I am the proud mother of a disabled child. He is a dangerously cute, disarmingly intelligent eccentric who wouldn't be the amazing little boy that he is today without all the added extras that he was born with. I wouldn't change any part of him, because he never would have become the child he is without everything else, and he's perfect, in a beautifully human and imperfect way.
But I am also the proud mother of two able-bodied children (or whatever generally accepted pc definition you wish to categorise them as). One is serious and smart and capable of an extraordinary ability to love and an even more extraordinary ability to survive on very little sleep. The other skips and pirouettes through life managing to juggle frivolity with a deep and sensitive understanding of other people's emotional complexities, and just happens to have the fartiest bottom of anyone I have ever met. These two are the unsung heroes, the forgotten siblings in the special needs world.
They are the ones who have sacrificed the most but are rarely applauded. They are the ones who learnt to dress themselves and comfort themselves before nature was ready for them to grow up, the ones who willingly put their needs to one side so a crisis could be managed, the ones who remember to cry quietly at night so they don't worry their exhausted parents. They are the ones who have to say goodbye to their mummy when she has to stay in hospital and return to a lonely house not knowing when they will get to enjoy the comfort of a complete family again. They are the ones who still manage to be thrilled for their sibling when a charity brings a smile to their faces, without lingering on, or giving a voice to their own sadness inside.
They are the ones who stand up to the children who poke fun at those they don't understand, and quietly listen to their friends talk about days out and holidays that they don't enjoy. They are the ones who clap and cheer the loudest as their sibling comes last in the sports day race and won't give up trying to find a hidden smile in an unwell child. They are the ones who learn lessons in grief and injustice alongside their times tables and who start in counselling at the same time they start school. They are the ones who reassure the adults that they are fine, knowing that the burden their parents are bearing is heavy enough at times.
It is these children that are special, these children that should be celebrated and applauded just as much as their disabled siblings. It is my family, my three precious individuals who all over come the challenges that disability can throw our way each and every day, who are all remarkable, who are ALL heroes.
I would love to hear how amazing all your children are too. Leave me a comment here, or come and find me on Facebook or Twitter, it would be lovely to see #specialsiblings as popular as #specialsaturday on Twitter don't you think?
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Oh I’ve just had a bit cry.
I loved your pic of the kids from rooting for lemons yesterday, lovely, got all emotional at the relationship between them.
my daughter is a special sibling. Tolerant, mature above her years, loving, caring, and much loved by her special brother. She’s amazing but I worry of how she copes with hospital stays, and not seeing much of her parents during the bad times. Conversely having her special brother has enriched her life by meeting new people and above all accepting differences
Xxx
Big thumbs up for another amazing sibling 🙂 I say to everyone that whilst Dominic has undoubtedly brought a lot of challenges to our family, he has made each and every one of us better people for loving and living with him. Elliot and Lilia ‘cope’ when I’m in hospital, but the biggest worry for me is that everyone assumes that they have the easier job, not realising that Dominic is being spoilt rotten by everyone and he has me. They are dealing with all the worry and stress having no security, no attention and no ‘treats’, with the exception of one amazing charity I know called Post Pals who recognise how tough it is for the siblings. If I had the time/money/skill I’d set up a charity just for siblings.
Oh that's it, I'm in tears now.
I have 3 older children, and 2 of those have 'additional needs' also, but they are definately forgotten amongst the tornado of Rowan. I have spent the last 3 months, since we were finally discharged from GOSH (after 7 months) battling to get my 'other' children what they need. You should be proud of your older children. People who aren't in the situation like we are, don't understand why you can't make sports day, or parents evenings, why the children can't get to disco's because you can't collect them because your youngest is hooked up to his IVAC and therefore bed bound. Rather than offer to help you, they look down their noses at you and tut, like your a bad parent. They don't even know the half of it. All the time our 8 year old and 6 year old are more mature. 'It doesn't matter if I miss my disco, at least we're all together this year' heartbreaking, profound, from our developmentally delayed 6 year old, that he sees the world in a completely different way to 'average' 6 year olds. When our 8 year would rather stand the other side of the school fench signing 'have you been a good boy' to Rowan sitting in the pushchair, while her friends are pointing and giggling. When the 6 year old gets called a 'baby' in the playground because he's smaller than the others and our 3 year old (also small and developmentally delayed) wanders up to them, and screams 'he not a baby' at them. They just don't see the world like 'average' children. They see a more beautiful world.
Be proud of the amazing people they are!
Claire
Claire, we must have been in GOSH at around the same time. We were discharged mid March after an 8 month stint… in fact today is the year ‘anniversary’ of that admission starting. I wonder if I’d recognise you if I saw you. I got quite used to the regulars around the place 🙂
THANK YOU! This is such an amazing post! I have two wonderful children, one with special needs, and one with a tremendous amount of compasion! I am always utterly amazed at the sacrifices he is willing to make just to see his sister smile. They share a bond like no other and have taught our family what life is really all about. While I would love to take away the struggles my daughter faces on a daily basis, I would never take away this journey. My husband and I have found a connection we would have never known had it not been for our brave little girl. You are absolutely right, the siblings are the unsung heroes. I often think about my son and how much he has had to grow up and accept this lifestyle at such an early age. He is my hero, and I hope he is greatly rewarded throughout life for being such an increadable young man.
Thank you Corina, that’s a lovely thought that you finish with… I really hope that, if nothing else, the skills they have gained eases their way in the world a bit. But yes, the idea that life will reward them is definitely a compelling one, lets hope huh?
I love this post. It is – like your other posts – so beautifully written. I think your idea about the #specialsiblings tag is a fabulous one and I am going to begin using that now!! What a great "mission"!!
Here is my post on the subject: http://30daysofautism.wordpress.com/2011/04/29/siblings-stress-and-love-a-big-sisters-view-of-autism/
Yay you!!
What a wonderful post. This is one of my passions – getting people to understand what the siblings of our special needs children go through. Their lives are so different to their friends at school.
I'm off to put your post on twitter with the hashtag #specialsiblings and I'm also posting it on Special Saturday because I'm sure all the mums will agree with every word you've said.
thank you for writing this. It brought sobs and feelings to the surface which do not often see the light of day. I am the sibling. I am the 42 year old sibling of Jeff, my late older brother born with severe brain damage in 1964 and passed away in 2008. I am now a mom of an extremely bright ADHD girl who is the light of our lives but who I have no doubt will have an independent life as a "normal" adult. But the experience of being a sibling of a very-special needs child who I did not know life without until I was out of my parents home is literally part of my DNA and never really goes away. I do sometimes wonder what other siblings feel and think as adults. Please continue to post on the siblings – what you wrote about them is much of what I remember and I think they merit some blog space too.
Thank you for writing this, it's so true, and there's so much support out there for special needs kids, but not a lot for siblings.
Here's my blog entry about my special siblings – http://lexilil.wordpress.com/2011/07/21/special-siblings/
That is so beautiful! You’re are so right, I applaud you sweet little angels. Everyday they live with a so many challenges that most people do not understand. And even though its hard they are going to grow up and be the most amazing individuals! Strong and relentless! I have a 1 year old who was born with arthrogryposis, he is my only child (as of now). My husband wants 2 more and I worry about how the stress will affect my future children. Its so beautiful to hear about your unsung heroes, ands very encouraging. Thanks for sharing your story, and god bless you and your family!
Oh how this so hits home for me! I have three children, ages 15, 12 and 10, with my 10 yr old being the special needs one. I feel guilty all the time for what my older two children have endured growing up with a special needs sister. They have had the biggest adjustment compared to anyone else in the family. Thank you for posting this.
Oh I so relate to this, I have two children with different special needs and one fabulous NT teenager without whom I would never have got this far. And she is always saying ‘I don’t want to worry you, Mum” and I have to keep telling her that her problems are just as important!
BTW the Squashed Bologna blog is running a series of Saturday posts about special needs siblings
Hi what a great post and think this is a fantastic idea. I wish you all the luck. Thank you for linking #specialsaturday . If we can help let me know
You have three.gorgeous.children.
Nah – not bragging on mine here – esp on their natural gastrointestinal abilities. 😉
What a wonderful blog post. I am the mom of 3 children. I have one 6 year old boy and twin boys, one of whom has multiple physical disabilities. Our kids are all heroes, in different ways. It's important to remember what the siblings go through, as it is every bit as stressful and life altering for them, as it is for us.
Thank you so much for your reply. I had a quick look at your site, wow, a lot to juggle. I look forward to spending some time over there. The beauty of the blogosphere is the people you discover!
What an amazing post. I am a sibling of a special needs child. I am the oldest and I have a brother who is 21 and 2 sisters. One is 19 and my special needs sister is 17. Growing up with a special needs sibling has changed my life forever. There are so many challenges but also so many joys! As a sibling there are times when you feel forgotten or lost. I have learned patience and kindness care and compassion. It is because of my sister that I have chosen to be in the medical field. Between all of her hospital stays and because of all her medical issues I have become a Certified Nurse Aid and care for elderly adults. It is because of my sister that I am who I am today. It is nice that someone recognizes siblings and sees that it affects us too! Thank you
Thank you so much for taking the time to tell me that you’ve visited. I can’t tell you how wonderful it is to hear feedback from people, especially people like yourself who are far more knowledgable than me on the subject as you’ve been travelling this road far longer than I have. It’s why I’m so thankful for social media and so grateful to be able to come across people that I otherwise would not know existed. Do please use whatever networks you have to pass my blog around, the more people that come and visit, the more people ‘like us’ we get to connect to x
So very very true, my girls were the best sisters anyone could have asked for. Picking up bottles, moving things out the way. Holding hands through seizures. All from toddlerhood. They are mature and caring and so amazing, they tell me that they were blessed being Livvy’s sisters, that she was a gift to them. And now as we foster a child with severe needs they have called him into the family, he is there heart brother as they say. They care for him so well.
Unsung heroes, my babies, my angels.
@SaraWalkingwithangels Children have the most amazing capacity for acceptance and understanding, I think it’s us adults that probably ruin that over the years
Thank you for writing that. I am one of those siblings who would have loved to have heard one of her parents say those lovely things. Keep writing so other parents will remember their special siblings struggle everyday as well.
You know, I love that I still get comments on this post. The problem with blogs is that the things you so want to say to people get pushed down the page and then lost. Thank you for taking the time to leave a comment, it’s very much appreciated x
Thank-you. I’m not sure what else to say. Just thank-you for writing this article.
Thank you so much for this article. It is so powerful! I am the sibling to five, and three are special needs. (One is biological, two are adopted). I would not change a thing about any of them. I have never really considered myself a hero, but I do find that my purpose in life does revolve around my siblings. In 2014 I opened a coffee shop (www.spottedcowcoffeehouse.com) for my siblings and others with similar abilities to work at. My pride is in making sure that their dreams are met, and that they are not considered a less abled worker. After all, no one should be told they have to get a job at McDonalds or a Factory if they don’t want to. My siblings should have the opportunity to dare to dream too. If you want to see some silly sibling stories, feel free to check out my blog at http://www.specialworldjourney.com
Thank you so much for taking the time to leave me a message, and for pointing me towards your blog. I love finding different perspectives as it helps me understand ow my children might be interpreting the world around them. Good luck with your coffee shop, what a wonderful idea x