Super Sensitive Subject – Do you wish to outlive your Special needs child?

I know how the title sounds but this is a very real question and very serious question, so please don’t take offense.

So many of us (special needs parents) have an absolute fear of the future.  We worry day and night about what will happen to our special needs children when we are gone. 


It occurred to me the other day that while no parent, ever wants to outlive their children, this may not always hold true for those of us with kids that cannot survive on their own. 

So if I were to say that I hoped to outlive some or all of my special needs kids because I don’t think they would have anyone to care for them after I’m gone, does that make me a selfish person or bad parent?

Have any of you though about this before? What are your thoughts?

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)


  • Heather Mayberry says:

    Yes Oh Yes! Some just may say it’s selfish of me.. but my son wouldnt agree with them.

  • Take Another Step says:

    “If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?
    When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, come back and talk to me then about this celebration we are supposed to be having.”

  • Lost and Tired says:

    This is a really tough, No win type of situation. Mortality is a very powerful thing and it puts a great many things into perspective. Two of my three on the spectrum should do just fine on their own, my oldest However, barely survives with constant supervision… I’m scared for the future

  • LaTonya Banks says:

    No I’ve already buried one child in my life.. Don’t wanna do it again!!

  • Heather Mayberry says:

    My son has told me numerous times.. Mom I hope you live forever.. it’s just sad.. it kills me.. that there will be the end.. what will happen after I’m gone

  • Vickie SanSoucie Canale says:

    Of course this is not that this is anything we WANT, but the thought of what may happen when I am gone is what my nightmares are made of…….

  • Lost and Tired says:

    I think many of us share the same fears.

  • Gabriela McNiel says:

    I don’t know what to say. Yes because I want to care for them forever. I trust no one with their dreams/lives but my immediate family. There will be a day that I am no longer here and I just pray that they are not alone. It’s just so hard.

  • Mercedes L Shea says:

    Never sat down and thought about it but the thought of losing a child sends my heart into a spasm and worrying that they will be ok when I’m gone, that’s scary too .. My daughter is 17 so if anything does happen to me and dad… I know she will be looking out for them ,along with a few other family members ..scary thought though

  • Charlette Nalls says:


  • Catherine Raleigh says:

    Yes because I am the only person that will or can take care of him, and no because my soul will die with him. It’s a conundrum, and heartbreaking.

  • Melissa Reich says:

    Catherine Raleigh that is the exact answer I was going to write about my daughter with cp. Her father had passed and I’ve done it by myself since day one.

  • Lost and Tired says:

    This is a great dialogue everyone.

  • Charlene L. Reaser says:

    By the way – even when it’s painful, it’s really helpful that you post the things you do. Thanks to all of you who share.

  • BeckyRogersWiren says:

    It makes you human. It has crossed my mind that if my autistic son dies first it would make things less complicated. But then I feel such grief at the thought and he has so much to offer, if only someone wanted to take it. I am just about adjusted to the thought of my husband retiring and our children still are here. But they are at least awesome good people.

  • Becky Rogers Wiren says:

    Yes we do. And mine are young adults and I’m trying to adjust to the fact that all the hopes and dreams we had are dust.

  • Anita Kaye Kranak says:

    I would say yes I want to be the one to take care of them but in the event that is not possible we do have another family member in place to ensure our wishes for her care are always met!

  • Cassandra Stone Boland says:

    The answer to this question for me is “yes.” I have accepted the fact that I cannot die. Ever. I think Destin, my oldest “typical” child (non special needs) would definitely step in and care for him when we die, but what a serious commitment that is to ask of him, and Destin would do this without hesitation because he loves Brody more than anything. But again still…he could be married with children perhaps grandchildren and have a special needs adult brother to care for 24/7. I watch Destin every day and think to myself “you may be Brody’s caregiver one day.” It’s intense.

  • Cassandra Stone Boland says:

    me too!!!! Literally, I am up at night thinking of this…

  • Melissa Reich says:

    I agree Cassandra Stone Boland. I know jaedon..samara’s brother.. would step up to the plate in a heartbeat but I don’t want to have to ask that of him.

  • Katy Murray says:

    My health isn’t good enough that I think I will outlive him, although mortality is certainly an issue with his syndrome. I would kind of be surprised if I did outlive him because he is so healthy. On the other hand, I told MHMRA just the other day “What happens if I get hit be a car and die tomorrow? Nobody can take care of him who understands how difficult it is for me except his older brother and sister, and they deserve a chance to have a life without the constant burden of his care. They love him and they would do it, being 19 and 18 right now, but that just isn’t fair for them.” MHMRA told me that in other cultures, families stay closer and I would have more people around who are helping, but in our culture we move away across the country, which is why MHMRA was created…to fill that gap. They were trying to help me with the guilt I already feel at how much his older sibs have had to help, saying that families naturally feel that responsibility and it is human nature. What I hope it that I will be able to find an appropriate and safe home where he can have a little independence and we can still have him come home for visits and his older sibs can gradually do that, as well. Then, when I do pass on, he will still have that contact yet he won’t be so traumatized by the event. My son has such severe elopement issues there is no way just anyone can be responsible in just any location. It requires home modifications and all sorts of awareness that very few people understand. It is going to take a lot for me to let him go, but I know that if I don’t, crisis will happen when I do go. Geez, how morbid I feel saying this, but it is reality…

  • Simone Bastin says:

    I hope he has a long and happy life but I feel my life is dedicated to trying to put in place all the things he will need to do that when I am no longer here.

  • iliana says:

    I think about the future of my son almost everyday.  He is 19 now.   I am the only one that really “knows” him right now.  His sister knows him but not really.  I know you know what I mean.  I have family that love him but do not deal with him on a daily basis to really “know” him.  So I think about how it would be for all involved if I no longer was here for him.   I have been told by them that they would take care of him but what would happen if he outlives any of them?  Situations change all the time and what you think you know will happen may not be the case when it really does come down to it.  If I knew the day I was going to leave this world, I think all the time that I wish I can take him with me.  I know a lot of parents that feel like this.   Not knowing is heartbreaking.  We would never rest in peace.  So yes, it has come across my mind that if I outlive him that at least I know his outcome.  I love him dearly and would give my life to have him be able to be independent so that I at least know he would be able to be able.

  • Lauri Golonka says:

    Just one minute longer….

  • Lost and Tired says:

    Lauri Golonka amen

  • Gabriela McNiel says:

    I second that amen!!

  • Heather Mayberry says:

    I don’t recall the conversation my 2 older kids were having.. but I caught this.. my 11 year old nt daughter says.. when Mom dies you’ll come live with me! My 12 year old aspie son says hmm.. mom’s going to be here for a while.. ya know!

  • Heather Liddell says:

    Too sad.hx

  • Janet Meliti says:

    Yes I sure do and I think I will. He has Autism and kidney disease from Prunebelly Syndrome and is severely affected by it and the syndrome. They are both fetal etc.

  • Fiona Esterman says:

    The fear I feel on this subject just paralyses me. It is just too hard to think about, but at the same time it needs to be thought about 🙁

  • jaxxma says:

    This is what keeps me awake at night and my butt firmly planted in my office chair during the day – money is obviously one solution but the guidance, companionship and love aspects can only come from finding a place in the world where your child is treasured and safe whether you are there or not…and so far I’ve not been able to make any firm plans around that.  Living in a country where there are limited social services and what there are are skewed against my child’s demographic is a constant worry and threat to his future.  I have no solution and it makes me feel like a bad parent.

  • Elizabeth Simmons says:


  • Angela Harper-Hesch says:

    Its a hard one to answer especially when I have no one to take care of my daughter if something happens to me..most days I say Yes

  • rjones22 says:

    so far I cant die, i have told the dr he cant die, told my sick son he cant die (he is NT and knows I am crazy lol) told his brother he can’t die (same kind of crazy for him). Brother will take him if something happens to me. I am trying my best to hold on to my life ins but my older son is dong well with his job financially and said dont worry about it. My issue with my sick NT son, is that if I werent here I feel he wouldnt be as careful with meds, take all meds, bathe regularly, get up and get food regularly, go to the dr at all and he would be an all out hoarder (i have his “hoarding” confined to a good size closet). I am scared all the time