Happy New Year

The Trustees would like to wish you all a happy new year and all the best for 2004.

Please remember, we are here to help you in any way we can. Please do contact us if there is anything we can do to help you or to offer advice or suggestions and please, do let us know of the good things as well as the not so good.

We are always looking for stories of success as well as problems and solutions for our newsletters. Your help and advice can be of enormous help to others. Please share it with us

Colin Hill, Chairperson DSL

We held our Christmas Party at St Anthony of Padua Church Hall on the afternoon of 6th December 2003. Nearly everyone who sent in their slips turned up and we had quite a full house. It was lovely to see how much some of the children had grown since we last saw them and to meet new children and their parents.

We had a disco (a thank you to Matt who provided it) and this year we had a new entertainer - Barnaby - who kept the children enthralled with his antics (and the grown-ups as well).

Santa was kind enough to stop by and hand out presents to all the children, although I think most were eaten before the afternoon was out.

Between events we had a buffet meal This year we tried to tailor it more to the children with extra sausage rolls and crisps, cakes, mince pies, biscuits and tasty snack items.

Our thanks go to Glen Fletcher for fund-raising for the party; Pat Baxter, Mal Hill and Margaret Hogan who sorted it all out with their usual enthusiasm (and I am sure their other halves helped in their own way as well). .
We were also helped by a kind donor who requested that the money we received be used towards the cost of the party. From the feedback we have had, it seems that most of you had a good day. Please feel free to contact us if there is something you would like to comment on to make it even better.

Next year’s party has been booked at the same venue for 4th December but will start a little later at 2.30 p.m. as the hall is being used for another event in the morning. More details nearer the time!

A thank you to all who attended.

Colin Hill, Chairperson DSL

My former headmaster from Booker Avenue Juniors entered me in the TESCO EVERY LITTLE HELPS competition. At first, I wasn’t informed of this, but weeks later, I received a certificate showing me that I had won the regional heats and was on to the finals in London on 4th December.

The finals were held at the London Aquarium, and when I arrived there, Maria Eagle, the minister for the disabled wanted to meet me. I had my picture taken with her and then I went through to the presentation. The prizes were presented by Angelica and Jake from Children’s B.B.C.. When they called out my name as the winner, I was extremely surprised because, when I train the children with my dad, I do it only because I enjoy it.

David Atkinson, aged 12 years.

Editor’s note:- David, along with his older brother and some friends, comes along every Saturday morning to the Greenbank Gymnasium to help his dad, Alan, with football coaching for our children with Down syndrome. We are extremely grateful to them all for the work they put in and we would like to offer congratulation from DSL to David on receiving his award.

Just a reminder that football coaching takes place every Saturday morning between 10.00 a.m and 11.00 a.m at the Greenbank Project Gymnasium, Greenbank Lane. If you are interested in bringing your child along, girls as well as boys, please contact Alan Atkinson on 0151 724 6181 alternatively, just turn up one Saturday to see what goes on.

Editor’s note: The following letter was sent to the Down’s Syndrome Association in September 2003, the authors have asked us to include it in this newsletter.

Dear Sir or Madam,
We are writing to you with real concerns we have about the attitude of and values of the DSA. There are two reasons for this, which we will now explain.

Firstly, we wrote to you (Spring 2002) about the issue of Down syndrome and Autistic Spectrum Disorder (DS/ASD), and our concerns that it may be largely undiagnosed in the population. We suggested that the Association try to investigate its membership for children/adults with suspected DS/ASD. At that time, you questioned the feasibility of such an undertaking. In the following issue (Summer 2002), a letter was printed from parents with similar views as ours, requesting that the DSA take a more active role in representing all of its members. No comment was made to this request. Could you now give any indication if you intend to take this matter any further?

Secondly, may we draw your attention to the minutes of the AGM (12th October 2002), recently sent out to our members.
The Chief Executive’s report :- “For many years  we have been asked to provide more information to special schools, so we have accepted the challenge and the special school pack funded by the DfES will be published next year. It will include much more information about strategies for dealing with challenging behaviour and issues around pupils who have a dual diagnosis but of course the emphasis will be how to achieve as much inclusion as possible for even the most disabled students using examples of good practice.”

Our son, Peter, has the dual diagnosis of DS/ASD. He was diagnosed by Stephanie Lorenz (UK Education Consortium) when he was 4 years old and attending both mainstream  and special needs nurseries. Her recommendation was that Peter should attend an autistic unit within a special school. Like many of your members, our wish was for inclusion for our son. However, inclusion would have been unsuitable and very stressful for him. The deciding factor was his needs and not our wishes. So, now he attends a special school, the population of which the DSA chooses to discriminate against, even it would appear, refusing to fund information packs.

There must be many parent members whose children attend special school for one reason or another. We are appalled, saddened and angry that you take such a negative view towards a sizeable proportion of your membership on such an important issue.

We should be grateful if you would explain how you decide which projects to fund and where the DSA stands regarding being the ‘voice’ of all its members.

Yours sincerely,

Lorraine and Alex Bennett
Parent Members DSL

If you wish to contact Lorraine and Alex, or have any comments to make about the points they raise, please do so via our secretary, see front cover for contact details.

Our 14 year old daughter, Helen, joined
Ashfield Special School in September. She is not receiving speech therapy and, contrary to last month’s advice in this magazine, I will not be checking to see if it is mentioned in her recent statement. I respect Colin Hill’s advice, but since Helen’s first speech therapy sessions, when she was 2 years old, until now, I have always been frustrated with the help she has been offered. Indeed, I believe that Helen has suffered more from being removed from lessons in order to see the speech therapist.

Hopefully, I am alone in my adverse opinion of speech therapy provision since the cost of the service must be high. It would be interesting to hear the comments of other parents.

The main problem seems to be the infrequency of sessions, and the fact that our children’s problems are often caused by factors peculiar to Down syndrome. I believe that these factors need to be specifically addressed for any real progress to be achieved.

The three most important factors, which have affected Helen’s talking are, loose facial and tongue muscles, hearing problems and delayed commencement of speech. To my knowledge, none of these factors has ever been acknowledged or addressed by the speech therapists as relevant problems where they could help or advise. Most disappointing is the fact that I know that these are problems often experienced by children with Down syndrome, because of information I have picked up in various ways. Never has a speech therapist ‘talked me through’ the problems that Helen could have, because of her condition, and explained how these problems could or would be tackled.

Of course, Helen’s speech is hard to understand due to her laxer muscles. However, I would have expected to be given exercises, tongue twisters, sucking and blowing games, even advice for Helen to be encouraged to read aloud frequently at school, in order to tighten and strengthen these muscles, but this has not been forthcoming. There seems to be a belief that nothing can be done about this weaker muscle power, but indeed, we are all aware that, although it is hard for our children, with appropriate exercises and frequent practice they do gain strength.

It was only when I attended a deaf awareness course that I realised that Helen, who has a fluctuating hearing problem, would periodically not be hearing a wide range of sounds. Naturally, she would only say the sounds she heard. One would expect the speech therapist to have given very detailed information as a matter of course both to myself and to the school concerning the sounds that Helen might not be hearing and the sounds she would have trouble pronouncing. Her hearing loss of course affects her understanding of speech, but no speech therapist ever explained how Helen’s speech problems would be affected often very severely by her hearing, in that way, and how these problems could be counteracted. Indeed, there was no obvious interest between the work of the speech therapist and the Audiology Department.

I have been most disappointed concerning the lack of interest in the fact that Helen only started to say words when she was three years old. Although this delay is very common with children with Down syndrome, and there is then the usual progression in acquiring the different aspects of grammar, neither the schools or myself were given any guidelines as to what the progression was so that we would know what she would be able to manage, and what she could not possibly understand.

Apparently, it is accepted that there is a time when our brains easily acquire the ‘mother tongue’. If this stage of development is missed, it is obviously harder to learn the language. Helen has always been interested in learning ‘grammar’ since she is obviously frustrated by her inability to express herself occasionally. She would have benefited from a well structured, intensive approach to help her acquire the different aspects of speech. This is the accepted approach when our children of average intelligence are taught foreign language. We would not think that one half hour lesson every week of French would be adequate. Instead, most schools would try to organise a daily lesson, with homework, to help the child practise and retain the language.

Although our children are said to have poor memory skills, and problems in retention of knowledge, yet many of them are fortunate if they receive a half hour speech therapy session every half term (let alone every week!) in order to be helped to learn and practice new grammar skills. For our children, learning to converse in English is similar to other children learning another language, and instead of making this easy with frequent repetition, our children receive much less practice and reinforcement of any new language skills than other ‘brighter’ children receive when learning a new language.

I have now bought a self study practice grammar book for English students, by Raymond Murphy. Helen enjoys doing the exercises with me. It is probably far from perfect, and I know that there are many computer programmes that are more suitable for her age, but I don’t know where to get them from. For the first time I know that Helen will be introduced to the various nuances of English grammar, (we’re just making questions with ‘did’ + negative). I tried for a long time to get similar materials from speech therapists, but although they gave me many sheets, yet there never seemed to be any structured teaching plan for Helen to follow. I must say that when Helen attended Birkdale (School for Hearing Impaired), she did, in fact, receive intensive speech therapy, which did address her specific problems, but that has not happened elsewhere.

I realise the failing of the speech therapy programme with Helen may have been because the therapists were too busy to make structured plans specific to the needs of every child, or that the problem may have been that the sessions were too infrequent. But, for whatever reason, I truly have never identified any improvement in Helen’s speech or understanding that I could in any way attribute to the speech therapy she has received.

Barbara Cherry, Parent Member DSL

If you wish to contact Barbara, or respond to her comments, please do so via our secretary, see home page for contact details.

I thought you might like to see the reply to a letter I sent to Oliver Letwin MP. We had an article posted onto our group by Kathy in the USA who had stated that the IQ had been brought up by as many as 20 points for children with Down syndrome in recent years. If that could be repeated, most of them would fall within the normal-mild learning difficulties range. This was before the Stanford research. Perhaps you could be so kind as to spread the word to ask any parents of children with Down syndrome to ask their own MPs why so much government money is being spent on screening and none on research. I would ask you to write to your MP, so that when this parliamentary question is asked, she/he can also support this stance. Otherwise, it could fall on deaf ears. Let’s get some support out there with people that hold the purse strings.

Gillian Barrett, Parent Member Down’s Syndrome Association
 

 
Gill’s Letter to
Oliver Letwin MP (24/10/03)

Dear Mr Letwin,
I came to you last year with regard to helping me with the plight of Down’s syndrome. My son, Alexander, aged 7 has DS and I wrote to you several years ago when he was first born. You sympathised, because like ourselves, you had children in ‘later life’ (without sounding too rude!) and were more at risk. But you did not have that heart breaking decision of whether to abort your own child or not. This dilemma will face an increasing number of people now that testing is to be introduced for all pregnant women - not just those over 35.

You may remember I was a trustee of the Down’s Syndrome Association, which I found to be totally ineffective and was looking for ways forward.

I wrote to the Department of health some years ago asking how much was spent on research in DS. They were very proud of their figures (several £million) which only showed research in the detection of DS, not in the treatment of it.

I attach a copy of a paper written by someone in the USA. It strikes me that the figures are similar over here. Despite DS being the most prevalent of mental disabilities, the only money to be spent is the paltry amount raised by charities. The Down’s Syndrome Research Foundation offers hope, but it has no real money.

It would make a real difference if the hope of Dr Costa could be realised in raising our kids’ IQs by 20 points. It would also offer more hope to parents faced with the dilemma of aborting a child with DS, as it would be less of a tragedy than it is now.

What can we do to bring about a change in expenditure in the health services to knowing more about genetic conditions? It really needs a ‘think tank’ bringing together all the research in the world - directly and indirectly - relating to DS and determining a way forward to helping these very special children.  Any ideas in formulating something would be greatly received.

(N.B. The attached article to which Gill refers now follows.)
Why Do We Need Research in Down Syndrome?

For the past three years, Mile High Down Syndrome Association (MHDSA) has had our office at the Eleanor Roosevelt Institute, a leading genetics research institute headed by Dr. David Patterson. In my role as volunteer coordinator and office assistant, I spend much of my time at ERI, and I bring my eleven-year-old son Tommy with me on occasion. We both feel right at home with all the terrific folks who work at ERI, and I've really enjoyed talking with the scientists about their research. Every one of the scientists is passionate about what they are studying, and the potential ramifications it will have on people with Down syndrome, diabetes, Alzheimer's disease, or Lou Gehrig's disease. And I have come to share that passion, and in my opinion, the future quality of life for our family members with Down syndrome will be determined by the research that is being conducted today.

More than forty parents attended the recent presentation by Dr. Alberto Costa, who came to ERI some eighteen months ago. I was astounded to hear that research in Down syndrome is funded at an extremely low level comparative to other disabilities. The majority of research funds are raised by national foundations interested in a single disability. To illustrate his point:

Down syndrome, with an occurrence of one in 800 births, has been funded at approximately $35,000 per year by the National Down Syndrome Society; cumulative funding is $1 million since 1983

Autism spectrum disorder, with an occurrence of one per one thousand, has received $5.7 million in research funding from Cure Autism Now in the last five years

Fragile X, a chromosomal abnormality with an occurrence similar to Down syndrome, receives $2 million in research funding annually through FRAXA

Type I diabetes, with an occurrence of one per one thousand children, is funded with $115 million generated by the Juvenile Diabetes Research Foundation

Dr. Costa's talk sparked quite a bit of discussion concerning this funding discrepancy, which also occurs at the federal level. One reason is that in the past, most research has focused on methods to identify Down syndrome during pregnancy, with the idea of terminating the pregnancy. Understandably, most parents of children with Down syndrome find this offensive, and have not therefore supported research. Secondly, most of our energy as parents has gone into early intervention and working towards the inclusion of our children in the community. Just a generation ago, children with Down syndrome were routinely institutionalized and denied a full life. Today, our children are accepted as members of our community.

However, this acceptance has led to complacency on the part of parents. Dr. Costa compares the general outlook on Down syndrome today with that of mental illness in the 1950s. "Fifty years ago, parents and family members were told to accept mental illness in their children as unchangeable and untreatable, a fact of life. However, later medical research identified numerous drug and behaviour therapies that dramatically decreased the unwelcome manifestations of mental illness and greatly increased the quality of life for these individuals. What if there are similar drug, nutritional, or physical therapies that might make a similar gain for our children with Down syndrome? Without basic research to identify the deficits associated with Down syndrome, and further research to test drug or physical interventions to ameliorate these deficits, we will never know."

Dr. Costa began his career as a physician and later became a neuroscientist; he became interested in research in Down syndrome when his six-year-old daughter Tyche was born with Down syndrome. Today, Dr. Costa is the only researcher in Down syndrome who has been awarded a major grant from the prestigious National Institutes of Health exclusively to study potential drug therapies. The majority of the limited funding in Down syndrome is dedicated to the study of individual genes on chromosome 21, which will not directly affect the quality of life for our family members with Down syndrome in the near future.

During his talk, Dr. Costa used what he called a "simple model" to encourage parents and the research community to visualize the impact on our family members with Down syndrome if a drug or other therapy could raise the average IQ of the population of individuals with Down syndrome by twenty points. This is not an unattainable goal, given that there has been an average gain of 20 IQ points since individuals with DS have been living at home and benefiting from educational and early intervention opportunities. Today, the average IQ for a person with DS is 50; assuming a standard deviation of 10 points, this translates into:

300,000 individuals with DS
20,000 individuals with IQ below 35 (severe to profound mental retardation)
188,000 individuals with IQ between 35 and 55 (moderate mental retardation)
85,000 individuals with IQ between 55 and 70 (mild mental retardation)
7,000 individuals with IQ between 70 and 85 (borderline or simple delay)
70 individuals with IQ above 85 (normal range)

If a drug or other therapy was discovered that could raise IQ points by 20, this is what it would mean to our family members:

300,000 individuals with DS

70 individuals with IQ below 35 (severe to profound mental retardation)
20,000 individuals with IQ between 35 and 55 (moderate mental retardation)
130,000 individuals with IQ between 55 and 70 (mild mental retardation)
130,000 individuals with IQ between 70 and 85 (borderline or simple delay)
20,000 individuals with IQ above 85 (normal range)

Let's dream big! What can we as parents do, to make this come true? There is no master plan for basic medical research; what works is to provide the funding to study a problem, and let the scientists search for answers. Today, Down syndrome attracts little interest among research scientists due to the low level of funding. If the funds are available, scientists will flock to the field, and unlock the mysteries of Down syndrome, and more importantly, how we can improve the quality of life for people with Down syndrome today and in the future. As parents, we need to support research by advocating for funding and sharing our own resources. Let's raise the awareness of Down syndrome in the medical research community, we've seen what the supporters of muscular dystrophy, autism, diabetes, and other medical disorders have accomplished, and we need to make this happen!

Anne Simpson, Mile High Down Syndrome Association USA
 

Mr Letwin’s Reply To Gill

Many thanks for your letter of 24th October.

I remain very concerned about the fact that the Health Service does not seem to be engaged in any serious research about cures for Down’s Syndrome. I am grateful to you for reminding me of this issue - so poignant to you, and important to the nation as a whole.

I shall put down a Parliamentary question, asking the Secretary of State for Health whether he is willing, at least, to do as you suggest and to bring together existing research through some form of "think tank". I hope this may prompt further reflection on the subject within the Department of Health.

Editor’s note :- Mr Letwin’s reference to ‘cures’ for Down syndrome is somewhat unfortunate, however, it should not detract from his proposal to put down a Parliamentary question.

If you feel you would like to take up this matter with your MP, Gill has offered to supply a suggested format for your letter.
She may be contacted at :-
Chelsea Cottage, Dorchester Road, Sydling St. Nicholas, Dorchester DT2 9NU
Or Email gill@bizkitsolutions.com
 

Contributors to this current newsletter have raised some controversial topics with which you may agree or disagree. We are grateful to them for taking the time and trouble to do so. This is one of the purposes of our newsletter, namely, to give members an opportunity to air their views. If you would like to respond to any of the items, or to raise other matters, please send your contribution to the newsletter editor. All contact details may be found on the front cover.

Articles may be hand written or typed and posted to us. Alternatively, they may be sent by email, preferably in Rich Text Format so that they may be opened in most word processing programs. This is by far and away the easiest method for our newsletter editor who is then able paste them straight into the newsletter rather than copy them out.

Photographs are also welcome but don’t forget, if you send colour photos, they will be produced in black and white in our newsletter. Again, it is preferable, but not essential, if you could email photos so that they can be pasted straight into the newsletter.

All contributions and opinions are welcome and will be included in their entirety unless they are deemed, by the editor in consultation with the trustees, to be rude or offensive.

The whole family went out to dinner one evening. Menus were passed to all including Mary, the eight year old daughter.

The conversation was an ‘adult’ one, so Mary sat ignored.

When the waiter took orders, he came to Mary last.

“And what do you want?” he asked.

“A hot dog and a soda,” she said.

“No,” said her grandmother, “she’ll have the roast chicken, carrots and mashed potatoes.”

“And milk to drink,” chimed in her father.

“Would you like ketchup or mustard on your hot dog?” asked the waiter as he walked away, taking the parents aback.

“Ketchup,” she called out.

Mary then turned to her family and added, “You know what? He thinks I’m real!”

William J Bausch