I'm the older sister of a sibling with Downs, AMA

[DoubleNegativePanda]

It was diagnosed when she was born, there wasn't a lot of prenatal testing done when mom was pregnant. Although she kept asking for it, she thought something was wrong! Sister was born at home, absolutely tiny and with a very serious heart defect that had her in and out of the hospital for the first five years of her life.

I'm 42, she is 35. We also have a sister who is 39.

What impact do you feel this had on your own childhood?

Did you find it difficult having a sibling with Down’s syndrome?

Natalia, quite a large impact. There were large periods of time that my younger (middle) sister and I lived with family friends. My dad was working insane hours and mom was at the hospital 24/7. I don't recall resenting this, it felt kind of like going to camp or having long sleepovers.

It did turn me into a bit of a warrior sibling, as over the years I fought a lot of fights on her behalf whether verbal or physical. I still am extremely protective of her. I think she has made me infinitely more open-minded and accepting of others flaws than I might have been otherwise.

Phuquo I can't really say that I found it difficult. It was just my life. I was already a big sister when she was born, and then the littlest sister just seemed to me more vulnerable. I am sure there were times I felt ignored or resentful of the amount of time she commanded from my parents but in all honesty I can't remember feeling that way. It wasn't a dominant facet of my feelings, at least.

Where does she live now?

What (if anything) would you want to say to / advise women who got a DS diagnosis for their unborn child?

Where I work, it is very political regarding employment opportunities for people with Down's Syndrome. Lots of pressure to help them into work but those I have helped into work have not sustained. Not because of a lack of support or negative employers but because of health difficulties meaning their families made the decision for them to leave work. It's a waste of time and money but if we didn't do it, we'd get a real hard time. What are your thoughts on Down's Syndrome employment opportunities? What do you agree is realistic?

Also what are your thoughts on the "don't screen us out" campaign? It makes me uncomfortable. I come across a lot of families with a child who has down's syndrome and none of them have two parents who work full time. Most only have one parent who works. Many are single parent families. Parents give up their jobs, downsize, have depression etc. Yes their child is loved but when I see and hear their experiences, I know what I would do if I had such a pregnancy.

Sorry if this upsets but it's an AMA thread...

Hope you dont mind me jumping in here OP. My little sister was born with Downs too so Im curious how you find it compared to me. Unfortunately my sister passed away 16 years ago so didn't see her into full adulthood (she was 18)

This is like a similar thread. Do you feel responsible for your sister and would her needs stop you making a life or career choice for yourself? Thinking eg of amazing career and husband in NZ.

I'm sorry for the lag in reply, I was just a tired cranky mess when I got home from work yesterday. I sat and watched The Orville and knitted, and nothing else!

@Eeeeek2 She lives with my mom, but spends every other weekend with my dad as we all did after my parents divorced. She just never stopped going!

@Sunshiness, that's actually a hard one because every person is so different. I suppose if it was a friend who was pregnant, I'd try to be as positive as I could while still being realistic. Things won't always be easy and sometimes it will be downright difficult to handle, but that a child with Down's is as much a joy as an NT child. It's hard for me to imagine what to say to a parent as I'm not the parent of a child with DS. I did have to undergo genetic counseling when pregnant and refused the additional tests because I knew I was going to keep my girl regardless of disability. Having grown up with my sister, I wouldn't think twice about parenting a child with DS.

@flopsyandjim, there are so many subgroups of society that need and receive additional help, and it's not always successful. I know several people with DS who work full time and have held the same job for a long time. My sister has had her current job for about 10 years. Historically people with developmental disabilities have been viewed as not worth wasting time on, which I don't believe to be true any more than any other group of disadvantaged people.

I don't live in the UK and am not familiar with the Don't Screen Us Out campaign; I get the gist from the name and I find it heartbreaking that a group of people even need to verbalize "please don't kill us because of who we are". I do know a couple of families that have two working parents, but you're right that most have one parent at home at least until the school years. That's not that uncommon for families with only NT children either though. Most of the families in our social circle are not divorced, although my parents are. My parents divorced because my dad was a long-time alcoholic thought, and not because of the stress of my sister's presence. I suppose it could have been a contributing factor, but his drinking was out of control long before she was born. She was an accidental conception; I think my mom was at the end of her tether with the drinking and stayed because she got pregnant.

@whiteroseredrose I do feel quite responsible for her. 11 years ago I moved 2000 miles away for the benefit of my husband. I'm not happily divorced and planning to move back next year when my daughter graduates high school. In the past ten years my mom has had cancer and an aortic aneurysm and my dad has had two heart attacks; they need support themselves and they need backup care for my sister. If I met a fabulous man here in the next year would I still leave and go back? Yes, I would. In many ways now that we're grown we have a parent/child relationship. If she needs me, I will be there.

Where does she live now ? I have a 7 year old sone with a genetic condition that presents a lot like downs . My biggest worry is who will care for him when I can't . Dh is a high earned but did hope to retire early so I doubt we will get funding .

@mrsmeee, do I resent my sister? No, not at all. I don't remember ever really resenting her.

@hendricksy She lives with my mother, who is her designated carer. She spends a decent amount of time with my dad, too. If my mom were to be incapacitated or die she would live with my dad. If they both did, she would live with me.

I’m the parent of a child with Down’s Syndrome and I don’t really have any questions but just wanted to say thanks for this thread - it’s always great to challenge misconceptions and “it’s the siblings I feel sorry for” is an oft heard phrase. I like to think that my older child will have a similar view and attitude to you; at the moment he doesn’t really realise there is anything different about his little sister (he’s 5, she’s 2). We’ve had to manage a few hospital admissions and he’s had a few unplanned sleepovers at grandparents but like you he considers those to be a treat!

Are you happy to have her live with you? What's her mental age now ? I don't want my dd to be her carer and will make sure she isn't . I want her to have her own life and not have to care for him .

Do you have children ? How would they feel about her living with you?

@nightfall1983 I'm glad it's touched something positive for you. I've always thought that people who say "I feel sorry for the siblings" are simply people who don't understand what it's like to be that sibling. My sister has had a great impact on shaping who I am, and I think I turned out immeasurably better for her influence.

@hendricksy, I wouldn't hesitate for a second to become sole guardian of my sister. I wouldn't resent it. She's a piece of my heart outside of my body, and I can't imagine not wanting to care for her. Every person is different; I'm not sure our middle sister would be genuinely happy to take on that role. We are very different people and that's not bad.

My daughter is a teenager, and knows that it's a contingency plan. She doesn't mind. We just see it as family taking care of each other. Neither of us would be comfortable placing her in a group home.

Not sure what her functioning age is, I just realized I haven't really given that much thought. I'll ask Mom what she thinks at get back to you.

Hope you don't mind me joining in. My youngest brother has Down's Syndrome. I am in full agreement with you that having him in my life has only been a positive experience. My siblings would also agree with this. When I read posts from people talking about termination for the sake of their other children I find it very hard to understand. My brother is amazing and I am proud to be his sister.

Can I ask your thoughts on termination for medical reasons?

I'd like to have a family some day, but I wonder if I would be able to cope with a SN's child because of my mental illness (anxiety, depression and possible ADD).

@Captaintuesday, by all means join in and answer all the questions from your perspective as well!

@catowned, that's a very weighted question as it's impossible for me to answer impartially. To my way of thinking a medical termination would encompass defects that impair or preclude life. My sister and the many, many people I know with DS are very much alive and thriving. So to be perfectly honest, I view termination in this scenario as one of convenience and not of medical necessity. However, other women's choices with regard to termination are none of my business and my personal feelings about it shouldn't factor into their decisions.

My sister just texted me Hi from my moms phone. I said hi back and said to my mom, "I love her so much" and Mom texted "She says 'Tell her I know that'".

My son is an absolute joy now and such a generous kind spirit who makes me laugh every moment of every day but I can't help that the future is such a dark cloud over us that it kind of spoils that . I often wonder if his personality is due to his condition or wether he would have that if he were a typical child . Honestly he finds fun and laughter in everything!!
Obviously maybe my daughter will feel differently when she is older but there is no pressure for her to care for him and it would be totally her choice . I'm not afraid of care homes / assisted living etc and would like him to be able to live semi independently so it would be an option for us if we could afford it .

As an aside I find it weird that people say it's the siblings they feel sorry for etc as a lot of people don't know there are having a child with downs and it's not exactly a life choice is it ? I had invasive testing with my son and was told he was fine ( totally typical in their words ) but he isn't . He is what's known as a swan ( syndrome without a name : undiagnosed ) because medical science hasn't caught up yet . 40 years ago he would have just been known as backward or a retard ( shocking for us to hear now ) but thousands of children are born like this every year with no diagnosis , no known condition and most of them are way way worse than Down's syndrome . I do think people should be aware of this because frankly I had no clue . Still in the press I see talk of babies with Downs should be aborted etc but what about the rest , what about the ones who are born and it doesn't present until toddlerhood or sometimes later ??
Also I do think the media has rather rose tinted Down's syndrome and fat it's not all shiny , my son has no medical conditions and yet we still spend a lot of time at hospitals and I've had to fight for everything single thing he has got . It's tedious , boring and soul destroying . I haven't been able to work for years ( luckily dh takes up the slack ) because there is always something to do so it's not an easy life and sometimes Love isn't enough .

Does your family have a plan for your sister’s long term future, should one or both of your parents be unable to live with and do things for her?

A friend has a family member with a learning disability and they had difficulties when their parents became older and then died. The family had tried to get the parents and family member to make plans and take steps to help them become a bit more independent and access services, but they didn’t and for a time it was very difficult, especially for all the siblings.

Can understand why family members of people with downs may be unhappy about the very high rate of pregnancy terminations, but I strony disagree that such decisions are about the woman’s “convenience”. As a PP has highlighted, parenting DC with SN or health issues has huge long term implications, especially for mothers, since they SAH, are most often single parents, and/or in financial difficulty.

@Loopytiles frankly I'm broken , of course I love my son but it's often a miserable life . My back is ruined because of his poor mobility ( he didn't walk until 3 ) and I had to carry him everywhere between buggies and cars etc. He has only just now at 7 been able to pull himself into his car seat but I still have to push him up . My personality Has completely changed and I don't see the fun in life anymore . Sometimes it's just too much bother( I'm not depressed just a realist. )
The reason why I think assisted living is better and kinder is if I care for him forever and then die he will have such a shock going into one then whereas if he goes from 18 then he will be used to it and will also have co fact with a wider circle not just his parents .
He is only 7 so we don't need to worry about this yet but our retirement is certainly looking different to the way we had planned .
We are fortunate that dh has done well and we aren't short of money but it doesn't fix everything and often we are penalised for his success as we have to pay for everything .. whilst I'm happy to pay for a lot of things , care will be £1000 a week which we obviously won't be able to afford when we are Retired . 😬

Also we have moved to a house that will accommodate an older child ( kind of annexe ) if and when dd moves out . If not we will move .. that's as far as our plan goes though . Planning bag this age when you are unsure of what you are planning for is so tricky .