The Reality of Special Needs Siblings

January 5, 2019

Knowing a special needs person is a whole world different than living with a special needs person almost 24/7. Not many of us have special needs siblings. That’s not to say that a decent amount of people don’t have experience with special needs, but not everyone has the opportunity to live with these people and know them deeply. I am a source of information about what it’s like to be a sibling of a special needs child. I have two siblings with Autism and Bardet Biedl syndrome, and here’s what it’s like:

It’s like having a light shone on you: because you have the ability to do things that your siblings cannot. Because you can play sports and do things that you want to try. Or what your parents want you to try.

It’s like having the light moved off of you: because your siblings have needs that cannot be done without attention. Because your siblings need help doing the simplest of actions.

It’s like being a tour guide: because every place is unfamiliar to them. Because they don’t know what to do by instinct. They don’t have rational instincts. You are their rational instincts.

It’s like learning to settle: because you have to learn that you can’t always have quiet. You can’t always have attention on you. You can’t always get your way. But that’s to say for everyone… right?

It’s like taking a breathe when you can: because you never know when you’ll need to help again. Because you get your times of peace, but sometimes are shorter than others.

It’s like learning how to help: because sometimes you need to know when to help without anyone telling you to do so. Because you must develop an instinct, a sixth sense of sorts, that will tell you when to drop what you’re doing and go to help.

It’s like developing a thankfulness for quiet: because you don’t get it often, and when it is quiet, you feel amazing.

It’s like being pushed aside at times: because taking care of your siblings is a hands-on task. Because people can’t always listen to you when they are taking care of someone else. But that’s to say for everyone… right?

It’s like learning to be thankful for what you have: because you can’t have it all, and there are beautiful things in the simplest ideas.

It’s like understanding that even though you have special needs siblings, you’re not a saint: because you have to both help and care for your siblings AND not complain about it in order to be good.

It’s like knowing that if you are to express your anger, you must do it briefly and secretly: because if the person asking you to help were to know of your complaints, they may not ask you for help again. Because if they stop asking for help, they will overwhelm themselves and this whole system will cascade into distress.

It’s like anyone else’s life, but with a twist. This twist that will alter certain aspects of your life, but will make other parts so much better.

It’s like hoping that one day there will be a medical breakthrough to help your siblings, for their sake, but internally hoping it for your sake too.

And lastly, it’s like being thankful for what you have: because nothing is changing anytime soon.

And it’s fine that way: because my life is pretty good. My life wouldn’t be the same without my siblings. I wouldn’t have it any other way.

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