7 Comments

  1. Cyndy Hill
    July 12, 2021 @ 9:12 am

    Carrie – I so enjoy your posts each week. I, too, am an autism mom. My son is 21. Saying the teen years were hard is an understatement – puberty was not nice to my son. My son regressed, became non-verbal, incontentent, and destructive. He was diagnosed with catatonia and hospitalized when he stopped eating and drinking. The doctors weren’t sure he would ever “come back.” But, he did. We made the very difficult decision for him to have ECT treatments (the gold standard for catatonia) after high doses of ativan did not work. Slowly, he came back. He “relearned” what he lost. He is now headed to college to attend through a special program. He will live on campus (2 1/2 hours away). I am beyond thrilled for him.

    Hang in there. We can do it. Cyndy

    Reply

    • Carrie Cariello
      July 12, 2021 @ 9:31 am

      Thank you for sharing your story, what an inspiration you and your son are.

      Reply

    • Merceda
      July 12, 2021 @ 11:08 am

      Cyndy, I, too, am an autism mom of a 12 y.o. Not sure I should type this ‘out loud’, but she’s not been too difficult. Not sure whether she’ll ever be independent, but I work at a university that provides a very generous tuition benefit for dependents. Do I think she’ll use it? Not sure. But dang it, I’m going to stay and be sure the benefit can be used, because we don’t know what the future holds. Heck, I don’t know if we’ll be here tomorrow. So I hope for the best.

      Carrie, Most days, to be honest, I’m just crossing my fingers and holding my breath.

      Reply

  2. Sharon Frels
    July 12, 2021 @ 9:17 am

    My hope & prayer is that Jack has a good experience this summer. I think he will. ♥️

    Reply

  3. Paige M Mills
    July 12, 2021 @ 1:10 pm

    All the tears for you this morning Carrie…tears because as autism moms we know how scary it is to have our boys out of our sight, praying that they will stay safe and feel more joy and less worry. And tears of hope and love that your family was so strong that you made this possible for Jack. It can be so intimidating but we can do it. We have to do it. As you said so well, there is only one chance to raise our boys…deep breaths today. I can’t wait to hear about Jack’s adventure!

    Reply

  4. shortygetsfit
    July 12, 2021 @ 1:47 pm

    I was just talking about something similar this morning with my husband. It doesn’t end, it evolves. My circular feelings…I know I should be glad my kid wants to ‘do things’ (huge deal for him to leave the house) but sometimes I am just so tired of everything being a damn social story that I need to be involved in. He wants me to do the commuter rail and subway transfer to go into city with him in case he ever needs to do that. I know that sounds like ‘well that could be fun’, out and about. I feel guilty because I know I should be thrilled he wants to do this and with me (typically I am his biggest annoyance…things like how I chew, breathe, etc), but I know it will be so stressful. Then I feel badly that I feel that way.

    Like you said, Carrie, “He has needs I can’t begin to understand.
    Some days, I feel like I am holding his future in the palm of my hands.”

    But sometimes I just wish it were different & I know feeling that way is not good for anyone.

    I live a mix of feeling an abundance of gratefulness for all that he/we have accomplished in this sometimes surreal life and also a little depressed & tired that nothing’s easy & trying to also meet the needs of an older kid (with his own challenges) who couldn’t wait to go far away for college because of all the chaos & meltdowns (not so much now) of his brother.

    Yup, autism doesn’t end after high school.

    And yes, I know I need a therapist. That’ll have to wait until Fall when more therapist have in-person sessions. I certainly can’t do tele-therapy with husband working from home & kids around. So thank you all for letting me get this stuff out:-).

    Reply

  5. Tabitha
    July 12, 2021 @ 4:25 pm

    Hi, Carrie. You’ve been speaking to my heart since I found your blog. You put words to thoughts I have had for years. My young men are 29, 25, and 21. Our oldest and youngest are on the spectrum. Even though we have been on the same journey for 21 years, the path has been so different for each of them. I’m still not sure I am doing anything right on any given day, but like you, I get up every day and try again.

    When our oldest son was almost 23, he was involved in a car accident. He walked away with a concussion and a dislocated shoulder and made a complete recovery, but the experience set off a chain of events that ended with my husband and I in front of a judge assuming guardianship. While I have since learned things about guardianship that concern me, at the time, it was the best option. While on paper we restricted his rights, we have always had open conversations with him about the things he wants to do. We have allowed him as much choice and autonomy as possible within the context of the guardianship. Wherever possible he has been an active participant in making decisions for his life. However, in situations where service providers or other people might not have his best interest at heart, we have the final authority to make decisions and protect him. For our youngest son, we do not have guardianship. TX now offers something called Supported Decision Making. I’m not sure yet how I feel about it, but it is the available option at the moment.

    I hope this helps to encourage you regarding guardianship. It feels so final, but it doesn’t have to mean he never has a voice. It just affords you the ability to be the official authority on what is best for Jack. ❤️

    Reply

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