Wednesday, 20 January 2010

Daniel Green Memorial Celebration

Sorry I've not posted for a few days, been a bit busy with hubby's birthday, bad weather and launching the Daniel Green Memorial Celebration which is my own personal campaign for 2010.

So why now and what's it for?

Well for those who don't already know, back in August 1989 on my 29th Birthday, I received a slightly unexpected present.  My second baby was born a month early complete with an extra chromosome 21, heart and bowel defects (if you want you can read more about it here and here).  Despite the best efforts of the wonderful team at Great Ormond Street, in particular Dr Phil Rees and Prof Martin Elliott, Daniel was only to be with us 14½ short weeks before getting his angel wings never having made it home from hospital.

As you can appreciate, losing a child is never easy, but when you share a birthday every year that day serves to re-inforce your loss.  To be perfectly honest I went from being a big kid who loved her birthday (to give you an idea, my birthday cards were by my bed for the morning and when I went into labour I took them to the hospital and was opening them in between contractions!) to someone who would have preferred to crawl into a hole for the day and ignore it.  However, there were other things that conspired to make that impossible:
  1.  My husbands eldest niece was 18 the day after Daniel was born

  2. My husbands sister gave birth to a baby girl 2 days after Daniel was born (already being at the hospital I was the first famiy member after her parents to see her - it was extremely emotional!)

  3. 4 years later, my daughter was born 7 weeks early, arriving the day before my birthday.

So ignoring my birthday has never really worked and over the years I've learnt to cope with it, which meant I was caught completely off guard in 1997 for Daniel's 18th.  As August approached I started looking for a present for my niece, but no matter how hard I tried I just found it too emotional  In the end we gave her an envelope of cash and even then I was in tears as I handed it over trying to apologise and explain that it was because I just couldn't handle it.

Well that experience made me realise that 2010 was going to be a hurdle for me!  As much as I might want to keep it low key, I will be 50 so folks aren't going to let me forget that and to many the significance in relation to Daniel being 21 will not be obvious.  So I decided if I can't run and hide, then I am going to try and make it a celebration of Daniel's short life and the incredible gift that has been to our family - and so the Daniel Green Memorial Celebration was born.

My intention is primarily to raise awareness and secondly some funds for Down's Heart Group by spending time with some of the children and young people in the UK who have Down's Syndrome and heart problems.  I want to see what their lives are like and what it might have been like to share those things with Daniel if he had lived (much like Down's Heart Group patron Sarah Boston did in her book Too Deep for Tears: Eighteen Years After the Death of Will, My Son and in a tv programme Everyman many years ago).  So I am now looking for young people who are willing to share some time at school, at play, at work or anything else they enjoy.

I've already had a great response and it looks as if I will be spending time in various schools and playgroups, at hydrotherapy, working in a cafe staffed by individuals with special needs, enjoying the botanic gardens and feeding the ducks, oh and being put on horseback by a special olympics medal winner!  And on top of that I am hoping to get to meet a load of my online friends and their special kids - it's going to be great fun!

Then to finish it all off, Down's Heart Group are holding their bi-annual conference on November 13th and 14th at Wokefield Park, Reading and the Saturday night dinner and disco will be the finale to the campaign, which is very appropriate as it is the anniversary of Daniel getting his angel wings.  I am hoping that many friends, both old and new, that I have met along this wonderful journey wil be able to join us at the Dinner and make a very special end to this celebration of my sons life.

I'm bound to be posting more on here as plans progress and of course photos from my adventures, but if you would like to know more or to get involved, please do get in touch:

PS.  Apologies to my friends overseas, I know lots of you want to get involved and I'd love to make this a worldwide campaign but I don't have the funds available and I suspect Down's Heart Group wouldn't grant me that much leave!  Instead, how about we plan some kind of worldwide thing to do on August 3rd or November 13th?

Sunday, 10 January 2010

To terminate or not?

Well I'm guessing this could be the post that evokes the most responses so far, because wherever people sit on this question, they tend to feel very strongly and passionately about it and I've found that it can evoke very strong one-sided responses even from some of the most open-minded people - but here goes anyway.

Yesterday in the Guardian there was an article entitled To us, she was Emily about a couple who chose termination after tests showed their baby had Down's syndrome and how that  decision gradually tore their family apart.  It was a very honest piece from a viewpoint not often represented and for me it reinforced some of the concerns that I have over this issue.

In my work with Down's Heart Group I have spoken to many families facing this difficult decision and as a representative of the charity I am expected to be factual and non-judgemental and not to allow my own personal feelings to enter into the conversation.  I hope that after all these years I have perfected this, so I am not going to behave any differently here on my blog.   I'm not going to point out all the positive sides to having someone with Down's Syndrome in your life as reading through some of my previous posts should provide that information for anyone that needs it.  What I am going to do is discuss some of my concerns over the way some families are arriving at the decision to terminate.

First and foremost I believe that this is a very personal decision and one that should be made based on individual circumstances.  People have different moral and religious beliefs, come from different cultural backgrounds, have differing family set-ups and varying degrees of support available to them, so naturally the decisions they make will vary, so I find it somewhat concerning that such a high percentage all choose the same option, which makes me wonder on what they are basing that decision?

This needs to be a FULLY INFORMED decision, taking into account all the factors I mentioned before and realistic unbiased information about Down's Syndrome.  This information needs to be made readily available and to be based on pure fact with no implied expectation of the route the family will choose to take and it should include help in meeting families who have a child with Down's Syndrome, support group contacts  and also offer alternative choices such as adoption.

Sadly, in my experience this is all too often not the case.  Termination is the expected outcome; the possible medical problems of the baby are given high precedence; adoption is never mentioned even when a family is obviously in turmoil over the decision; focus is given to the child's lack of future potential even though as with any baby there is no way of knowing what that will be; the option of "throw this one away and have another go" is readily offered.  

Generally, termination seems to be offered as an easy way out and that worries me greatly.  It worries me because I know of families who have gone down that route, steered along by the medical experts and then been left to pick up the pieces when they slater tart questioning whether they made the right choice.  Families who have been unable to conceive again and ended up childless and one family who terminated, refused testing in the next pregnancy as they didn't want to face all the pressure again and went on to have their second child with Down's Syndrome.  They were devastated, not by that baby having Down's Syndrome but by guilt over what they had done before.

I'm certain that many parents who opt for abortion are left with very raw emotions from their experience (yes some of you may feel that they deserve to, but I would ask did they really know and understand that that might happen?) and I wonder what the long term effect on their mental health may be?  

I am sure that not all of them walk away unscathed and never look back.  I can't count how many times the family of a young child has told me that suddenly there are loads of people with Down's Syndrome in their area, but of course really those people were always there it's just that now these families are far more aware and tuned into the characteristics so they notice them.   I suspect that for many of those parents who have a termination it is much the same and that everywhere they go they see people with Down's Syndrome who are a constant reminder of the choice they made and I guess that's not always an easy thing to live with.

In October 2009 the British Medical Journal published a reseach paper Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register.  One of its conclusions is "These future changes need to be closely monitored to ensure that appropriate resources are available both for the potentially increasing numbers of therapeutic abortions and also for the babies who will still be born with Down’s syndrome."  Whilst we are worrying about the cost of future medical and educational requirements, I'd like to suggest that some research be done on the psychological costs for the families who later regret following the advice of the experts at a time when they were too vulnerable to demand adequate information to make a fully informed choice for the future.

Families given a diagnosis of Down’s Syndrome, whether before or after the baby’s birth are incredibly vulnerable, the onus should be on ALL medical professionals to ensure that they receive up to date, accurate, realistic and unbiased information so that they are in a position to make INFORMED CHOICES.  Thankfully some medics are excellent at this, but I fear that they are still outnumbered by the others.

Wednesday, 6 January 2010

On the 12th day of Christmas I'd like to introduce ...

actually now I'd like your help!

Over the past 11 days I have introduced you to a few individuals with Down's Syndrome who in one way or another have been an inspiration to others. 

Some that have achieved great things themselves and some that have inspired others to great things.  

But if we are honest, having a child with special needs can be difficult, frustrating and tiring and that is all that a lot of people on the outside see, so we need to tell them about the other side, the wonderful positive gifts that sharing the life of someone with Down's Syndrome brings you.  
During Daniel's short life I was inevitably so tied up with his medical issues that I didn't get chance to realise that important fact and when he died the grief was too intense to see beyond it for a long while.  I felt terrible guilt - guilt that somehow it was my fault he had these problems, guilt that I hadn't been able to save him and guilt that I had never really accepted him and loved him for who he was because I hadn't really had chance to come to terms with the Down's Syndrome.  

It was some way down the line that I finally realised that it was just the medical problems that had clouded my view.  That a mum who: visits twice a day; takes clean clothes and dresses their baby; puts him in pj's every night and sets his mobile going before leaving; expresses milk for 6 weeks with only a photo and a recording of her baby crying because she's not allowed to feed him direct because he's too weak - that's not a mum who doesn't love her baby!  Somewhere during those 14½ weeks of his life, everything else had stopped mattering, he was my baby and I loved him unconditionally, I'd just been too busy doing it to notice!

Only finally then was I able to see clearly what a truly special gift Daniel was in my life and what richness people with Down's Syndrome bring to the world.

I know there are many more individuals, like those I have featured, so now it's time for you to tell me about the person with Down's Syndrome that inspires you the most and why.  Post a comment saying :
  • who they are
  • how you know them
  • how they have inspired you
It doesn't have to be something very public and obvious like those I have focused on, it can be something small and personal such as the effect my son Daniel had on my life.  
Who knows, maybe I can feature them on my blog some time in 2010.

Tuesday, 5 January 2010

On the 11th day of Christmas I'd like to introduce ...

the pupils of the school of Down Syndrome Association of Nigeria

Over the past 10 days I've introduced you to people with Down's Syndrome that inspire me for varying reasons, so after my trip to Nigeria last year I had to include these young people.  They have inspired me to try and raise awareness of the work the Down Syndrome Association of Nigeria (DSAN) is doing to improve the lives of children and young people.  


Having seen firsthand the situation in their country, the total lack of provision for health and educational needs makes me realise that whilst we still have much to strive for in countries such as the UK and US, we have made incredible advances for our young people and have much to be grateful for and proud of.  

There is never room for complacency, but whilst we continue to work towards improvements for our own youngsters, we can also use our valuable experience to help those who have a greater need for change, in this way we can help and support them to make advances much sooner.

The young lady in this photo is the inspiration behind DSAN, her mother, Rose Mordi started the Association and works tirelessly as it's President, trying to raise awareness and provide families with positive and realistic expectations for their children.   

This is not an easy task in a country that is seriously under resourced in every way and where knowledge and understanding of Down's Syndrome is very limited, so much so that the birth of child with any form of handicap is seen by many as the result of some kind of curse being placed on the family.  The lack of ante-natal and post-natal care can mean that diagnosis is not made until a baby is at least 4 months old, then of course there is no routine screening for medical issues, so the prognosis for many babies is not good.

Given this background it is easy to understand why the DSAN are proud of their achievements and of the fact that they have a resource centre where they run a school for some of the youngsters.  But I have to tell you that this centre is probably very far from what you imagine - 3 basic rooms, a small courtyard, a small kitchen and one (non-flushing) toilet accessed straight from the classroom.  And because of the distance some of the pupils travel and the lack of transport, many of them stay at the centre overnight during the week, using mattresses that are placed on the classroom floor.

Given all that is against them though, just look at these beautiful young people.  They are beautiful, happy, loving, caring individuals and against all the odds they are achieving and showing their community that they have a valuable part to play.

Please do anything you can to help the work of DSAN, at the very least join their  Facebook group to show your support for the hard job they have ahead of them.  They don't have what we would consider basic health or social care and state education makes no provision for special needs, yet these young people are always clean and well cared for and THEY ARE achieving!  How much more could they do with better provision?

Despite all the negative publicity you may have heard about Nigeria, the people I met were friendly, caring individuals who know there is a lot of work to be done in their country, but they are trying to make a start for some of their most vulnerable citizens and provide them with the opportunity to show just what can be achieved given the opportunity. 

Please watch my photo montage from my trip.

Monday, 4 January 2010

On the 10th day of Christmas I'd like to introduce ...

Brad Hennefer

20 year old Brad was the first individual with Down Syndrome to graduate from his High School in Cherry Hill, New Jersey.  He enjoys listening to music, watching movies, hanging out with his many friends and playing sports.  He has taken part in Special Olympics basketball, golf and weight lifting, winning several gold and silver medals and he was also a member of his high school varsity basketball and golf teams.  

In October 2008 the New Jersey State Senate honoured Cherry Hill East’s Varsity basketball team in recognition for it's inclusion of Brad, but by all accounts, Brad was not only a greatly liked member of the team but also a valued player.  You can see him in action here.

Brad started playing golf at the age of 3 when his older brother  would take him to play miniature golf, but as he got older, his family noticed that he had quite a talent for the sport.  Through the Variety Club of Philadelphia, Brad was partnered to play in a few tournaments around the area with player Rich Smith who quickly noticed Brad's talent and began working with him to develop his game. 

Brad is now able to play a full 18 holes of golf (you can see his progress here) and knowing how much golf had helped Brad, he, his family and that of his golf partner wanted to give other people with DS the same opportunities, so they set up Golf for Life which is becoming a successful program, both in the Philadelphia area and across the US. 

"I play golf because it's fun, and I can spend time with my father, and my brother, and my friends.  It's good exercise, and, really, because it's fun!"
-Brad Hennefer, age 20

It also appears that Brad has some pretty smooth dance moves - check them out here!

Sunday, 3 January 2010

On the 9th day of Christmas I'd like to introduce ...

Andrew Banar

Andrew is an 18 year old drumming enthusiast who decided that he wanted to continue his education after he finished high school but that cost money, so he decided that he needed to get a job to finance it.

He started off selling lemonade, but then his mum had an idea after seeing Andrew draw a simplified drummer wearing a faux-hawk hairdo, just like his idol TrĂ© Cool in American rock band Green Day.  She wondered if the could sell t-shirts with Andrew's logo on and Andrew's website Group Hug Apparel was born.  

Since then Andrew's product range has increased to include women’s styles as well as cloth tote bags and aprons with the intention to add more of Andrew’s original designs in the future.  

Worldwide sales have been made through the website, but Andrew is happiest when he  is making personal sales and he if often to be found at events selling direct and taking the opportunity to meet people personally.   Not only do his products raise awareness but he donates $2 from every sale to various charitable causes.

So have you got your's yet?  I was wearing mine at the World Congress in Dublin!   Check out the product range here.  

Saturday, 2 January 2010

On the 8th day of Christmas I'd like to introduce ...

the late Deanna Sipaco

Another inspiring individual who was sadly born with  a heart defect at a time before corrective surgery was widely available with positive outcomes.  

Deanna, a talented artist,  (pictured here with Sue Buckley from DownsEd) died in September 2005 at the age of 33, leaving behind her not only her artwork but also a legacy in the form of the DS (Deanna Sipaco) Foundation for the Differently Abled.


This non-profit organisation started by her parents on Deanna's 29th birthday, continues to cater for the social and self-actualisation needs of people with special needs.  Deanna started painting at the age of 9 and the Foundation Centre now displays a number of her paintings that look like a kaleidoscopic blast of flowers in vibrant colors, as well as paintings and doodles of children with Down’s Syndrome.

During her lifetime, Deanna was also invited to various national and international events including the World Down Syndrome Congress in Singapore in 2004 where I was lucky enough to meet and chat with her.    Her art was colourful and vibrant and Deanna was very enthusiastic about it, but sadly her underlying heart condition was very obvious and it was to be this that resulted in her early death.

You can see a video of more of her artwork here.

At the World Congress in 2009, Down Syndrome International acknowledged Deanna's contribution to people with Down Syndrome in the Philippines and the rest of the world by presenting an award which was accepted on Deanna's behalf by her parents, Diana and Alberto Sipaco.  

 Receiving the award on behalf of our daughter brought us a sense of gain. It’s heartwarming that even if she is no longer with us, the world continues to recognize her for what she was and what she brought to other children with the same circumstance as she had.” her mother said.

Friday, 1 January 2010

On the 7th day of Christmas I'd like to introduce ...

the late Judith Scott

Although a sad story, I think this highlights how things have progressed for people with Down's Syndrome and as such I wanted to share it with you and thought it deserved a place here.  I also think that ultimately it had a happy ending which makes it worth reading.

Judith and twin sister Joyce were born on May 1st 1943 and for their first 7½ years they were virtually inseparable,  Then it was time for school and their parents were told that Judith was ineducable and recommended to place her in an institution.  Joyce awoke one morning to find the bed they shared was empty and the next time she saw Judith was in the institution.

At the institution following oral testing, Judith was assessed as having an IQ of only 30 and was therefore not offered any training.  Without Joyce, her childhood interpreter, she became severely alienated and developed behavioral issues but it was to be years before she was diagnosed as severely deaf explaining her communication problems.  Although the twins saw each other a few more times, eventually they lost contact.

In 1985, Joyce realised that by becoming her sisters legal guardian they could once again be close and after a struggle to locate her, Judith finally moved to California where she started going to the Creative Growth Art Center.  At first she was fairly uninterested in paint but a few months later she attended a fiber art class and suddenly a whole new world of expression opened up for Judith.  She was given complete freedom to choose her own materials and taking objects she would wrap them in carefully selected colored yarns to create diverse sculptures in many different shapes.  Many of her works also feature pairs indicating that her experience as a twin played an important part in her life.

Judith died peacefully in her sister’s arms at the age of 61, having outlived her life expectancy at birth by almost fifty years.  

Having already corresponded briefly with Joyce, I was excited to unexpectedly meet her at the World Congress in Dublin and to have the opportunity to view Outsider a film about Judith's life and work.  It was incredibly emotional to see her and Joyce together and the wonderful connection between them and wonderful to know that after the sadness of many years of separation that they were eventually reunited and shared quality time together.   You can read more of their incredible story and Judith's work here.