I thought hard about what I should write about for my first proper blog... do I be cliché and write a happy upbeat post that no one will read? Then I thought maybe I should just talk about the biggest part of my life - my sister.
I don’t mean this is going to explain her condition or go into medical details (that might come in a different post), but instead talk about what it is like being her big sister. This is something you don’t see a lot written about, a subject that many probably don’t feel like it’s worth the discussion.
In all honesty, I’d never thought anything of being a “special needs sibling”, I was just her sister and then I read the book “wonder” and on page 204 two lines spoke to me.
“and the universe doesn’t. It takes care of its most fragile creations in ways we can’t see. Like with parents who adore you blindly. And a big sister who feels guilty for being human over you.”
I realised, maybe, it is a bigger deal than I first thought - so this is me, bringing the tea, about what it is really like to be a sibling of a child with a disability.
Before writing I done a little research, looking at articles online written on the subject and then I thought the best way to do this would be to pull out the bits that stuck out to me and explain, correct and help those to understand them. I didn’t want to just ramble on aimlessly, so instead I’m addressing the information that is already out there.
1.
“The advantages to having a brother or sister with special needs are numerous and include being more empathetic, more responsible and more resilient.”
This is one of the major positives of being in ‘this situation’, I find myself thinking more about other people and their feelings. From a young age I have felt responsible for my sister and not just in ways that are normal from someone with a younger sibling; I have changed her nappies for 16 years, bathed her, given her medicine and watched her constantly. When she was younger this wasn’t as complicated but now she is older and deteriorating we are having to be more and more careful about watching her. In January she choked on birthday cake and I have never been so scared in my life, I shook for about 3 hours afterwards. I researched what to do when a minor chokes and contacted training companies, it scared me that much.
the responsible sister in me took over.
2.
“another said her friends thought she was being mean if she said anything bad about her sister, even though friends with typically developing siblings often complain.”
Basically, they are your sibling, you can say anything you want about them. I am the first to point out when Terri is being a pain in the arse, often referring to her as the devil child when she is being naughty. Besides the age gap and the mental age gap we argue like normal sisters and I think the fact she was brought up this was is what makes her so feisty. It’s normal for your brother/sister to do your head in, don’t think it isn’t.
Side note of personal experience: A girl at school once sat in front of me and wished her brother was dead. This got to me. Imagine, sitting in front of someone who’s sister is inevitably going to die and wishing that. Something to think about.
3.
”Many are told early on that they will be expected to care for their sibling when their parents are no longer able to do so. This puts enormous pressure on them.”
I’m not going to say much on this one, other than it would be an honour. I wouldn’t want her to be looked after by anyone else – I’ve even gone as far as telling my mam and dad to write a will and make sure I would be her guardian. This is most likely the case with most siblings, whether special needs or not, family takes care of family where they can.
4.
“Siblings of children with disabilities are at a greater risk than average of developing emotional issues, anxiety, and stress.”
BINGO.
I have lived my life people saying “I don’t know how you do it”, “how can you talk about it without breaking down”, “you’re so strong”. But honestly, what choice do we have?
So far I have dealt with all the above marginally well, I keep a lot in and in a way try and organise every bit of my life I can because the rest is chaos, my mood can be low and I just sleep but I wouldn’t have my life any other way. Like everything else I am finding ways to cope with my anxiety and stress (this blog being one of them).
5.
“They may feel fear about the health of their sibling or about what may happen to their sibling in the future.”
With Terri the future is inevitable her condition is life limiting, every day is a victory.
Yes, I fear about what is to come, but right now I just enjoy spending time with her at every chance I get. There is no secret to dealing with this as everyone I have met in the same situation has their own little defence mechanisms…
6. “In some cases these siblings use someone’s attitude about special needs as a test for screening friends and mates.”
If you’re in my life you need to be accepting of my situation and sister, it is as simple as that.
I don’t waste too much energy on this, something I have learnt is surround yourself with people who support you. Just know that if you ever say anything derogative about special needs, you’re gone.
7. “you’ll exhibit compassion that astounds others, you’ll know more about healthcare than 95 percent of adults you pass on the street”
This is one that gets me, you’ll live your life with older people presuming they know more than you, have more life experiences... but they don’t know that you know the ins and outs of her condition, the medication that’s deadly or the genes that caused it all. They won’t know all that you’ve dealt with in your life so far and they don’t need to.
If you’re reading this and you are a sibling of someone with special needs, or a parent of one – you’re going to be ok. You’ll find your own ways of coping and it will shape you into the person you become. It is not easy, and I can’t imagine it getting any easier but it is the most rewarding part of my life knowing that my sister shouts for me on a Saturday and Sunday morning to get in my bed for cuddles.
All cards on the table, being the big sister to Terri’s is the hardest but most amazing honour. Even with all the bad...
If it wasn’t for her, I wouldn’t be me.
- Jody Patricia
(Sources:
https://www.google.co.uk/amp/s/www.psychologytoday.com/gb/blog/band-brothers-and-sisters/201406/siblings-children-disabilities%3famp https://themighty.com/2014/12/a-letter-to-special-needs-siblings/ )
Just lovely - you write really eloquently and also in a very down to earth way. As someone who works with children with special needs, and their families, it is always helpful to read things written directly by children and young people about their experiences. Thank you for putting your thoughts into words - I hope it is something that proves helpful to you too. X