Siblings

Are you Obligated to Take Care of your Sibling who has Down Syndrome?

Are you Obligated to Take Care of your Sibling who has Down SyndromeAre you obligated to take care of your sibling who has Down Syndrome (DS)? Quite frankly…no. They are your brother or sister…not your child. Your parents have that obligation. You could be the type of person who doesn’t want kids and wants to travel the world with your spouse and focus on your career/business. You could be the type of person who wants their own family and wants to be responsible for their own family…not their sibling. Whatever the case, know that you are in your right to not want the responsibility of caring for your brother or sister. No one can force you to. Just to note that with every decision we make in life there are consequences, so we must be ready to accept all that follows the decisions we make.

Let me pause here for a moment and speak to the parents. Parents…please do not make your other children feel guilty if they do not wish to care for their sibling. Let us be frank for a moment. You are the ones who make the decision to bring life into this world and therefore you are responsible for this life. Of course, it would be great if your other kids happily volunteered to be responsible for the care of their brother or sister, especially when you are gone. However, this is not a must. I repeat…this is not a must. Your kids owe you nothing. So, parents you must have a plan…one that you discuss with the siblings and agree upon together as a family. You cannot be alive and well and it is your other children that are aggressively in charge of the care of your child. This overtaking should only happen if you have passed on or you become incapacitated. Parents, if you become an advocate for your child from early on and you are blessed with a good number of years on this earth, then while you are out there fighting the good fight for your child, your other children can focus on building a solid foundation for themselves, which will be very valuable if they decide to take over the reins. But until then, your other kids can afford to be selfish and focus on themselves and develop themselves personally and professionally, because let’s be real, they will need a concrete financial, physical & emotional foundation in other to take proper care of their sibling who had DS. Parents, please give your other kids a chance to have their own lives and not a life that is solely based on their sibling who has DS.

Now back to the siblings. Rest assured, you are under no obligation to take care of your brother/sister. That decision is up to you. It’s either you wish to be a part of your sibling’s life or not. Please note that when it comes to taking care of your sibling, it doesn’t have to be all or nothing. Sometimes, yes you do have to be all in and basically take over as a parent; however, there are cases in which you can offer support from a distance, based on your family structure and how much your parents have put into ensuring a plan exists for your sibling with DS. That is why the care of the family member who has DS is a topic to be discussed by all members of the family from very early and it is a continuous discussion as things will change that will end up changing the plan.

So, if you choose to play a role in the care of your sibling, my advice to you is this:

  • Your world cannot rotate around your sibling who has DS. Remember, that’s your brother or sister…not your child. Frankly, if your sibling is like my sister then they don’t want a second mother of father…they want a sibling. When my sister was a teenager we would have all too frequent arguments in which she would remind me that I am not her mother. I had to learn to back off and be more of a sister to her and treat her like the adult she is. We still have these arguments (as I am overprotective) but not as often as before. You have to have your own life. Activities that you do without your sibling (gasp! I know! Shocking.).
  • Your health is of utmost importance. If you plan to be around long enough to help care for your sibling, then you must be healthy. Whatever activities you plan to execute in order to secure your financial future…work or entrepreneurship…your body must be able to keep up with your mind. If you want to simply be able to do fun activities with your sibling…going on vacation, going out, doing whatever…you need to be healthy.
  • You will need money. Lots of it. Speech therapy, visiting the podiatrist, enrolling in weight loss activities like swimming classes and dance classes, enrolling in learning /fun activities, e.g. painting class. Whatever needs your sibling has…all cost money. You must be sound financially. Financial freedom…earning enough passive income so that you no longer need a “9 to 5”…should be your ultimate goal.

Having a sibling with DS is not always easy…the constant worrying, the sleepless nights, the paranoia about all the bad things that can happen to them…but there are the good days when you see them progressing and doing things on their own and your hope is rekindled.

I do hope you will choose/continue to choose to be a part of your sibling’s life. In like manner that you did not choose to be born or to have a sibling with a disability, your sibling with DS did not ask your parents to bring them into this world nor did they ask for DS; but they are here, DS and all…and you are here…and I hope you two will be a blessing to each other and you both will end up better, having known each other and being a part of each other’s lives.

Are you Obligated to Take Care of your Sibling who has Down Syndrome

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16 Comments

  1. Very informative article. This is hard subject to write about, and you did a great job expressing the issues.

    1. Hi David,

      Thank you for your kind words. Indeed it is hard to write about but I am happy that persons are finding this article helpful.

      Cheers!

  2. Mat A. says:

    Alicia,
    What a great and thoughtful article on whether someone is obligated to take care of their sibling that has down’s syndrome. One of my good friends has a sister with down’s and although he has never taken direct care of her he is involved in her life. Great to see. I really like your point of view that someone must look after their own health as well and not make their sibling their entire world. Basically they must have their own life in order to help their sibling. Great advice!

    1. Hi Mat A.,

      Thank you so much for your encouraging words. I am happy to hear that your friend is involved in his sister’s life. I wish them all the best.

      Yes, sometimes persons who are always willing to help/care for others find that they spend little or no time helping themselves…they forget about their dreams and unfortunately, sometimes this makes them end up being unhappy, resentful and full of regrets. Self care or self love or whatever we want to call it, is of utmost importance…even if it’s just for the sake of our sanity.

      Thanks again for stopping by…please visit us again at Happydowns.

      Cheers!

  3. This article offers great guidance for siblings regarding responsibility of their siblings with down syndrome. Very compassionate and straight forward about the needs of all parties involved with the care of a family member who has down syndrome. Thank you.

    1. Hello Christina,

      I am happy that you found this blog post informative and helpful. Feel free to stop by HappyDowns anytime and share your thoughts.

      Take care.

  4. Really strong guidance, to the siblings and to the parents! We have a child with DS, now in his 40’s, and we have had to think about how to handle his needs after we get too aged to. His siblings are NOT responsible for our child! One of them has chosen to become his guardian, and it was her choice. In case that choice changes due to her life circumstances, we have set up provisions for alternative care. His other siblings are not going to inherit her choice any more than they did ours.
    What kinds of care options do you recommend, Mat A?

    1. Hi Annie,

      Thank you so much for sharing your thoughts. It is very encouraging to hear that your son has such pragmatic parents. You should share your strategies with other parents because I know a lot of them feel lost when it comes to planning for the future.

      Annie, please stop by HappyDowns anytime to share your experiences or offer advice.

      Take care!

  5. This was very informative and helpful to those of us who feel unappreciated by those we love. It’s so important to believe in yourself and your decision to devote yourself to your sibling’s care. Inspiring. Thanks.

    1. Hi Lauren,

      Thank you for your kind words. I am happy you found this article informative.

      Stop by HappyDowns anytime.

      Cheers.

  6. LouAnn says:

    This had to be very difficult to write about, very informative, good advice for people with siblings who have Downs Syndrome. I could not imagine being faced with a decision of that magnitude, I thought my 6 year old with ADHD was tough, wow! Excellent Article! Nice work!
    Keep it up!

    1. Alicia says:

      Hi LouAnn,

      Indeed, it was hard to write about it, but I know that a lot of people wrestle with this question. I hope that through this article, I will encourage/help someone.

      Thank you for your kind words.

      Take care.

  7. Alex says:

    My sister’s daughter has mild autism and I was wondering about obligation myself. It is a good question because the answer determines a lot. It means the difference between a normal one and burdened one.

    I would probably give the same answer of “No” that you do. A person needs to live their own life. Thank you for sharing and I hope you have a great day!

    1. Hi Alex,

      Thank you for visiting HappyDowns and I am happy that you got something from this post for your own journey. Yes, we definitely must ensure that we are living our lives as best as we can and taking good care of ourselves mentally and physically.

      Feel free to stop by HappyDowns again to see what we’re up to or to just share whatever is on your mind.

      Take care.

  8. Anna says:

    It is a very hard choice to make when one of your siblings has DS that is for sure.
    I totally agree with you that there will not be the right or wrong choice from the sibling’s side to make in that scenario. You cannot make one of the siblings to take a full responsibility over his brother or sister. But if that responsibility was accepted even partially, then “hats off” to that person! It is a hard job involved into taking care of a sibling who has DS, but there is always the reward of knowing that you are doing something very good for the other person.

    1. Alicia says:

      Hi Anna,

      It’s a tough choice indeed….so many emotions – fear, guilt, worry, love, etc. But definitely not a choice that should be forced upon an individual, but one that should be taken up willingly.

      Visit us again soon Anna.

      Take care.

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