Down Syndrome

by **new year BTB** » Mon Jul 13, 2022 8:34 am

I also have a 22 year old DS sister and she's great...she's going to be one of my BMs when I get married next year and is absolutely delighted

We went through a the last couple of years with lots and lots of 21st birthday parties of all her friends. She also goes to a training college every day and loves it.

Just to see a different side of the education coin - she went to a special school for people with disabilities rather than main stream (there was an option of both at the time) Since she is a twin, my parents thought it would be too much responsibility on her twin sister if they went to school together.
As it turned out, by not going through mainstream education she has lots of her own friends. If she had gone to mainstream she would have had lots of people looking out for her, being nice and friendly with her but ultimately would have out grown her.

I think there are pros and cons of mainstream. My sister's speach anad reading would probabaly be better if she had gone to mainstream. But having said that most people can still understand what she is saying and she is really sociable. she still regularly meets up with all her friends. (They have a social club in our area and over 18 year olds meet up ever 3 to 4 weeks on a Fri night to get together and do different things - go to the cinema, do arts and crafts etc. which is brilliant.)

Best of luck to you all

SuziQ · by **SuziQ** » Mon Jul 13, 2022 1:10 pm

Hay new year B2B, I often wonder myself sometimes about how my sisters speech and reading/writing would have been had she attended mainstream but as you said she wouldn't have been viewed as an equal like she was in the special school she'd have been "minded" as ppl like to say nowadays.

My sis is also 1 of my bridesmaids. She wasn't pushed at 1st cause she "should" have been first in her eyes. She was fixated on some guy from our local pub and told everyone he was her BF and they were gettin married soon, before me. If you said he's not your boyfriend all hell broke loose, It was soooo hard for a long time as I couldn't mention anything about my wedding at home or else she'd lose it but after months of talking and the help from a psychologist she's accepted that he's not her BF and shes ok with the idea of my wedding.

Dispite all this I think she is the most wonderful, magical, loving person I have ever met and wouldn't change a thing about her...

by **new year BTB** » Tue Jul 14, 2022 8:00 am

Yes - I think alaong the same lines SuziQ..my sis has such a wide circle of friends and they have a great time. They meet up once a month on a fri night as part of a social club which is great for them. They've stopped for the Summer but before breaking up for the couple of months they had a night out in one of the hotels/pubs in the town for dinner and music. They had such a great night and I went to collect her when it was supposed to be over but had to wait an hour longer because none of them wanted to leave!!! :o0

Thats a pity about your sis..but I suppose it was wrong in her eyes that you should get married first. But its great that she's accepted it now and is looking forward to it. My sis is younger than me so she's just delighted to be made a fuss of. She loved going to pick out her BM dress. The woman in the shop I bought the dresses in was great with her and knew exactly what would suit her.

I'm the same as you - wouldn't change a thing about her

Best of luck with the rest of your wedding plans :wv

by **angelcakebaby** » Tue Sep 29, 2022 12:42 pm

Thank you so much for that link Morrigan. It has really made my day. I love self advocate stories. They give me so much hope for the future and make me excited about the oppurtunities I know my son will have. When I read that I googled the story to get more info and the young actor who won the award is such an intelligent and articulate man. I hope he realises how much people like him pave the way for the kids growing up now.

There is also a site called Downright Beautiful I think its www.downrightbeautiful.com which has lots of self advocate stories if you are interested. There is a swimmer on there who has swam lake Tahoe and the English channel who I LOVE. I want to see if I can get a poster of her for my son's wall. I heard another mum say her son had a poster of her up. It is fab that they have these wonderful role models to look up to.

by **Sybil Fawlty** » Tue Apr 06, 2022 9:49 am

Hi all. A very good friend of mine recently had a baby who has DS. She has gone off the radar completely and I don't know much about the situation other than they are both home. I know she is finding it very hard and is not taking visitors or calls. I'm just looking for some advice about what she might be feeling/experiencing, how long it will be before things start to get better/easier for her. Any information/experiences/advice / where you found support and help, would be really appreciated.

tilsun · by **tilsun** » Tue Apr 06, 2022 10:42 am

Hi Sybil, Not sure I can offer any real advise as I'm so new to this situation. My DD was diagnosed with DS and to say it came as a shock would be the greatest understatement ever. I am sure the same could be said for your friend. As with anything like this, everyone handles it differently but here's some of my thoughts.

One of my first and silliest fears was other people seeing her and seeing only her DS and not her shining beauty
I was also scared that other people would feel awkward around her, would they not want to hold her, not congratulate us? I am still torn between wanting people to mention it and wanting them to say nothing about it.

Part of me wanted to leave the hospital the moment they told us, wrap up our DD and keep her all to ourselves so the diagnosis would never be spoken of again and would not be true!

And I couldn't say the words Down Syndrome for the longest time, and even then when I said it, tears came. I still get a bit of a body shock when some-one mentions it.
But on the other hand I feel like I 'm being dishonest when I don't tell people about it straight away, as if I'm denying some part of her. So at times I've felt compelled to tell complete strangers in a shopping centre. At times people comment on some of her DS features, not realising they are DS features and that is hard. I did the same when she was born and we didn't yet know her diagnosis. So what I'm saying is, having people come to meet her can bring some worries

My family and friends have been brilliant, I knew they would be. But I have been out of touch with so many people who I know are only dying to see me and DD. This is partly just normal new mum stuff, I am so busy, so tired, trying to BF etc. The shock has brought its own emotional stuff which has left me tireder and more in need of the constant support of my family. So I have them around me a lot, which gives me less time and need for others.

Sorry this is very rambling :wv

Not much advice there really, just to give it time. Send your friend a card, a gift to celebrate the new arrival, a note to say you're there whenever she's ready, a text every couple of days. Even if she doesn't reply for whatever reason, she will appreciate the thought and know you're a good friend

by **Sybil Fawlty** » Tue Apr 06, 2022 11:36 am

Thanks so much Tilsun. I really appreciate your post. I have a gift ready to go in the post and the card is written. I've been sending the texts and glad you mentioned them as I was afraid my friend might not want them. I will just give her all the time she needs and be here, as you said, for when she might need me.

by **angelcakebaby** » Wed Apr 07, 2022 10:26 am

Don't know if anyone mentioned it yet but there is a great community of mums on magicmum.com in the special needs forum. They are lovely and great for advice. Also some great groups on facebook but DO NOT post pictures of your kids on any public FB groups as they get pinched by nasty groups and photoshopped with disgusting discriminatory captions and made fun of. Only join groups if you have to request to join them. They are safer and are full of great people brimming with advice and chat. I always think one of the best things about having a kid with Ds is the vast wonderful community you become a part of. I've met some amazing people with Ds and their famillies both in the real world and online. Anyone on FB feel free to look me up. Same username XXX

tilsun · by **tilsun** » Sat Apr 17, 2022 10:46 am

Angelcake baby thanks for the tip about Magicmum and Facebook, will definately look into them.

Morrigan thanks for your lovely post about your sister. It's wonderful to hear such a positive story. As your parents may have felt, we are having to re-adjust our dreams and plans that we had when I was pregnant. It's great to be able to have other equally positive hopes for our little girl. I hope your sister had a wonderful birthday and best of luck with her Olymipic training

by **threescompany** » Thu Jun 17, 2022 3:26 pm

Just lurking on wol and saw this thread so decided to give an insight to living with someone with downs syndrome- I have a sister with Downs Syndrome. She is in her 20'S. In a nutshell, she is the life and light of our family. She is the most special important person in my life. I don't go a day without speaking or seeing her. I feel I've had a priviliged life because of my amazing sister. That might sound over the top, but it's true. We wouldn't change her for the world. :lvs

The happiness she gives us is......endless.

When she was born, it was a shock to my parents. But they were positive and accepted it straight away. My parents told my brothers and me that we had a special sister and I always knew she had DS from the start. They believe that a positive attitude is the key to making it all work out. My parents were fantastic, and when my sister was born they had 4 children, the oldest was 5 years old. My sister went to a special school, which was brilliant. She has made many friends with Downs syndrome and I think this is very important. She has an enriched life - and although she may never do things that most of us do - like buy a house, or drive or have children etc.... she is happy and content and sometimes I think she is more happy than the rest of us!! . She is self sufficient and has a little part time job in tesco which she loves. She was always given independence and treated no different from the rest of us.

I hope this is of some help to anyone reading and gives people reassurance and hope. :lvs

tilsun · by **tilsun** » Thu Jun 17, 2022 3:51 pm

Thank you Sensible-I-Hope for your beautiful post. I am sure your sister is as mad about you as you are about her. Life with our gorgeous girl just gets better by the day. Who knows, maybe one day she will have a brother or sister who speaks with as much love of her as you do of your sis :lvs

Down Syndrome

Re: Down Syndrome

Re: Down Syndrome

Re: Down Syndrome

Re: Down Syndrome

Re: Down Syndrome

Re: Down Syndrome

Re: Down Syndrome

Who is online

Finesse Weddings Understated Elegance

The Bridal Emporium

Jennifer O'Sullivan Photography

McCartin Music

Lidahertel - Professional Make-up Artist

Avon Ri

The Carolan String Quartet

The Westin Dublin

My Irish Wedding DJ

Inishowen Gateway Hotel

Dearbhail & Robin - Harp and Flute Duet

The Lols Wedding Band

BMB Films - Award Winning Video

Leonard Photography

Precious Memories

The Suite

Casey Photography

WED-IN-ROME

Allure Designer Accessories

Nikki Kavanagh Wedding Singer

Gossip Wedding Band

Ballymagarvey Village

Dance World

DougSheridanSinger.com

Ken Coogan Caricatures

Catherine Gibson

Lee Travel

Sharon Peaker Flowers ltd

Diga - video production

Darver Castle