10 Comments

  1. PETER MANNELLA
    May 28, 2018 @ 11:51 am

    You are a beautiful soul and a most amazing Mom. Im grateful you stopped into my life perhaps as a speaker but more as a muse. You put words to feelings i now am having over my grandson. Thank you

    Reply

    • Maria Andrea Quintanilla
      May 28, 2018 @ 1:02 pm

      My heart hurts, when I read this. I am the grandmother of a 14 year old grandson with Autism. He has an awesome mother and stepfather (my son, his Dad, passed away when he was four). I think alot about his Mother and I am sure she worries about her son, when she will pass away. I know, I do. Thank you for your beautiful, wise words.

      Reply

  2. Susan Needleman
    May 28, 2018 @ 1:54 pm

    I also have a grandson with Autism. We worry about the same things after we are gone and his parents are gone. Carrie…. I think you need to write another book on this subject. You need to write it for Jack so that it’s all written in one place. And you need to write it for other parents and grandparents struggling with this issue. What resources have you found for group homes ( if needed ), how to set up disability trusts ( for those that don’t know such a thing exists ), how to deal with adolescents and young adults with autism. I am sure you have discovered resources that some of us don’t even know about. After reading your first two books and following your blog I know you are the right person to write this book.
    Please consider it.

    Reply

  3. Se Savage
    May 28, 2018 @ 2:21 pm

    As a mom of three amazing little people with Autism, I can’t begin to tell you how much I identify with and appreciate your willingness to share this. No parent wants to outlive their children. And yet, how many nights have I worried myself into praying that I might hold on for just a single breath beyond their last. Even if it meant I had to make lunches with no crust, and field disinterested doctors calls and soothe the same anxieties about whether ‘the activity will be late if it rains’ until I’m 120.

    Having worked my way through college and grad school at one of the nation’s first senior retirement communities expressly designed for the holistic care of adults with special needs, I hope I can extend you a tiny little flicker of hope. Despite budgets being cut nationwide, there are still so many agencies and individuals out there fighting the good fight to make sure those like your Jack, and my own little Lion, Lamb and Honey Badger are looked after compassionately should they ever come to need it. Good people. Stalwart people. Patient people. I wish the both of you a forever’s worth of health, love and light.

    Reply

  4. Bernie McMillan
    May 28, 2018 @ 4:08 pm

    HI Carrie, My son Patrick just turned 25 and has Asperger’s. I just wanted to tell you how much progress we’ve made since he’s hit his twenties. Middle school, adolescence, and high school are years we endured. I helped run a non-profit for Asperger teens and their parents during these difficult years. This is where we both found friendships-people who spoke Autism with us. After high school we found a program here in Plano, TX that trained adults on the spectrum to create video games. This has been our niche for 6 years, and I am happy to say that Patrick is moving on to a wonderful program located in Cross Roads, Texas. We found 29 Acres through one of my older son’s friend’s wives who’s a transition specialist. 29 Acres is a community for.adults on the spectrum, but they also have a transition academy which Patrick will start on July 9. This is a 2 year program geared towards getting motivated Aspies to become independent. They work/volunteer, attend life skill classes on nearby UNT campus, and are responsible for the house they live in. I still panic about Patrick when my husband and I are gone, but please know that there are very caring people out there in this world helping to lead the way into adulthood for our children on the spectrum. Check out 29acres.org for just one example of a stellar program that’s going to help this parent sleep a lot easier at night! Hang in there-there are lots of formative years left!!
    Sincerely,
    Bernie

    Reply

  5. Beth Brown Johnson
    May 28, 2018 @ 5:54 pm

    Yes. This is also my constant worry. Travis is just finishing his Junior year at a small private (expensive) school for kids with special needs. This time next year he will graduate. Then…….what? I’ve no idea what his future holds, or if he’ll ever live on his own, or hold down a job. At least you are a bit younger than my 53 years. And at least it seems reassuring to know Jack has four siblings who will love and look out for him. Although I know you probably don’t want to saddle them with being his caretakers. Travis has an older sister and I hate to think she’d have to shape her future to fit around him. I’d prefer them to have a typical sibling relationship but that really hasn’t been the case up to now anyway.

    Reply

  6. Dottie Melko
    May 28, 2018 @ 6:57 pm

    This is a predictament for all autism parents & grandparents. My friend has a 47 year old son, she’s 65 with heart problems & each time she is in the hospital he panics & writes on his FB page for someone to adopt him so he doesn’t have to live in a group home. It tears my heart apart each time he posts it but they have no other family left!! It is a worry for all of us!! Since Autistic never lived so long before these times, there is not much out there for them in many other ways too!! My grandson is graduating with full honors, 4 years of straight A’s, member of NHS but no offers of scholarships or of anything that might help!! We found a place for him at a kind of tech school but no scholarships are accepted since they are nonprofit & I can’t find any scholarship that would pay to the student or the parents. The school is very expensive ($1275) per month & no transportation is available. I can’t move up there yet as I take care of my 92 year old mother!, otherwise, I could move where he lives & transport him to & from the school. Hands together for all of us in finding our answers!!

    Reply

  7. Sue Nicholson
    May 28, 2018 @ 10:33 pm

    Carrie, to put into words as you do so totally honestly and heartfelt regarding your Jack a boo and how his brain takes him on a different journey following a path unknown and of little interest to many, is a huge great comfort to other parents and grandparents ( My category) whose thoughts and worries are just as you put into words that we follow week upon week,, year upon year. Thankyou for helping to release the pressure on our minds of the stored up incidents that bring on questions of “why”, prompting short temper, anger and then guilt followed by the sorrow of not having been able to cope with or “fix it” for our special, complicated but never never unloved or deserted child as they grow into adulthood. Thankyou Carrie for your blog and to all the people out there who read it, and to those who reply….to read and share brings great peace even if only for a little while….until the next “incident” 😫😔😊

    Reply

  8. Kathy
    June 1, 2018 @ 9:53 am

    Thank you Carrie. For putting words to the feelings and fears so many of us share. You name the things that years of therapy don’t uncover. Maybe this is why I catapult myself into an intense fear of dying when I feel a cold coming on or have an unexplained twinge in my chest? I’m not crazy, I’m just afraid. Not of dying itself, but as you so accurately explain, of the legacy I’ll leave behind. Who will care for him when I’m gone, who will understand and empathize and explain and listen and love him…like you, I’m going to have to count on this village and then I’m going to pray that it’s enough.

    Reply

    • Jeff
      June 18, 2018 @ 11:16 am

      My son is 17. I am 62. He cannot tell time or make change. I never played catch in the backyard with him. I listen to him talk endlessly about computer matters. I listen to his Windows diatribes and am required to look at a computer screen as he loads something that takes forever to do in order to see some sort of mod that is in a game or something he created online. I get impatient. I tell myself that this is how he and I ‘play catch’

      Reply

Leave a Reply

%d bloggers like this: