Welcome to the June edition of the CFSG newsletter – late again, another excuse! The annual Family Fun day was held on 29^th June at the Royal Schools for the Deaf, Cheadle Hulme, Manchester and I thought that the newsletter should cover it.

I would like to thank especially Carol Thomas for her hard work in setting up the Family Day which was very successful being attended by about 20 families some new, some re acquainting themselves with the group and others who are regulars. Equally it was a shame not to see familiar faces for whatever reason. The idea of the group funding an overnight stay for families who had to travel long distances was excellent. Gemma Fleuty has written a piece on her family’s experience of the weekend.

Keith Park an MSI teacher with SENSE (and former colleague of David Brown) has specially written an article for the newsletter. Flo and I have been lucky that he has worked with our daughter Jessica since she was 6 months. He is just completing a book entitled Interactive Storytelling: inclusive stories for children and adults. An example of his work is that he is organising a tri lingual version of Othello at the Globe (Shakespeare’s reconstructed theatre) in English, Arabic and BSL.

The article from a grandmother’s perspective is still one word – knackered - however there are very good reasons why I have not received a longer version.

Unfortunately I have received no feedback from anyone concerning equipment, useful resources etc therefore I am holding this over until the September (no doubt October) issue. Please give me suggestions, it might be something very simple like how to make a resonance board or a charity that has been useful to you.

Finally I would like to welcome new members to the group – please write me a pen portrait about your child, so that I can include it in a forthcoming newsletter. It gives us who run the group an opportunity of putting families in contact with similar ones if so desired.

Simon

NEWS

Conferences

The 6^th international CHARGE Syndrome conference took place last week in Ohio and is rapidly followed by the 13^th Deafblind International world conference on deafblindness in Toronto on 5^th August. (I hope to be able to bring you information from both of these in the next issue.)

CHARGE Across America

Prior to the CHARGE conference in Ohio, Michael Brennan and Charles Chandler, 2 American students have cycled across the States to raise awareness for the Syndrome. They have apparently cycled 100 miles a day for 40 days. Michael’s 5 year old cousin Clare O’Toole was born with CHARGE Syndrome.

London Marathon

As many of you are aware SENSE has been chosen as a main charity for the 2004 London Marathon. It is rumoured that Ann Maguire the group’s Treasurer and Pete Thomas Carol’s husband have volunteered to run the London marathon with the aim of raising funds for and awareness of the group. If you want to run the marathon or know of anybody proposing to run the marathon but does not yet have a charity the group needs you or them.

CAUSE Conference Papers

One advantage of being late with this newsletter is that I can inform you that the papers from the CAUSE conference are now available on http://www.deafblindinternational.org/cause/conference.html

FLEUTY FAMILY ADVENTURE – Gemma Fleuty

We were all very excited as we set off for Manchester, Daniel had been counting down the days on his calendar for weeks leading up to today! After a long but uneventful journey we arrived in Manchester and as we have two serious Manchester United fans in the family we duly traipsed off to Old Trafford, and spent an exciting (honest!!) afternoon looking around.

We found the hotel and had the rare treat of having a family dinner ‘out’, the staff were lovely and very helpful. We then had the pleasure of trying to put two excited, overtired children to bed!

Sunday morning and we met two fellow CHARGE families on the way to breakfast, it was brilliant to catch up and see how much our children had changed since we last saw each other in March at the CAUSE conference. We all made our way to the school and as the sun came out when we arrived I was struck by how beautiful the school was very spacious, calm and green. There were already many families there when we arrived and the children were exploring the sensory equipment. Our two got stuck in and Daniel (our eldest) was delighted to see Joachim (Levey) with whom he had made friends at the conference. Harry loved the sensory suite - bubble tubes are his favourite and he would have been happy to stay there all day! However there was so much to see that we had to convince him to come exploring. We found the quiet room which had lights, a fountain which had Harry entranced and the sensory garden which had lots of sweet smelling flowers (not being a gardener I’m afraid I can’t be more specific!), wind chimes and different surfaces to walk on. After a relaxing half hour outside we came in and found the Gamelan room. Wow! Having had no experience of these instruments we were amazed - you could almost feel the vibrations through the air. Harry loved laying his hands and face on the big xylophones and “feeling the music”.

Then everyone congregated for lunch, which was delicious and again we had the chance to catch up with friends we had made in March. The magician kept the older children happy, though Harry was frankly terrified of the balloon parrot he was given and we had to donate it to someone else!

After lunch we made our way to the pool going via a corridor which was lined with tactile displays - our favourite was the bicycle wheel covered with gold streamers which Harry loved so much I’m considering doing a Blue Peter DIY version for his bedroom wall! The pool was ours for an hour and many families took advantage, the children had a wonderful time and came out a little tired but still wanting more. We went back to the sensory room where Harry tried out the musical instruments and danced to the music. Here Daniel discovered the beanbag that you could feel the music vibrate through.

Way too soon it was 3 o’clock and as we had a long journey back we had to try and drag the boys away - easier said than done! As anyone who was

coming our way will know it wasn’t a particularly nice journey back, loads of traffic jams but we did have one pleasant surprise - as we stopped for tea at a services we saw Archie (Woodrow-Bennett) and family also having a bit of a breather.

It was a fantastic weekend, it felt like a real break for us and it was two very tired but very happy boys we took home. Thank you to everyone who helped organise it - it was very much appreciated!

LABELS – Keith Park

Perhaps the easiest thing to do is to start at the end. Several years ago I went to a meeting run by an organization called 'People First', a self-advocacy group that is run for and by people with learning disabilities. At the beginning of the meeting one of the speakers stood up and said “We are called People First because we are”, then promptly sat down. It was brilliant.

But, of course, labels have been controversial for many years, and have equal potential for either damage or benefit. Several years ago I knew a then 17 year old called Emma, who is deafblind. One of the questions that greatly exercised the school staff was whether Emma had severe learning disabilities or as some staff insisted on saying whether she was 'mentally handicapped'. (This was in the 1990’s). One day the speech and language therapist walked into the staff room as some staff were discussing Emma. “Oh we're glad you're here” one said “maybe you can help us with a problem. We've been discussing what level Emma is. What do you think?” The speech therapist, straight-faced, replied “I've only worked with Emma a few times, but I would say about 5 feet 6.” Red faces in the staff room. Later that day I told Emma's mother of the therapists comment and when she had finished laughing, she said that the comment proved that even assessments could be funny. Emma is now living in a house with three other young women and having a great life doing all sorts of things. She is still 5 feet 6.

Some time later I was visiting a Day Centre (now there's a label) for adults with learning disabilities. The deputy manager showed me around the building. In the central lobby there were about 20 'clients' (as if they had any choice) and up in the corner of one wall, behind a metal mesh, the TV was on full blast. I asked the deputy manager what sort of activities went on during the week. “We don't really do activities as such” she replied “we're a profound centre.” When I had regained my powers of speech, I asked, as neutrally as I

could, what a 'profound centre' was. “Oh” came the reply “it's where all the PMLD's come. There's not much you can do.”

So what's negative in a label? Quite a lot it seems. There is an argument that labels pigeonhole people, or reduce them to cultural stereotypes. In cinema, journalism and educational circles, it may not be uncommon to hear people have labels attributed to them that bring certain characteristics (and I have heard all of these!):

Autism (always have a special talent)
Asperger (definitely so!)
Cerebral Palsy (brilliant writers)
Challenging Behaviour (will spontaneously combust, or turn green and rip their clothes off)
Down Syndrome (love music, sweet tempered)
Rett's Syndrome (always girls)
Schizophrenia (brilliant at maths or at playing the piano)

and so on.

So does this mean we see the label before we see the individual? I would say no, but wouldn't we all? Nearly all, but not quite. Unfortunately this is a true story - a few years ago a child I was with in school had a bad fit and had to be taken to hospital. A member of school staff and I went with the child in the ambulance while the school tried to contact the family. At the hospital we waited by the child's bedside for mum or dad to arrive. After a few minutes the doors opened and a white coated young man came hurriedly up the bed and eagerly said “I hope I'm not too late, but I heard there was a Trisomy 21 here and I've never met one before.” I wish I could say that I gallantly restrained the member of staff from beating him to a pulp and then throwing him from the window, or vice versa, but the sad truth is that we were both so stunned we gaped at him in total silence until a nurse came in the room and asked if we would like a cup of tea.

On the brighter side, here is another true story and a rather heartening one someone I know has two children, one of whom has autism. One day she and a colleague went home to try and complete a work project together. They spread the papers on the kitchen table and began their work. Her children were noisily playing in the front room and so she called out “Oh why can't I have quiet children when I'm trying to work?” Her son replied “I can't be quiet

I'm autistic.” To which she replied with admirable logic “It is easy to be autistic and quiet!” Finally he replied “Oh.....OK.”

However, there is a strong case to be made for the beneficial advantages of labels. In the latest edition of the British Journal of Special Education, Professor Klaus Wedell reviews a recent 'Senco-forum' exchange (ie an internet-based exchange of open letters by Sencos and others about various issues) about the dangers and values of labels. He reports that:

“The case for labels was made particularly by Forum members who themselves had children with special educational needs, and who had struggled to have their needs met. They had found that giving a label to a child's need was an essential passport to obtaining resources for help. Parents resort to labels in order to claim their children's right to receive more than the generally available provision, and more particularly, to make a case for a Statement. Paradoxically, the current move towards inclusion and the pressure on LEAs to devolve finances to schools seem to have increased this problem.”

Other opinions expressed about labels reported by Professor Wedell included the following:

1 Teachers, SENCOs and other professionals feel that they can best protect themselves by using a label as evidence that they have identified a child's difficulties.

2 That there may be private practitioners who claim expertise in labelled areas of special educational needs and who might be perceived to have a vested interest in assessing children and promoting related remedial approaches.

3 Parents with access to the internet found that having a label for their children's difficulties gave them a starting point for searching out more information and ideas about approaches to remediation.

4 Within education, there has been criticism of labels derived from what is termed 'the medical model.' These labels imply direct physical causes and may or may not have practical implications for teaching a given child.

5 Some participants proposed a total rejection of labels while others argued for their use in some contexts but not in others.

The final opinion reported by Professor Wedell was that “the professionals concerned should explain the alternative formulations to parents and, where relevant, to children, and allow them to choose which they preferred at any particular stage in the process of serving their needs.”

I wonder what range of opinions about labels might be held by parents of children who have CHARGE?

PERSONAL STATEMENT – Simon Howard

Keith’s article raises a number of issues that Flo and I have previously discussed with him. One of these is identity which I would like to touch upon. Jessica our elder daughter was born with CHARGE Syndrome. How do we describe her – a child with CHARGE, a CHARGE child, mixed race (dual heritage) or our daughter?

She is first our daughter, second mixed race and third a child with CHARGE. She is not a CHARGE child as this identifies her first and foremost medically when her first identity is as a person – ‘People First’.

The Americans/Canadians use the phrase CHARgEr (in Jessica our daughter’s case). This is useful to identify the main characteristics that a child has. This cannot indicate that many ‘minor’ characteristics that often are the cause of more and enduring problems that many of our children have.

On the different point how many of you have been called ‘special parents’ by friends, relatives, professionals - Flo and I have. This recently touched a nerve with many parents on the CHARGE list serve (see later). Do you consider yourself special because of the way you bring up your child with CHARGE rather than your ‘typical’ child (if you have more than 1 child)?

If anybody feels that they have anything to say on these points please contact me and I will include these in the next issue. Alternatively use the Forum on our website (www.widerworld.co.uk/charge) and get a discussion going.

SOUND OFF

Another in this occasional series (this time relating to the above subject of identity and labels).

Consultant paediatrician overheard walking away from a child with CHARGE who is a volunteer at an examination for paediatricians (bear in mind that the child has 5 out of 6 major characteristics together with a couple of (very) minor ones) “that child is not a very typical CHARGE child”. Can anybody tell me what a typical child with CHARGE is?



FUNDRAISING

Another reminder that the group needs funds raised for it, this year has been an expensive year due to subsidising families attending the CAUSE conference and the overnight stay prior to the Family Day.

Lewisham SKC the karate club where Flo and I train held a fun day at which children in the club have provisionally raised nearly £1,000 to be split between SENSE and the CHARGE Family Support Group.

PEN PORTRAITS

Jodie Winter

Jodie is a delightful, happy, confident (mostly!) 11 year old. She’s given me 11 years of hard work, worry and tough times but also happiness, faith, pleasure, love and continued amazement at her strength of character.

Jodie’s birth was a bit of a show with doctors, paediatricians, nurses, students all wanting to be there when Jodie was born, having had complications in the pregnancy and knowing of her kidney problem and fairly small size, with apprehension surrounding her health. Immediately she was born there was concern for her breathing, with excessive mucous blocking her airways. Within a very short time I was told she would be transferred to GOSH (Great Ormond Street Hospital) as she had a Choanal Atresia and would need surgery. When sedated at GOSH for a CT scan, her heart problem became apparent. other tests put into place. I was told of the

possibility of CHARGE – her eyes were examined and a brain stem test to determine her hearing levels carried out. At a day old I knew Jodie had CHARGE, was told along with her Choanal Atresia & kidney problem she was profoundly deaf, had Bilateral Colobomas – (her vision unknown at that time), had a heart problem, kidney problem, growth retardation – her mental ability would be unknown, she had no balance – may not walk – and that’s all I remember knowing in those first 24 hours.

It seems hard now to remember those early days/weeks/months & years of how and when each problem was identified, but the final list included the following:

Choanal Atresia – corrected at 3 days old with several dilatations.
Bilateral Colobomas – has no vision in her right eye – good in left.
Tetrology of Fallows – major heart surgery at 10 months old. Currently has leaky valves- under observation.
Profound Deafness (no semi-circular canals) - had a Cochlear Implant at 3 years old.
Growth Retardation.
Gastric Reflux – no surgery, on medication.
Hydrephenosis of Left Kidney – no surgery –does Ok – weak bladder control.
Sub mucous Cleft Palate – diagnosed at 6 years, repaired - limited success due difference in muscle.
Swallowing Difficulties – Poor co-ordination (weak muscle control), pooling of food and aspiration of liquid into lungs – contributing to feeding difficulties - all improved with age.
Excess Mucous production – combined with above led to recurrent chest infections and Gastrostomy Tube at 6 years – re inserted twice, now removed.
Gut malrotation – diagnosed at 4 years immediately operated on with Ladds procedure – also appendix removed at same time.
Bowel problems – requires daily medication to control her bowels or they get totally blocked up.
Auditory & Speech processing difficulties – delayed language level.
Learning Difficulties – very bright socially, extremely on the ball, but has huge difficulty with spelling and maths.
Sleep problems – took melatonin for some time – suddenly much improved.

I’m sure that’s not the exhausted list but that will do!

Jodie is the daughter of Vicky and Jake, sister of Daniel (6) and another sibling due in December (congratulations – keep us posted). Since Vicky wrote this portrait Jodie needs a second cochlear implant.

Jack Murray-Bell

Jack was born in July 1997. He has bilateral colobomas affecting the iris and optic disc. He has no sight in his left eye due to retinal detachment but has some useful vision in his right eye. He had heart defects (Double Outlet Right Ventricle, VSD, Pulmonary Stenosis, PAPVD) and had surgery to repair these. He still has some Pulmonary Stenosis, PAPVD and leaky Pulmonary & Tricuspid valves. He had laryngomalacia but this resolved as he grew bigger. He also has the usual global developmental delay but has made enormous strides over the last couple of years and his cognitive levels are normal. Jack is also <3^rd centile for height and weight despite being on a small dose of Growth Hormone. He is not actually GH deficient but his Endocrinologist decided to give it a trial anyway and it did make a difference initially to both growth and muscle development.

He has a small penis and has had testosterone treatment to improve the size. Jack also has vesicoureteral reflux and takes prophylactic antibiotics daily to prevent infection. He has also had ongoing problems with kidney stones and has had 6 episodes of Lipotripsy (ESWL) and 2 percutaneous nephrolithotomies. His kidney function is reduced to around 50% so this is something we have to keep an eye on. His left kidney is badly scarred and is not growing (Renal Dysplasia) and the right kidney is also showing signs of scarring.

He does not have any hearing loss but he is very sensitive to sound and hates being in noisy environments. He gets very upset and can’t handle it at all.

He also receives all his nutrients via his Mic-Key gastrostomy button and still refuses to eat.

Jack is in mainstream school with 1:1 aide. His teacher of the VI also spends part of each day in school with him. He is doing very well and the school have adapted many things for him. He is very popular with his peers and enjoys going to school.

Jack is the son of Elaine and Jim, brother of Elise (11). Since Elaine wrote the

portrait Jack has been diagnosed as having a moderate subaortic stenosis as a result of his earlier heart repair.

WEBSITE AND SUPPORT GROUP INFORMATION

CHARGE List – www.CHARGE@yahoogroups.com

This is an email group of over 500 people who have offspring who have CHARGE, are professionals with an interest or who have CHARGE themselves. People use this to chat, seek advice or just keep a watching brief. If you are interested in signing up make sure that you have plenty of space in your email address!

EMAIL ADDRESSES

ANOTHER 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 after they are emailed because of the amount of photocopying and stuffing of envelopes (remember this is done in my own time).