Tag Archives: siblings

What the teachers told me about Dominic reduced me to tears

Guest post from Caroline White, a writer and speaker. Caroline’s son Seb made headlines when he became the first model with Down’s syndrome to star in a major UK TV ad. For National Sibling Day she’s written for us about Seb’s relationship with his brother Dominic.

The week that Seb was born is a bit of a blur to me. I can remember snippets but it was so fraught with emotions that it is hard to recall it with much clarity.

One thing I do remember very clearly is saying to Simon, my husband, how I wanted us to have more children. One of the reasons, I am ashamed to admit, was because I was feeling sad about Seb’s diagnosis of Down’s syndrome and the thought of going on to have a “normal” experience helped soften the blow. I also felt that having more children around would benefit Seb and I had visions of a busy bustling house. It helped me see the future a little brighter.

Falling more and more in love with Seb

I went on to fall pregnant fairly quickly. It was for all the wrong reasons and I look back and feel so sad that I was so desperate to have another baby instead of enjoying the precious one I already had.

I lost the baby at 11 weeks. I am not negating how tough it is for the many women who miscarry their pregnancies, and at the time I was devastated, but it turned out to be a positive thing. My body was emotionally and physically wrecked, not only from becoming a new mother, but also from the emotional turmoil and shock that came with the diagnosis. A few months later I lost another at about the same number of weeks.

Over time, Seb’s diagnosis became a much smaller part of him and I became less fixated about having another baby. I began to realise that I would be every bit fulfilled and enriched as a mother if Seb was the only child I ever had, although I did still like the idea of Seb having siblings around him. And that’s when I fell pregnant with his baby brother.

Along came Dominic

The day we brought Dominic home from hospital I remember thinking how enormous Seb had suddenly become. Two and a half years older, Seb’s little face looked so vulnerable and confused. I also carried with me guilt that I had felt so euphoric at Dominic’s birth, something that was missing with Seb.

I had the usual maternal worries – would they get on? Would Seb be jealous? The worries were magnified too. Would Dominic grow up to resent Seb? Would he be embarrassed of him? Would Dominic be bullied? I worried about the “burden” of Seb on Dominic’s little shoulders. I would never want Dominic to feel his wings were clipped or that he was responsible for Seb but at the same time I hoped he would feel a certain amount of responsibility and care about what he is up to. I worried (and still do) about when Simon and I are no longer here and Dominic would have no immediate family to talk things through or make joint decisions with.

And so, it seemed, overnight…..along came Polly. Seb’s little sister.
And from the minute he set eyes on her, he was besotted. I will never forget the first night she had with us at home, he crept out of bed in his pyjamas and I found him sitting next to her bouncy chair, tenderly reading a Peppa Pig book to her (whilst she was asleep).

Becoming great friends

Dominic, Seb and PollyAll three children are very close, particularly Seb and Dom. Just the other day someone said to me “they’re such great friends aren’t they?” and yes, they really are.

Far from resenting Seb, Dominic has the utmost respect for him. He looks up to him, he sees him as his big brother. He wants to include him in everything he does and misses him when he is not with him. If he makes anything at pre-school his first thought is how he wants to share it with Seb. Often he will say he can’t wait to tell Seb something about his day and when Seb has been told off he will sneak off to keep him company – even if the telling off is because he has been mean to Dominic. On a recent shopping trip, Seb was refusing to come with us and we pretended to go off without him – Dominic shrieked and refused to move too. He was visibly upset and stayed put with Seb.

There have been so many occasions too when Dominic has had to be very mature for his age. Seb has a tendency to run or scoot off – he seems to live in the here and now with no thought of consequence. It happened several times when Polly was a newborn baby. Post c-section, I was faced with asking a 2 year old Dominic to stand in charge of his little baby sister whilst I raced after Seb. He has never complained about it and just got on with it. There was also a trip to Longleat when Seb vanished. It is a long story, but 45 minutes of hysterical mother, like a scene from Eastenders, all witnessed by Dom – thankfully with a happy ending. It is something Dominic remembers today and, as a result, he always has his eyes fixed on Seb and will tell me as soon as it looks like he might be wandering off.

The “biggest heart”

A Dominic and Sethfew months ago it was Dominic’s pre-school parents evening. I was exhausted and almost didn’t go. It is not easy to park, it was dark and cold, I didn’t think they would tell me anything groundbreaking and I had a million reasons why I couldn’t face it. I made the effort to go though, because Dominic IS always overlooked. What the teachers told me completely took me aback.

They told me that his empathy levels are incredibly mature for a four-year-old. They said he will always stop and help anyone who needs it, that he cares about his peers and that he has the “biggest heart” in a four-year-old that they have ever seen. He always thinks of others and wants to share his experiences and belongings with everyone. The feedback reduced me to tears.

Dominic has seen me care for Seb and as a result he now looks out and cares for others too. I have unintentionally set a good example and I couldn’t be more proud.

Will Seb’s siblings grow to resent the extra attention that Seb naturally commands?

Seth and DominicWe have never told Dominic that Seb has Down’s syndrome. Unless he asks me, I don’t see we have any reason to tell him. Down’s syndrome is a medical diagnosis and, whilst it is useful in preparing health care and educational plans, I want Seb’s siblings to just see him as Seb. No pre-conceived ideas or assumptions. Just Seb.

I am not naïve enough to think that the “differences” between them won’t always go unnoticed and Dominic did take me aback a few months ago in the kitchen when he said “Seb talks funny, doesn’t he?”. Stumped for a response, I said “well, we are all different aren’t we? Some of us are good at running, like Seb, and some of us are good at talking, like you” and he turned to me and said “Maybe he was talking in Spanish, he’s good at Spanish”.

I think it all boils down to inclusion AGAIN.

By being included in our typical family unit, Dominic gets to see that Seb is a person, not a condition. He sees the bright, witty, bundle of energy that Seb is. A hard working, older brother with a fantastic sense of humour and an obsession with football. A person of equal value, that brings as much to our family as any of us. An important and key component in all our lives, that is human and real and not a paragraph in a text book or a group of outdated stereotypes.

And so it seems, yet again, my unnecessary fears about the future that stemmed from a diagnosis of Down’s syndrome have not become a reality. Seb continues to teach us all about life and equality, humanity and priorities, and see the whole world differently. Not one of us in this family, least of all his siblings, would swap a single thing about him.

You can follow Caroline on Twitter.

I never felt like my childhood was unusual – #100days100stories

Anne’s twin brother has cerebral palsy. Today is National Siblings Day, and Anne is sharing her story as part of our 100 days, 100 stories campaign.

My twin brother, Jack, has cerebral palsy and can’t walk or talk. Having a disabled sibling feels completely normal, because I’ve never known anything different.

There were resources offered in school for young carers but I never felt they were applicable to me, as I’ve never felt that I go beyond the call of duty in taking care of him.

My parents, social services and carers feed, wash and change him, and I read to him and entertain him. I never felt like my childhood was unusual, and my parents always made sure that I didn’t feel left out.

No references

Even though I feel like I’ve had the best possible experience of having a disabled brother, there were still limited examples growing up of people in the same situation.

None of my friends had disabled siblings, and although I read a couple of children’s books on the subject I didn’t feel they were reflective of my experience.

In one book I read the disabled brother died, and in another a girl was ashamed to invite friends over because of her disabled sister. The first book, while realistic, was too depressing, and the second felt dated. It had never occurred to me to feel nervous about introducing my friends to Jack. They had grown up around him and were used to him.

In both books the main characters were bullied because of their disabled siblings, but that has never happened to me. I might be more easily offended than others by certain words, but the thought of anyone specifically making fun of Jack seems absurd.

Being jealous

While I never felt that different from my friends, I could get really angry when I saw them fighting with their brothers and sisters.

Although I understand now that it’s completely normal, at the time I felt that they were not making the most of having an able-bodied sibling to talk to and play with.

I was jealous of them, but I was never particularly lonely or miserable because I could play with school friends or next-door neighbours. In many ways I feel that my childhood was better and richer than if I had been an only child.

Jack is healthy most of the time, and the few times he has been seriously ill I was either too young to understand or deliberately kept away from what was happening.

A different kind of family

My family often behave strangely because of Jack, and I don’t realise that we’re unusual until someone else is visiting and comments on it. We play mealtime word games to entertain him, often roping in guests and visiting relatives.

Jack has to be fed, so our lunch takes twice as long as usual so both he and the person feeding him can eat. Sometimes I’m forced to recite nursery rhymes and times tables at the dinner table for his entertainment, but if mild embarrassment in front of guests is the worst thing about my experience then I can’t really complain.

I’m uncomfortable whenever I tell people about Jack and they react with pity, because I feel like I’ve been luckier than most people in similar situations. Jack is happy and well, so the rest of us are happy too.

Find out more about 100 days, 100 stories, and read the rest of the stories so far.