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(originally written & published on May 14, 2012)
Ok, I’ve had a blog post rolling around in my head for a few weeks and I keep saying… I’m gonna write it some day soon…but here’s the gist…
What happens with our kids with severe ASD after mom & dad are gone?
Group home?
So do you set that up while your still alive? Do you move him in while your still alive?
In my mind I picture Kyle living with us til we die… And then moving somewhere gorgeous like a farm with horses the very next day…
But that’s not realistic right? So how does it all work? This is where I need help and advice from the moms and dads of all the severely autistic adults in their 20s and 30s. Where are they? Oh that’s right, we’re in the middle of an autism epidemic so I guess there’s not a lot of severely autistic young adults out there…
But there’s got to be some… And there’s got to be some of the moms and dads of severely autistic young adults who are blogging about their experiences.
So let’s hear from them!
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What’s the plan? How do you figure
this out? Cuz i sure as hell am not going to leave it up to the government to place my child somewhere…
Now King Kyle is our only child so maybe we need to worry about this more than some of you with other children… but even then how can you guarantee that your other children will outlive your autistic child? Or how can you guarantee that your other children will always take care of your autistic child after your gone. You don’t. There’s no guarantees in life.
So what’s the backup plan? Where’s the instruction manual?
I mean the wife and i are both only 42 years old and Kyles only 9 so we have plenty of time, right?
And we’ve done our due diligence. We’ve got our wills completed last year. We also set up a special needs trust in my sons name. (I wrote about the wills and trust HERE)
And I know about the law about applying for guardianship of your disabled child before they turn 18. I got all that covered.
It’s just the nitty gritty of where he will live and when that keeps me up some nights.
I mean I want to pick the place and investigate it fully before making a decision. And I’d like to know that my son is happy there and can make that transition. And I’d think the transition would be easier if mom and/or dad were still around for visits and consistency.
So I guess this should happen before we die. But when and how and where?
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I know of a few people who are on the boards of some residential facility type places and they got involved when there kids were young so they’d be on waiting lists to get their kids into the place of their choice when the time comes…(but again when is the right time?)
And I’ve had visions of retiring from my current job (or getting laid off which is A LOT more likely) and then figuring out how to start up my own non-profit and create my own group home from scratch….maybe go in on it with some of the other autism moms and dads who are in our lives now. So that all our kids could have a place and we would be heavily involved in hiring the staff, finding the location, etc.
It sounds like a great idea but I wouldn’t know the first thing about it…or where to start…
But I think it’s something all us autism parents need to think about if you think your child will not be able to care for themselves.
And I know many will walk away from reading this thinking “he just wants to send his kid away, I’ve read his stuff before, him and his wife like to go out a lot and they’re just looking to get rid of their ASD kid in their retirement years.. I’d NEVER put my kid away…”
To you I say that you’re being incredibly naive. I think the fact that I’m asking these questions now, when my kid is only 9 shows just how much I care.
I want to prepare for every possible scenario. I want my son to be happy. I want him to thrive and I want to know that he’s well cared for long after I’m gone.
And I guess that means that I want to be heavily involved in where he’s going to live after me & the wife are gone. And since I’ll want to make sure that he likes it there I guess he’ll have to move there before we die…
So where’s that instruction manual? Where are all the autism parents leading the way on this one? I’d like to hear from others who are going thru this or have gone thru this.
Am I the only one morbid enough to think about this stuff? Is anyone else staying awake at night pondering these questions…?
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View Comments
No you are not alone and I too have pondered this question and cried over the thought many times. I also have been looked out like I was a morbid sick person to say I pray we die with Anna or Anna goes first. I don't want to think what will happen when we are gone and Anna is left alone. I have an older typical daughter but I can not expect her to give up her life to take Anna. There is one sight that I think was very uplifting and I hope more of these organizations come along when this happens. Here is the link it is called Hanna & Friends. http://www.youtube.com/watch?v=YxYoIKrTqtw
Ive often said to my partner how the hell will we rest in peace knowing our boy is in this world alone and also the very thing no parent should ever go through Losing a child i have also said wouldnt it be good if our boy could live to a ripe old age with us and then go with us its a very scary thought of our children navigating this world without us beside them. I must say though my son has 6 siblings the product of 2 blended families and each and every one of them have reassured me that he will always be looked after :)
I am nurse that has worked in a nursing home and there I have seen 50 year old autistic people. Most have siblings, but after mom and dad die the siblings find it hard to manage the care for their Autistic siblings.
One patient I think about to this day... praying with him when he missed his mommy and daddy. Calling his siblings for him when he just wanted to say hi. Finding him a stuffed animal elmo for christmas one year, and searching high and low for his cross that wound up in laundry. He will always be in my heart.
God Bless You. I too have been around nursing homes and know not all are like you. They need to pay more and monitor these places 24 hrs.
I think about this all the time. We have a son who is 6. He has a sister who is 5. Is it even fair to consider that she will take care of him? I'd like her to be able to live her own independent life. How can I be sure he won't be left alone in an institution because he can't say what he needs and wants?
SAME HERE. Only now my son is 18 and sister is 16. She can't hardly stand him because he hurt her, bruises, etc. .. still dangerous. She can't wait to start college. Has already graduated high school. Worried to death. Have guardianship now.
This is in the back of my mind all the time...My husband and I worry about our Grandson, and what happens later on, when my daughter and we both pass on...At the moment, if she needs a break or its school holidays, we take him for a week or two...we are the only other people he will go with...but what about later...He is 6.5 yrs now, and while he is getting better at some things, its apparent to me that him living by himself wont happen really...I dont know the answer.
I think about this every day and night. My daughter is almost 7, verbal and a lot could happen between now and adulthood, but realistically, she'll most likely be living with her Mom and I. I want her to be safe and happy after we're gone, but I don't know where to begin. She has a neuro-typical older brother who adores her, but I don't feel like I can ask him to be her sister's keeper for the rest of his life.
My bandmate's sister is a non-verbal ASD woman the same age as me (36). She still lives at home with her mother. Their father passed away last month and I know that really shook me up because someday that will be me. I'm rambling....
I think about this on occasion. Our "silent giant" ( 14 year old ,yelling, nonverbal , 200 lbs ) makes my heart weak. I too am guilty in once wishing he goes to heaven before the husband and I but I had to find some resolution for the future so i could live in the present.
His older brother has always assumed he was going to take care of the responsibilities no matter what. As the older brother got older he would tell me stories in detail of hiring a caregiver to live with his family and his younger brother. Did I feel guilt? Not really because each story of "their future" was said out of complete honesty, love, and compassion. I only said one comment and never changed my feeling till today : " Son. Whatever decision you make on behalf of your brother, as long as you feel right in your heart then its right for him."
Ive also got in contact with "cousins" who are about the same age range (+6years) and asked that they be apart of the caring for my "silent giant".....
Every single response was " Aunty. Of course. No worries."
Just simple statements so powerful it made me cry and made me remember to live one day at a time.
That is very generous of your family.
My cousins felt the same about their brother--there are 4 of them and one is a special ed teacher. David is now 55, he has Down Syndrome, is very low functioning, 300 pounds and can get violent ( I was terrified of him as a child.) The special ed teacher had him with her as long as possible but she eventually married, had children and he hurt one of them quite badly. Now he lives in the county nursing home and gets a lot of medication to control him. Siblings visit but it is not what was envisioned. Parents of course were much older when he was born,indulged him especially with food, were dirt poor--left nothing to help support him and are long gone now.
always on my mind always and I agree we need to do something about it too
You are not alone, my daughter is not severe, but "they" predict she will never be high functioning enough to be independent. I think about this a lot.
I feel your pain, Autism Daddy. This is a situation I struggle with also. My son is only 4 years old (severe/non-verbal autistic) but I am already thinking about it. My uncle is 47 years old and he is severely autistic and "Intellectually Challenged" (Isn't that the politically correct term we are using these days?) Five years before my grandmother (his mother) passed away, my aunt and her husband moved in with them to take care of them both. So the transition was pretty smooth for my uncle, and he could deal with my grandmother's death without the added trauma of changing his home/routine, etc. As for my son, I'm in the same boat as you - I don't know what to do either. He has two older half-brothers (by his dad)... but it's not fair to expect them to take care of their brother - and what about their future spouses? Then again, you hear so many awful stories about group homes and residential institutions... I can't imagine my uncle living in one of them, and I certainly can't imagine my son doing so! But what other options do we have?? It keeps me up at night, too, and when and if I figure something out I'll be sure to share!
I wish I can help but am at the same place. I am fortunate that we have 3 nerotypicals so there is a good chance that Logan will not outlive them all but even if they Re willing and able they can't do it forever. They too will age. Hopefully the answers will come in time to us all because I foresee a lot of sleepless nights until they do!
Same here. We have 14 year old severey Autistic son that we know will never be independent. We have family that will step in if we were gone but we know it would be hard on all involved, especially our son.
Kris .... Devon's Mommy
I am 43 and not in great health and my hubby is 51, we worry about Devon every second of every day.
I was nodding my head in agreement with your post and then I got to the part about wanting to potentially open your own residential facility after retirement and my mouth practically fell open. My husband has said those exact same words! I actually read this to him and asked him if he was Autism Dad in disguise. So yeah, our nine-year-old autistic son is in pretty much the same boat as yours and we are also in that boat. About a year ago, we started to realize that our boy was showing such slow progress in practical life skills that we needed to be realistic and start thinking about his future. That meant planning for him to possibly live with us until we were old, but then what? We have taken a slow and slacker-ish approach to researching this, but we have found a few interesting leads: The Homestead Program in Iowa (http://www.thehomestead.org/services/campus-residential-program/), Thresholds in Chicago (http://www.thresholds.org/find-services), and Lutheran Services in America (http://www.lutheranservices.org/). I wish you, me, and all the other parents a lot of luck finding places for our kids when we can no longer care for them ourselves. All the best to you. -Kathy in chicago