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    • kingfisherblue
    • By kingfisherblue 15th Apr 17, 7:49 PM
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    kingfisherblue
    Down's Syndrome
    • #1
    • 15th Apr 17, 7:49 PM
    Down's Syndrome 15th Apr 17 at 7:49 PM
    My son was born nineteen years ago this week, with Down's Syndrome and several congenital abnormalities of the digestive system. I'm extremely proud of him and his achievements, as most parents would be.

    Today I was talking with a man whose son has Down's Syndrome. The little one is nine months old. The man was asking me about my son and his development. He and his wife have been told the same things that I was told all those years ago - he might never walk, he might never talk, he might never learn to read or write, he might never toilet train, etc. The chap was quite saddened by the negativity of all the things his son may never do.

    Now, I have met a number of children and adults with DS over the years. I don't know any that cannot talk, although they usually lack clarity of speech. My son is the only person that I know with DS who uses a wheelchair (due to hypermobile joints and breathing difficulties). Most children learn to read and write, albeit limited compared to other children. My son was late to toilet train due to a bowel condition at birth, but he finally made it - most children with DS toilet train late, but they manage eventually.

    I just find it really sad that doctors always present the worst case scenario, and never seem to tell parents that their children are likely to achieve, but it will take longer - much longer in some cases. Kids with DS still achieve most of the basics though.
Page 1
    • Penitent
    • By Penitent 15th Apr 17, 8:24 PM
    • 670 Posts
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    Penitent
    • #2
    • 15th Apr 17, 8:24 PM
    • #2
    • 15th Apr 17, 8:24 PM
    I'd guess they're working on the theory that it's better to give the worst case scenario so they can prepare themselves and have them be pleasantly surprised if their child exceeds expectations, thaen to tell them their kid will be fine only for them to not do as well as hoped and be unprepared to cope with it.
    • Confuseddot
    • By Confuseddot 15th Apr 17, 10:32 PM
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    Confuseddot
    • #3
    • 15th Apr 17, 10:32 PM
    • #3
    • 15th Apr 17, 10:32 PM
    Did you see the documentary by Sally Philips on DS it was very interesting and sad I thought.
    It appears that doctors and nurses are given no formal training on down syndrome and can often be more negative that needed.
    Being involved with DS Scotland like you i know few that can't do the things you described. The ones who struggle more tend to have other health problems.
    I know of a few parents who have been going into local hospitals giving talks etc to doctors,midwife's and nurses.

    Are you on fb? Check out Ollie and Cameron identical twins with down syndrome.
    Play nice Just because I am paranoid doesn't mean they are not out to get me.
    • kingfisherblue
    • By kingfisherblue 16th Apr 17, 9:02 AM
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    kingfisherblue
    • #4
    • 16th Apr 17, 9:02 AM
    • #4
    • 16th Apr 17, 9:02 AM
    I'd guess they're working on the theory that it's better to give the worst case scenario so they can prepare themselves and have them be pleasantly surprised if their child exceeds expectations, thaen to tell them their kid will be fine only for them to not do as well as hoped and be unprepared to cope with it.
    Originally posted by Penitent
    The vast majority of children with DS are not 'worst case scenario' though. It's hard enough to hear that your child has a lifelong disability. It makes it so much more difficult when parents are given virtually no hope. Our children are described in such a way that we feel that they have no future at all, and that they will never achieve anything. Surely it would be better to balance it out? I think that parents should be told that their child will face difficulties, but most children with DS will walk and talk, although usually much later than other children, and not to the same standard as most.

    The only positive that it trotted out by doctors (and everyone else) is that children with DS are very loving - well, so are my other two children. Progress has been made over the last twenty to thirty years, but it seems that doctors still give only the most negative information that they can, and these days, it isn't true for the vast majority of children born with DS. I was told that my son might not ever attend school. Since all children are required by law to have an education, and most attend a school of some sort, this was blatantly incorrect. My son attended mainstream primary with support (more for medical problems than his learning disability), and transferred to a special school at age 11.

    I just wish that parents today were given a more balanced view of the future, instead of bucketloands of negativity.
    • IAmWales
    • By IAmWales 16th Apr 17, 1:09 PM
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    IAmWales
    • #5
    • 16th Apr 17, 1:09 PM
    • #5
    • 16th Apr 17, 1:09 PM
    There can be fault with both medics and parents. There are plenty of parents who will state the worse case scenario when claiming benefits, using it to claim higher rates of DLA and Carers Allowance, and failing to report when their child makes progress.

    Balance is needed all round. It can be useful for parents to be given information in writing, as in a meeting it can be all too easy to cling to certain bits of information and miss other bits that may give a more realistic view.

    (To be clear I'm not suggesting the above applies to kingfisherblue. You clearly do all you can to help your child progress, and I wish you and your family well for the future.)
    • kingfisherblue
    • By kingfisherblue 16th Apr 17, 4:29 PM
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    kingfisherblue
    • #6
    • 16th Apr 17, 4:29 PM
    • #6
    • 16th Apr 17, 4:29 PM
    I agree that there are many parents who exaggerate in order to claim benefits (or a higher rate) - something which irritates me greatly! Written information, if balanced, would be helpful. Unfortunately in my case, I don't think it would have been at all balanced because of the attitude of the consultant that I was under at the time - he told me that I was stupid not to have had an amniocentesis because I could have aborted my child. He was very clear about the limitations of children with DS. I was fortunate enough to have a midwife who was so shocked by the way in which he spoke to me that she arranged for my care to be transferred to another consultant the same day.

    I was just saddened to find that doctors are still giving worst case scenarios, despite the progress that has been made in other areas of society over the last twenty years.
    • mcculloch29
    • By mcculloch29 20th Apr 17, 1:13 PM
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    mcculloch29
    • #7
    • 20th Apr 17, 1:13 PM
    • #7
    • 20th Apr 17, 1:13 PM
    I work as an adult education tutor and have had quite a few learners with Down Syndrome through my hands over the years. They varied widely in ability, just as you would expect.
    Some learned to read and write - one wrote a book about her life. Others were less able but all enjoyed their learning.

    The problem with a lot of medical experts is that they only ever see problems themselves in the child or young adult. Their eyes and minds are trained to look for illness and impairment.

    They never see the person with Down's acting on stage, playing dominoes alongside non-disabled people, working as a football coach, or using a computer confidently.
    I've seen all these things.
    Erma Bombeck, American writer: "If I had my life to live over again... I would have burned the pink candle, sculptured like a rose, that melted in storage." Don't keep things 'for best' - that day never comes. Use them and enjoy them now.
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