Home > In Their Own Words > In Their Own Words: What Happens When I Am No Longer Here?

In Their Own Words: What Happens When I Am No Longer Here?

My autistic son David, now 22, has finally mastered the Metro transit system here in the nation’s capital. He is also a runner who jogs alone on the Potomac River’s neat footpaths, cutting like a ribbon through tourists flocking to the Mall for the Cherry Blossom Festival. Recently, David got his driver’s license, but to ensure that he never takes more than one person for a ride, we pulled out the back seat of his little Jeep Wrangler and so far, I have been his only passenger. And there’s the rub: mastering the skills for doing things by himself has catapulted him into an ever-deepening world of aloneness. Now, everywhere he goes, roaming farther and farther into the world, he goes solo. Hardwired to protect him, this is proving more difficult for me than for him.

For years we fought side by side, battling for the right school, therapy, job coach, and lately, housing. Now, as he moves toward greater independence as an adult, the number one concern my husband and I have for our son is his growing isolation.

The supreme dread for us, and for every middle-aged parent of a special needs adult, the singular ache that dries the mouth and races the heart at 3 a.m., is loneliness: Who will offer my child a healthy, loving touch when I am no longer there? Who will care if he has not made it home by the end of the day? And if there is no one, will there be a safe shelter for him somewhere? 

The fact is, middle age is scary. Bruce and I are thirty-five years older than our son, and we have no way of knowing how things will play out for him long after our bones have dried. Nonetheless, it is time to delve into the basic civil and legal rights of and for our special needs adult son. And knowing what we know, we have made some plans.           

I anguish still over our decision to assume the limited legal guardianship of David’s life. This controls four basic constitutional rights: his right to vote, to marry, to choose his religion, and, God help us, his right to own a gun. For each of these civil liberties he must have our written consent. On the one hand, it pains me to think our guardianship could further stigmatize him. On the other hand, guardianship is an important instrument that will help protect him from a predator’s grasp. The question of whom to appoint as his financial trustees in the event of our mutual deaths is even more worrisome. The stakes are high here and the people we are asking to step in for us must be reliable, empathetic, and, to my mind, heroic.

No one looks forward to time spent thinking about his or her own death. But as overwhelming as the process is, in the final analysis, there is relief, not dread, in wising up and finding new ways to think about securing David’s future. Bruce and I have visited the good attorney’s office on three separate occasions now, sifting through the process’s tedious language, having heart-to-hearts with friends or family members who might be willing to assume a part of this enormous burden in our stead. Three or four times we have set a date to meet each other at our kitchen table to wade into the binder protecting David’s future. Three or four times we’ve let something get in the way before we can finish the task.  But slowly, we’re getting there.

And yet, we’ve come to believe the flip side of David’s autism is its saving grace. Perhaps the disquieting things that keep us up nights do not register in David’s mind. The worry-free bubble in which he lives is almost enviable, a protective shield from anxiety. We know our son doesn’t lose sleep over what would happen if his SSI payments were slashed, if his Medicaid benefits dried up, or even how he’d get home if he lost his Metro card again. For us these are very real qualms, yet somehow manageable because they do not begin to approach the darkest monster coiled under the bed: who will love him when we are gone?

On the other hand, we know the immense pleasure of what David does have – those strong runner’s legs of his and a good support system in his two older brothers – and we recognize how much harder so many other special needs children have it. When David comes in from a night run and wolfs down a box of cereal before heading off alone to his room, I feel wonder and awe for what he can do.

But like our cat, he allows me into his presence only on his terms. Neither selfish nor mean, he’s simply not needy. For example, he’s never said that he loves me, but the gift of his love is not mandatory for our allegiance because I yield to a certain unknowability in this young man. I accept that his emotional life will continue to be a mystery because he will always live on this one-way street. 

And yet, deep in my heart, there is still an ache for what could have been for him and will never be.

This “In Their Own Words” essay is written by Glen Finland. Glen is the author of Next Stop, a memoir about raising her son, who has autism, to adulthood and learning to let go, forthcoming from Amy Einhorn Books/Putnam in early 2011.  

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. Dadvocate
    April 8, 2010 at 1:09 pm

    Thanks, Glen. Yours is a very poignant and honest assessment of the future decision making that us now or will soon face. There are so many issues to consider; special needs trusts, guardianship and what happens after we’re gone, supports, housing, employment, lifespan learning, quality of life, and safety. That’s why I’m glad that Autism Speaks and partner advocacy organizations are joining together to apply leverage on policy makers and provide tools to adults with autism, parents, and caregivers via the Advancing Futures for Adults with Autism (AFAA) initiative. http://www.afaa-us.org/site/c.llIYIkNZJuE/b.5063863/k.BE3C/Home.htm

  2. April 8, 2010 at 2:41 pm

    Dadvocate is right. We’re all going to need a Plan B for our young adults with autism. It’s time to get cranking on these tough decisions. – Glen

  3. Jan Solock
    April 9, 2010 at 3:24 pm

    Thanks Glen. I look forward to reading your book.

    I have shared this blog on my facebook. My son Alex is going to be 17 in May and I work and worry every day on what his options in this world will be once his Dad and I are gone. Our goal for both ofour children is that Be Happy. I think that two important requirements to an individal to choose to be happy are being able to make your own choices and to be a contributing member of your community. We are teaching him to cook his favorite foods. I want him to eat off clean plates so we made sure that he can wash dishes. He loves to go. It doesnot matter where just so he is in motion on his own feet, car, boat, plane, etc. We are teaching courier skills just in case the modeling thing doesnot work out.

    As community and a nation we need to come together to make sure there housing options, job skills and life skills are taught.

  4. Carolyn
    April 9, 2010 at 3:25 pm

    These thoughts have been crossing our minds for a long time now. Our son, Alan, has turned 21years old this year and he is in his last year of school. The words “What if” are always on our minds as his father now goes into hospital for the second time inside one year to have his heart valve replaced. I am no spring chicken either. I am torn between getting him in assisted living or having him stay at home where I KNOW he will get the care he so needs. If he were to move out of the home I worry about what if no one turns up to give him his medication? His meals, his shower/shave time? None of these simple every day things can he do on his own. Thankfully he has a younger sister and several cousins through my brother’s family. I share the same thoughts, worries and hopes with you Glen.

    • April 9, 2010 at 5:13 pm

      Jan and Carolyn bring up an interesting point. Today there are over 730,000 young people like our sons in this country, which mean there are literally hundreds of thousands of families struggling to balance their lives, including the loyal siblings conflicted by a mixture of love, duty, and frustration directed at their autistic brothers and sisters. Everyone in the family needs to be involved in Plan B.

  5. Larry
    April 9, 2010 at 4:43 pm

    Thank you Glen, for putting into words the thoughts in our minds and hearts. As I read your passage with a tear in my eye and a lump in my throat, I can only share the fear and concern of so many of us “middle aged” parents. With a 17 year-old daughter, this has become a heavy burden to plan for. With all of the provisions we have already made, will those people still be around if we aren’t? Our daughter is blessed with a younger sister who has always taken the “older” sibling role. We believe that she will care for our daughter when we are gone. Our family is blessed with love and concern for each other; some in a unique, individual way.

  6. Cheryl aka Alan's Mom
    April 9, 2010 at 5:25 pm

    I live with these same thoughts each and every day…but where can I plan for Alan’s care when I am no longer here or able? Alan is 27…but his spirit, heart & skills are that of a 3-8 yr.old…so how do I plan to ever leave my baby in someone elses care? I know I will have to…someday. Alan also has an 8 yr.old brother and a 3 yr.old brother…hoping they will “check-in” on Alan’s care once I am no longer able to care for Alan. I do not expect Alan’s brothers to do the caretaking…but will hope that they become guardians of their big brother…and check-in everyday day…whereever that may be…………for Alan loves them so…as they also love and adore their Big Brother Al . I can only hope.

  7. Hope
    April 9, 2010 at 5:42 pm

    My daughter is only 9, and I already worry about these issues, along with the ones we are tasked with overcoming today. As I read you words and those of the folks that left comments I’ve overwhelmed with the knowledge that there are such strong parents/families out there. Our children are such wonderful gifts, and I have to say I’ve learned from my little girl how to be happy regardless of other things going on. There are many things I wish for her, but if she can remain happy and not become stressed as many are maybe that’s the payoff for what she must endure in this life. Have faith that you are doing everything you can, and making the best choices you can. May God bless you and your family.

  8. Joanne
    April 9, 2010 at 5:47 pm

    Thanks for sharing your story Glen. I have a 8yr.old son who had autism too… when we found out that he had autism first thing that went to my mind was “My God who’s going to take care of him when i’m gone?” until now i still have that fear that nobody is going to look for him, my husband always tells me that i don’t need to worry about what’s gonna happened on the future ‘coz he knows whatever will happened his 2 brothers and younger sister will take care of him in the future. I understand what you feel on this situation Glen…

    • Carol
      April 13, 2010 at 6:33 am

      I can totally relate to what you are saying Joanne. I have a fourteen year old son and when he was first diagnosed those were my same exact sentiments. He does have an older brother who is 22 and understands that he is going to be his brother’s caretaker. However, as mother’s, we always have to plan for a Plan B. Keep the faith!

  9. Kate
    April 9, 2010 at 5:49 pm

    We too worry about what will happen once we are gone. We never expect either one of our daughters to have any of the day to day responsibilities for our 44 year old son. Twenty years ago we established a private group home with nine other families and hired an agency to oversee it. This setting allows each resident to have as much independence as they are safely capable of having. Each family owns one bedroom and 1/10th of the common space and we share equally the costs associated. Each resident shares in the cooking, cleaning, menu planning and other chores. Each is responsible for their own room, laundry, and schedule. Some take their own meds and others have supervision. Some work part time and most take public transportaion on their own. The house is minimally staffed and is the best arrangement that we know of. The biggest down side is the cost. All is well today and we attempt to be prepared for tomoorow.

    • Leslie
      April 9, 2010 at 8:42 pm

      Kate, What a fantastic idea!!! Our seven-year-old is autistic, and I am sure that his three brothers will be there for him after his father & I are gone. The four of them are extremely close, despite some age difference between the first two, 13, 7, 5 & 4. I have thought for months now, that perhaps real estate would be a better investment for him than a college fund, and I think your idea would make that even better. Thanks for planting that seed! ;-)

      Leslie

  10. Susan
    April 9, 2010 at 5:53 pm

    Beautiful, beautiful blog post!!!

    And as a parent of two “teens” with ASD, I value the affirmation that helping my sons develop the functioning to have real meaningful relationships in their lives is the most important priority for us right now.

    It wasn’t always; there was always “speech” and “OT” and reading and writing and math and life skills and on and on; but now, as we all age, the focus in our family has shifted to “relationship development”, and the developmental functioning that goes along with that. I am thankful that we have made the change – it is never to late!

  11. Kathy
    April 9, 2010 at 6:10 pm

    I have a twenty five year old autistic daughter, I had her in a group home only to find out she was being abused, I quit my job to stay home and care for her. Really, who is going to give my child the best care, but me. I think about her future everyday and hope her sisters will care for her after my husband and I are gone, but I honestly had to ask God to please make sure shes taken care of, and I know he will make sure she will be ok.

    • Sandra
      April 10, 2010 at 4:44 am

      Kathy,
      I’m so sorry for what has happen to your daughter and what you must be dealing with. I also had to quit my job to care for my now 13yr old son because i couldn’t find appropriate daycare and have been doing it alone. Money has been very tight and a friend of mine suggested I to put him in a home so that I can work. What happen to your daughter is one of my biggest fear. Some people do not understand what we have to deal with to raise our kids. As if dealing with our kids daily challenges isn’t enough, we have to plan for their future and for when we are no longer around. I hope our growing community continue to support each other and share information. As for you and your daughter I send a huge hug and best wishes and if you believe, prayers. Someone cares..

  12. Nara
    April 9, 2010 at 6:22 pm

    We have a four year old who got autism diagnosis about a year and a half ago. It took me 6 months to get over the grief/panic/anxiety. After that we are charged up to do whats best for him. As we learn more and plan our battles, I have the faith/belief that he will go on to do great things. To copy a quote from Temple Grandin “Different but not less”. You honest assessment prepares and helps us for the road ahead. Thank you. Best of Luck.

  13. Lily Sherman
    April 9, 2010 at 6:28 pm

    Beautiful essay, Glen. Your written words are the unspoken words of many. Thank you so much for writing it!

  14. Sharon
    April 9, 2010 at 6:28 pm

    Thank you from a Grandmother, who wonders and ponders these things too.

  15. Carol Wohlford
    April 9, 2010 at 6:34 pm

    If you ever find the energy, time, fortitude, Glen, to begin to help groups like Autism Speaks to understand the urgent need for research, resources and awareness-building to be directed at adult autistics, then please contact me. I won’t attempt to tackle this issue alone, but I will, with partners. I am a widow with a 33-year-old son who has Asperger’s Syndrome. There is nothing out there to help us address the issue of “friends”, appropriate group housing, true job coaching and development, etc. I have advocated and fought for Brice’s quality of life issues in various venues all my life, and will continue to do so until I die. His siblings will do the same. But the general public knows nothing of what he and his loved ones go through every day, as you and your husband and David DO know. There are so many of us. We must rally and mobilize for awareness of the bigger issue, and that is, what do we do when these autistic children grow up?

    • April 9, 2010 at 8:31 pm

      Thank you for your kind words and please know that we’re all in this together…so you’re right, anything I can do for Autism Speaks in the name of adults with autism, you bet I will. – Glen

  16. Cheryl W. Phillips
    April 9, 2010 at 6:51 pm

    Dear Glen,

    I certainly can feel what you are experiencing. My husband and I have a son who is 41 who was diagnoised when he was 2 1/2 back in the days when they really didn’t know much about autism and they blamed the parents for the disorder. Back then, very little hope was given for your child. It was like a death sentence. We have spent many years tying to help him live to his fullest potential.

    The issue about guardianship stills makes us wonder, should we or not? We don’t want him to loose all the independence he has earned and the independence we have worked so hard to get for him. He has been driving on his own since he received his licensed at age 17. His driving record is so much better than his parents. He has become high functioning and it certainly didn’t start out that way. My husband and I say, “he is now doing things we wanted him to do twenty years ago”. He loves to be around people and is highly responsible. He still has autistic charteristics and we still fear what will happen to him when we are gone(we have no one we can count on to care for him so he has to learn to do things on his own). Because we feel we have been succesful in these 41 years, we are starting a social skills training progran for high functioning adutls with ASD. We were approved December 15, 2009 from IRS that we are a 501 (c)(3) Non Profit. We learned of this wonder just before learning I have breast cancer. Our program will be for adults who have aged out of public schools and have no hope for future learning. Our students will be 21 up to the age of 49. We begin in the fall 2010. Our program will be in North Houston, TX. The name is Win-What’s in a Name. Our mission is to intervene in the daily environment of autistic adults so their learning disorder will not limit them from being responsible adults. Our vision is to empower them to reach to their fullest potential.

    Remember, people with autism are like a pc vs a mac. They have a different operating system and they operate differently so know it takes time for them.
    Don’t give up.

    Cheryl W. Phillips, mother and
    Executive Director, Win- What’s In a Name
    connecting adults with autism from their world to our world

  17. Mom of son with Autism
    April 9, 2010 at 8:36 pm

    I have 21 year old son with high functioning Autism. Due to lots of my hard work and persistence, my son had SSI, Soc. Sec., Medicaid, Medicare, and funding from Department of Disabilities. He was working part-time.

    My ex-husband, decided that our son should work full- time and is in the process of discontinuing all services. He composed a letter saying that my son would like to be off all services and then had my son sign it.

    This is a nightmare like no other. An official at our local Social Security office said that in 26 years, he has never seen anything like this situation. I have been told by 2 attorneys that if I try to go for guardiandianship, that my ex-husband would convince my son to oppose it. What is going to happen when I am gone? I have fought/advocated for my son his entire life and now his “father”is doing away with all of my son’s support systems. I feel sick to my stomach.

    Thank you for writing the book. I have long said that there is a tsunami wave of children with Autism who will be adults, and no one is ready for their future.

  18. Deirdra
    April 9, 2010 at 8:37 pm

    Thank you for sharing your story. I also have an adult child with Autism. My daughter will turn 30 later this month. She is low functioning and non verbal and I worry constantly about her care but more importantly I worry about who will love her when mom is no longer here. I have made arrangements for her to live in a small group facility and I feel the care she receives is adequate but I can’t help wonder who will advocate for her when I no longer can.

    • April 12, 2010 at 4:07 pm

      I am a mother of a daughter with severe autism, mental retardation. She is an only child, her dad
      and I are 30 years older than she, and I constantly
      worry about what the future holds, and I cry alot, because we don’t really have anyone to look out for her or who would accept this burden. I pray alot and I know that GOD will take care of this and send some one very special our way. Thank you to everyone who shared their feelings about this, I feel better knowing I am not alone!!

  19. Juan
    April 9, 2010 at 9:09 pm

    We, the fathers with autistic sons, just have for this the following extract from the Bible: Mathew 6:25-34

  20. Julie
    April 9, 2010 at 9:10 pm

    Thank you for talking out about this important issue. Our severly autistic son will be 11 this year and we feel this overwhelming sense of unknown for him and our family. We pray to help him make the right decisions and for us to make them for him too. Love is so crucial to a happy life. Our boy has a beautiful extended group of family and friends. Blessings we are truly grateful for.

  21. Bruce
    April 9, 2010 at 10:03 pm

    Wonderful writing and very timely. Keep up the good work.

  22. Nancy Kenny
    April 9, 2010 at 10:59 pm

    Wonderful and moving. I also have a 22 year old son and feel the same. My days and nights are always busy with the same thoughts over and over again, who will take care of my son. We are older parents also and I can’t imagine life for my son without us. Who will be there for him – has become my goal in life. And it seems no one really understands the parents feelings or the young adult. So many times people say to me just put him in a group home. They don’t get it. I have been there since the beginning, we are a team. He trusts me. I have to make sure his world remains the same

  23. Karen DeWitt
    April 9, 2010 at 11:03 pm

    This was an awesome read, thank you!

    And I agree with Carol, with all of these kids who are diagnosed every day, shouldn’t there be more collective solutions? I have an eight-year-old son with autism and I worry/wonder every day how he will get by and who will love him when I’m gone. He deserves love like anyone else.

  24. Karol Sissom
    April 9, 2010 at 11:23 pm

    I am in total agreement with Carol Wohlford, and would also be willing to work with a group on this. Our son is 25 and has Asperger’s. He has a 23 year old sister who is not sympathetic, due to the negative ways in which his diability has impacted her life. They have their ups and downs and I tell myself that she really does love him. But I worry that she will not want to oversee things for him when we’re gone. As someone above mentioned, I sometimes tell people that they can NEVER truely know what our lives are like raising a child/adult who is autistic.

  25. Susan
    April 9, 2010 at 11:38 pm

    Thank you, Glen, for putting into words the thoughts of many of us. My son received a diagnosis of Asperger’s at the age of 25. What I found out is that virtually all autism resources in my state are directed to young children. We were on our own. I have the same worries as you do. My husband died two years ago and my son’s brothers are 2000 miles away. I pray that God will provide the answer in due time. Thanks again for your story.

  26. Judy
    April 9, 2010 at 11:58 pm

    Sadly to say I know exactly where you are coming from. I have a 21 year old son with Aspergers and OCD and I am struggling with some of the same issues. Wouldn’t it be nice if some of these young men could get together and help one another. I don’t know what will happen when we are gone, but you seem to be many steps ahead of us in the planning. My son would be angry to find out if we took any of his rights away.

  27. A.J.'s Mom
    April 10, 2010 at 12:18 am

    So well written, thanks so much Glen for sharing your essay. As a middle-aged single Mom of a young man (18) with autism, thinking of my beautiful child’s uncertain future & well-being when I’m gone worries me a great deal. I have talked to an attorney regarding guardianship, etc. and I understand the importance, but who can afford the $3,000.?! Does anyone know if there’s a way to do this yourself? I am also in a battle with SSA to not stop his SSI & Medicaid now that he’s an adult. They seem to think that he’s able to work so he’s no longer disabled. How ludicrous is that? I will never stop fighting for my son, he is my life. Couldn’t say it better than Carol Wohlford …what do we do when they grow up?

    • Michele
      April 10, 2010 at 8:51 pm

      A.J’s Mom, we were recently told to start stashing away money for that, and yes I agree, with toady’s economy, who on earth can afford to think about that expense? I don’t know of any way around it without using an attorney. : /

    • Gale Bennett
      October 21, 2010 at 10:06 am

      You are not REQUIRED to have an attorney, which means if you can learn how you can save a lot of money (call a law school or go to their library and LEARN how), just need knowledge of how to petition the court for guardianship with documentation for your child’s condition and explain why it will be in their best interests for the court to grant it. Lots of documentation!!! When they work above their SS income… and PLEASE go online and read the SS website about “receiving disability” and your earned income!!! If they can, do or forced to work above a certain level, then yes absolutely they will loose their benefits. They may be able to work for a short period of time at that level, but normally will not be able to sustain it so you need to consider that in guiding what is best for your child. I am not an attorney just an experienced mom gone through the same stuff. It is very stressful but YOU CAN DO IT!

  28. janet
    April 10, 2010 at 12:20 am

    I have read your article. I too have difficulty in knowing how my son who is 16 years old will survive. We are his friend and his parents. 18 years old is right around the corner as well as 21, both my husband and I are scared as well. We keep him busy and his older sister helps out too. He has a part time job (just one day a week) and we hope he can do it on his own one day. Lost sleep and thinking all the time on how he will do without us. We need to go forward and rally for our children so they will be able to live a life that we have.

  29. Judy Gruenfeld
    April 10, 2010 at 1:04 am

    Thank you, Glen, for sharing your story with us. It is something we all think about.

  30. Ginger
    April 10, 2010 at 2:48 am

    Wow. I read your story and my heart tore open. You stated what I have been stating for the past 2 years to the teachers, docters, and Therapists…but I get the same answer…Austen will start Job assesment when he is in his last 2 years of school..which is 20-22yrs old. Then what? Im lost. My Autistic son is now 17yrs old this month. Ive taught him alot but he has a major anger issue, bad tempers, and always have had. Who is going ot take care of him with LOVE not hate with the anger problems? Who besides me and his siblings will be able to calmly calm him downor Hold him softly when he crys?
    WE do need to do something. Lots of our kids are coming of age and I know Lots of people dont know what or how..like me.
    Thanks for letting us read into your life. It sure helped me.

  31. Eunice
    April 10, 2010 at 3:53 am

    Thank you so much for sharing your story. Sometimes I forget that I am not the only parent that have children with autism. I am a single mom and I have two children on the autism spectrum. Just tonight at dinner I was thinking about this very thing. I have begun steps to have things in order when I am no longer here.

    My daughters’ Tianna and Jade have come a long way. I am so proud of them. They are 16 and 14. They are beautiful and so are you for sharing your story. thank you.

  32. April 10, 2010 at 11:02 am

    There is a popular Chinese proverb that goes: ‘The wind never ceases to blow even if the trees want to rest’. I like to think of our autistic daughter Aishwarya as the ‘whirlwind’ that has revolutionised our lives!
    Our experience with Aishy (now 28 years old) has proved that even though dealing with autistic children may often prove difficult and frustrating, all people with autism can and will show tremendous improvement with the right kind of support, kindness and understanding.
    I believe that training is more important than teaching with regard to autistic children. I often picture myself and my wife as tandem bicycle riders towing another bicycle beside us!
    Most parents of special children are haunted by the unanswered question – “AFTER US, WHAT?”
    Glen Finland touched this most important point which gives us sleepless nights.
    Our aim is to make Aishy self sufficient to the extent possible, and also to organize a trust under the guidance of like-minded well-wishers and experts so that special children like Aishy can live with dignity even after our own lifetime.
    On the occasion of World Autism Awareness Day in Apr, my message to all parents of autistic children is for them to find out by relentless trial and error what their children are good at, and give them a worthwhile hobby that will be as a welcome change from the monotony of daily routine. Nothing quite compares with trying to find the spark in them through some activity that they excel in!
    Group home suggestion is to be pursued in respective areas we live in with insurance companies as financial guardians
    after parents to take care of needs foreseen and unforeseen.In India Govt owned Life Insurance Corporation floated a policy called Jeevan Aadhar for handicapped.Parent pays premium and in the premium period child is covered for full amount if anything happens to the parent.After policy matures money is retained by insurance company for the child’s needs.After passing away of the parents monthly payouts are made thro nominee mentioned in policy-mostly siblings like pension.This is life time for the covered child and corpus funds are in tact and earns bonus like other policies.Perhaps insurance companies in your area have to float similar beneficial policies and please contact for scan of current policy terms I am holding.This is just one step of making an insurance company as one financial guardian and hopefully insurance companies cut down drastically of formalities as autistic ‘children’ do not exhibit money concepts and legal nominee in policy should not under go bureaucratic procedures for drawing some amount to be spent for welfare of the handicapped.Somewhere TRUST has to play a role.

  33. Lisa
    April 10, 2010 at 11:59 am

    My husband and I dwell on the same as you. It is agonizing to think about. Especially in this day and age. Families are what they used to be. People don’t stick around in one area anymore. Everyone is spread all over the place. I am 47 yrs old and to this day, I still have the support of many family members and so do they. I am the youngest of the 1st cousins and most of family is still in the area. But, for our son, we worry. His cousins probably won’t be around for him to call on. Nobody wants to be bothered anymore. I can’t seem to find the compassion within people like I grew up with. Everything moves so fast, in hurry and always changing. You know these kids don’t like that! There’s nothing “normal” anymore. No security. It’s a gloomy situation that haunts us!

  34. Paula-Jean Knight
    April 10, 2010 at 2:03 pm

    Hello,
    My son just turned 15 and started High School this year.He’s more like a 5year old with the academic capabilities of pre-kindergarten. The school district will keep him in school until he’s 20, but then what? I have been recently diagnosed with Multiple Sclerosis and this ways on my mind. I always thought I would be the 70 year old mom with her 50 year old son in tow. I worry that I won’t be able to keep my MS from progressing. He’s become very aggressive since becoming a teenager and sometimes I wonder if I am able to take care of him. It’s encouraging to know that I’m not the only parent with these worries. I saw the movie “Radio” and when his mother died I couldn’t stop crying. Thank you

  35. Pam
    April 10, 2010 at 4:19 pm

    Would you believe I am a grandmother of an autistic child, who is now 12, and I have been worrying about what will happen to him when my daughter, one day, leaves this world. My grandson has no siblings and we don’t have a big family. So I have no idea what will happen to him. It is a definite worry.

  36. Michele
    April 10, 2010 at 8:49 pm

    Oh wow. A topic near and dear to my heart. Yes my children are doing “better”. 1 has Asperger’s, the other moderate to severe Autism, and you betcha, I wonder/worry about their futures and who will look after them and their needs. :-( I will read the other posts and see what is being said. I truly need to map this out, real soon.

  37. Chris
    April 11, 2010 at 3:30 am

    Thank you all…my daughter will be 6 in July and since her Autism diagnosis this has been my #1 worry. Yes she works very hard to progress and battle her disability (I believe it’s the cause of her anger and frustrations…she knows and is determined to fight!). She is so very precious, pure hearted, honest, scared – who will look after her? My husband and I are both 47 from day one he’s been in denial – it’s a battle, and one I will fight until my last breath. Until my special little angel was born – I never feared death – now I’m terrified. Together we can make a change to secure the happiness and safety of our children. You all humble me – the strength, dialogue, support…thank you.

  38. Felicia
    April 11, 2010 at 4:54 am

    I’m the proud parent of 20 year old man who has high functioning aspergers and pdd. I need some real information on how others are coping with no government assistance.

  39. Marge Duggan
    April 12, 2010 at 12:59 am

    I, too, am terrified about who will love my grown son when I am gone. His sister is bi-polar and you just don’t know who she is from day to day. I am so upset because my husband is now very sick.

  40. April 13, 2010 at 3:15 pm

    What a beautiful piece. As the recently widowed mother of an 18 year old with autism, I would encourage you to make your decisions while you are both alive and well and able to do so together because, while it is wrenching to do so, it is far easier to make the decisions together than alone.

  41. mighty
    April 15, 2010 at 6:12 pm

    Well written and timely. We have a 20 yr. old son with autism, and find it hard to pull our heads out of the sand and do the planning we know is necessary. This is a good wake-up call. Please remind us when your book is published, I’d love to read it.

    • April 15, 2010 at 9:10 pm

      hello mighty:
      The book’s website is http://www.glenfinland.com
      Sign in under the Contact button and you’ll be put on the list serve for the pub date of Next Stop in 2011.
      -Glen

  42. Jim
    April 22, 2010 at 10:52 am

    Juan:

    I have the same feeling as your quote of Bible: Mathew 6:25-34.

    But we are human. It’s probably better to be concerned and prepared for our children with or w/o autism than not to worry at all.

  43. July 18, 2010 at 9:54 pm

    Thanks for the amazing story Glen. I’m about to embark on the independence journey with my 16 year old son – you are my new hero!

  44. Sherri U.
    January 27, 2011 at 2:50 am

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    There have been many advancements in the area of career aptitude testing. Usage of artificial intelligence to evaluate suitability of a job for a person is one of the these techniques. You can take a complete version of the MBTI personality test plus many others such as memory, IQ, problem solving, and patience tests in OptYourLife. This website’s expert system tries to find the most suitable career path for you using neural network. Moreover, salary of different careers will be considered in the final analysis to provide a more insightful advice for you:

    http://www.optyourlife [dot] com/

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  45. November 26, 2011 at 2:45 pm

    Glen, that was so heart warming. The love of a parent to his child is truly boundless. I can empathize with how your are feeling because I have the same concerns, and like you, the thought of it keeps me awake at night. Sometimes I wish that there is a fountain of youth so I can forever be at my child’s side but there isn’t any, if there is, I doubt if I can even have a look at it. :) Anyway, you are right, the best that a parent can do under such circumstances is to prepare everything that we can. That is the only way that we can still be there at our child’s side though we are no longer physically in this world.

  1. June 8, 2010 at 9:02 am

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