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Down's syndrome

Judith72Judith72 Member Posts: 6 Connected
I have a 19 year old daughter with Down's syndrome.  She also had a heart defect at birth.  I'm happy to talk if anyone wants to know about my experiences and have a friendly chat with anyone in the same.e or similar boat.


  • Ami2301Ami2301 Community Co-Production Group Posts: 7,732 Disability Gamechanger
    Hi @Judith72
    Welcome to the community! You might like to check out the discussions or even create your own in Parents and Carers. I'm sure many members of the community who are in a similar position as yourself will be more than happy to get in touch with you to offer support and share experiences. Please let us know if there is anything at all that we can help you with! :)
    Disability Gamechanger - 2019
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Welcome to the community @Judith72 :)
    Senior online community officer
  • Eyes67Eyes67 Member Posts: 6 Listener
    Hi, I'm also new to the site, so apologies if I have posted this wrong! I have a 20 year old son with Downs Syndrome, who had a deceased donor kidney transplant 3 years ago. I joined the site because we are experiencing some new unfavourable behaviour traits with my son, for which I am trying to find some answers and/or support.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Welcome to the community, @Eyes67! Do feel free to tell us some more and we'll assist where we can.
  • Judith72Judith72 Member Posts: 6 Connected
    Hi eyes67, how is your son's behaviour different?
  • Eyes67Eyes67 Member Posts: 6 Listener
    Hi, thanks for the welcome ☺️ It's a long story but I I think he may be suffering a form of PTSD. I'll try to be brief but here's why I think that ... Following chronic kidney failure from birth,  my son (Sam) finally had a transplant in Feb 2015. In May 2015 my brother in law was killed in a motorbike accident, a week later my own brother was admitted to local ICU with brain haemorrhage and he too died (on day of brother in law's funeral - yes really!) My son insisted on seeing my brother in law in the Chapel of Rest, despite my strong opposition, but other family members and professionals thought it might help him to make sense of what had happened. He seemed to bear up admirably despite my husband, myself, and our extended families going through sheer hell. In March 2016 we decided to move house, from Berkshire to Wiltshire. It wasn't a snap decision, it had been our intention prior to the deaths of our brothers, to give ourselves a better quality of life. We enrolled Sam in a wonderful special needs college locally, which he attended full time for a year and he seemed to be really happy. The second year he was selected to attend the same college's supported internship programme, where he would be prepared for the working world and which included a "working interview" at a very large department store for 5 months for 3 days a week with college for the other 2 days.  He was allocated a job coach who supported him while he was working, but who also seemed to "disappear" for about a month too. He absolutely loved working there but then suddenly it came to an end this May with the offer of a Zero Hours contract. He hasn't heard anything from them to this day and really misses being there 😕 (sorry ... Hope I haven't bored you too much by now!😄)  Throughout our time in our new area and after lots of pressure from professionals involved with Sam, we have tried to start giving him more independence and freedom, hanging out with a friend he had made at college a couple of times. In July this year, with college finished and with nothing else on the horizon I discussed with his job coach whether he could just try voluntary work in a local charity shop, which is what he did for 4 hours 2 days a week to begin with. About a month ago my husband picked up Sam's mobile (which had been ringing and we noticed Sam seemed suddenly nervous and quickly cancelled the call). Then a text came through from the Police, saying that they had received complaints from various local businesses that nuisance and sometimes threatening calls were being made from Sam's mobile. When we spoke to the police it turned out that this had been going on for the past 12 months (around as long as he had been hanging out with his new mate!) Luckily the police were brilliant when I explained that Sam had Down's and offered to come and see him to just have a chat, which I politely declined and promised I would deal with it myself. Unfortunately, as much as I tried to stay calm, my discussion with Sam resulted in him packing a rucksack and trying to leave home! All evening was spent doing lots of talking things through, lots of emotions laid bare and swapping his "open access" mobile contract to a "Parent Shield" SIM.  The following day he went to do his volunteering job, came home quite happy and we tried to put the previous day behind us. Then the manager from the charity shop phoned me to say Sam had confessed to her that he had been making silent calls to them!!! As a result she was putting him on 2 hours, instead of 4, and asked me not to send him in the following day. My husband and I were actually stunned that he had gone in and confessed without telling us and praised him for his bravery and honesty! However, from then on he started to dislike working there and we asked him to just stick it out until after our holiday in September. He reluctantly returned to the shop yesterday after our lovely family holiday. Within half an hour my husband phoned me from work to say Sam had called him in tears and that he had been asked to leave the shop and not come back. I phoned the manager there to ask what had happened and she said that prior to our holiday Sam had regularly stood in the doorway of the shop "glaring in" and "un-nerving the customers" as well as throwing his plastic bottle of water around outside the shop.  Part of trying to give him a bit of independence was letting him walk through the park at the back of our house, which leads to the charity shop amongst other shops, as part of his exercise regime which he is really into. He did this 3 or 4 times a day, whilst listening to his music. He always returned really happy and I just assumed he got to the end of his route, stopped to drink the water he always takes with him and returned home. I am so shocked by his recent behaviour, particularly as when he is with me and his dad he is the most polite and respectful young man you could ever meet. Sorry this is so very long but I felt it necessary to "paint" an accurate picture! Any feedback would be so very welcome. Thank you ☺️
  • jaycee6jaycee6 Member Posts: 53 Courageous
    Hi eyes67  I felt really sad reading your story ,My daughter with downs syndrome is 22 and still at college,,It seems your son has had to many changes to deal with,It sounds like he wasn't ready to be thrown into work experience yet.I feel they push our children into things to soon..He should still be able to attend special needs education until he is 25.I was told at my daughters college that when she left them this year in June ,that was it nothing else available,,But I spoke to another parent who said her daughter was at a different college nearer to us that had a special needs unit attached so I applied and she got in and started September and loves it, I would do some more searching and see what is available there must be something the education can offer, my daughter just loves being with friends on her level. I dread it when she gets to 25 as i feel there will be nothing.I feel 20 is far to young for him to be away from friendships at his level. It must of been hard for him,bless him,.Also if you cant get education you could see what is available for special needs in the day time,and maybe get direct payments for him.You can also ask for a assessment for him to see what they can offer,I think that is done through social services.I would get searching to see what you can find out and dont always accept what they say.The last college suggested my daughter could do work experience ,I said no she wasn't ready. ,  Also talk to any other parents you know they seem to know and tell you more,If I hadn't spoke to that parent that day my daughter would now be at home all day as the last college told us nothing in fact nobody in the professional field told us  or gave us advice on what was truly available.  All the best with your searching remember we are their voice  Be strong and start those phone calls  regards Jaycee
  • Eyes67Eyes67 Member Posts: 6 Listener
    Thank you so much Jaycee, your lovely reply made me want to cry, but in a good way, because youve touched a nerve - i have been thinking along the same lines about  looking to extend his education but keep getting pushed back by people saying "youve got to let him enter the world of adulthood and stop trying to wrap him in a disability bubble" and I just want to say "he might be 20 in his body and he WANTS to be an "adult" but I was more mature than him when I was 10! He still has childhood traits, he struggles to join in with adult conversation and he has gone through more trauma in these 20 years than most "normal" people will experience in a lifetime! (My long essay was only a tiny portion of the struggles our little family have faced during his lifetime). So thank you, Jaycee - for sharing your experience with your daughter, with me. I took Sam with me to see a GP today and she has referred him to a specialist disability community team, as she felt he might well benefit from specialist counselling. I was over the moon just to get someone to listen and understand and signpost us to some help!  I could go on for hours but was very keen just to say a personal thank you to you. I will be on a mission come Monday, don't you worry 😄 Can I keep you updated? Big hugs, Irene xx
  • jaycee6jaycee6 Member Posts: 53 Courageous
    Hi Irene Thank you for your lovely reply,Im so glad you now have a starting point with the drs....onward and upwards now,, I know what you mean about age my daughter is like a 7 year old ,but also shows interest in older things ,I think of her as half a child and half a adult,But we cant throw them in adult world until they themselves are ready.What i have noticed with my daughter she too  is quiet amongst adults, But put her with her group of special needs friends her age and they laugh,joke and dance etc,they are just so normal with each other,Its like they have a understanding between them.and except each other for who they are, thats why I think your son would be better in a special needs college .He is probably missing the friendships,Any way I musn"t waffle on,Please let me know how you get on with all this,,And remember dont be silent speak out,,you are his voice(I kept saying that to myself when I had to make phone calls etc .It helped) all the best.Big hugs .jaycee x
  • Eyes67Eyes67 Member Posts: 6 Listener
    Any thank you so much, Jaycee. Your daughter sounds delightful ☺️ I have also just joined Sam up with a local disabled group called "Friends Link", they have regular outings and get togethers. He is going swimming and lunch with them on Tuesday, so really hoping that will help improve his social life a bit for now. I will keep you posted. He really is a lovely young chap but just need to keep him motivated and happy as possible until we find him something more permanent. Love and hugs to you and your daughter, hope to keep in touch ☺️ Irene xxx
  • Judith72Judith72 Member Posts: 6 Connected
    I'm sorry you've had a rough time Eyes67, but I'm glad your son is now getting support.

    It sounded like his "friend" was influencing him, which is horrible in this day and age, plus the pressure of working.  My daughter is 19 and has another 2 years at college to go, but even after that, I'm not sure how she will cope with work.

    Take care.
  • jaycee6jaycee6 Member Posts: 53 Courageous
    hi Irene.Well done on your swift work already. Wishing your lovely Sam a Great day on Tuesday  please let me know how he gets on,,And I must admit you are right the most important thing is that they are happy.Hugs to you both ,Kind regards Jaycee xx
  • jaycee6jaycee6 Member Posts: 53 Courageous
    H i Judith72  ,Remember  by law your daughter is entitled to stay in education untill she is 25 Dont put her in work unless your feel she is ready.Kind regards Jaycee
  • Eyes67Eyes67 Member Posts: 6 Listener
    Hi Judith, thanks you for your lovely words of support. Finally heard from job coach today, who's been on sick leave for several weeks. Explained what's been going on and the fact I was considering trying to get my son back into a local college with special needs resource. Big hurdle - his EHCP has now expired and she said "it won't happen, the Council won't throw any more funding his way now". 😕 She's coming to see us on Wednesday to "catch up with him" and do some job searching. Where's the next brick wall ?!!! 🤨 Best wishes everyone, thanks for letting me rant! Xxx
  • jaycee6jaycee6 Member Posts: 53 Courageous
    Hi Irene ,Do not give up yet .I suggest you go onto to the sendias  Wiltshire Webb site,They help parents of children up to 25 and should be able to give you advice as to where you stand. Dont believe everything you are told by the job coach,Armour yourself and get as much info as possible,also government Webb site has info on EHCP  up to 25 .might be worth a read,All the best Jaycee,x
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Good luck people 
    I am a fibro warrior !💜♏️
  • Judith72Judith72 Member Posts: 6 Connected
    When I looked into colleges for my daughter, I had to go through Adult Services at the County Council and also liaised with a college 20 miles away from home, which she attends and is transported by taxi, courtesy of the council.

    It might be worth contacting your local County Council and getting some advice from them and not listen to this Job Coach.

    Unfortunately Councils don't advertise this information, as they don't want to pay out, but they are obliged to.

    Good luck Irene.
  • Judith72Judith72 Member Posts: 6 Connected
    Thank you Jaycee, I'm keeping my daughter in education till the end of her course, another 2 years after this one, then hoping she can either get a job at a cafe close to home that only employs special needs adults, or something similar.
  • Eyes67Eyes67 Member Posts: 6 Listener
    Thank you all lovely ladies, you have given me lots of food for thought and I feel much more positive after your messages above. I have also been looking into the DSA WorkFit  scheme (anyone had any experience of it?) Just been reading a wonderful article about it in the most recent DSA Journal. Will also look at the Council website and the SENCO bit to see if I can find anything inspiring 😄 Feel a bit like I'm treading water and trying not to drown 😕 Will keep you all posted! Big hugs, irene xx
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