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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
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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.
    • Pop Up Pirate
    • By Pop Up Pirate 4th May 17, 9:43 AM
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    Pop Up Pirate
    • #8
    • 4th May 17, 9:43 AM
    • #8
    • 4th May 17, 9:43 AM
    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.
    Originally posted by kingfisherblue
    But noone can predict the future.
    A doctor will give a run down of scenarios as preparation. If those scenarios don't come to fruition, great. If they do, you have been prepared.
    I know that if a doctor had told me the 'likely' state of affairs and my child ended up being one of the unlucky ones and I wasn't warned, I would be angry.

    Noone can be angry that their child WASN'T as bad as a doctor warned about.
    • kingfisherblue
    • By kingfisherblue 4th May 17, 1:30 PM
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    kingfisherblue
    • #9
    • 4th May 17, 1:30 PM
    • #9
    • 4th May 17, 1:30 PM
    But noone can predict the future.
    A doctor will give a run down of scenarios as preparation. If those scenarios don't come to fruition, great. If they do, you have been prepared.
    I know that if a doctor had told me the 'likely' state of affairs and my child ended up being one of the unlucky ones and I wasn't warned, I would be angry.

    Noone can be angry that their child WASN'T as bad as a doctor warned about.
    Originally posted by Pop Up Pirate
    This is the problem - the doctors don't give a run down of scenarios. They only, in my experience, give worst case scenarios. I don't know any child with DS who cannot walk at all, and all children are required by law to receive an education, so to say that children with DS might never attend school is wrong - although of course there may be a few parents who choose to home educate.

    All I am suggesting is that a balanced view is given. 'Children with DS might not walk as well as other people, and are likely to walk much later than other children, but they do usually learn to walk' is far more honest and accurate than 'your child might never walk' - but the first sentence does not raise false hopes, it just gives accurate information. Doctors saying 'your child may never be able to attend school' is not accurate, whereas 'you child might have to attend a special school', or 'your child will probably attend special school' does not raise false hope either, but gives an honest view of the future.

    It is possible to warn parents of possibilities without making it sound as though there is no hope whatsoever.
    • Pop Up Pirate
    • By Pop Up Pirate 5th May 17, 9:43 AM
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    Pop Up Pirate
    Yes, worst case scenarios is what I was talking about.

    You get them given to you. So? You go through life as best you can and encourage, help, nurture your child etc etc.

    How can you, or anyone else for that matter, be annoyed that the worst case scenarios DIDN'T happen?

    Doctors telling me the worst case scenario doesn't make me sit here and worry to death about it. I just get on with life as normal and try to prove doctors wrong and am happy the worst case scenarios never come to fruition.

    More things to worry about than this kind of thing.

    If doctors did it your suggested way, how do you think the parents would feel who DO get the worst case scenarios?
    I would be livid. I would be "Why did you never tell me this?"

    They give worst case scenarios becasue through time and experience this is the best way to prepare people for what MIGHT happen.
    If is doesn't happen......Bonus!
    Last edited by Pop Up Pirate; 05-05-2017 at 9:45 AM.
    • GlasweJen
    • By GlasweJen 5th May 17, 10:12 AM
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    GlasweJen
    People never think they'll be the unlucky one. My job involves counselling people through a certain course of treatment for an eye disorder. Without treatment 100% of patients will be registered blind within a year of diagnosis, most are registered much earlier than this. Most people opt for treatment but those who don't all hope to be the one who gets to the year before being registered and are bitterly disappointed when 3 months later they are signing the form for registration.

    Treatment is to stop the vision loss progressing, 5 -10% of patients gain some sight back, less than 1% can have complications where they rapidly lose vision and 10% the drug won't work but it won't accelerate the progression of the disease. Of course everyone goes into treatment wants to get better, they want vision to improve and to get driving again. Most will go through treatment and their vision won't change (which is the whole point, the treatment is to preserve vision) but will tell you at check ups that they are so disappointed and the treatment isn't as good as they were told even if I was in the room when they signed consent and heard the doctor say "this is to save the sight you have, it's unlikely to improve your vision but that can happen in very rare cases".

    I could only imagine what reaction a parent would have if their child gets to 5 or 10 or 15 and still isn't walking when the doctor just said they'd be slow to walk and it would happen eventually.
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    • mumps
    • By mumps 5th May 17, 10:54 AM
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    mumps
    I think with a new baby you aren't sure of anything. I know someone who was overjoyed when there seemingly healthy baby was born, as the months passed and baby didn't smile, didn't roll over, didn't babble, found it difficult to wear it started to become obvious that things weren't quite right. As it wasn't something with a "label" they were given little information about the future because no one knew. I'm not saying that is ideal but does someone need to have a full, and fairly negative worst case scenario, presented immediately? The parents are obviously going to be told the baby has Downs, can anyone actually predict at that point that this baby is going to be one who gets a job, gets married, does OK at school or they are the one who won't learn to walk, talk or be toilet trained?

    We all need time to get to know our children, to find out if they are going to need a place at a special school or aspire to Oxford, I don't think we would welcome the Consultant coming into the room and saying they might end up with schizophrenia, on drugs or whatever.

    The scenario can fold gently, yes the baby has Downs, maybe have contacts with support groups, parents with older children who can show how you cope with the best and worst case scenarios.

    I do think it is unfortunate that the doctors are so negative. Maybe linked to the "good" news that they can detect Downs ever earlier in pregnancy and the baby can be cured, oh no the baby can be aborted which is presented as a virtual equivalent to cure.

    OP I hope your son continues to do well.
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