The reality of having a sibling with additional needs.

Being a sibling to someone with additional needs is like being in a secret club. Some things only fellow siblings will understand.
I’ve been in this club a while now and I have written blog posts about this subject quite a bit. My favourite post has to be my So you have a sibling with Down Syndrome? – Starter guide to T21, just because it is my most popular post. But what is the reality of having a sibling with additional needs, not just Down Syndrome but also other conditions?

It is hard to understand what a life like this is like when it isn’t your life. There is the old saying about walking a mile in someone’s shoes. It isn’t until you realise what kind of experience siblings have. The good, the bad and the ugly. I wrote my light-hearted post about being a sibling but not everything is always rainbows and sunshine. I am going to tell you the reality of being a sibling, from my eyes.


The hospital appointments. If you have a sibling that sees a lot of health professions then you will know that NHS hospitals are like a second home. I know that not every family has siblings that go along to these appointments. The appointments themselves can be stressful, you go for moral support for your parents and sibling. I’ve met pretty much every one of Rory’s consultants. Each one I have my own opinion of. In some ways I do feel as a sibling it is easier to tell a consultant that there is something that you don’t agree with. I have the mind-set that if Rory needs something I will put up a fuss and I do that more than what my parents do, purely because I don’t care what Rory’s consultants think of me. I want the best for him and I will fight for it.

The future. I touched on this in my other blog post but as the oldest sister I have heard people assume that when anything happens to my parents I will be ultimately ‘left’ to care for Rory. I have never understood this as I will always be left with him as he is my brother. The fact that people think being left with a sibling is a bad thing makes me so angry, I don’t care if I am left with my brother. I care for him now and I will do the same when I am 80!

The idea of lack of attention. Maybe not so much for me as I am older but if there are younger siblings involved this can happen. Someone with additional needs can need a lot of attention, this time can be taken away from other members of the family. If you are older it is easy to understand the adjustment that has to happen. For younger siblings this can be hard to process.

The stereotype. Everyone loves a good stereotype, well not really. Society seem to have this idea that we can be unapproachable and won’t have anytime because of our family situation. Obviously this isn’t the case and Rory doesn’t have that much change on my life events.

Relationships and friendships. In regards to relationships I didn’t have to worry as I was with Jonny years before Rory was born and Elsa was only born 17 days so I knew that he was a keeper. But what is it like if you date or make friendships when you have a sibling with additional needs? I guess some people might find it awkward but I feel like if they stick around when they know about your whole life as a sibling in this special club then they are definitely one to stay in your life.

The love. The love you have from your sibling is indescribable. They never judge you, they never stereotype you and they are always there for you no matter what. The experiences you have with them and because of them. I would do anything for Rory and I know that some sisters don’t have to do anything like I do for their brothers but honestly I wouldn’t have it any other way.


I don’t mind the fighting for what he needs, the judgement, the stereotypes, the people who might not want to be my ‘friend’ because of the life I have but I don’t care because I have unconditional love from my brother and that is all that matters. I am proud to be in this special club with fellow siblings. I bet you didn’t realise that some celebrities are also in this club? Jamie Foxx has a sister with Down Syndrome and Eva Longeria has a sister with a disability similar to Down Syndrome. So it is a pretty awesome club to be in!


World Down Syndrome Day photos taken by Peter at Man Cave in Norfolk

6 thoughts on “The reality of having a sibling with additional needs.

  1. Completely understand this. My 8 year old has autism and it’s sometimes hard for his little sister to understand why he does certain things but she’s really loving and just general goes along with it x


  2. The lack of attention – this one is hard. Thank you for bringing up so many points I had never thought of.


  3. This is so cute. Rory looks like an awesome boy and you are a fabulous sister. I can’t stand people who assume how life with a child with special needs is. I think we parents know it is what it is. And nothing compares to the love as you mention above. This is just a stunning post x


  4. This is such a beautiful post, even though I can’t
    understand I can emphasise with you with the struggles as one of my friends has a younger brother. Each day can be completely different to the next.


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