CHARGE FAMILY SUPPORT GROUP NEWSLETTER DECEMBER 2002
New Years greetings from the latest newsletter from the CHARGE Family support group. My name is Simon Howard and for my troubles I have taken over the responsibility for the newsletter from Yvonne Arnold who has also stepped down from the Chair of the support group. Many thanks for her efforts (and personal advice) over the last couple of years
My involvement with CHARGE is through my daughter Jessica who has CHARGE Syndrome. (there is a pen portrait of her below)
This issue includes short pieces by Yvonne and the new Chair Carol Thomas. There is also an article by my partner Flo who promised Yvonne this article 18 months ago! As Carol says it is important for us parents to exchange information and the newsletter is a useful tool for this. I appreciate that we are all busy (hence the delay in Flo’s article!) but any and all contributions are wanted.
Please remember the CAUSE conference in March. The CHARGE Family support group is able to provide a subsidy for families attending the conference (please see below) however Liz Cook at SENSE (020 7272 7774) needs to know by the end of January who wants to attend.
The next newsletter will immediately follow this conference. Please send me anything you want to contribute by mid March.
CAUSE CONFERENCE
The Cause conference (Charge and Usher) will be held at the Hanover Hotel, Hinckley, Leicester on the 27th – 30th March. The cost will be £400 inclusive of food etc per family assuming 2 adults and 2 children. The CHARGE family support group can provide a 50% subsidy to families wishing to attend albeit on a first come first serve basis.
Please contact Carol Thomas concerning this (details at the end of newsletter).
The conference starts on the Friday morning concluding on Sunday morning and the cost includes hotel accommodation from Thursday night.
For parents of Children with CHARGE subjects covered include the results of the questionnaire I believe was sent to all of us, sensory integration, behaviour, communication and feeding.
There is a leisure club for all children at the conference. If any of you have concerns please see Carol’s article on her family’s experience at a SENSE conference. From my own experience of a couple of SENSE family days in London children with a variety of disabilities (including CHARGE) and their siblings are very well looked after.
LEISURE CLUB – CAUSE CONFERENCE
I know a number of you may be wondering what the “Leisure Club” provided by SENSE actually is, and that it probably would not be suitable for your child with CHARGE.
To put your mind at rest, I would like to tell you of the experience we had with our son James at a SENSE conference in Blackpool. We really fancied going as it was only an hour away from us and we’d never been to one. However we were worried about James (then 2½) despite being informed that we could leave him in the Leisure Club so that we could attend all the workshops. He could not sit for long, stand or walk, did not respond at that time to many signs and only communicated by body language known to us. He also had feeding problems.
I rang David Levy (a parent of a child with CHARGE) who I knew had attended a function like this in the past with his whole family. He told me that it would be no problem - we would have to fill out a detailed questionnaire about James concerning feeding, communication, mobility, activities or toys he likes etc. In addition an appropriate carer would be provided, in James’s case, one to one. We duly gave SENSE all the information.
When we arrived the first morning it all seemed a bit chaotic with children of all shapes and sizes everywhere, some with considerable disabilities, but they were quickly put into groups for their various activities and many went off straight away.
We were introduced to James’s carer who was already familiar with his details, however we filled her in on some extra things, new signs etc and left him. He had a fantastic time – playing with all sorts of toys, had an aromatherapy massage, was taken out for a walk, spent time with other children in a small quiet group, was given appropriate food, and I don’t think he missed us at all!
So if you want to attend, don’t worry – your whole family can come along with you and have a lot of fun. Just get in touch as quickly as you can, so that your children can get Leisure Club places.
PARTING NOTE FROM YVONNE ARNOLD
Family day September 2002 - Birmingham
The family day was held in the Sense Family Centre in Birmingham. Several families came and it was great to see new faces and some people from 'Up North' who we had not seen for some time. Jeremy Kirk had kindly organised the venue and given his time on this day and was very helpful to those who came along. To me it is always good to simply talk, meeting families (many of whom have become friends) and seeing the children grow up. I have received good feedback on the day from families and the professionals who work with them. The general feeling was that Birmingham was a good place to meet and that this should be repeated next year although there is no reason why there cannot be a London meeting as well.
My thanks to all those who came and shared this time and particularly to the wonderful volunteers who looked after the children (and have offered to also come next year) and to Jeremy for all his hard work.
Zara - Jayne goes to Parliament
In June Zara-Jayne was asked by Lord Morris to present the 'United Nations Charter on the rights of the Disabled' to the Speaker of the House (Michael Martin) in a rather grand ceremony. She rose to the occasion and managed to get herself into the local papers and was interviewed by local radio - she is now refusing to do any more public appearances unless she gets national coverage!
A good bye from me and a good luck to Carol.
I only intended to be 'chair' for 2 years and that time is now up so it is my great pleasure to announce that Carol Thomas will be taking the seat in January (voted at AGM in September). Carol has loads of ideas, bags of energy and a younger child with Charge so I am sure she will move the group forward considerably.
This is a difficult job especially with a family and in my case working full time and I have never felt that I could do it justice. Zara-Jayne has had several health problems recently and is in her GCSE year which is keeping us all busy. I will enjoy my semi retirement which unfortunately will not be in the Caribbean) but will hopefully remain a fairly active member of the committee.
You are welcome to continue to contact me with any queries (especially on education) and I will hopefully contribute to the newsletter from time to time.
I wish Carol luck - I am sure she will do a wonderful job and keep us all on our toes.
SHORT NOTE FROM CAROL THOMAS
Hello everyone, my name is Carol Thomas and as the incoming Chair, it seems like a good idea to introduce myself to you in this issue of the newsletter. I am based in Huddersfield in West Yorkshire, and have been fairly active within the Group since my son James was diagnosed with CHARGE at 15 months (he is now 3½ years old). I started off by fundraising and just got more and more involved! I would just like you all to know that I really believe in this Group; we have the opportunity to help each other with ideas, useful tips, medical contacts and generally share experiences with each other. We CHARGE families are a very rare breed and need to network our knowledge. I know from my own personal experience that I often receive more helpful information from other parents that I do from a number of professionals!
I am happy to speak to anyone at any time - my phone number and e-mail address are listed below.
I would also like to introduce a number of new key people within the Group:
Our new secretary is Barbara Payne. Barbara lives in Leeds and is mother of a boy with CHARGE, Charles. Barbara’s number is also listed below.
Simon Howard - the new man behind the newsletters - we are trying to keep everyone up to date with contacts, websites, and information, not to mention interesting family articles. Please contact him with any stories, useful information etc.
We also have a new Treasurer - Ann Maguire. Ann is not a parent of a child with CHARGE, but as a Chartered Accountant is happy to give up some of her free time to help our Group. Ann is also based in Huddersfield. Thanks go to Tom Carroll who has been the Treasurer for a long time and is overdue for a break!
Very special thanks to Yvonne Arnold for all her hard work as Chair over the past two years, for resurrecting the newsletter, promoting Family Days and generally trying to keep our Group going - I hope to continue in the same spirit.
Simon and I met Keilee Bargeman in July 2000 at Great Ormond Street. Our daughter Jessica was then 7 weeks old and was in Neonatal Intensive Care Unit. She had been diagnosed at Lewisham Hospital with CHARGE 3 weeks previously. Having been through the gamut of emotions and questions that must be so familiar to all parents in such circumstances we were introduced to Keilee. Her son Lewis (another child with CHARGE) was also inpatient. He was 14 months old at the time.
Keilee spent some considerable time with us answering questions and telling us about her experience of parenting Lewis. Whilst being entirely realistic about the more trying times, the changes in their family life etc she was very positive about being Lewis’ mother. She was keen to acknowledge his strengths and left us feeling stronger, positive and determined about our future with Jessica.
The next time I saw Keilee was 1 year later at the CHARGE family fun day. We found out then, that she had been under tremendous strain due to Lewis being very ill and undergoing various procedures. Despite this she had taken the time to reassure us and share her experiences with us.
It was a real pleasure to see her, Lewis and other members of the family under more relaxed circumstances. I am not sure that she recognises the significance to us of that first meeting, so I would like to take this opportunity to say a very big thank you to her on behalf of myself, Simon, Jessica (and her baby sister Elly).
NOTE
In light of this help Flo and I have advised Lewisham Hospital that should they diagnose any baby with CHARGE we are happy to be contacted if the new parents want any support and/or to meet us.
Hannh Levey is still the first contact for the CHARGE family support group. Her email address is levey2000@aol.com and her telephone number 020 8552 6961 however if there are any other parents who are prepared to be a contact for parents of newly diagnosed babies with CHARGE in their area please let me have your details.
I understand that in Scotland Elaine Murray-Bell is prepared to be a point of contact. Her telephone number is 01387 250254 and her email address Jmurraybel@aol.com.
SOUND OFF
The first of an occasional series
Advice from a local authority peripatetic teacher for the deaf to the mother of a hearing impaired child – don’t sign to your child, sign language is an obsolete language.
SOUND OFF
The second of an occasional series
Suggestion from a local authority peripatetic teacher for the deaf to the mother of a child with CHARGE (main issues hearing impairment with partial sight) when discussing specialist schools – have you considered a school for learning difficulties?
On the second of these points this seems to be common when the schooling is discussed of children with dual sensory impairment (with or without other disabilities). Please let me know if this has happened to you or indeed any other questionable pieces of advice or information from a professional be they medical, teaching or other.
Although there is no formal support group in London, SENSE London are starting to hold regular family days (every 6-8 weeks on a Saturday) at their family centre in Barnet. There is a swimming pool available in the morning, lunch and plenty of volunteers to look after your children including siblings. In the afternoon parents (free of offspring) can sit around and chat). Although not specifically for CHARGE families it is a good day out. The next is in January. Contact Steve Rose at SENSE for information (020 7272 7774).
PEN PORTRAITS
At the last Family Day Out it was agreed by the parents who attended that pen portraits of their children with CHARGE should be reactivated. Originally any new family joining the group was asked to provide one to go in the newsletter, This has not happened for a couple of years therefore please provide me with pen portraits of your children to include in future newsletters. This hopefully will enable parents whose children have similar problems to contact each other.
To start this again Carol and I have provided portraits of our children.
James was born in May 1999. He has bi lateral retinal coloboma, nystagmus, photophobia. He had a PDA, which was closed by cardiac catheterisation at the age of 15 months. He has a left choanal atresia, and left facial palsy (although the right side now barely moves either). He has a small penis, and has ongoing antibiotic treatment for urine reflux to his kidneys. He is profoundly deaf and wears hearing aids (and is currently being assessed for cochlear implants at Bradford Royal Infirmary). He has swallowing problems and can only eat pureed food. James had severe sleep apnoea, which has completely disappeared following a recent tonsillectomy. He was only diagnosed with CHARGE at one year old, and the extent of his deafness wasn’t recognised until he was fifteen months old, so he was a late starter with hearing aids.
He started going to Thorn Park School for the Deaf in Bradford three days a week at age two and half. He now attends four days a week. He has the global developmental delay associated with dual sensory loss, but no apparent cognitive impairment; he has recently begun to make significant progress, understanding BSL and On Body signs, very close to walking unaided, and interacting with people around him. He laughs a lot, and is generally a happy little boy.
Jessica is a 2½ year old very happy girl with a lot of charm (apparently) and a strong personality!
She was born in May 2000. On her birth it was immediately apparent that she could not breathe. The following day this was identified as choanal atresia with heart problems suspected as well. Lewisham hospital immediately suspected CHARGE Syndrome and following an eye examination 4 weeks later this was confirmed.
Jessica has been diagnosed with bi lateral retinal coloboma, a detached and folded retina in her right eye leaving no vision, sunlight sensitivity, profound hearing loss (for which she has been wearing hearing aids since she was 6 months), bi lateral choanal atresia (stents inserted at 6 weeks for 14 weeks), heart problems – PDA (ligated at 5 weeks), small ASD, AVSD and leaky valves (the AVSD and valves were repaired at 6 months) - she has been left with the ASD and a small residual VSD. She also has slight facial palsy on the left side of her face. Unlike many children with CHARGE she has no problems with feeding.
She is starting at Frank Barnes School for the deaf in January. This is due to networking with other parents of children with CHARGE (thank you Hannah Levey). Prior to this she has been at a local authority nursery for children with special needs – the only child with a hearing impairment.
Like James she has global developmental delay associated with dual sensory loss but with no apparent cognitive impairment. She does not yet walk unaided but enjoys her walker trolley and walking held by her hands. She is understanding an increasing number of BSL signs.
WEBSITE AND SUPPORT GROUP INFORMATION
Please let me know of any websites or support groups that might be of use to other parents or children with CHARGE.
CONTACT DETAILS
Carol Thomas
Telephone: 01484 646828
Email: bothamhall@talk21.com
Barbara Payne
Telephone: 0113 286 8350
Email: john.payne7@btinternet.com
Simon Howard and Flo Njeru
Telephone: 020 8265 3604
Emails: si_howard@hotmail.com or flonjeru@hotmail.com
(note if you are not using a hyperlink for my email it is si_howard@hotmail.com – the underscore cannot be seen on the link)
Yvonne Arnold
Telephone: 01708 764533
Email: eveian@btinternet.com