Is it really such a burden to have a sibling with Down syndrome?

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One of the biggest worries you will have when your baby is diagnosed with Down syndrome is what will happen to your other children. What will having a brother or sister with a learning disability mean for them? Will their childhoods suffer? Will they be burdened in adulthood? Will they feel resentful for the responsibility that will be placed upon them?

My eldest son is only 5, and even though I can see the beauty in their relationship and the accepting and kind little human that Skyler is becoming, I was really eager to speak to some siblings who are further down the road in their journey. I wanted to hear from them what it’s like as an adult and what it meant for their childhood.

Is it really so negative to have a sibling with Down syndrome? Is it really such a burden? Did they really miss out in life or is this just another one of societies misguided and wrong assumptions?

 

Katie Du Toit – sister to Ella

I always find it hard when people ask me about life with a sibling who has Down syndrome, as honestly I don’t know any different. I was 3 when Ela was born so I don’t really remember life before her. I can tell you I would never change it. I think it’s amazing to have been able to watch her grow up, and watch her become a woman. I have seen the way she loves life and makes people smile everyday, even those who are having a terrible day. I love that she dosent let it hold her back, and if she wants to try something new then she does.

I also think that she has made a lot of people a lot kinder and more compassionate. She touches everyone that she meets and that is a very special skill to have. When Nico, my brother and I once discussed the future it was automatically agreed that when that day comes Ela will live with me. Not because I am the oldest but because I am the most likely to have a family and we thought she would be happier living with a family. Obviously I always knew that she would be the priority so whichever partner I ended up with would have to be fully on board with that and they would need to have a good relationship with Ela as she comes first. I am incredibly lucky that Anton and Ela have an amazing relationship. I think she loves him more than me these days, but that’s not a bad thing.

The hardest thing is not being able to always be her sister only. I always felt she should not have too much change when it happens so I have tried to balance being a sibling and another guardian, so that when the time comes she knows I am there to look after her like our parents did too. And I will also be moving our family back to Tanzania so that she can stay in the family home and not be too uprooted.

 

Leah Cozzi – sister to Darcy

I remember my mum phoning me to tell me her test results confirmed that I was having a baby sister and that she definitely has Down’s syndrome. I remember sitting on my bed with my partner and crying for hours, petrified. How was my mum going to cope? If she couldn’t would I need to leave my nursing course and take care of her? What if she was poorly? I was so scared. A few months later and my mum went into labour and thankfully everything went well. The most tiny perfect princess was born, the most beautiful baby I had ever seen. As they put her in my mums arms all the fear just drained away, and I realised that everything was going to be ok.

Having a sister with DS for me is the same as having a sister without! What makes Darcie different is her sharp personality, her stubbornness, her dry sense of humour and her innocence. If you ever get the pleasure of meeting her she will certainly make an impact on your life. The day she was born she made our family complete and we would be lost without her.

Having Darcie has helped me with my career as a children’s nurse also. Giving me more empathy and knowledge of children with complex backgrounds and teaching me to have more patience and time for people. Sharing our story has enabled me to support parents that have had ‘surprise’ babies, giving advice and reassurance that everything will be ok.

 

Dave Colclough – brother to Andrew

Myself and Andrew are the closest out off all my other brothers and sisters, I think mainly because there is only 18 months between us. I was born while Andrew was on the operating table having open heart surgery.

I have never suffered or been deprived of anything and I include Andrew in the majority of my activities. For example,he enjoys coming out with me and my mates for a few beers watching the football ( he’s a massive Liverpool fan ). Also, he really enjoys wrestling so I’ve taken him to watch it a few times in Cardiff.

As I’m a gas engineer he has come to work a few times with me and really enjoys working, he has also just finished college where he has been studying living skills. He is an amazing dancer and on a night Out if there’s any music playing he is the life and soul of the party!

He lives at home with my parents, but when the time comes he will come and live with me Abby.

 

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Genna aged 13 – big sister to Jaxon

We found out during my mum’s pregnancy that there was a chance Jaxon could have Down’s syndrome, and we talked over what it would mean to be a part of this amazing journey of having a baby with Down’s syndrome.

 
Some people say that it must be terrible to have a brother with Down’s syndrome, but they’re wrong. Having Jaxon in my life has made me a lot happier and he has given me a more positive view of life. Anything he achieves we all cheer and clap our hands, and we all have a massive smile on our face. When he’s cheeky he’s easy to forgive because he has such an adorable personality.

 

Jessica – sister to Woody

As the sister of someone with Down syndrome, I feel blessed to be able to experience the innocence and love that Woody lives with everyday.  He is always a happy guy who loves meeting new people and a joy to be around. Woody puts a smile on your face with ease!

 
When I met my husband, I wanted Jamie to meet Woody right away to ensure that Jamie understood Woody was a part of our family and a package deal.  Jamie took to Woody and fell in love with my brother as everyone does. As time went on Jamie and I spoke about how he would feel if the time ever came that we would need to have my brother live with us. There was no hesitation in his decision, he simply asked “Where else would he go?”. Woody needs to be surrounded by the people that love him, that care for him and will protect him as only family can.  My children love their Uncle Woody and feel the same way! It would never be a burden,  but an extra chance to show my brother the love we all feel for him!

 

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Jamie – brother to Rachel

“Oh, you are Rachel’s brother?”. Ever since she could walk and talk, our sister Rachel has been the out-going, loud-mouthed, boisterous member of the family. She is 4 and a half foot tall, rosy cheeked and has Down Syndrome. She will make conversation with any member of the unsuspecting British public, and has no qualms about dragging a reluctant sibling into the conversation. I can’t remember too much about my life before Rachel, but I do remember being introduced to strangers on the bus a lot less. As the type of person who would rather try my hand at sword-swallowing than talk to a stranger, it has been horrifying to watch her blossom into the kind of confident and friendly person who can talk to a shop assistant like they are an old friend. But it has also been much more than that. It has been rewarding to see how her smile and her innocence and her playful but biting sense of humour has touched the lives of so many people. It has been comforting to see almost every person she has ever spoke to return the favour. And it has been an unsuspected bonus to be dragged along for the ride.

 
I was too young to have any of the worry on my shoulders when Rachel was born and diagnosed, and by the time I was old enough to worry, there were very few worries left. She is not the restrictive, burdensome family member I might have worried she would be, had I been old enough. She is my sister who is opening doors to the world and pushing us all on to be better people. She isn’t the perfect person, she is stubborn and head-strong and she has asked for a bite of almost every food item I ever had, but she is what some people might think she never could be: a deserving and worthwhile member of society.

 
My life as a sibling of a person with Down Syndrome has not been a life overshadowed, or a life filled with worry, or a life restricted. It has been a life enriched, a life open with possibilities, a life filled with a little more happiness.

 

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Victoria Ingrid – Sister to Amie

What it’s like to have a sibling with Down syndrome, what can I say it’s just like having any other sibling. I am a child of 6, and my youngest sister has Down syndrome.

I remember the day my mum told me about her having Down syndrome I was very young so didn’t know what it meant. As I grew up I came to learn what it did mean, and well it means she is just like me and my other siblings.

She is 16 nearly 17 years old and she has been my rock throughout all those years, we have a very strong bond and I would not change her for the world – even when she can be very stubborn and strong willed, but that’s what makes her her. She has done amazingly well like attending main stream schools, and has now gone off to college. She amazes me every single day with the things that she achieves, she’s just like any other teenager. She is funny, strong willed, loving, caring and the list could go on.

It’s a very close subject to my heart as I know the stigma that is associated with Down syndrome and I know what people say and what people’s views are. I once watched this documentary and to sum it up the country basically aborted nearly every single child know to have Down syndrome, this broke my heart and I sobbed to my husband, to think how could people have this strong view that they aren’t capable, it’s a burden or whatever else they think, because my little sister has changed my life, she brings so much joy and love and laughter, I could not imagine my life without her.

 

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Kyle Ingrid – Brother to Amie

What’s its like to be a brother to my not so little sister Amie who has Down syndrome? Amie is 16 and I am 29 so the age gap is rather large, but what can I say? I remember when my mum and step dad found out about Amie having Down syndrome because we were on holiday. Mum was so upset and I didn’t really understand what Downs was.

In time Amie came along and was like a normal baby, she was a fighter from the word go. She had to endure heart surgery in the first few months but that can occur to any human being. As time passed I could tell she wasn’t exactly like me and my sisters but I loved her just as much. She began to get a personally and is very strong minded, moody, bubbly and set I her own ways, but who isn’t?

We have all rallied around her to push her towards school life and social life, and she is lucky to have 3 bothers including me and 2 sisters which helped her lot I think. She now goes to college by herself after going to the same secondary school as me. Not a special needs school, but a perfectly normal good school.  And why not, she is just as normal as anybody else, just like anyone who has Down syndrome. She has achieved so much in her 16 years of life, and it just goes to prove that anything is possible no matter what condition a person has. My little sister, I wouldn’t change her for the world.

 

Megan Smith – Sister to Joe

I remember so clearly the day I was told I was going to be a big sister again, but this time to twin boys! The excitement was overwhelming. I remember being speechless as it came as quite a shock to the whole family. As a student midwife myself I was excited to be on the journey with them.
 When the test results showed that one or both of the twins would have ds it did not change my feelings one bit. Being a student midwife I’d learnt about children having complex needs and knew a little about Down syndrome. When the twins were born it was discovered that little Joe had ds. He was perfect in every single way. The past 18 months have been an amazing journey and being a sibling to Joe makes me feel so lucky. He’s brought happiness and fun to all our lives. He’s such a happy, funny and excitable little boy with such a great little personality. He’s meeting every one of his milestones and makes us proud everyday. He makes every day brighter.
 Having a brother with ds is the exact same as having a brother without! Seeing him smile and hearing him laugh really is the best thing in the world.

I know these are only a small amount of siblings, but I promise you that the amount of love and support I see between siblings daily is overwhelming. I’m sure there are people out there who are not so positive, but I pretty much guarantee that most are.

Parents are telling society that they are happy. Siblings are telling society they are happy. People with Down syndrome are themselves telling society they are happy. Just when is society going to start listening?

 

15 thoughts on “Is it really such a burden to have a sibling with Down syndrome?

  1. Sarah H says:

    Lovely collection of stories.
    My son’s two sisters and brother adore him. They have all gained a great deal from having a superstar sibling in their midst.
    I never really worried about it . They all have each other and they all gain strength from that.
    It is ridiculous that we still feel obliged to justify our children’s existence. People who feel uncomfortable about DS have no clue what they are missing out on!
    Love your boys by the way!
    And these stories are important. Well done for capturing them x

    Like

  2. Dewi says:

    Such a touchy post. Thank you. My eldest is 24 yo and his DS brother is 19 yo. Their bonding is beautiful though they now live seperately.

    Like

  3. Hooks and Dragons says:

    What a beautiful positive post. I work with adults who have learning disabilities, some of whom have Downs. Through the course of my work I meet parents and siblings too. Every tale is similar. No matter what difficulties may or may not happen, their lives are positivity enhanced by having someone with Downs in their family. Xx

    Like

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