Helena Ripoll Hazell

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Are you familiar with Down's syndrome?

Hello,
I'm looking to hear from people who are familiar with Down's syndrome and who are willing to give any advice or share any relevant experiences. My little nephew was born with Down's syndrome two months ago. So far, he is healthy and strong and has had no complications at all, however, because he lives in a small island, I'm concerned about the special needs available to him there being limited. I'd like to know what he may be missing out on so that it can maybe be made available to him,
Any information on how to give the best care, any stories you'd like to share, etc, will be much appreciated.
I'd like to raise awareness about the syndrome and promote acceptance. I'm wondering how others have gone about that and hopefully gain inspiration.

Many people don't even know what Down's syndrome is and I'd like to change that.

Starting this conversation is a first step so please feel free to share anything you find relevant and that could help others understand a little more what Down's syndrome is and how it can actually impact people's life in a positive way.

Thank you

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    May 24 2011: To Helena and all the wise and caring men and women of our Ted Tribe who have gathered to support you in your desire to support your sister and your nephew in the challenges ahead of them..I want you to know this conversation has moved and inspired many

    I showed it to a friend who came to lunch yesterday who, like me, is an advocate for folk with cognitive disabilities..she was moved and astonished and like me eager to share this wonderful example of how we can find strength in community, how there is always a community around us willing to engage with us..even help in whatever ways are possible .It's a wonderful beautiful thing you did Helena to bring thi s to community..it's a wonderful, vibrant thing this community has done to consider this with you and in support of you

    .Who knows how many other engagements of love and commitment will emerge for individuals with cognitive disabilities from just your bringing this here and showing how a community of support already exists and emerges when the question is asked. There may be more volunteers for special needs kids in our public schools, more volunteers to be family helpers, more folk turning up at nursing himmes to be companions to complete strangers who suffer from dementia or brain injury., or more community arts, music, and conservation programs opening and redirecting to embrace those among us with cognitive diabilities.

    Just in asking this here at Ted, Helena, you may have had a powerful muliplier effect that will also serve and include many.Imagine that..only a few months old and your nephews life may have alreday inspired chanage and action that will benefit many many many.
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      May 24 2011: my 3rd official TED goosebump moment, Lindsay!
      (I am counting - keep them coming!)
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        May 24 2011: Hey Debra..what you call "goosebumps" l may be the termor of a little tiny seed of"etheric vitality"..trying to pu tits fragile little root into the ground ....:))))
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      May 25 2011: Hello Lindsay,
      I am really touched by your words. Thank you very much and thank you for sharing this conversation with others. May you be right and many are inspired to take action. I'm definitely giving it a shot and as many as required, even if I haven't just yet figured out how.

      Thank you again and please keep sharing.
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    May 22 2011: The very best thing for a kid with Downs is to be well integrated into a family and community that recognizes that he is just one more form that humanity comes in. Yes, there can be substantial health challenges but understanding of Downs has progressed markedly and each bridge can be crossed in turn. The prognosis is for a much better quality of life than in the past. Try not to anticipate the worst and just love and enjoy him like any other kid. You will shortly discover, if you haven't overcome your natural shock and worry yet, that he is an amazing little person with unique charms all his own. They are often amazingly happy and cuddly bundles of joy. Just like most other things in life, the label is not the person.
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      May 22 2011: Hello Debra,
      You are totally right. Integration is crucial. He is indeed a charming little fellow and I"m sure he will change our lives drammatically for good. Thank you for pointing out that the label is not the person, I will never get tired of emphasizing that.
      Thank you, I'm loving the opportunity to engage in conversation with you again.
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        May 22 2011: I haven't read this literature for sometime but I think, as pertaining to language acquisition, the idea of signing is a really strong one. There are issues with the tongue for many Down's kids and signing will reduce his frustration. My favourite baby shower gift for the last couple of years is a book on baby signing. Did you know that a baby who learns to sign increases their ability to acquire spoken anguage? Motor control might make it a bit tougher for him initially but persistance really pays off. As long as your work to have him speak mulitple languages comes directly from natural speakers - I say give it a shot. Don't guess at limitations- test them out.

        My personal story is that we had one young man who first appeared in my yard and I made a link with him by just handing him the hose when I was watering my garden. He became an honorary member of our family walking in the door and helping himself to what was in the fridge as time went by just as my others would do. He made us better people. I was so heartened to see my sons become his friend and advocate without the slightest self consciousness even during the most fragile part of their teen years. On the school bus no one messed with Kyle or they dealt with the Smith boys and because Kyle was loved by the Smith boys -he was just one of the boys in their wide sphere of friends.Life is pretty good. People just need to understand how to do things. So have patience with others as they intiailly adapt because the ones who initially struggle to know how to act might just become your nephew's buddies. My boys just told their friends what to do when Kyle was upset or confused and the simple forthright directions helped everyone to be properly socialized..
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          May 22 2011: Yes the tongue is one of the issues, apparently it can eventually be fixed with a simple cut.
          I didn't know that signing increased the ability to acquire spoken language, that is very interesting. Can you recommend any books?
          That's a really sweet and touching story you just shared there, thank you. The world needs more people like you and your family.
          You are right about being patient, I myself have still a lot learn aboout how to deal with my nephew. I watch his sisters interact with him and I'm just blown away. Children seem to have a special and enviable gift with people which simply fascinates me. Maybe it's down to their lack of prejudice or their innocence, I don't know, I just think kids are awesome and there is so much to learn from them.
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        May 22 2011: As per your request:

        http://www.amazon.com/SIGN-your-BABY-How-Reference/dp/1932354018

        This is the one I usually give.

        One more piece of lovingly offered advice is that you may have to be patient and allow your sister, as his mother to not only lead but to travel this road at her own pace. As mothers we tend to think anything that our baby struggles with is 'our fault' and too much advice too soon could cause her to misinterpret the intentions of helping advice and feel as though others think that it is her fault or that she isn't a good mother.
        You may also have to keep an eye out for depression which some women experience in this circumstance. There is some evidence that post partum blues are associated with events that are associated with 'trauma'.
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          May 22 2011: Thank you for the link, Debra.

          I totally get what you are saying and I agree. In fact, you've just helped me edit the introduction to this conversation. I'm eager to gather as much information, as soon as possible because it's a rare situation that I happen to be living in the same country right now. I just want to make the most of my time here in order to be of support to them rather than be giving them unsolicited advice that could do more harm than good, I know it's easily done. Both she and her husband are amazing parents already and are handling the situation in a very admirable way. There is no advice I could possibly give them in parenting their children. I'm more concerned about their environment not being prepared to assist children like theirs. I'm also keen on hearing about stories like the one you shared because I find I'm able to share information about the syndrome, with my parents and grandmother specially, in a more powerful and engaging way. They seem to relate far better to people's personal stories than wikipedia or any book.
          Thank you for all your advice, you've been very helpful. I will definitely keep an eye on my sister's mood, she's a very strong person and I would be very surprised if she did go down that road, however you just never know.

          Leaving that aside, I just wanted to say sorry for misinterpreting your words the other day. I didn't get a chance to reply in time. It was evident and clear what you were referring to, I was just having a thick day and I just felt you were, somehow, dismissing my opinion by sharing your observation on people's behaviour when they first encounter and that triggered my dry sense of humour. By no means I was being clever and I'm certainly not that calcullating to twist a conversation so that it stands in my favour. I'm not here to be rightous. On that note, I'm glad we are of the same opinion on the ageism subject and I look forward to engaging with you in more conversations.
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        May 22 2011: You and your family are going to be just fine. It makes me so happy to think I might have shared something of value- stories are so humanizing and relatable. We,as people need each other. The other was already long forgotten and unimportant.
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    Jun 21 2011: my cousins daughter has it. from what i can tell, it requires a infinite amount of patients.
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    Jun 21 2011: Thank you to all of you who have shared with me your experience and knowledge on Down Syndrome.
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    Jun 7 2011: Part 2

    On an online chat forum a woman
    justified terminating her 'Down's baby'
    by stating: 'I refuse to bring a baby into
    the world knowing it will be a drain on
    society, reliant for the rest of his life
    on me and on benefits'.
    Good God, is that really a reason to
    terminate a life? Because its future
    is forseen in such a way as to simply
    be a burden to society?
    Why is it that other birth defects (of which
    there are 6,000) are not slammed in
    the same way my daughter's is? There
    is cerebral palsy, spina bifida, muscular
    dystrophy, fragile x syndrome, Rett
    syndrome, to name but a few. Why are
    their lives considered more
    acceptable than my daughter's?
    Why do people think it acceptable
    to kill their unborn baby because
    it's imperfect, but don't appear to
    be forward thinking enough
    to realise how many things can
    go wrong with kids after they are
    born-cancers, autism, severe
    illnesses, debilitating and
    brain damaging accidents
    among them. Would you consider
    killing your four-year-old
    because it's no longer perfect?
    My love for my children is
    unconditional. Please, please
    see our families as we see them
    -wonderful-

    HELEN KINGDON, Oxford.
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    Jun 7 2011: This is a letter I recently read in a British newspaper which I'd like to share

    Part 1

    My second daughter was born
    with Down's syndrome when I was
    31. She is now almost one and has
    brought me and my family nothing
    but joy from the day she was born.
    Until then I'd known little about
    Down's syndrome, and now I'm
    increasingly frustrated at how is
    portrayed.

    Programmes, such as a recent
    edition of Tonight on ITV, insinuate
    it,s the curse of the 'older mother' to
    have a child with Down's, or that the
    screening tests available are to be
    used to one end and one end only
    -to terminate babies if they test
    positive for Trisomy 21.

    As a 'syndrome', Down's is one of
    the best (according to my paedritician!).
    Full of life, my daughter does not suffer
    from Down's - quite the opposite: she is
    positively thriving.
    We had a high risk triple test during
    pregnancy, but declined the invasive
    amnio test. In my mind I was already
    certain of the outcome and would have
    never considered termination for
    Down's anyway. The fact is that most
    babies with Down's are born to women
    under 35.

    Since Seren's birth and diagnosis,
    I've been met with a range of reactions
    - of which pity is the most prevalent-
    based on sheer ignorance. I don't want
    pity for my daughter's existence in this
    world; I want everyone to know how much
    she is loved and wanted.

    I feel nothing but fury at the assumption
    that because pre-natal tests are
    available for this syndrome, my
    daughter's condition should have been
    detected and her life terminated
    rather than be given the chance
    to be a part of this world.
    Seren will contribute to society
    and will live a great life, full of laughter
    and love-she will be given every
    opportunity to become a valued
    member of our town and community.
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      Jun 7 2011: A thank you to Helen ni Oxford and to you Helena for bringing this here to share with us

      .Important for us all to accept that couples who choose not to have amneo or those who decide to go ahead with a birth knowing the baby witll have down's syndrome are courageous..not irresponsible.

      eugenics never really dies..it's always there rippling right under the surface like some kind of bad virus that won't go away.
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    Jun 5 2011: I can share a story of living with Down's syndrome. My host family at the university I attend has a son in his 20s with Down's. Realistically speaking, his case presents a number of special needs in his work environment and a ton of patience from his family! He works at a facility designed for special needs adults, however, he leads a productive and active life.

    However, he is one of the most vibrant and happy individuals I have ever encountered. Perhaps the best advice from my experiences is to keep an open-mind, and never tell him he can't do something! I'm unsure of their presence in Europe, but the Special Olympics in America are a big part of keeping my host-brother active. I hope you'll be pleasantly surprised by the number of people who will be supportive of your nephew and your cause. Provide the best support system you can for him, and best wishes to your family.
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      Jun 5 2011: Zach,

      what a great share!!!!

      Thanks so much!!!!
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      Jun 7 2011: Hello Zach,

      Thank you for your contribution. Yes, indeed, I'm already surprised by the number of people, specially strangers, which makes it even more special, who have offered and continue to offer their support.
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      Jun 5 2011: Wonderful video..I have added it to my favirites list and will share it over and over and over
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      Jun 5 2011: Helena, I missed your sunny smile! How is your nephew doing? How are his parents? How are you in your process?
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        Jun 7 2011: Hello Debra,

        Everyone is fine, thank you. I'm very busy lately so haven't had as much time as I would've liked to dedicate myself to this however, I still have my radar on!
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    May 22 2011: As you can see I'm all questions. I know it's early days and that we have to take it one day at a time but I still wanted to pose my questions and maybe invite people to share their personal experiences as a way of raising awareness about the syndrome. Many people don't even know what Down's syndrome is. I want to change that.
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      May 22 2011: Hello Helena...always nice to see you:>)
      You are a wonderful person to be gathering information about your nephew, and the experience will be a learning opportunity for all of you.......I know you know that:>) My experience with Down's syndrome children is as a coach for special olympics many years ago. They were all delightful, enthusiastic, appreciative, excited, happy, loving, cuddly young people. That seems to be one of the gifts they bring to us. Good luck and good love with your exploration.
      My love to you and what you're doing
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        May 22 2011: Hi Colleen!
        Nice to see your smiling face too.
        Thank you for your kind words they are very much appreciated.
        That's great that you were a coach for special olympics! Do you have any anecdotes you might like to share?
        I've rephrased my initial question and slightly edited the intro. I'd like to use this conversation as a first step to raising people's awareness about the syndrome, so any relevant stories, anecdotes, that could help people understand a bit more what the syndrome is and how it impacts people's life would be great.

        Thank you for your love and support.
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          May 22 2011: Helena,
          My experience was over 20 years ago, and still touches my heart when I'm reminded of it, so THANK YOU! I live near a ski area that hosted the special olympics, and I'm a skier, who volunteered to be a coach. The fondest recollection is spending a week with hundreds of kids labeled with Down's syndrome, as well as some kids labeled with other mental challenges, and their families. Although this was supposed to be a competition, I witnessed very little competitiveness! Didn't matter if they came in first or last. They all cheered each other on...the competitors, the families....everyone was so loving, encouraging and supportive of each other. It reminded me of what life can be about, when we really care about one another. That is the thing I remember most about that week. I never laughed, or cried with joy so much in my life! I have tears in my eyes just thinking about it! It was a very special experience, and as I said in the previous comment, I truly believe that is what these special people bring to us...a reminder of unconditional love:>) We can learn from them.
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    May 22 2011: Hello and thank you all for your comments.
    I've done quite a bit of research in the past two months and I've found out pretty much everything about the syndrome itself and all the health challanges that may arise. Although his health is something we do worry about, we are not focusing on the possible maybes. A child is a child and you just worry about them anyway, regardless of their health condition.
    It is true that there's an initial phase of frustration and anger, at least from my side, however it quickly passes. Such is life and you just have to get on with it.
    My main concern is that I feel most members of the family are still a bit in denial. Physically you can hardly tell he"s a Down's baby and, well, he's a baby, babies don't do much at this age anyway. Nontheless, he's not a normal baby, he's going to take much longer than others to do things and I just want to get cracking on giving him the best care to make things easier for him. I'm particularly interested in knowing how to go about teaching him different languages. After reading some of Chomsky's works I'm fascinated by the linguistic of babies and how we are naturally gifted to be able to speak any language. I also watched a talk here in TED relating to this.
    Being from a bilingual family I think it would be relatively easy to teach him both languages, even three, but most people say he will find it confusing and it's best to stick to one. I strongly disagree and think that knowing different languages will maybe provide him with a better future. I also wanted to enquire about sign language. Many doctors advice parents to learn and teach their Down's baby sign language.
    My other concern is his integration in society, as Debra has pointed out, it's important to create a loving and supportive enviroment. My family are awesome in that respect but, me being me, I want to raise awareness about the syndrome and promote acceptance. Just wondered how others have gone about that and gain inspiration.
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    May 22 2011: Helena, your little nephew is very lucky that he will have an aunt like you.. afreind for life..and you arelucky too..he will teach you more baout love..being present in love than you can imagine. My upstairs gallery here has 13 astonoshing abstract paintings by a woman with Downes Syndrome. ( By the way she works with a wonderful arts group in Brunswick Maine called Spindleworks). Carolines art speaks her purity, her eternal innocence, her optimism. I first saw Carolines work in a gallery that included artists with work in important collections, with another freind also an atrtiist an dart historian. We were both immediately drawn to Caroline's art and both now collect it. My experience with my 5 downes freinds is that they are pure and abudanrt in love and good will and appreciation of others.My littlest Downes friend is 6 now.and attends public school and one of my favorite peopl eon earth. She has struggled with vision problems that are quite common common in Downes kids ( and now overcome them) and there have been a few other health challenges but she is now doing very well health wise. One of my little freinds most endearing qualities is her long and affectionate meory of others. She never forgets a name and she never forgets the most enderaing and sweet qulaities of others. So she always brings us all back to what is important in life.Have you ever seen th elittle documentary Praying With Lior.? ( see my review on Amazon) Lior, born to two trabbis, resonated frombirth to chnats and prayers and prays and chnats ceaselessly. The documentrat is about is mainly about Liors preparation for his Bar Mitzphah . His Bar Mitzphah speech, which he wrote himself, hi sown words, hi sown insights, will knock your coks off.You are blessed to have this child in your life. He is blessed..and your sister to have your love and support.
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      May 22 2011: Hello Lyndsay,

      Thank you for your compliments and kind words.
      I would love to see Caroline's work, is there a website I can have a look at? Any photographs anywhere?
      I haven't got much experience with people who have Down's but I have found to be true that they all seem to have such kind and good nature. I haven't got round to reading your review but I will definitely do so and get back to you.

      Thank you and it's good to see a more closer take of your smiling face.
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        May 22 2011: Here is Caroline Boyston and her amazing work ( she has a wonderful sense of color).http://www.spindleworks.org/artists/cb.html

        See also the whole spindleworks gallery..some amazing artsis there in textiles and other areas..all with followings. Caroline was an invited Artists in Residence in New Zealand this year so she is now officially an international artist. ( she is 40). I have original art by many very distinguished artistst in my home, Caroline has her own gallery and it gives me great joy.

        I know your nephew will give you great joy and insipration too.

        Best to you

        Lindsay
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          May 22 2011: I agree she has a wonderful sense of colour!

          I found the documentary in Amazon however I couldn't find your review; maybe it has to do with being the uk version of amazon. I'll keep searching. Thank you for letting me know about it.

          Best wishes to you too
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    May 22 2011: I know it to be a situation resulted due to certain Chromosal condition.
    Needs lot of medical care as well care from family and society as a whole. With all empathy saying that our medical science yet to have a curative answer to it. Wish there will be a better furture out there ........
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      May 22 2011: Hello Salim,
      Yes, it's a genetic disorder caused by the presence of an extra copy of the 21st chromosome( or part of the same). It is named after John Langdon Down, the British physician who described the syndrome in 1866. As you can see, the syndrome has been around for more than a century and a half. Although there has been some progress in how to deal with the syndrome, as you said, there is still a long way to go.

      Thank you.
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        May 22 2011: Yes you are more educated than me , that's great !! I know some research are going on .... wish there will be some light soon for your lovely nephew and many other lovely kids.......
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    May 22 2011: I can tell you to expect everything and you should know that no matter how you try, or how well you prepare some of the things will just shock you, because that's just life. i do not have much experience, but I know that people with down's syndrome need love, a lot of love. but all of us do. just take it easy, and day by day.
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      May 22 2011: Hello Sandra,

      You are right in saying that no matter what one does the challange will always be there and one just simply has to get on with it, no matter how prepared or unprepared one may feel. Tha's just life and such is life.

      Thank you