CHARGE FAMILY SUPPORT GROUP NEWSLETTERMarch 2003 Welcome to the March edition of the CFSG newsletter - out in May just 2 months late, an improvement on December's that was out in January! At this rate June's will be published the same time as September's issue. Seriously this issue was delayed by the CAUSE Conference being at the end of March. I think everyone who attended found it very informative, tiring and sometimes fun. Including 2 families from France and 1 from Italy I believe that there was 26 families with a connection to CHARGE present which was excellent. Many thanks to the organisers of the conference. I feel that it has given many of us the impetus to try to develop our support group. This issue contains a 'few' words from Carol who reports on our AGM and some ideas as to how the group can go forward, also proposed dates and venue for this year's Family day. David Levey who was involved in making the conference happen has written about the CHARGE Network and I am trying to report on the conference. I am very pleased that I have material for June's issue including an article from a grandmother's perspective. Apparently this currently consists of 1 word - knackered! Come June I hope it has become a little longer. Hanna Levey has given me information concerning a variety of specialist equipment etc. It is nearly sufficient to make a whole issue out of, but I need more. Please send me details of any equipment, toys that you have obtained and feel others should know about. Finally there are another 2 pen portraits included here that were received immediately after the last issue - many thanks. I look forward to receiving others, likewise those offers I received of articles/pieces. A FEW WORDS FROM THE CHAIRHi everyone - I have to say that it was wonderful to meet so many CHARGE families at the CAUSE Conference - the whole weekend was an unforgettable experience. For those who didn't make it, information about it will be posted soon on the Deafblind International website; and I do have copies of handouts on multisensory impairment by David Brown, vestibular deficits in CHARGE children by Dr Vincent Couloigner, Consultant ENT Surgeon from Paris, Olfaction deficit by Dr Christel Chalouhi and early prognostic factors for intellectual outcome in CHARGE Syndrome by Dr Veronique Abadie. Please contact me if you would like a copy. I would like to thank all individuals and organisations concerned in putting on such a well organised and informative event. We took the opportunity of holding our 2003 AGM straight after the Conference and I would like to highlight a few of the points raised at the meeting. As a Group, we are in a unique position to network relevant information about CHARGE. In fact being able to pass on experiences and information to each other is something that can happen most effectively when families have the opportunity to get together and talk about it. All present at the AGM voted to continue holding family days. However, we all know that as we are spread so thinly across the country, it is not always easy to find a suitable venue to attract enough families. Journeys with CHARGE children can often be stressful, and it's just not worth travelling a long way for a three or four hour get together. It is essential that we try to organise more family meetings and days with overnight accommodation available so that the whole thing becomes a lot more fun! You will see that for our next family day (see article) we are offering this for the first time. If it is popular, the idea is then to go out and raise money so that we can do this more often, in different areas, and perhaps offer subsidised weekends at places like Centerparcs where everyone can have a good time. To do this, we need funds and I appeal to everyone to see what they can do in order to raise more money for the Group. Do you know anyone who would do a sponsored event, can you run a fundraising event yourself or simply, do you know of companies that we can write to with an appeal for funds? Please contact me with ideas. I will be concentrating personally on targeting companies, but I am also working with the Army to hold a sponsored Assault Course and Pentathlon in September this year. I work with a friend who raises money for her child's charity and between us, we can organise bigger events like this (the one we ran in 2001 raised over £11,000 between six charities - over £1,800 went to CHARGE). Other key issues we are working on include:
Hope you enjoy the newsletter and hope to hear from you soon CAUSE CONFERENCEThis took place over 3½ days at the end of March and was an EU funded combined conference for CHARGE and USHER. The format was that the initial morning sessions were combined with presentation/speeches from people with experience of deafblindness from different perspectives. This included a Spanish woman with USHER signing in Spanish Sign Language and being translated into spoken English, BSL and Deafblind Sign Language. From a CHARGE perspective Elaine Murray-Bell gave a moving speech as the mother of Jack a 5 year old with CHARGE, 16 year old Zara Jayne Arnold an entertaining speech and 31 year old Alan Hornblow a fascinating signed and pictorial presentation. David Levey in his role as a co ordinator for the conference spoke likewise Carol Thomas as Chair of the CFSG. The conference split after these first sessions. On the Friday David Brown (the former head of Families and Education) at SENSE's Family centre in Ealing gave the first half of his talk on sensory integration entitled 'Some behavioural implications of sensory difficulties found with CHARGE Syndrome'. He looked at how various CHARGE anomalies might have implications for development, behaviour and learning style. These included balance and low tone, equilibrium, balance and vision, balance and hearing, vision, hearing, sensory integration dysfunction, communication and language, eating and drinking and sense of smell. He gave many examples of these that would have been familiar to those involved with people with CHARGE. From these he tried to draw conclusions relating to teamwork, priorities, one thing at a time and behaviour. For me David's illustration of asking the various people in an assessment (professionals, parents) what a child is doing stood out where each person saw only what they wanted. I believe this related to 'one thing at a time' where he said 'only the clearest view and the strongest empathy will help people to gain any insight of what an activity really means for the child'. Basically we need to try to understand what the child's perception of what you are trying to do and where his/her attention is most likely to be focussed. He was followed by Tim Hartshone professor of psychology and Asst Vice Provost at Central Michigan University and father to Jacob a teenager with CHARGE. He considered challenging Behaviour in CHARGE Syndrome. His concern is that there are many (mis)behaviours which can categorise children (in the States there seems to be issues with autistic diagnoses with many children with CHARGE who are exhibiting behaviours relating to their deafblindness and other sensory impairments) when in reality there can be a reason for them if an attempt to understand them is made. He explained that all behaviour has a purpose and is communication; and that 'the primary objective of behaviour management is to understand the purpose, and communication underlying misbehaviour and to use that to help the person find more appropriate communication methods to achieve their goals, or to help them find more appropriate goals'. (A copy of Tim's presentation can be found on his website www.chsbs.cmich.edu/timothy_hartshone. If you add /presentation/behaviour.doc you will access the document direct. On this site are other papers that he has presented at other conferences. Note the underscore between Tim's names.) Following David on Saturday were 4 doctors from France who all work with children with CHARGE. The first Dr Vincent Couloigner an ENT specialist looked at vestibular (the cavity serving as the entrance to the inner ear) deficits and their consequences. The inner ear in addition to its importance for hearing also contains the vestibular system. This system provides signals concerning head movements therefore playing an important role for equilibrium. In CHARGE Syndrome the vestibular system is usually malformed. The significance of this is that as we know from our own experiences most children with CHARGE are severely delayed in standing, walking etc. There are a couple of simple non invasive tests that can be carried out to test the function of the system. These have benefit in assisting the development of a child. A summary of this paper can be found here. 2 smaller presentations were made by Dr Christel Chalouhi and Dr Veronique Abadie on Olfaction deficiency (lack of sense of smell) and early prognostic factors for intellectual outcome in CHARGE Syndrome. With regard to the sense of smell 14 children with CHARGE were compared with 25 other children. All the children with CHARGE were found to some extent to have their sense of smell affected. This apparently can have an effect on such matters as feeding, behaviour and communication difficulties. The intellectual study found that critical medical situations and intensive care did not have an adverse effect on children's intellectual outcome. However from the UK's viewpoint the intellectual assessment related to the type of school that the child attended in France. The final presentation was by Dr Jacques Souriau on strategies of communication with children with CHARGE. He started this with an analysis of methods of communication parents of children with CHARGE used and followed this with case study videos of children communicating with adults and vice versa. The purpose was to show how communication was often child led and can combine sign, speech, gesture, actions etc. This should be reinforced by repetition for development of communication skills. CHARGE NETWORK NEWSThe past 18 months have been a very exciting time for the Network with the CAUSE Project taking up most of its Network activity. The Project itself will end on 30 April 2003 and there is still some paperwork to be finalised in regard to that. We have just had a conference, which was the highlight of the CAUSE Project and it was a great success. David Brown, Tim Hartshorne, and Jacques Souriau were our key speakers and they did a fantastic job. It was a great turnout for CHARGE with well over a hundred people attending our side of the event, including families and professionals. Considering this was a joint Project with The European Usher Syndrome Network, and that they out number us 10 - 1 in the big wide world, CHARGE really was 50% of the conference. This was a fantastic achievement. At the end of the conference we held a 'Future of the Network' meeting. Here it was agreed that it would be a worthwhile endeavour to aim at having a conference tagged on to the next European Deafblind International (DbI) conference to be held in Slovakia in 2005. This is something that other groups have be doing in years gone by - especially the Usher Network - with great success. One the big advantages of this is that a lot of the things are already in place from the main conference such as the venue, advertising etc. So it's a very good use of resources. It will also allow the CHARGE Network to do two major things:
Along the way the CHARGE Network will have grown into a fully functioning organisation and 2007 could be a showcase year where CHARGE is put well and truly on the map. The USA and Australasia have already done very well in this regard but we can only imagine how many people exist worldwide with CHARGE. It must be thousands upon thousands. These dates may seem far off but they come by very, very quickly. When I started as Network Coordinator back in 1999 I met a lot of resistance to my ideas because they just seemed like distant dreams. Well, with help and support from a variety of individuals and organisations, including parents and professionals, we have already started to realise those dreams. It took 4 years to get this conference in the UK but it was totally worth the effort. The benefit to people with CHARGE and their families has been immeasurable. Slovakia 2005 can do even more. David David Levey If you wish to be a member of the CHARGE Network then please contact me preferably by email. Membership is free and your interest will be very welcome. FORTHCOMING FAMILY DAYWe have got a brilliant venue for our next family day! The Royal Schools for the Deaf at Cheadle Hulme (south of Manchester) have kindly offered us a number of their facilities, particularly suited to CHARGE children. We will have use of a superb multi-sensory unit, complete with Snoezelen Room, light room, computers with latest software for msi and deaf children, resonance board and loads of drums and musical instruments. There is also an area for Gamalan (sound making using large musical instruments), a canteen and dining area, a hydrotherapy pool with underwater speakers and lights, a sensory garden, and open (indoor) facilities where we can have a soft play area, children's entertainer etc. In addition, the school have a regular swimming pool, to which we will have free of charge, but not exclusive access, as it is open to the public at weekends. Depending on the number of people taking part, we can also organise a crèche area for babies and infants so the CHARGE kids can let rip in the MSI suite without upsetting the little ones with their noise! The day can be structured as we want, and a buffet lunch will be provided, with lunch bags for children (with regular eating habits). Following the huge success of the recent CAUSE Conference, with so many families from all over the UK getting together and really enjoying themselves, the CHARGE Family Support Group will cover the cost of overnight accommodation the night before at the nearest Travel Inn or Travelodge, (about 5 minutes drive from the school), to make the venue more accessible for families with a long distance to travel. We have a choice of the following dates: Sunday 29 June, Sunday 6 July, or Sunday 13 July. As time is short, please get back to me as soon as possible if you are interested and let me know which dates you can do; we will obviously have to go with the most popular choice. In addition, I will need to know accurate numbers, ages of children, who would want lunch, whether you would like a crèche service (we can bring in crèche supervisors depending on numbers), and if you would need overnight accommodation. Please contact Carol Thomas on 01484 646828 or cajthomas@btinternet.com by Sunday 12 May. I will confirm the actual date the following week. FREEBIE WEEKEND AWAYFrom Sue Barker - grandmother to Megan I don't know if this would be of any interest, but we have a static 4-berth caravan at Skegness, on the Lincolnshire coast. We take Megan there every other weekend, and were wondering if anyone in the Support Group would like to use it. There are 2 full weeks when we will be on holiday and the caravan will be empty: w/c Sat 24 May and w/c Sat 16 August. If anyone would like to use it then, they are most welcome - free of charge. It is only 2 years old and has a double bedroom with ensuite and the second bedroom has 2 single beds. There are 2 shower rooms and toilets (but no bath) It has all mod cons, fridge, TV, video, microwave, cooker. The settee in the living area will also make into an additional bed. One thing though, I don't think there would be room to put a cot in the main bedroom, but I can measure up if required. If you know anyone in need of a holiday who has a child with Charge, please contact Carol Thomas initially. Skegness has a very flat seafront and is well suited to wheelchairs. I would be happy to give further details if required. PEN PORTRAITSSarah Willes Sarah is 16 months old, born September 2001. She is a surviving twin (second twin died in utero at around 14 weeks into the pregnancy). She has left sided facial palsy, bi lateral retinal and optic nerve coloboma and severe short sightedness. Just mild hearing loss in the left ear and both ears lack cartilage and are very floppy, the left being folded over. She is naso gastric tube fed liquids due to swallowing difficulties and is waiting for a gastrostomy, but can eat smooth purees. Sarah is not yet sitting unsupported due to upper body weakness and is developmentally delayed. Luckily, no heart or breathing problems. Sarah has generally good hearing, healthy heart and can hear well, all be it in one ear. She has just received a chair (after a 7 month wait) from Social Services OT division which will help support her and enable her to play sitting upright. She has a Peripatetic teacher for the Visually Impaired, who visits her at home 4 weekly, plus a physio home visit once a week, which is invaluable to her and us. We live about a mile away from the Joseph Clarke School for the Visually Impaired, Highams Park, London, E4 which also has a nursery. Hopefully she will be able to attend this at around 2-3 years old as it has a very good reputation. Sarah is a happy, loving little girl who adores music and smelling/kissing your skin! She is a delight to be with and is very contented with life. Sarah is the daughter of Jackie and Neil Willes. Warren Newman I would like to tell you about our son Warren. He was born 06/01/90. He was born with Cleft Lip and Plate and was kept in hospital for feeding problems. It was then discovered he had heart problems, ASD and valve narrowing. He also had feeding problems which the hospital battled with and also discovered he had Reflux. I thought he would never make it, but some how he did. It was later detected he had loss of hearing, which lead to further tests to discover he is profoundly deaf with no chance of cochlear implants. It took us four years to get him to eat without a tube. He was five before he could walk and he was nine before he came out of nappies. I felt I had to write this letter to all the parents of small children with CHARGE. Warren has got Coloboma, heart problems, airway problems, retarded growth, small genitals, misshaped ears and hearing loss. He is now thirteen years of age and I couldn't ask for a better son, he is so brave and loving. We are still travelling through that dark tunnel together but I just want to tell everybody there is a light at the end of it. Warren is the son of Wendy and Raymond Newman CORRECTIONIn the last issue Elaine Murray Bell's telephone was incorrect. This is the correct one 01387 250284. Her email address is: Jmurraybel@aol.com. WEBSITE AND SUPPORT GROUP INFORMATIONAn American teenager with CHARGE has set up a CHARGE mailing list specifically for teenagers and young adults. The address is: http://groups.yahoo.com/group/CHARGEsyndromeKIDS/ In keeping with David Brown and Tim Hartshorne there is an article on self stimulation that maybe of interest. This can be found at: http://www.tsbvi.edu/outreach/seehear/archive/mannerism.html EMAIL ADDRESSESThis newsletter goes out to over 250 people, however at least 150 of these have to go by post. This takes up a considerable amount of time - photocopying, folding, putting in envelopes etc (and postal expense), therefore I would be very grateful to anybody who has an email address but has not provided it to either Carol Thomas or myself to email me with their address. It's not fun when you just want to go bed to have to fold and stuff envelopes. SLEEP SURVEYThis is an issue for many of us. Please read the following and take part if you wish. I will try to ensure that I report back on the results since I am in contact with both the Canadian and Australasian support groups. Dear CHARGE families, I have received the following from Dr. George Williams, who will be presenting this summer at the Cleveland Conference (see below). He is looking for assistance with his CHARGE sleep study. The Albany Sleep Problems Scale is available at the yahoo groups website: http://groups.yahoo.com/group/CHARGE/files If you have trouble accessing the file from this location, please email me gweir@nbnet.nb.ca and I will send it you. Thanks for your consideration, Lisa Weir. THE SLEEP STUDY AND CHARGE SYNDROMEThere is no published data on the sleep patterns of children with this condition. From speaking to parents in my practice and those at the national conferences sleep is a major problem. The two major features noted are those of obstruction and disruption. Completing the questionnaire is optional and I would be very grateful for your assistance. This information can then be presented at the Sixth International CHARGE conference in Cleveland, USA, at the end of July 2003. The study will also be published and presented at the next Australasian national conference in Sydney in 2004. If you would like your information to remain confidential then do not leave any identifiable information in the first part of the questionnaire. I thank you for taking the time. Should you have any inquiries, please contact me by phone at my office or email. Kind regards
George Williams Paediatrician CONTACT DETAILSCarol Thomas Barbara Payne Simon Howard and Flo Njeru Yvonne Arnold Hanna Levey The views expressed in this newsletter are not necessarily those held by the CHARGE Family Support group. |