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

By: AARP Medicare Part D

AARP Medicare Part D — Sat, 26 Nov 2011 19:45:26 +0000

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.

By: Sherri U.

Sherri U. — Thu, 27 Jan 2011 07:50:50 +0000

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

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By: Gale Bennett

Gale Bennett — Thu, 21 Oct 2010 14:06:48 +0000

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!

By: Susan Levy

Susan Levy — Mon, 19 Jul 2010 01:54:14 +0000

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!

By: In Their Own Words – In the Workplace: Expect Ruffled Feathers « Autism Speaks Official Blog

Tue, 08 Jun 2010 13:02:52 +0000

[...] 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. Read another blog post by her – In Their Own Words: What Happens When I Am No Longer Here? [...]

By: Jim

Jim — Thu, 22 Apr 2010 10:52:40 +0000

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.

By: Glen Finland

Glen Finland — Thu, 15 Apr 2010 21:10:05 +0000

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

By: mighty

mighty — Thu, 15 Apr 2010 18:12:03 +0000

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.

By: Caryn Sullivan

Caryn Sullivan — Tue, 13 Apr 2010 15:15:24 +0000

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.

By: Carol

Carol — Tue, 13 Apr 2010 06:33:22 +0000

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!

By: Jenifer

Jenifer — Mon, 12 Apr 2010 16:07:02 +0000

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!!

By: Marge Duggan

Marge Duggan — Mon, 12 Apr 2010 00:59:51 +0000

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.

By: Felicia

Felicia — Sun, 11 Apr 2010 04:54:06 +0000

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.

By: Chris

Chris — Sun, 11 Apr 2010 03:30:31 +0000

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.

By: Michele

Michele — Sat, 10 Apr 2010 20:51:31 +0000

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. : /

By: Michele

Michele — Sat, 10 Apr 2010 20:49:29 +0000

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.

By: Pam

Pam — Sat, 10 Apr 2010 16:19:12 +0000

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.

By: Paula-Jean Knight

Paula-Jean Knight — Sat, 10 Apr 2010 14:03:28 +0000

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

By: Lisa

Lisa — Sat, 10 Apr 2010 11:59:59 +0000

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!

By: b.sriram and girija sriram

b.sriram and girija sriram — Sat, 10 Apr 2010 11:02:01 +0000

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.

By: Sandra

Sandra — Sat, 10 Apr 2010 04:44:50 +0000

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..

By: Eunice

Eunice — Sat, 10 Apr 2010 03:53:32 +0000

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.

By: Ginger

Ginger — Sat, 10 Apr 2010 02:48:33 +0000

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.

By: Judy Gruenfeld

Judy Gruenfeld — Sat, 10 Apr 2010 01:04:01 +0000

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

By: janet

janet — Sat, 10 Apr 2010 00:20:13 +0000

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.

By: A.J.'s Mom

A.J.'s Mom — Sat, 10 Apr 2010 00:18:14 +0000

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?

By: Judy

Judy — Fri, 09 Apr 2010 23:58:59 +0000

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.

By: Susan

Susan — Fri, 09 Apr 2010 23:38:18 +0000

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.

By: Karol Sissom

Karol Sissom — Fri, 09 Apr 2010 23:23:38 +0000

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.

By: Karen DeWitt

Karen DeWitt — Fri, 09 Apr 2010 23:03:26 +0000

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.