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Yep, I said it. Sometimes, Down Syndrome (DS) just plain sucks. It sucks that your sibling has to deal with all the things that come with being someone with a disability and it sucks that you, as a sibling, have to deal with all the things that come with being the sibling of someone with a disability.

Sometimes, Down Syndrome Just Plain Sucks

So, does this mean that you do not love your sibling? Heck no! Of course, you love your brother or sister. It’s just that your love for your sibling does not change certain facts.

Fact#1 – No-one Wants Society to Discriminate Against Their Brother or Sister

Sometimes, Down Syndrome Just Plain Sucks

Society discriminates against persons who have Down Syndrome. That’s a fact. Down Syndrome, being a “visible disability”, meaning they can just look at your sibling and know they are “different” makes the discrimination even more possible and this sucks.

Look at the traditional education system. Have they considered that there will be persons who learn at a slower pace than others? Have they ensured that these persons will have a route to certification, employment and thus income? Income goes a long way in a person’s journey to independence. The more you have, the better your chances of taking good care of yourself.

But what is the reality of many persons with DS? They have little to no education and employment opportunities and so for us siblings, it’s struggle after struggle, fight after fight, to get your sibling any form of education and certification. We are constantly looking for employment opportunities, begging persons to give our siblings a chance. We are pioneers, getting our sibling to be the first to take this class and the first to do that course. Let me tell you something about going against the grain and being so called “groundbreakers”…it’s freaking exhausting…physically and mentally.

Because the truth is, most of us don’t have our own sh*t together (we’re unhealthy, we work a “9 to 5” that we hate, etc.) and so to be fighting all these battles for our sibling while our own lives are stressing us can be quite a lot to deal with. On a serious note, be careful of that stress guys, because depression follows closely behind. You have to remember to take a breath. I know we can’t give up the fight, but we shouldn’t lose our minds in the process. The fact that society is not set in such a way as to get our siblings with DS independent really sucks.

Fact#2 – No-one Wants to Have to Take Care of Their Sibling for Their Entire Lives

Sometimes, Down Syndrome Just Plain Sucks

They’re not your kids. They’re your brother or sister. You’re supposed to be able to see them whenever you want to, but if for some reason you can’t see them for long periods of time, they should still be ok…right? They shouldn’t need you.  Well, for a lot of us, that’s not the case. The truth is, I hate the fact that I feel that I will always have to take care of my sister and my reason is two-folded:

  • My sister wants to be independent. She wants to earn her own money, she wants to get married and have children, she wants to travel, she wants to visit hotels regularly, she wants to buy all the nice stuff that she likes, and it kills me that I haven’t figured out how to get her to do all those things. I wish I could just say “ta-da” and give her the independence she craves.

Heck, she doesn’t want to live with me all the days of her life. She’s tired of seeing my face and I totally understand. Which teenager/adult wants to be stuck with their family? They want to get out there, live their own lives and have fun. Me having to always look after her kills that dream of independence and that sucks for her. I feel, sometimes, that I have failed her because I haven’t figured out how to get her to her destination called “independence”…and that sucks for me.

  • I want to live my own life. I hate feeling as if I am tethered to my sister. It is quite easy to forget about yourself and everything becomes about your sibling. Don’t. Do. It. You run the risk of becoming bitter and resentful if you forget to live your own life.

You will one day look back and regret all the things you didn’t do for yourself. Finding the balance where you can be a good caregiver to your sibling but at the same time, achieve your personal goals and thus live your own life is tremendously hard. But, for the sake of your sanity, it must be done.

It’s Hard Being a Sibling

Sometimes, Down Syndrome Just Plain Sucks

Being a sibling is hard. Sometimes, you just want your sister or brother to be “normal”, so that they can have relationships and jobs and independence. You don’t want them having to depend on persons because you are scared…scared that when you are not around they will be mistreated.

If you are familiar with the “Serenity Prayer”, then you know a part of it says:

“God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference. “

We can’t change the fact that our siblings have DS. What we can change is how prepared they are for when we are no longer around. Get your sibling to the highest level of independence that they can achieve. It’s really all we can do…make a plan where they can live without us.

The earlier you make the plan, the earlier you can test it out, while you are still alive. For all of us that think that no-one else can care for our sibling except us (I am guilty of that), consider for a second if you were to die today…gasp! Your sibling’s life would still go on, wouldn’t it? What would that quality of life be? Well, for the rest of time that have left on earth, do what you can to ensure that it would be of good quality. Change what you can. Accept what you can’t.



  1. Such a poignant post over an emotionally charged issue. I can’t imagine being in the shoes of a sibling of another who has difficulty caring for herself. Getting someone to the highest point of being able to care for himself is the best that anyone can do. Attempting to see if that is going to actually work is going beyond, but is actually a must if you are to be convinced of this. They say change starts at the grass roots level. Getting a group together to advocate for people like your sister could start a revolution, a new beginning for putting laws into place to ensure that they are taught to care for themselves as much as possible. Such training is available for certain groups of people in some states who actually are able to earn an income that goes toward their care. I wish the best for you, your family, and your friends. Here’s hoping you have more friends out there than you know.

    1. Hello Tanya,

      Thank you so much for your encouragement and especially your suggestions. Please come back to HappyDowns anytime to share your thoughts & ideas.

      Take care.

  2. Hi Alicia, thanks for this article; it was great to read about DS. In some countries like Australia or some European countries, people with DS have to go to school with ‘normal kids’ and have a daily routine like other kids which is great. It is not always in the US and some people want to keep individuals with DS out of the system which is not acceptable. Therefore our role should be to provide the best environment for persons with DS and include them in our society (and mainly their families).

    1. Hi Marty,

      Thank you for stopping by HappyDowns. Indeed, we should strive for inclusion at schools and in our families. Our differences are to celebrated not feared and when we get to the point where society is built to accommodate all persons then it won’t be as difficult as it is now for persons with DS to strive towards their independence.

      Please come back and visit us at HappyDowns anytime.

      Take care!

  3. This is such a REAL sight! Thank you so much for being vulnerable, real, and true. It is such a refreshing thing to read your thoughts and feelings. Way to go! I love that you admit your struggles…through your love for your sibling. Such a blessing to see how you deal with the real, everyday issues of having a sibling with a disability, and coming out GOLD!

    1. Hi Shelli,
      I really appreciate your words of encouragement. Thank you so much.

      I really do hope that by being open and honest with my experiences that others in similar situations will be encouraged.

      Thanks for visiting us at HappyDowns. Take care.

  4. Hello,
    This article is very profound and enlightening. I do not have children or sibling with DS, and you have brought up so many points to ponder on the subject. It is good for us (without this experience) in our lives to know and hear what you struggle with on a daily basis. I am sure you are a wonderful sibling. This website is proof. Keep bringing awareness.
    I appreciate your posts

    1. Hello Pat,

      Thank you for your kind words. I am very happy that you are learning a lot from HappyDowns.
      I will try my best to ensure that I continue to share good quality posts with you all. Feel free to visit us at HappyDowns anytime.

      Take care.

  5. I love that you are so passionate about this cause. I am enlightened every time I read your posts. People like myself who do not have experience with DS have no idea what a day to day looks like for those that do. Thank you for creating awareness for us. Keep fighting the good fight for your sibling…but, take a moment to breathe.
    Thank you for this post

    1. Hi Liz,

      I am SO pleased to hear that you are learning from these posts and becoming informed on some of the experiences that families like mine go through.

      Yes, indeed I will ensure that I make some time for me…mental health is of utmost importance.

      You take care now.

  6. This really touched me. I have a sister who has autism. I know this isn’t the same as DS but the experiences and the emotional struggles that you explained are exactly what I go through and experience on a daily basis. I am like a second mother to her. At first it was hard for me to accept the fact that she has some sort of a dissability but this helped me to open my eyes and accept everyone for who they are. I never used to see people with disabilities as normal people. Now I appreciate them and can understand to a certain degree, how much they struggle. Great article.

    1. Hi Flavia,
      I am happy to hear that you could relate to what was said in this article. I wish you and your sister all the best. I know it’s not easy being a sibling/parent. It’s hard. Remember to take good…no…great care of yourself. Being your best self will help you to do your best to help your sister.

      Please visit HappyDowns anytime you feel like it and share your thoughts.

      Take care.

  7. Alicia,
    You tell your story and your sister’s story well. I’m glad to see that you understand the realities of both yourself and your sisters. A meaningful story also brings out memories of your readers. Your words took me back to when I was a teenager in the 70’s. I watched the family next door’s son. Even though he was 12 neurological damage stopped his mental growth at 2. I remember the joy that both of us had enjoying some time together as I’m sure that you and your sister do too and those are the ones that stick. Your sister is truly blessed to have you in her life experiencing the downer days and the joyful ones.

    1. Hi Martin,

      Thank you so much for your kind words. Wow…I can’t believe my post took you back to the 70s. Amazing. You are right…the happy moments do stick…they really help to get through the tough times.

      Visit us at HappyDowns again anytime Martin.

      Take care.

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