice but to start the procedure unlike if your child is over 2.

Contact a Family has a new and concise informative and useful publication: Disabled - education and disability – a parent’s guide to right from nursery to university. Any family can ring the freephone helpline for a free copy on 0808 808 3555 (between 10-4) Mon-Fri.

Getting help to adapt your home

If you need to adapt your home to make it easier for you or your child to manage then you may be entitled to a disabled facilities grant. For anyone considering an application for a grant it is advisable to seek further help and advice as the system can prove to be quite complex. The Family Fund Trust also produces a helpful fact sheet - Adaptations to Housing.

MERU

Medical Engineering Resource Unit is a special charity set up to help children with disabilities. Their work involves designing and making one off pieces of equipment for individual children. Their aim is to give the children a greater quality of life to help them achieve their full potential in any way they can. Some examples of their work – mobile computer tray, large bash pad, large switch for computer access, head switches.

MERU 8 Dawson way, Orchard Hill, Carshalton, Surrey SM5 4NR

Tel: 020 8770 8286

Fax: 020 8770 8398

Email: info@meru.org.uk

Website: www.meru.org.uk

RNIB (Royal National Institute for the Blind)

Amongst much information they have details of software (whether using a mouse or not) available to assist people with visual problems – www.rnib.org.uk. The RNIB toy catalogue is available at Toys R Us.

Another reference for software is in the current issue of Deafblind Perspectives an online publication – www.tr.wou.edu/tr/dbp/current.htm .

Deafblind Rights - Carol Thomas (source - Sense)

A lot of our children with CHARGE have both a significant vision and hearing loss and a guidance issued by the Department of Health in March 2001 gives new rights to deafblind people and places new duties on local authorities. It applies to children, adults and older people. The guidance is about anyone who has a hearing loss and sight loss that causes them difficulty in everyday life.

You may not like the term deafblind or may not think it applies to your child as he/she is not completely deaf or completely blind. However the guidance defines deafblindness widely and says “Persons are regarded as deafblind if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility”. If your child falls into this category (and my son James certainly does) then this guidance applies to them.

The guidance tells local authorities that they have to do particular things that will help deafblind people, and provides suggestions about the way that they can help them. It asks local authorities to:

Identify, make contact with and keep a record of deafblind people in their catchment area (including those who have multiple disabilities including dual sensory impairment);
Ensure that an assessment is carried out by a specifically trained person/team, equipped to assess the needs of a deafblind person – in particular to assess the need for one to one human contact, assistive technology and rehabilitation;
Ensure that appropriate services are provided to deafblind people who are not necessarily able to benefit from mainstream services or those services aimed primarily at blind people or deaf people who are able to rely on their other senses;
Ensure they are able to access specifically trained one-to-one support workers for those people they assess as requiring one;
Provide information about services in formats and methods that are accessible to deafblind people;
Ensure that one member of senior management includes within his/her responsibilities overall responsibility for deafblind services.

Local authorities have a responsibility to show that they are following guidance from the Secretary of State for Health and if they fail to do so they may be subject to judicial review.

Assessment is your key to getting what you need from your local authority. If you have not been offered an assessment for your child you can request one at any time through your social worker if you have one or by contacting your local social services department (probably the Children with a Disability Team). Regardless of whether you are receiving services already or this is your first assessment you need to ask to be assessed in accordance with Social Care for Deafblind Children and Adults.

Your local social services may claim that they are not aware of the guidance or the need for assessment. If they do so ask them to refer to the Department of Health website – the full guidance can be found at www.doh.gov.uk/scg/deafblind and chase them until you get an assessment. It is important to be aware that an assessment to comply with Social Care for Deafblind Children and Adults must be made by a specialist trained in deafblindess.

For further information for yourself visit the above web site, also visit the Sense website for their factsheets which explain the guidance and your rights fully - www.sense.org.uk/rights/section7.html . If you do not have access to a computer feel free to contact me for copies (01484 646828 leaving your full name, address and telephone number) or contact your local Sense branch (see below):

Sense London Tel 0207 272 7774 Fax 0207 272 6012

Sense Scotland Tel 0141 564 2444 Fax 0141 564 2443

Sense Northern Ireland Tel 028 9083 3430 Fax 028 9084 4232

Sense North Tel 0113 205 9500 Fax 0113 205 9501

Sense Cymru Tel 029 2045 7641 Fax 029 2049 9644

Sense West Tel 0121 415 2720 Fax 0121 472 8932

Sense East Tel 01778 382230 Fax 01778 380078

Sense South East Tel 0208 541 1147 Fax 0208 541 1132

SENSE website www.sense.org.uk

Sense also has a list of equipment catalogues available.

Many thanks to Hanna Levey who provided much of this information.

LABELS FEEDBACK

I am pleased to say that I received some feedback from people concerning Keith’s Labels piece:

Michael Schwartz in Ventura, California, USA, father of 5-year-old twin boys Daniel (CHaRGE) and Nicholas:

“I very much enjoyed the July newsletter and especially the articles on labels (a child with CHARGE versus CHARGEr, etc.). I agree with what was said and would like to add an observation.

When someone is talking to my child or me, I find their tone of voice and attitude more important than whether they get the terminology correct. I can tell if they are genuinely concerned and are trying to be nice as opposed to being mean or rude. If I thought someone had good intentions but was ignorant as to currently acceptable terminology or had false assumptions, I would wait until later in the conversation and bring it up in a calm matter of fact manner.

Some people might want to make positive contact with you or your child or others with disabilities, but are worried that they might say or do the wrong thing. If someone makes an effort, we should make it a positive experience so that they will continue to be willing to reach out to others in the future.”

Alison Knight

“Thanks for the newsletter I found it very interesting. I think the subject of "labels" will be around for a long time. When you tell people for the first time of the diagnosis, they then take a step back and are looking to see what is different about your child, as if it maybe catching.”

One response I received was a proposal to write a piece on ‘special parents’, unfortunately the proposer has not been to able write it. Elaine Murray Bell had posted the following response on the CHARGE Listserve that sets out similar sentiments with which Flo and I also agree:

“I'm sorry but I really have to disagree about ' special children only go to
special parents'. I am not special in any way and only do what I can for my child. I like to think that that I do just as much for my daughter who has no disabilities.

I wish with all my heart that my son did not have all the problems he has and
it certainly does not make me feel 'special' in any way. I agree that my son is an amazing little boy with an enormous personality and he is very, very 'special' to us but as I said, my daughter is also very
special to us and she doesn't have CHARGE.”

Keith’s article referred to People Firstand in the latest issue of the newsletter for CHARGE Syndrome Canada(www.chargesyndrome.ca) there is a link to an article on People First Language. This is http://www.disabilityisnatural.com/peoplefirstlanguage.htm.

FUNDRAISING

GIFT AID - Carol Thomas

As you know, the CHARGE Family Support Group is run by volunteers and all our funds to date have come from the fantastic fundraising activities of our member families and their friends and supporters. Long may this continue! However the Group has no regular income and in order to maintain and improve the level of activities and support we can provide, the Group’s Committee have decided to launch a Gift Aid campaign.

Anyone who wishes to make a donation (either one-off or regular) to the Support Group can do so by filling in the declaration attached to this newsletter. If the donor is a UK taxpayer (see the note on the bottom of the form) they can tick the Gift Aid box and we can claim back 28p from the Inland Revenue for every £1 that is donated. This could make a big difference. We can also backdate a declaration to cover all donations since 6 April 2000, so if you have made a donation in the past to the Group please fill in a declaration and send it back.

Please contact Carol on 01484 646828; e-mail cajthomas@btinternet.com or Barbara on 0113 2868 350; e-mail John.Payne7@btinternet.com if you need more copies of the declaration. Thanks for your help!

PEN PORTRAITS

Hannah Henderson

Hannah is 5 years old, born 18 May 1998. She lives in Oxford with her parents, Trina and Rob, and her twin siblings Alice and Tom who are 15 months old. Hannah is in her first year at primary school, in the pre-school nursery class. She has three LSAs at school (one for afternoons, and two who job-share the morning sessions). Outside of school Hannah loves music, swimming and riding (RDA), and is happiest watching one of her favourite videos.

When Hannah was born we learnt quite quickly about some of her problems - a facial palsy (unilateral at birth, but became bilateral at 9 months), tetralogy of Fallot (corrective heart surgery at 11 months) and a moderate-to-severe hearing loss. CHARGE was not diagnosed until she was 2 when her bilateral retinal colobomas were discovered. Hannah has had 5 operations including, most recently, a successful cranial nerve/muscle graft which is starting to give her some movement in her face. At the last count Hannah sees 12 consultants, 6 therapists and 5 specialist teachers so we are kept busy with appointments.

Hannah's most persistent problems remain her vestibular dysfunction (she started walking at 4 but is still unsteady on her feet) and her lack of communication. Her speech development appeared to stall at age 2, and she shows signs of verbal dyspraxia. Her facial palsy makes social interaction with other children difficult. Hannah is still wearing nappies.

Like all parents of CHARGE children we have found that just when you feel that one problem has been resolved, another one pops up demanding attention! Our current concerns include the lack of OT support available locally; Hannah's sight - we think that Cortical Vision Impairment might be a problem but are unable to persuade Hannah's consultant to test for it; and whether we should be re-considering signing as a way of aiding communication.

We have learnt over the years that we have to persist with looking for new ideas and solutions, and sometimes that means not accepting what you're told at first. We started a programme of HANDLE therapy exercises earlier this year, which has been beneficial on many levels, and we recently persuaded our LEA to fund the involvement of a specialist MSI teacher from Sense at Hannah's school to advise her teachers and LSAs.

Hannah is a very brave, sweet natured and spirited girl. She inspires great affection in everyone who gets to know her.

Emily Knight (born 3 October 1991)

Just to update you and the group and hopefully to give hope to others who may have only recently had their child diagnosed.

As we all know in the early years ----- working with Emily has been hard work and we have shed many tears and setbacks. Emily also has an older sister who at the time also needed our care and support.

Today, Emily has moved on to senior school and she is very excited about this new beginning. We have been successful in getting extra support in school and Emily has been provided with a laptop to help with note taking in class in addition to the micro link system. She is a very happy, social child and works very hard to keep up with her peers- struggles with maths but then that's not the end of the world.

Emily is well liked by all her peers and teachers. The headmistress said the determination and courage of Emily to have a go at everything and anything she deserves to succeed.

Emily is partially deaf and wears hearing aids (balance problems as no semi circular canal). She has Coloboma of the retina in both eyes, better sight in the left eye. Emily has had open heart surgery for aortic stenosis but will need further surgery in October 2003. Whilst she did have a feeding problem Emily now eats normally and enjoys her food.

Alison & Peter Knight

FEEDBACK

Please give me any comments – positive or negative about the newsletter. I can only improve it if you give me feedback.

EMAIL ADDRESSES

A continued plea – if you have not given either Carol or I an email address when you have one please do. Newsletters sent out by post go out at least a week (even longer with the postal strike affecting me!) after they are emailed because of the amount of photocopying and stuffing of envelopes (remember this is done in my own time).