10 Comments

  1. chris
    September 2, 2019 @ 12:36 pm

    Your life seems hard. You are a strong person. We do anything for our kids, don’t we.

    Reply

  2. SCOTT WILCOX
    September 2, 2019 @ 3:26 pm

    Hang onto him as long as you can, dear Carrie. I did so with my daughter for 34 years, trying to prepare her for the day when I could no longer be her caregiver. We were alone for 28 of those years. And she is now in a group home because I’m old and worn out.
    She is about 2 in mental development, has no speech or forms of communication except by shaking her head, or pointing, or smiles.
    And kisses.
    She’s lost the ability to walk more than a couple of steps, even when assisted. She expresses her love with infrequent hugs, and lots of kisses though her kisses consist of only pursing her lips, as lack of suck ability makes it impossible to even “smack”. But she wants to do that that often, and it has been lovely.
    But now in the group home, that is considered “inappropriate behavior”, and is not allowed, even by her father. I am going to trial next month to try to get that stupid rule reversed. She adapted well to the home and my absence, so I guess I’ve done a fair job.
    But there is no love there at all.
    In the words of Tiny Tim, God bless us, every one!

    Reply

  3. Lisa Mertens
    September 3, 2019 @ 12:05 am

    Carrie, Your honesty is very much appreciated. Parenting is hard work, parenting a child on the autism spectrum is very hard work! Thank you for sharing your insights.

    Reply

  4. Deb Pacella
    September 4, 2019 @ 8:20 pm

    I’m so thankful for your posts about Autism and your son. I have a 15yr old too with Autism and sounds just like yours. Look forward to reading your blogs. ❤️😊

    Reply

    • GP
      September 9, 2019 @ 10:43 am

      Do you ever wonder why his conversation topics bother you so much? Sometimes, we have to ask ourselves honestly if we really have come to accept the various forms of communication, attempts to connect with a loved one, and the harmless forms of stimming as a way of self-regulation, that are all a natural part of autism. Talking to adults on the spectrum has really help me. There is so much good advice out there that will help children on the spectrum grow into confident adults with strong coping and self-regulation skills.

      Also, things like chewing nails and chewing on cords, which reflect sensory needs, can be addressed by offering chewies (like chewlery), which are commonly used among adults on the spectrum and which do not look like teething rings or anything like that.

      Reply

      • GP
        September 9, 2019 @ 10:48 am

        Sorry, my comment was not intended as a reply to your comment.

        Reply

  5. chris
    September 9, 2019 @ 10:15 am

    Scott, you are also a strong person. Your daughter is a lucky person to have you as a dad. Isn’t it sad that we lose that ability to relate to humans in nursing homes, assisted living places, etc. I understand that it is hard for some of the workers but they did chose that profession. It would be hard to watch no love being in a place that I had to leave my child in.

    Reply

    • Scott Wilcox
      September 9, 2019 @ 2:50 pm

      Thanks, Chris. I never thought that kissing/handholding would even be a subject to question. Even before my daughter came into my life, I had volunteered at nursing homes in Florida and even criminal facilities, and one of the things I learned was that physical contact was very important to these clients, even the criminals. Here it is not allowed, but I’m working on it.

      Reply

  6. GP
    September 9, 2019 @ 10:45 am

    Do you ever wonder why his conversation topics bother you so much? Sometimes, we have to ask ourselves honestly if we really have come to accept the various forms of communication, attempts to connect with a loved one, and the harmless forms of stimming as a way of self-regulation, that are all a natural part of autism. Talking to adults on the spectrum has really help me. There is so much good advice out there that will help children on the spectrum grow into confident adults with strong coping and self-regulation skills.

    Also, things like chewing nails and chewing on cords, which reflect sensory needs, can be addressed by offering chewies (like chewlery), which are commonly used among adults on the spectrum and which do not look like teething rings or anything like that.

    Reply

  7. akronroots
    October 9, 2019 @ 12:50 am

    Hi Carrie, when I read “the tone of his voice when he answers a question” my heart dropped a little. Can you describe the tone of his voice? Is it raised? Asking for well… me.

    Reply

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