Monday, May 14, 2012

Where Will He Live When We're Gone? The question many autism parents are afraid to ask...








(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!




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?




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...?

-------------------------- -------------------------- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

143 comments:

  1. 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

    ReplyDelete
    Replies
    1. 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 :)

      Delete
    2. 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.

      Delete
    3. 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.

      Delete
  2. 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?

    ReplyDelete
    Replies
    1. 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.

      Delete
  3. 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.

    ReplyDelete
  4. 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....

    ReplyDelete
  5. 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.

    ReplyDelete
    Replies
    1. 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.

      Delete
    2. always on my mind always and I agree we need to do something about it too

      Delete
  6. 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.

    ReplyDelete
  7. 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!

    ReplyDelete
  8. 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!

    ReplyDelete
  9. 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.

    ReplyDelete
  10. 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

    ReplyDelete
  11. This is my big question as well. Single mom, son is an only child. What happens when I am gone? But yeah, as parents of spectrum kiddos, we end up learning A TON of things we never thought about in college . . . So I figure yeah, you learn how to do what your kid needs next . . . whatever that is. I keep hoping for *some* coordinated solution, but nothing is appearing as of yet . . .

    ReplyDelete
  12. Autism Daddy
    I have the same worry, I haved a 6 year old son and I'm 50,and I'm scared to death what is he going to do, He does have a younger sister that is 4 years old. But how can I ask her to give up her life for her brother. I pray that when Billy's 18 I'm still here. I believe at that time I'm going to find Adult care home for Autism Adult (Praying someone has developed one)and hopefully get him settle and adjusted in case we pass away. I don't want to put him away but I want him safe and my daughter have a happy life without my son being a burden. If anyone out there has a better way let me know...cause I love my son to death and I worry about this a lot

    ReplyDelete
  13. Vela Microboards....In Canada I used to work for a lady who has one and now lives in her own place with 24 hour staffing. I know there was a microboard in Hawaii. Would love to write more but am trying to get everyone to bed. Takes a lot of parent involvement to get it started but you are already heavily involved!!!

    ReplyDelete
    Replies
    1. Sorry it was Ireland and Australia that have Microboards......to be more specific it is British Columbia I live in.....sleep deprivation is a horrible thing!lol

      Delete
  14. My NV son has an older sister, I tell her she is going to have to look after him, I'm pretty sure she will she's a good kid.
    To anyone that might think thats not fair on her..you may well be right, I would say to you what President Kennedy once said "Life is unfair". Its the way it is.

    ReplyDelete
    Replies
    1. Life is unfair but to off handedly expect your daughter to take care of her brother as a given right is appalling. You are presuming that she is able and willing to take up your responsibility. God forbid what happens if she becomes seriously ill or dies what then? You have to make some provisions for your son not expect your daughter to do it for you.

      Delete
    2. I disagree that that request is appalling. How we have changed in this society is unfortunate. I can't imagine raising a family that didn't feel a sense of obligation to one another and I hope none of our younger generation hooks up with a partner who lacks that sense of compassion and belonging. Tribal cultures understand this concept even to the level of the village. We'd be better off as individuals if we could get back to that understanding. The Atlantic's Oct 2010 story about the first case of autism mentions that the success and independence of Donald Triplett has much to do with the small community he grew up in and continues to live in, due to the acceptance and support he has always found there. The people he hangs out with and knows as friends are not hired.

      Delete
    3. See the post regarding the special ed teacher who had to place her brother in a home--can't be helped sometimes.

      Delete
    4. I don't want my NT children to have to give up their chance at a life to care for their brother. They've had to make a million sacrifices while they've lived here at home. I will not place that burden on them. They love their brother to the ends of the earth. I know how hard it is for me to care for him. I've struggled to balance his needs with theirs and never seem to actually find balance. I won't ask or expect them to have to do the same. It was my choice to have him, he's my child, not theirs. I want them to have a chance at a "normal" life. Sure life isn't fair but why on earth would I purposely make it unfair for them? If you asked my kids if they'd take him in they'd say yes. They are too young to know what impact that would have on their life, a spouse, or their own children.

      Delete
    5. You can ask your daughter....You can't 'command' her.

      Delete
  15. The son of a really good friend is now 23 and is on the severe end of ASD. She is lucky (if you can call it that) and has found a great program near where she lives that is designed for ASD, Downs etc older children. They have aids matched to the kids, and it's kind of like a group home, where they can spend several hours a day, at the beginning, and they work their way up to living there full time. Her son loves it there, and their plan if for him to move in sometime after he turns 25 but before he is 30. The best part is that the parents are encouraged to spend as much time as they want getting to know the staff and programs as they want. They even have a room for the parents to stay over in every once in a while after the kid moves in. Right now he spends about 3 days a week there, and it seems he looks forward to going back as soon as he leaves.
    I sure hope there are more places like this all over the US and Canada.

    ReplyDelete
    Replies
    1. Sounds like a great place to look into. Can you give us the programs name and location?

      Delete
    2. That sounds like the perfect transition. If my son ends up needing some type of placement, I hope to find something like this. I would rather transition him while I'm still around than have so many changes all at once.

      Delete
    3. My heart skipped a beat when I read this. I am scouring the country looking at a humane and compassionate place for my son. Please share the name of the place you are describing. Anyone recommendations would be greatly appreciated.

      Delete
    4. Please share the name of this program, organization and the location.
      We are very hopeful that there will be a place for him if he needs it.
      Thank you

      Delete
    5. There are going to have to be more places like this in the future if the numbers of our children demand it. It's good to know there is already a good program out there. Hopefully more will follow.

      Delete
    6. I'm a grandmother of a 22 yr.old male. His mom died in 2013. I truly worry about him living where he will be cared for and loved. He was an only child. I have him in a daily program now but they don't seem to have a program on easing into independent living. I've made so many calls and the few I found are to far for me to do pop-ups I'm in mi. ( Detroit area). I need help!!! Just like his mother who died at (44). I could be next.

      Delete
  16. Wish I had an answer to give you. My son has Aspergers/PDD and will always be very vulnerable and is not able to be totally independent. His brother is 19 years older than him so even he is not always going to be around to look for him. It worries me sick as there are no residential or independent living set ups to cater to his needs in Ireland. I have left the house in trust to the boys so there is always a home for them and I am still seeking the a better solution. We have few relatives to ask and they are abroad anyway and my eldest son - well - is it fair for him to take up my responsibilities and is he able for it full time? Im not sure

    ReplyDelete
  17. When we got the Autism diagnosis one of my first thoughts was that I have to figure out a way to never die. I worry about what will happen to him all the time. We've done the wills and special needs trust. I like the sound of the facility the 3:30 AM poster describes. Hoping some place like that is an option for us.

    ReplyDelete
  18. nope, you aren't the only one thinking about this stuff. I think we are hopeful that things will shift and we might have wasted some time contemplating the future... but lots of parents I know are actively thinking about these issues.

    ReplyDelete
  19. Yes, i have the very issue. My 9yr old boy keeps telling me that i have to live forever so i can look after him. I work very hard at home with him. explainging everything to him. fortunetly for me mine is independant and verbal. I pray evey night that i can get him to level of independance where he can look after himself. I dont believe that his little brother should have to look after him even thou he probably would.

    ReplyDelete
    Replies
    1. Jan it's a must I have 2 daughters which I have placed placed them for the very reasons you have mentioned and I know I've done the right thing for them...planning for when we are not here it's not easy and I'm very involved I'm there I'm calling to make sure thing are are right by my girls...it's there future it takes greater love to help them thru this very difficult time bit in the end I can only hope I can die in peace

      Delete
  20. I worried about this a lot as Jamie has gotten older and even more so since his 18th birthday. Thankful his older sister and younger brother have both declared they are their brothers keeper.However,I began looking around and realized that in Florida there are several agencies throughout the state that offer " independent living" but actually have aides on the grounds of the apartment complexes to step in and help out when needed such as meals and what not. Jamie is not high functioning nor low functioning he is in the middle so it's even harder to place him even in the right classroom which can be very frustrating. From the replies I have read most of your children are still young so hopefully there will be a lot more options open to you than are open to Jamie at this time. I can still remember when he was diagnosed at age 2 he was the only ASD child in the county!!! So hang in there doors are opening everyday for our angels.

    ReplyDelete
  21. I loosely keep up with your daddy blog. Give all the hours of work and no sleep we get with our ASD child. I think the best thing for you is to start trying to get in touch with John Scott Holman. He is on many think tank boards for autism given that he has mild/severe autism /sensory disorders. He is a 20something functioning person that is out trying to help others like himself as a support mechnism. But dont get me wrong...it keeps me up too...
    Sincerely,
    Another protective dad.

    ReplyDelete
  22. I had my son at 44-so i am now 58 and he is 14.It is in the back of my mind every day-you are not alone.I so agree that we will need to see he is settled before we die-it would be awful to think he had to go through the loss of us and a move at the same time.So upsetting to think about-for me it is the worst part of having a severely autistic boy .

    ReplyDelete
  23. I worry about this endlessly, my older son has aspergers and my little son is severly autistic with just a few words. I dont think my older son will be able to do it all alone. my friends have stepped in and said they will keep him in the home and hire care takers, but who is to say that will happen! I must get my ducks in a row. nothing is promised!

    ReplyDelete
    Replies
    1. I got my ducks in a row when my daughter was 11 she went into residential care she loves it has a life that we could never give her now that she is 22 she has been moved back to Brooklyn she is in a group home she loves the thing is now she will nevr come over to us for dinner or thankgiving or anything it only seems like a small price to pay for her having a happy life but it hurts it really does she wont go anywhere with us not to the movies not too the store etc just with the group home aides when I hear of others having problems with there none autistic kids I want to tell them there issues are nothing compared t what our family goes through

      Delete
  24. I know my uncle doesn't have autism, but he is severly disabled with complex medical issues. My grandmother at 85 has finally consented to my uncle caring for him 5 days a week. (she had to, she has 3 types of cancer). But we had known for 15+ years where David would go and who would care for him. We are also in agreeance that he will be the only family member to inherit when my grandmother dies. He is the one that needs the money after all... not the other 5 siblings. Luckily for David he has five brothers to look after him, but there are some excellent facilities available if we are unable to care for him ourselves. I would do my research and put plans in place, you never know what is around the corner.

    ReplyDelete
    Replies
    1. I think it is wonderful that your somewhat large family was able to come to agreement about the inheritance. You really hear horror stories these days about what happens when someone dies, and it's great that everyone wants your disabled uncle cared for.

      Delete
  25. My child lives with severe epilepsy and not autism, but she is very limited in her speech capabilities and it scares me to death to think about what will happen when I am gone. Right now there is nanny, papa, myself and her sister who is three years younger than her. I figure I will outlive my mom and dad and as of right now her sister says that she will take care of her sister because she doesn't trust that someone else will be good enough. I think that this is good but that limits her in the life that she can ultimately lead so I am not sure whether I like that scenario or not. I do not trust our government at all so that leaves them out. I also worry that mom and dad will need to be looked after and I am an only child so most likely I will have to take care of them as well as my daughter. I have not come up with a solution to this so far so unfortunately I can't help you with that.

    ReplyDelete
  26. U r not alone, I am a single mother of 2, 1 who has been diagnosed, along with other diagnosis' & still waiting 4 the other 2 b, their father is in denial & has no clue just how difficult it truly is. I worry about this daily & I am on a fixed income, so it scares me even more.

    ReplyDelete
  27. As a mother of a 26 yrs old daughter with high functioning ASD, I think about this all the time. Although she is higher functioning, she is unable to be on her own. My younger daughter has already stepped up and will take her in when I'm no longer here...we just found out that my grandson has ASD also..he is 6. I have known this for quite some time but just recently got the confirmation. So my dear daughter will have her sister and her son both with ASD..I'm still looking into group/resident housing for her..everyday I stand on the word of God to get me through..nothing is impossible with Him!

    ReplyDelete
    Replies
    1. I have high functioning autism also both my brothers said they would help take care of me if the time came when I would need it pretty much though I only need help with money. That's so sweet of your daughter to do that

      Delete
  28. Be careful with group homes a lot of them at least here in Michigan take all the kids money and only leaves them with $10 for the month and you have to eat what they serve or not eat at all you also depending on the home can only take a shower 2-3 times a week, and they make you leave for the day but you have to come back at a certian time. I have a high functioning form of autism PDD I live on my own, but before I did we were looking at assisted living places there is one I'm on a waiting list for now part of it is assisted living part is regular subsidized housing. I am pretty indapendent I just need help with finances and stuff like that. All I can say do your research which it sounds like you are trying to do.

    ReplyDelete
  29. Of my four brothers that were on the spectrum, the one that still is... really is. And always will be. My mom is a global autism and brain expert, therapist, author yadda, yadda, yadda... but she is in Paris right now working with a family and can't answer your absolutely appropriate and important question. And while she's away, my thirty year old low functioning barely verbal brother is hanging with me and my four boys. As a matter of fact, if anything were to happen to my mom, he would be living with us permanently! Like you said, some of us are lucky enough to have family that will be there, and happily so! However, I am not now and never will be, my mom. My brother would miss her terribly, and there is no one in this world who believes in his abilities more than she. He would miss that too. I don't know the answer to your question but would love to remind you that it's going to be hard for our kids when we leave them. Period. Autistic or not. It's brilliant and important to think ahead and have a plan, one that you are most comfortable with. But I also think it's important to remember that it's up to your son, not his carers or the facility, to help him gain skills and find happiness. As low functioning as my brother is, my mom taught us to believe in him, and taught him to believe in himself, in a way that allows for a more comfortable kind of loving. Kyle is lucky that he has such loving parents! So just love him and try to always, always believe in him and his ability to find his own happiness! I don't know how this came so naturally for my mom. I used to think she was crazy. I would look at my grunting, rocking brother and think my mom was nuts for believing he could understand her lessons and her love. And maybe she was crazy... lucky us!! Because my brother IS gaining skills and DOES insist on finding his own happiness. Even if that means my boys have to roll their eyes and listen to another rendition of the song 'Through the Eyes of Love'... (why the heck did so many people remake that song??)

    ReplyDelete
    Replies
    1. Thank you for your comment. Your Mom sounds like a wise & caring woman who has not only gone a great job in raising your (severe ASD) brother. But in the way she has raised you as well. I have an 11 year old son w/ASD he has a twin sister & their younger brother is 8(ADHD). My sweet daughter at the age of 10 told me one day (out of the blue) " Mom, I want you to know that when you & Daddy get old & die, I'll take care of my brothers". I assured her that we wouldn't be dying for a very long time & that she is so sweet & such a great sister for even thinking g that. I went on to remind her that this is the reason why it's important to teach brother so many things & not do them for him. I also clarified for her that her ADHD brother would grow up to be completely independent & that she didn't need to worry about him ( the ADHD was a recent Dx, so I think she thought that it was like their brother's ASD). We never told her that she would be responsible for her brother, but I'd like to think that we've nurtured a closeness/bond between our children that these feelings would come naturally.

      Delete
    2. I forgot to give myself a name, but also wanted ti add that your brother is blessed to have you & I pray that God Blesses each one of you. I pray that my children grow up to be as close & caring as you & your brothers. Take care, Mama of3 in California

      Delete
  30. My daughter is 30 years old with Disablities. 5 years ago I did the hardest thing ever. I moved her in to residental. she lives 10 minuitse down the road and has 24 hour care. My daughter is on the Medicaid waiver which pays for care.
    Check out your resources now? My daughter Loves living Independtly without Mom and Dad. she also has really Matured. It was the Hardest but the Best thing we ever did. I Miss her not being at home some time but I Love the freedom that we both share.

    ReplyDelete
  31. Part 1

    First off, try to stop worrying. It might hinder you in your quest to make the best possible future for your son. Second... check out Temple Grandin – the cow lady. She too was severly autistic and she has several brilliant points to make regarding how those similar to her ++ should be treated. (Cows are her BIG interest..)

    If he has an interests – try to research that. Even if for now it is limited – it might grow (maybe a little help there to ensure that it ends up in the correct place rather than into something useless) into something that might help him gain employment. If he is interested in computers for example – programming might be something to try to get him into. Deteailed and at least in Scandinavia it is a growing rate of businesses that have found that ASD's is actually an advantage to have as employees.

    When you write 'severe' I can almost envision melt downs (first blog of yours I've read)++. So... I know you might have tried something like this but still – try to make the day predictable for him so that that is less stressful... though changes should be carefully introduced just so he does not get 'stuck' in the pattern which will in the end be far more negative than no schedule at all... might. Try to figure out what he reacts to... stress or sensory stuff. The last there are ways to handle... and so are the first... though neither might be easy... Cause point is – if he DOES have melt downs... not many who does not love him like you do ++ will willingly want to become his caregiver... So – if you teach him to handle them on a more manageable level... there might be more people that will be willing to love and care for him if the worst should happen.

    While he might go to special school ++... or whatever you do for him... ensure that he does know basic courtesy like saying good morning, handshaking, how to sit properly by the table +++ because any such might actually hinder him as an adult if he does not know it. Maybe he'll do it TOO often... but to be honest... that is better than not. Because, if he DOES do that they'll know that he's weird but that he's also trying his best. ... high school++ (college people are more school oriented and therefore more likely to forgive any 'mishaps' if he does know a lot about his 'subject') might actually not be a fun time for him – even if he probably won't go to a regular one... Try to teach him to do little things at home too – if you don't already... will also make him less 'dependent' on others – even if he might need supervision in everything he does.

    Also... he might at one point 'wake up' as he gets older. Just because you do not notice that he is processing information, does not mean that he is not. Sooner or later he'll start putting stuff together - its like a big warehouse with all kinds of different items... And then he starts sorting them into groups rather than items... ++ and maybe he'll build a car (metaphorically... or whatever it is called) at one point in his life.

    ReplyDelete
    Replies
    1. part 2

      .. The sibling thing is risky. One huge advantage is that they are likely to look after him, even if they are not his caretakers... so that if the staff treats him badly they'll be able to handle it. ... Because you can't just go 'he's your brother and will be your responsebility if we die before he does'... thats just cruel to both of them – as the sibling might start to resent 'Kyle' as a forced responsebility rather than love him for who he is.

      One thing you might do – is find out if there are others nearby that also have children/teens with special needs that worry about their future. Then you might come together as parents and create/buy a grouphome for them? Invest in something that will ensure that they have enough money... Then you'd not be alone, and you'll be able to bounce of ideas on people who also are struggling with the same system you are and many of the same issues. ... As for caretakers... the investment might actually help that (buying and renting apartments?.. something else?) ... then you'll be able to choose those caring for your son more specifically as well as giving yourselves a break from caring for him 24/7. He'll be happy to have his own apartment and be an 'adult' as much as he can, and you'll be able to give him more attention ++ when your visiting eathother... know that is in the future but...

      Temple Grandin – just check out the film... +++ She is a wise lady:) ... I also do not know how you think about his diagnosis (I've got the same - but I'm also high functioning) but I figured out some time ago that its just a starting line, not a box. Take into account his disabilities, give him the help he needs... as well as a goal (that is both possible and divided into lesser goals so that it is not unreachable or become a hinder of its own)... and nothing can really stop him from making his own space in the world. :) Good luck.

      Delete
  32. maximom@comcast.netMay 15, 2012 at 1:55 PM

    Actually, yes, you (and I - and all of these readers will need to create our own group homes. The states are NOT prepared for the number of adults TODAY, much less the glut that is coming very soon. The waiting lists today are years long so if you think the government is going to take care of it, you are wrong.

    I will be 45 next month, single mom to 2 ASD kids - 17 and 19. I will be starting a farm residence for biomed-treated adults including my son in the next few years. I have been researching it for years, and if the economy would get out of the toilet, we'll be on track.

    While there isn't a "how to" book, there are lots of folks you can talk to and places that will actually teach you. FRED is one such conference (online for $50) http://blog.sfgate.com/lshumaker/2012/01/17/community-building-101-for-adults-with-disabilities-fred-conference-march-2/ that can teach you how to do it. Bittersweet Farms in Ohio has been teaching classes for years to people from all over the world who want to open farms, and they have begun offering online classes for those who can't travel. There are others too.

    Yes it does suck that we as parents are left to take care of everything, yet again, but if we care at all about quality of life for our kids, it's up to us. As usual.

    ReplyDelete
  33. We are right there with you. #1 concern in my books. My idea has been to purchase a home for my son and set aside funds in a trust to pay for attendants and caregivers. I was hoping to find other parents we could perhaps share resources with. Perhaps we could rent out rooms of our house to others? Liability is, of course, a huge issue this way. I would stipulate expectations of the caregivers and of course have a guardian (most likely my daughter) and exececutor look over everything. There are so few options for adults with ASD and other special needs in our area. :( Wish the general public understood this.

    ReplyDelete
  34. I hate to say this, but my son is 22 years old, and my husband & I are in the same boat! It hasn't gotten any easier in figuring out what to do. I will tell you that we belong to the Regional Center (in CA), and they're supposed to help us with that one day.
    Actually, I'm having another situation related to that--ever since our son was 18, people have asked us where he's going to live (as if it's any of their business). When we tell them he'll live with us (because I don't owe them any further explanation), they feel a need to tell us we "won't live forever", etc. As if I don't worry about that EACH AND EVERY DAY!

    ReplyDelete
  35. I am 51, my wife 50. Our son, an only child is 8. This is a concern we wlive with daily. His aunts are older than us and the provision specifically for adult autists in South Africa is very poor. For the most part it would be in government homes for the cognitively handicapped, even if the child had a degree but was not functional in the world.

    We are still working on a solution and live with hope.

    ReplyDelete
  36. My formerly Pdd-Nos child is the only child as am I, and boy did thinking about this strike fear in me.

    The statistics say that over 75% of ASD kids will not live independently.

    Through Biomedical Treatment, my dd is no longer Pdd-Nos, she is totally recovered and soon to graduate from the 5th grade in a regular public school with no aide or modifications to her school work, with no quirks and lots of friends.

    I wrote a book called "Fight Autism and Win: Biomedical Therapies That Actually Work" that outlines her recovery.

    ReplyDelete
    Replies
    1. The authors of this book offer it at:

      www.fightautismandwin.com.

      Delete
  37. OMG... After reading this it felt like I was looking in the mirror at my own life. I am in my 40's with a 25yo high functioning adult... and everything you have said has crossed my mind..I am a Nurse and I have researched opening my own home for autistic adults but WOW.. there is so much to consider.. and then there is the fact that his is an only child which puts us on a whole other planet..There are a couple of colleges in the US that are like Life colleges. They are for HF ASD but this is what we are considering now. The cost is outrageous and my husband is having a hard time wrapping his mind around the 80k for 2 year program that is not at all funded or assisted by anyone..Our son was very happy, well adjusted and interested in social groups throughout high school but as he gets older he is becoming withdrawn. He is realizing his situation and has no one because he doesnt understand how to be a friend. It is tough.. He is so kind and funny and loving but it is all on his terms..anyway... If you are interested in what I have learned I have posted some links below... Prayers are with you...
    1.) http://www.adnetonline.org/:/HTML/Topics/Asperger/AS%20programs%20for%20young%20adults.pdf
    2.) http://www.autismcenter.org/vocational.aspx#32

    ReplyDelete
  38. I also worry about this... for all of you - I don't have children. I work with children with autism and it's unbearable to think they would be lonely one day.

    I think we need to help create an organization of, by and for people with autism where high functioning people play a great role in making it work and keeping it going. This society could have a base one day in every community in America or even across the world.

    The recently published story about the 'first' person with autism really made clear the need for a community of people who know and grow to love their ASD neighbors. Perhaps this could be a working concept at the base of this society.

    ReplyDelete
  39. In answer to Peggy's comment,I have found that there is too great a difference between people who are at the milder end of the spectrum,and those with more severe autism.The differences are too great.I know they are between my Aspie sister,and myself.

    There is a real need for an online community for parents of,and people with,moderate to severe autism.It just isn't there.It can be very lonely,and the last place you want to go is a message board populated by people who talk about how they can pass for normal.

    I will just say I am as old as some of the parents here,and I have an autism diagnosis somewhere in between Asperger's and Autistic Disorder in severity.For most of my life,I was just barely able to function,but was not capable of a lot of basic stuff like hygiene.I lived with my mother,who died in April.

    I also have a lot of other problems,both medical,and brain related,including serious learning disabilities,and nonverbal developmental delays.I can't say it's the answer for everybody,but if your child has a lot of medical issues,besides autism,please look into genetic,and metabolic testing.There are now a number of metabolic diseases known to present as autism.If they are corrected,your child won't be cured,but the improvement should be enough,so you don't have to worry about this stuff.

    I now know I have a combination of three different metabolic problems,all related to folate metabolism.Including this recently identified form of cerebral folate deficiency.

    The main treatment for this,is a prescription drug called leucovorin.Please don't go running off and ask your doctor for it,unless you have had the tests that prove you need it.

    For me finding out I had this problem,was the end result of three years of work,and testing,with multiple doctors,and hospitals.

    I started on it almost four months before my mother died.My mother had a major stroke,that damaged two thirds of her brain.Less than two weeks later,my mother was dead.The hospital had somehow found out about my diagnosis,and had set things in motion to put me in a group home,without my knowing about it.My landlord,who has an autistic son,stepped in at first,but what really kept me out of a home,was when the case worker saw the tremendous improvement the leucovorin had made on me.

    I am still learning how to function on my own,and it's now very lonely,but it's better than being in a home.I was also born with severe childhood onset celiac.I know if I were in a home,they would never accommodate that.

    ReplyDelete
  40. Ok here is my plan if you can call it that. I plan on having my son and his friends live together in a group home that we provide. So we will buy a second house and donate it to a group home organization with the contingancy that they allow my son and his friends live there until they pass away then they can use the house to help other kids :)

    ReplyDelete
  41. Is it true that any decent living arrangement facility for 18 years and up would have an insanely long wait-list? I have a nephew with autism, and I am learning more about him and autism every day. Does anyone know about any good resources in Houston, TX?

    ReplyDelete
  42. Not to add to your worries, but I would think that time is of the essence in general...the same plans need to be in place right now if God forbid, you and your wife passed away tomorrow in an accident.You are great parents and very resourceful...I am sure you will make the best decisions and plans possible...just start looking :-)

    ReplyDelete
  43. I guess for me and my wife, we just don't have the answers...we are struggling even now, so we just focus on what we can do at the present moment. It may seem irresponsible, but the more we worry about the future, the less we have the energy to handle our current situation. Just a thought :)

    ReplyDelete
  44. My daughter is 14.Years ago I attended conference which addressed housing options for our kids. My husband and I already assumed our daughter would live with us. No other option entered our minds.At the conference, and adult young woman with autism stood at the podium and asked all us parents in the audience, "How many of you want to live with your parents?" This completely changed my outlook. I pictured my daughter as the 6 year old she was at the time when I attended this conference, I didn't project to the young woman she would someday be. lol I had to leave it open to what she wanted. If she happens to want to live with us, this would make me happy. I also realized that at some point, no matter what I or she wanted, it would be less painful and in her best interest to transfer her to a home. I decided I can monitor the care she would receive for a couple decades before I pass instead of hoping it's great when I die.I also figure there would be less pain for her in a sudden seperation of our deaths if she has another life/routine in place. The other thing we did was not put all our eggs in one basket.We have one person who will manage her finances. Another person who will oversee other details of her life. And, I have built a community of people who are willing to call in and talk to her once a month. I think of this as her safety net. I will trust the individuals in the home to care for her, but there will be a network of people who will agree to call and check on her once a month. It's so easy, anyone can agree to this. I'm not asking them to care for her, to pay for her or anything else but to call once a month and check on her and more importantly, her caregivers will know a handful of people are calling once a month to make sure she is ok and will report if she is not. We also have a special needs trust, of course. I also took out tons of life insurance for both of us. We weren't handed an easy kid and the solutions aren't going to be easy, but I feel I have a drive and creativity to make things as best as I can for her. She has an older sister who is 18, but not likely to take care of her and in all honesty, it's not really fair to put that expectation on her. Secretly, I'd love for her to step in and be able to, but that is not my call so I am developing a community and a plan for my girl and for my peace of mind. Try to find a plan to replace the fear. Talk to parents who are ahead of you and going through this process. We are truly the best resources for eachother.

    ReplyDelete
  45. It is something I worry about often. My daughter is verbal and not as severe as some other ASD children I have known, but I worry. My mother, Sister, and neice also have ASD and live productive lives. They are also all verbal but what worries me the most is how will she be happy. My sister has a hard time with romantic relationships and friends because of the severity of her meltdowns. Since she left the army, she has had trouble keeping jobs and apartments. She is currently living off her in-laws. I dont want that for my daughter. She's almost 8 and I worry what would happen to her, even now. Life is never certain. So no, you are not the only one.

    ReplyDelete
  46. This autism mommy is kept up all night by these thoughts as well thinking of our 15-year-old severely autistic son, with no siblings. We dreamed of keeping him home with us forever, then family coming to "swoop in and take care of him" when we are gone. But the family is spread out, the cousins his age have met him once or twice in his life. The aunts and uncles are the same age as us, realistically won't be here to watch over him. We briefly considered making another person to watch over him (another baby) but were then worried, what if we then had 2 with autism, and there is no guarantee that a sibling would be able to care for him, or would be willing to, or would have a spouse able/willing to care for him. But yes, how do we know the right time. Please post when you know what time is the right time.
    LMH, mom of T4

    ReplyDelete
  47. the movie, "fly away" helped us alot. yet, this was hollywood, then there's the horror story about the young man who wandered and was beaten almost to death. as heart-wrenching as all of our future seems, then there are children around the world with even more dire straits, "children of the stars" and the bleak out-look for autistic families in china. wouldn't it be a perfect world if our crisis became the thing that made us return to the "village community". (rambling again)

    ReplyDelete
  48. I am a single, disabled 57-year-old mom of a 19-year-old autistic daughter. We have no family. I live in fear everyday of my life about what will happen to her when I die.

    ReplyDelete
  49. I am a single mom of a 28 yr old severely autistic child. He is also an only child...his dad is involved in his life, but he is remarried and lives in a very small town with no special needs activities or placement opportunities. I, too, have the trust in place and thankfully, plenty of nieces and a nephew that will include him in their families. I have placed him on a waiting list in a home that is less than 20 minutes from our home. I've spoken with older parents with "kids" in their 30's and up, and they advise me to place my son BEFORE. while I am still here and can visit him. (I know, tomorrow is not promised for any of us) This haunts me every single day of my life even though I am confident of my choice of living arrangements. I don't think there's ever a "perfect" choice...we just do the best we can!

    ReplyDelete
  50. I live in the UK and my son is almost 17, I'm already looking into him going residential at a school to prepare him for later in life. I want to put this in place now, also he is ver challenging and I have two daughters 12 and 14. I need to get him into assisted living when he leaves at 19 or a residential college as m daughters have a very tough time and can't do "normal" things. I have to look at the whole picture, I don't push him, he needs to get more independent and I end up doing everything to keep the peace. I'm very scared for the future for him, and yes I have many sleepless nights over this.

    ReplyDelete
  51. oh Autism Dad,

    i know. Funnily i am sitting in my room at our assisted living center in India as i type this.
    i have a sister on the Autism spectrum and we siblings aren't immortal either. And incase people are thinking, well atleast till we die....one of our recent residents lost her mother quite suddenly - fine one day, gone the other....so one can't plan enough!
    her father is consumed with guilt right now because he never wanted to "put her away" but here she is. So I did what you are thinking about. Started our own group home. So challenging both in terms of funding and the right kind of staffing. But we are a year and a half old now, and hopefully here to stay. So here's to our dreams:-)







    ReplyDelete
  52. Our son is nine also. The question itself is heartbreaking. On the other side, we might get Alzheimers. so... the march is on to the inevitable. One thing is that Obama's healthcare plan may cover this, as it is considered an illness of sorts. Maybe the government, faced with an oncoming avalanche of autism adults, will have a pro-ative President who will ensure homes are created. almost everyone knows an autistic child. Lastly, i put money into the lottery twice a week. Sure, long odds, but at least there is a chance in hell.

    ReplyDelete
  53. i dont no were he gose to school .some autism schools have trasntion programs whenn they are teens were they start learing indapent living skills even if it in a group hom one of my friend brother is conder low f non verble untill he moved into this programe they couldnt get him to do anything at home he throw tantrums an what ever since being in the group home he lost weight looks great has a reg bed routin eat atr the table like a human being with forks an so on helps with lundrey an so on .sopmetimes when a child is lf the parents tend to over baby them an not push thing to adviod behavior but iut not going to help the child once they become an adult .it like with any kid litte kid litte proublem big kid adult bigger proublems ,i no there very good group home an if you have close family member that would pop in anytime for vist an take out on weekends then your loved one will be tread good .my parents thought i would never be able to live on my own .i been doing it with some help for 2 years took me till my 40s but im doing it .so just do whatever u can so he can be the best he can be

    ReplyDelete
  54. Austim from Mommas' viewJanuary 26, 2013 at 11:48 PM

    My son just turned 5. I have thought of these things too and cried over them. I had to stop looking to far into the future because I was driving myself crazy. We don't know yet if my son will be able to live on his own but that is my hope. I know my daughter who is 8 will proboly take care of him because that is just who she is. She is a worrier and love to take care of him now. But that doesn't mean I want her to take over the responsability of taking care of him, but I will not tell her no. The way I see it family takes care of family, but not without help. So, I really don't know what to do. He also has a younger brother 4 months old. So between the both of them I would hope they would share the responsability but you never know. Hopefully I will come up with something when we know what direction he is going in. Right now he has come such a long way and is learning more and more each day. Wishful thinking going on over hear.

    ReplyDelete
  55. My soon to be 14 year old son is severely autistic/m.r. Both my husband and I come from small families and none of them would step up to the plate and help in the care taking of my son. I envy those with families that are supportive. I have 2 other children and I am not asking them to move him in with them,when that time comes. Just check up on him where we decide the best place for him will be. I understand both feelings of people saying,"How dare you impose on your other children" or "This is your family and is it so wrong to honor family obligations?" I have lost my beautiful 18 year old daughter in a car wreck in 2007. She was the only child that said, "He is my brother and I will take care of him, he will live with me. I never expressed worry about his care when we were gone to her. She was just the most loving caring person ever. I told her I couldn't expect her to do that but did ask her if she would check on him frequenty. Her reply was,"No way, he is living with me!" I lost her. I decided to include this for people who assume that nothing like this would happen to them and not to make any other plans. Yes I have 2 other children, but the daughter I lost was the only one I felt most comfortable and confident in my son's well being. I too wish there were pioneers in this dilema of of our childrens' care and well being. We're all fumbling in the dark. I love my son but I wouldn't wish severe autism on my worst enemy and ironically that worst enemy is autism itself.

    ReplyDelete
  56. I guess I should tell my situation. I'm the older brother of an autistic 23 yr old, and there was never a doubt in my mind I would take care of him. And from a very young age I knew it was my responsibility. I was the 2nd to the last child born and my younger brother was the last. So in the end, it will fall on me whether I like it or not. Putting him in a home is NOT an option. I would never be able to live with myself, wouldn't be able to look at myself in the mirror. It took me a little while to figure out that my parents did NOT know this and had worries. So I simply told them "Of course I am, and will be, my brother's keeper." and that was the end of it.

    My mother had to quit her job to take care of him and we became very poor. Making matters worse, my father got hooked on dope really bad to cope with his family problems. My family's resources were drained and I was never able to afford to go to college.

    My father recently had a stroke and is classified as disabled. He can no longer seek employment, but he does get disability which helps out. My God mother who used to provide back up support died yesterday. I doubt out of her nearly 1 million dollar estate she left me a dime because she put her grand-kids first.

    I have moved in with my family to help them. How do I cope? My father being harsh to me all my life made me strong and my mother's love taught me morality. My parents also taught me to protect my younger brother.

    You don't have to treat them like my father treated me, but teach them to stand on their own. Do NOT baby them, just protect them. And it is that strength you have to teach yourself and your kids. You can not let yourself be overcome with emotions or you will lose site of the present and fail to act to secure your future and that of your kids.

    I hold a full time job, I blog for extra income, and I extreme coupon to put food on the table. I encourage my father to walk the straight path and he is better with money, though he is still an ass. I even learned to cut hair so I could save on haircuts for me and my brother. And most of all, I have pushed back the idea of me ever having a family until things are stable like they used to be when I was an only child and my father did not turn to drugs to cope with having an autistic child, and my mother had a salaried job.

    Knowing that I'm a pillar of the family I take care of myself - no smoking, no alcohol, no stupid antics that will get me arrested or killed.

    I know I have sacrificed so much more than most siblings, but I'm trying to show you that your other children can be really strong and can step up especially if you teach them to be strong and build family bonds between everyone.

    Teach your children to protect their disabled siblings and be strong and they will protect them and be strong for life.

    And on a side note, I am almost willing to bet that most people choose to take care of their brother/sister verses a group home, especially if the sibling is not violent.

    And if the child is violent like my brother used to be, you can not passively accept it. Do everything you can to instill peace in the child's mind and you will thank yourself later. Even the worse of disabled kids have triggers, you just have to learn them and then avoid the triggers.

    ReplyDelete
  57. My 23-year-old son has severe autism & lives in a group home nearby with 4 other young men with autism.Early on, I felt if K ever "ended up" in a group home, that I would have failed him.
    K was diagnosed at 2 w/ a "communication disorder," my mission began to save my son.He was severe: non-verbal, head-banging, plate-spinning, never slept.
    K had all the biomedical interventions/"cutting edge" back then.He had at-home ABA 40 hrs/week.
    At 6, K rode the regular school bus (with an aide)and attended regular kindergarten at his neighborhood school.
    At 7, K started having seizures and lost most everything he had gained; he was moved into a "special ed." class.
    As he got older,his testosterone kicked in;his chronic constipation (since a baby)continued, his aggressive behaviors increased, he grew.
    At 13, K was in the most restrictive environment in our county school system, spending his day in a padded room (for his tantrums) with his aide (who adored him)and tried to keep him happy with low-cal snacks and Sesame Street movies.
    At home, we had 72 holes in the walls from his outbursts; our 2-year-old would hide under the table from him.
    When K turned 14, he movedinto a nearby group home for teens with autism.
    I was so worried and scared; could he make it in a group home? would he be happy?
    Fast forward, K. graduated from a private school for autism at 21 and two weeks later moved into an adult group home close to my home.
    It is not perfect; he comes home on a regular schedule; he has the ID waiver and I run his consumer-directed program whereby I hire Companions who take K out in the community -- he volunteers at a church thrift store for an hour one day, then goes hiking in the park, then lunch, then to a private skills development center where there is facilitated recreation and vocational skills practice.
    On Fridays, a different Companion takes him swimming at the YMCA (he's up to 45 minutes non-stop) then off to Five Guys, a hike at the river, then Starbucks, then back to his group home. I get him 2 days and I look forward to these days and am so happy when we are together.
    I talk to him daily, usually twice daily and I know all the staff, house mgr and division mgr. They know my expectations for K (clean shaven, bathed, groomed, active and out in the community when he's not out with Companions or me) and this is something that I think about and do every day. And it stresses me and sometimes when I take him back and he runs upstairs and looks out his bedroom window at me and we wave and blow kisses, I have to pull over down the street from the house and cry for awhile.
    What I've learned: Kendall has matured and become more independent; he likes/requires a strict schedule and routine; in fact, he thrives on it.
    All group homes are not the same. This is important. Don't believe the brochures or the websites. Visit the homes, look at the young people who live there, look at their rooms, talk to the direct staff people away from the tour guide. Your gut will tell you if this is a welcoming place.
    Get it on paper the ratio of caregiver to client. Ask what they did last weekend or on Wednesday; get specifics.
    Someone Always has to lay eyeballs on your child. If you just call, you may hear all the good stuff; you have to inspect what you expect.
    sorry this is so long.
    God gave me my son and he is mine. I am 55, a widow, with a 15-year-old. I know that I cannot work and have K. with me all the time. I don't think he would be happy with me all the time.
    He likes to go and do, just like everyone else.
    This is all I know at this point. I stress and worry daily about my beloved son.
    But, I know that none of us is guaranteed tomorrow.
    God Bless Every One of us special parents who are truly exceptional.
    In the end, I believe our time on this earth is only temporary and my family will reunite in Heaven where K. will not have autism and I will not be the stress monkey that I am today.

    ReplyDelete
  58. MY brother is in his mid to late 40's, and he has a severe case of autism. I met him once or twice. He lived with our mother and his dad. I didn't meet him or her until I was 30. She passed away 7 years ago. His dad cares for him 24/7 with no help. I live halfway across the country and am not financially able to help, and not physically or emotionally capable. ( bipolar II disorder). So what happens? There's no plan for him! They didn't have a plan! So yeah, you all, if you can should start while you are young, so that you aren't unprepared for that eventuality.

    I'll admit, I am upset. at 51, with my own health issues, I can't envision being the caregiver he needs, nor should I have to be. But what, do I hide, and let him end up in the street unable to even care for himself, or in a really bad place? Why are there no people to help people like me, help his dad find him a future?

    ReplyDelete
  59. California has done very little to support severely autistic people in their homes. Families are crumbling under the pressure and stress to care for their autistic family member. Without a doubt, radical legislative action must be enacted to fund more homes for severely autistic adults with special healthcare needs. Drugging our autistic children has not proved to be beneficial. Yet, this is what is done to them when they are placed in out of home settings. They are given a chemical lobotomy. Also, hospitals are not equipped to deal with autistic patients. Perhaps shutting down state hospitals is not the solution, since it appears there is no place to go for these autistic people.

    ReplyDelete
  60. I have gone through it all with my son who is 33 now. He can speak, read and write and use a computer at age 16, but as he aged things changed, he got away fr the computer, his only outlet and started lying down, he went into a depression at age 20. Dr. put him on medication, but by age 21 I realized he must be placed somewhere, the self care was gone, father died when he was 16, sister married and living in another state. I placed him in a GH 4 miles away fr me and was there wkly. After 6 yrs the care wasnt the best and I saw he needed more care, better care, I wanted drs and nurses around him, not 8.00 an hr care takers. My son has no medical problems, was born with exceptional good health, it was all in the head problems and needed caretakers who really cared about him, not to be put down or neglected in any way or be able to run away which happens all the time in GH's. I found a Health Care Facility and he is safe and gets good care which is what all parents want to be sure of when their gone. He collects his father's SS and medicaid adds the rest and thats how most live in these places. I visit him wkly and order food in, those are his best meals and eats all of them without a problem. There arent any real good places for the autistics, our choices are only GH's with 6 to 8 yr waiting lists, Health Facilities, Nursing Homes and last but please never let it happen, A State Hospital. Its sad but true, we are alone with this problem, I've done it all and even though he is placed for 12 yrs now, I cannot accept his quality of life which is very limited in a Health Facility, so my tears are always there when I think of him.

    ReplyDelete
  61. This comment has been removed by a blog administrator.

    ReplyDelete
  62. Autism is a disorder but it’s not like it can’t be treated. There are certain children who find difficulty in chewing and biting. The Jaw Rehabilitation Program is a step-by-step program of treatment that is developed to bring significant outcomes in enhancing biting and chewing skills.

    ReplyDelete
  63. theraband products are used for rehabilitating and restoring muscle for improving conditioning.

    ReplyDelete
  64. What type of group homes and programs that are available depends on where you live. Some states are better than others. NJ is horrendous. Waiting lists for years and years.

    I know parents in Mass. that get their kids into the residential portion of the private ABA schools/centers so they can go right into the group homes when they age out under IDEA. Personally I think these groups homes are simply babysitting but some parents have to do it.

    What happens when they are adults is a nightmare and what will happen to all of these kids in a few short years is overwhelming to think about. Even if you have covered all your bases the group home situation still sucks.

    ReplyDelete
  65. You most certainly are NOT alone in thinking this. Our daughter who has autism is 7 and her "typical" little brother is 5. I think about it all the time. Will he be able to take care of her when we're gone? What if something should happen before they're "grown"? I stress about it CONSTANTLY. Thank you for writing this blog. It helps to know that there are others' thinking the same things, even if we don't have the answer...

    ReplyDelete
  66. My husband and I are 48. Our son is 23. I think about this every day and night. He is our only child. There is no one to take care of him. The group homes are horrible. The staff get paid a low wage. They don't care. If somebody has as answer PLEASE let me know. I have started praying he goes before me i can't leave him to the wolves. What do we do?

    ReplyDelete
  67. http://www.misericordia.com/ One of the only places I know that does it right. It's in Chicago - maybe they can give you guidance if there are other places like this in the Northeast. Many parents get their kids on the waiting list 8-10 years ahead of time. This place is good and the residents are treated with such wonderful, compassionate care. I've visited many times and have always been impressed by the staff and the high regard and care given to people in their care.

    ReplyDelete
  68. I have worked at group homes for many years. We gave excellent care. The natural progression of things - you raise kids till they become adults. He becomes an adult, you have given him wings, let him fly. I never once babysat these residents. We worked on goals every single day. As a parent you attend all the meetings and approve the goals and track their progress. But I cant tell you what to do. Each person has their own path.

    ReplyDelete
  69. First, you get huge credit for thinking about and planning for this now.

    Second, there are many options. I work with parents every day to help choose the best residential setting for their child/adult with ASD, whether the need is now or 10-15-20 years from now. I'd be happy to help you.

    Third, here are some great resources to check out:
    -- Communities to Know, a reference for planned residential communities - http://ltoventures.org/communities-to-watch/
    -- FRED (Farms and Ranches Enabling Persons with Disabilities) Conference, March 28-29 in LA - http://www.fredconference.org
    -- Agricultural Communities for Adults with Autism (ACAA) - http://www.ac-aa.org
    -- Autism Housing Network - http://autismhousingnetwork.org/

    Last, your son has a human and civil right to choose his residential setting from every possible setting, and to utilize Medicaid state plan or waiver funding to pay for his services and supports. The Centers for Medicare & Medicaid Services (CMS), and a lot of state and federally funded agencies and self-advocacy groups will tell you the only acceptable option is him living in his own home or apartment with whatever supports are needed to assist him. These options simply don't work for everyone. He has the right to choose whatever setting he (and you as his parents and primary caregivers) chooses. I can help with this issue as well.

    ReplyDelete
  70. My God this amazing!. I have the same problem finally someone came out with the question! I have one daughter and she is 22 years old. Every night I cried myself to sleep thinking what is going to happen to her when I'm gone. Sometime I think hopefully God takes all at the same time, but at same time that is not fair for my daughter.

    ReplyDelete
  71. Your not alone, I thought I was the only one that thought about the kids going before me. I have 2 Autistic boys 4 & 6 and worry that they will be separated once I am gone. I don't have the answer but they are still young and hopefully I will find a solution one day.

    ReplyDelete
  72. My biggest worry times four! we have a 19 year old with down syndrome and a 8,9 and 10 year old with autism 2 severe, we have started our oldest in a CSS program and we are hoping that by the time he is ready to move out or we have died that we will have a purchased a house that will be left to the children and that CSS will of started to allow 24 hour services so that we could have the house fully staffed, also in our area some families of DD and autistic children are buying homes together for their adult children to live in and staffing it or taking turns staying in the home.

    ReplyDelete
  73. I think that the first thing you do is to join with you son rather than all the time talking and laughing about him like he is some kind of freak. Enter his world and you may just find that he will entrer yours.... but you have left it all woefully late....

    ReplyDelete
  74. My son is only 4 but we think about this also. One of the best solutions I've heard (so far) is to join together with other like-minded parents to purchase our own group home that we control and run.

    ReplyDelete
    Replies
    1. I agree. But need help on how to start. Anyone has experience? Please give me some guiding

      Delete
  75. No you are not alone in this worry. It is very good idea to start thinking about it now. We have 2 young adults who already live in a residential facility, but I still worry about who will really look after things once my husband and I are gone.

    ReplyDelete
  76. I can barely type for the tears that are blurring my eyes right now. Every night I think of this and every night I go to sleep without any real solution to this problem. Kaiden is only 4 having had him late in life this question scares me to death. I have other children but I would never want to put the care of my little guy on their shoulders. Like most parents I would do anything and everything I can to make sure he's happy and settled when im gone, I just dont know how to do that. Thank you for voicing what is in our minds.

    ReplyDelete
  77. Wow I thought about what would happen with my girls if I passed... Now with my son 3, with autism, I haven't thought about it. Idk what to think now. Now I'm nervous and don't know what would happen to my son! I'm so busy with him I haven't thought about it. I really don't know!

    ReplyDelete
  78. Autistic persons in California who need nursing care supports to live at home have been forced to accept out of home placements in violation of Lanterman Act. This practice must stop, as parents of autistic persons with epilepsy have a right to have the supports and services they need to keep their autistic children or adults at HOME.

    ReplyDelete
  79. God forgive me, but my plan is to take him with me when I am terminally ill. In the car with carbon dioxide, both of us together.

    ReplyDelete
    Replies
    1. This is a horrible plan, dontyou dare , i suggest you look for alot of help , theres gota be some support

      Delete
    2. Please don't do that. There is a GOD in heaven and there is hell. If you don't believe...okay but don't risk waking up to find he has gone to heaven and you go to hell. He will have his normal mind in heaven and only be sad over missing you. Please there is a better way. I am trying to think of something to help all of us. I will post information I find here all the time.
      I always cry and worry for this. In fact, I am crying right now. It hurts so bad.
      It really hurts me a lot to think of him alone without me. It makes me so sad and I can hardly take this pain. But I believe in God and he will make a way.

      For all we know he might have a big "healing" for all of them on the way.
      I always wonder what would happen if all parents would cry out to God and Fast (no food only water and tears). Would he hear us? I will start a FB page and maybe we can try something spiritual while we work on the tangible! Amen!

      Delete
  80. Have you heard of/know anything about the Foundation for Autism Support And training? I will start asking my customers (assisted living) ? With that said, these posts make my heart hurt. If you were to start running a group home there would be no lack of residents!

    ReplyDelete
  81. i was a H.F.A ina grouphome when i was a preteenager and i was raped and placed by Gay roomates who forced them self on me im not saying all gays were bad but she wore, all they did was tell me two gay roomates that its wrong to be gayin the firstplace thats only 4 words they told them they dint punishthem they dint call the cops. this is the kinda stuff that happens with group homes they only call the cops when you run.

    ReplyDelete
  82. Let's face it. California is closing down state institutional settings like Fairview Developmental Center and Agnews, and Lanternam, yet, the state's primary agency governing the care of disabled is complete SHAMBLES. That agency is Dept. of Developmental Disabilities (DDS). DDS farms out their mandate to help disabled citizens to 21 regional centers around California. These 21 Regional centers are also in complete shambles. A front. A ruse to helping disabled. The one question investigative reporters aren't asking is IF DDS can't even control or protect the services at the California's state developmental centers, then what is the logic behind CLOSING California's Developmental centers and sending all the disabled into HOME based community centers, when currently, the HOME BASED community centers aren't meeting the needs of the developmentally disabled IN THE COMMUNITY RIGHT NOW?

    ReplyDelete
  83. As I write this comment, tears fall before me. My wife and I are both 55 yrs. old and have pondered the same questions as Autism Daddy and others who have commented here. Our eldest daughter is 17 yrs. old and has mild mental retardation, our youngest is 11 and has severe autism. We live on the island of Puerto Rico and the best facilities for autistic children our for well to do families, for the rest it's practically non existent. I've been thinking about relocating back to the states to get the best care for my girls as for myself as well since I have Cerebral Palsy, but I'm mentally drained and physically I don't have the strength to be running around to find the help they need and I don't know which state would be the best choice. If anyone out there can put me on the right track I'd deeply appreciate it. You can email me at jimmy215821@yahoo.com. In the meantime let's try to keep our heads above the water. God bless.

    ReplyDelete
  84. The day i found out my child was autistic, my whole world changed. My first thoughts were, "No one will ever love and take care of my child as much as i do. Where will my child end up when i pass away?".

    ReplyDelete
    Replies
    1. You are not alone in your feelings. I to feel the same way. Our families have been no help. Right know we take each day as it comes. It's all we can do.

      Delete
  85. Golden Heart Ranch® is dedicated to building an intentional residential community where special needs young adults can live, learn, and work side-by-side in a harmonious and caring environment that is emotionally and physically safe.
    Fact: 80% of special needs adults are not able to move out of the home upon exiting the school system, because there is nowhere to go ... and the problem is growing.

    GHR is on the west coast so it might not be an option for The King, but it might be a great starting point to create an east coast version. I think it would be worth it for you to check out their website to get an idea of what exactly GHR can provide families who have children like ours.

    ReplyDelete
  86. Elizabeth Benton This is WHY we need to start a PAY IT FORWARD GROUP......where younger parents agree to take one extra child when the parents cant care for them anymore and so on and so on and so on...I would LOVE to take one more child/adult knowing it would assure my son stays OUT of a shit hole! Please someone start a FB page for this!!!!

    ReplyDelete
  87. Section 811 Supportive Housing for Persons With Disabilities
    The Section 811 Program provides grants to nonprofit organizations to develop and construct or rehabilitate rental housing with supportive services for very low-income persons with disabilities. The companion Mainstream Program awards funding for Section 8 Rental vouchers and certificates to very low-income families whose head, spouse, or sole member is a person with disability. The Section 811 program is designed to enable very low-income persons with disabilities to live independently by increasing the supply of rental housing with support services.

    The program provides interest-free capital advances to nonprofit organizations to construct or rehabilitate rental housing with supportive services for very low-income persons with disabilities who are at least 18 years old. The advance remains interest-free and need not be repaid as long as the housing remains available for very-low income persons with disabilities for at least 40 years. The program also provides rental assistance for project residents. Residents pay 30 percent of their adjusted gross income in rent while Section 811 pays the difference between the monthly approved operating cost and the rent received from the tenant.

    Funding Category:
    Interest-free capital advances for the construction or rehabilitation of rental housing.
    Target Population:
    Very low-income persons with disabilities who are at least 18 years old.
    Funding Available:
    For FY 2002, approximately $117.5 million.

    Application Information:
    For an application kit and any supplemental information, please call HUD's SuperNOFA Information Center at 1-800-HUD-8929. Persons with hearing or speech impairments may call the Center's TTY number at 1-800-HUD-2209. When requesting an application kit, please refer to the Section 811 Program and provide your name, address (including zip code), and telephone number (including area code). The application kit also will be available on the Internet through the HUD web site at http://www.hud.gov/grants and from the appropriate Multifamily Hub Office or Multifamily Program Center. Application deadline: June 5, 2002.
    Contact:
    Contact the appropriate Multifamily Hub Office or Multifamily Program Office. Gail Williamson at HUD Headquarters, (202) 708-2866.
    Links to More Info:
    HUD Section 811 Program Description

    HUD Section 811 NOFA

    HUD SuperNOFA

    Administering Agency:
    HUD

    ReplyDelete
    Replies
    1. I am also in the same boat. I have a 27 year old Autistic daughter, and I have been in tears lately, not knowing where she will be if I should pass away or become too sick to look after her. Thank you for this page.

      Delete
  88. I have a daughter who is 6. I know it sounds like I am heartless, I always pray that she passes away before me.

    ReplyDelete
    Replies
    1. I once too had that same notion as you before. I ask myself, what about my son whose a young adult person. with no one to really love and care for him as his mother does. no family members to really step in and step up to the plate, when my time comes. I find that I have to do all that I can to love and be there for him, until when the time comes.

      Delete
  89. "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..."

    Actually, there are, but many of them are not diagnosed accurately.

    There is no good evidence to show that autism is actually increasing. However, there is *very* good evidence to show that it's being diagnosed more often.

    In the 1960s, the diagnosis of 'childhood psychosis' (now an extremely rare diagnosis) used to be about as common as a diagnosis of autism is now, and the vast majority of those kids would have met criteria for autism today.

    So, my question is: what happened to children with 1960s diagnoses of 'childhood psychosis' once they grew up? I'm guessing many of their parents were in the same boat as you.

    ReplyDelete
  90. Hello,
    I know that this is old but I wanted to respond to your post. I have a 16 year old brother with autism. I am a 20 year old female who is still in college. I have my life planned around my brother and I wouldn't have it any other way. I adore him. I have two other siblings who are 19 and 13. When my parents die, I will take him in. My brother and I are a packaged deal. He is very verbal and is a sharp boy. He picks up on everything, likes to know what people are doing for that day and makes my day brighter. He is a social butterfly. We also call "King" also. He is the reason why I am studying to become an early childhood and special education teacher. However, my brother can't read or write. I couldn't stand by and watch him be taken away by the government while I had the opportunity to care for him. I love him too much to let that happen and I have heard stories about family member's special needs children being injured in government institutions.

    ReplyDelete
    Replies
    1. Anonymous: My daughter is 22 and my autistic son is 11. When she was 14 and he was 3 she told me that she would take him when we are gone. You sound like her. She loves her brother and couldn't imagine her life without him. I am sure you are such a comfort to your parents. Bless you!

      Delete
  91. "What happens with our kids with severe ASD after mom & dad are gone?"

    This isn't just a concern for 'severe ASD'. I'm a high functioning autistic adult (high IQ, good verbal skills, etc) and I have no idea how I'll survive when my parents are gone. I'm trying to learn independent living skills, but who knows if I'll ever be able to actually live on my own? I mostly just hope my younger NT brother can help support me if I can't survive on my own.

    ReplyDelete
  92. I worry about this every day. I'm a single mom now. I worry what happens if I'm out without him, and I get in a car wreck and die or am hospitalized. Who will take care of him, what will happen to him. He is high functioning, and verbal, but still has other issues with the autism that makes it necessary for someone to be with him.

    ReplyDelete
  93. This would be like a strange person who's always there, always watching, and never, ever leaves. I hate it - I have no idea - no idea, when I can't even feel comfortable leaving our boys in the care of anyone else for a couple of hours.

    ReplyDelete
  94. See an Estate Attorney who is experienced in Special Needs. It's also important for grandparents to be involved as early as possible.

    ReplyDelete
  95. I am a mom of an autistic adult son. What do you do when your county makes it impossible to find answers? We weren't told to apply for guardianship. He isn't receiving any disability nor SSI because we weren't told we should have done that when he was in K4. He has no siblings. He lives with us right now. He also has type 1 diabetes, which is not recognized in our state either. We have been trying to work with DVR, which has been useless here. It will be wonderful to see a comment with answers.

    ReplyDelete
  96. Yes, I worry about it all the time. There's not a day that goes by that I don't think about where my 25-year-old daughter is going to live after we are gone. We have the infrastructure but not the organization. Private? Public? We did the attorney work a few years ago but it is time to revisit. She has cousins, they they live half a country away and none of them seem interested. I have two sisters in the area. They are smart enough figure something out if we leave them the resources. Autism has pretty much ruined our lives. We missed out on some many things. But I want my daughter to be happy for her entire life.

    ReplyDelete
  97. My daughter is 23 years old and she has severe autism and is non verbal as well. She owns her own home and does know how to cook regular meals and clean house that includes washing dishes and she can take care of herself she does have a younger sister who i am sure will take on the responsibility of paying bills but that is all. We have been working with her since she was 9 months old it has been a long road but we work with her everyday and if u work with your son and teach him how to cook and clean all he would need is someone to pay bills. they r very smart and can be taught how to take care of themselves

    ReplyDelete
  98. I work at a residential group home for Autistic children, which is part of a larger organization called Kerry's Place Autism Services in Ontario Canada. We support hard-to-serve individuals in a residential setting, giving them daily self care skills, developing programs and implamenting protocols that offer care, welfare, safety and security to those living with ASD. It might be a goods place to start in researching residential support via group home services. Check us oUT online :)

    ReplyDelete
  99. For any and all of our children, the future is uncertain. Disability is not just something that happens at birth or early ages It can happen at any time in life with the chances quite high as one ages. With children who fall into the mainstream, or have disabilities that one feels are pretty much covered, the chances are decent that they will be able to take care of themselves. Those without the mental skills to direct care, communicate, as well as do certain necessary life skills, need varying degrees of aid along with physical and medical needs that may be in the picture That Autism is in the picture is not so much an issue with people as they get older. It's a matter of what they can and can't do on a checklist regardless of the reason. If your son had Fragile X and was mentally disabled, with or without the autism, the level of care he can provide and direct is more of an issue than the autism. That he needs someone else to direct is care or not is the primary issue at hand.

    ReplyDelete
  100. This worries most parents terribly and for very good reason. Hopefully, since you originally wrote this post, you have gotten some additional information and options that are currently out there for your son.

    A person who is so mentally disabled and/or unable to communicate that needs full supervision and care needs full time care. Whether that person has autism or other behavioral issues that makes that care more challenging will limit some of those options. When physical harm issues are in the picture, some options are out of the picture since the caretaker and facility has to be able to physically handle those problems in addition to providing regular care. Physical disabilities and medical issues also can narrow the options, because again those needs should be met and not everyone, every place can do so.

    There is a basic disability monthly payment available from SSI and there are food stamps What each state has to augment that, if anything, is an individual thing. It 's important to know what the very basic care available to a person in your state, your area when a someone with a given disability becomes a ward of that state, and whether that is a clear option. Where would some one like your child be placed if parents suddenly pass away, and there are no assets or persons who step up to take him in? Ironically, in many cases, a severe disability can be an advantage because there are cases due to the "least restrictive" setting rules where those with abilities different from the mainstream but still not deemed disabled are left to fend for themselves to the point where they end up in shelters, on the street or in the clutches of some pimp. Harsh reality that exists. Enough cognitive function and communication skills to refuse the more restrictive nursing home options, and social workers dealing with the issue try to keep the number of those "put away" as much as possible.

    You look for group homes and you hope you can find one that is a decent fit. You have to find someone who will is trustworthy with any funds you have put away in a manner that they can directly impact your child and not get absorbed by the government. You take a risk that the trustee or whatever people you entrust don't just take the money and not do their job. I've seen this happen so many times with family members, siblings, so that the fact your child is an only, to me, is hardly an issue, other than those who have family involved feel better about it since they hope for the best. Better peace of mind, but really, I"d want to see the numbers to believe that statistically those folks do better. I've seen a lot of abuse and neglect, often not deliberately.

    Because things do not stay static, even if you find a great placement for your child, there is no guarantee that it will so remain. Even with elderly, that can be the case, when an assisted living/nursing home chosen carefully goes bust after an enormous down payment (which the better ones do require). With the elderly, you usually have a shorter future to worry about due to life span. With a young disabled person, the chances of change are just about certain in any environment you place him.

    ReplyDelete
  101. 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.

    Live in carer

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...

© 2011-2018 Autism Daddy / Frank Campagna. All Rights Reserved