15 Comments

  1. Susan
    February 12, 2018 @ 12:08 pm

    I really enjoy your weekly email. I have son who is 12 non verbal and feel exactly as you have written. I can tell you one thing this world would be in a much better place with more children like Jack and my son Matthew. My son has taught more about whats really important about life than I could ever teach him.

    Reply

  2. GP
    February 12, 2018 @ 12:14 pm

    I know it is hard not to take it personal when your child tells you to “shut up” while humming (as you mentioned on your facebook post today). In our case, it has helped me to remember three things when my child says something like that:

    1. What sounds rude to many of us, may just be a problem with communication. I think the difference here is intent. We are currently helping her learn how to “soften” what she says.

    For example, instead of saying a harsh “no” when being offered a food that she does not like, my child is learning to say “no thanks” with a friendly sounding intonation. It took a lot of practice, but she is getting there. I know that she is not rude when she sounds rude because true rudeness implies that the rude person is showing disdain for the other person. Our children are not disliking us, they are just trying to communicate, albeit in a way that might trigger others.

    To say “shut up” may have been the fastest, most efficient way for your son to get you to stop humming. My child often sounds rude because she has a tendency to speak in sentences that are “short and succinct.”

    2. Sensory sensitivities: Why would innocent humming result in such a harsh response? I recently read a blog by an autistic adult who stated that she heard all sounds in the room with the same intensity, unable to filter them. As a result, she had a hard time following what was being said and also focusing on her own thoughts. I have also seen that some sounds are really uncomfortable for some individuals, perhaps to those with hyperacute hearing or perfect recognition of pitch. We know a child on the spectrum who gets extremely distressed when others around him sing. He tends to yell to stop singing and complains that the singing sounds awful. I often wondered if it was because amateur singing tends to deviate from the perfect versions that may be heard on the radio, etc.

    3. Anxiety: I suspect that at baseline, when my child is not showing overt signs of anxiety, she may still be anxious. There is so much unpredictability in every-day life, so much to get wrong socially and in terms of emotional regulation that she may constantly worry about it. And we do not punish her for her disability, but obviously there are natural consequences in every-day social interactions. In addition, sensory sensitivities may contribute to baseline anxiety. Anxiety makes it harder to access the right words and the right tone of voice. I think that may be true for most of us.

    I suspect that when my child seems rude, she may already be anxious, may be distressed by sensory inputs, and unable to find the right words. It is not easy, but I feel that my child has been learning, slowly but surely, when we consistently, calmly model a “softer”, kinder way of communicating what she needs.

    Reply

  3. Mary Beth Danielson
    February 12, 2018 @ 12:39 pm

    I’m in.

    Reply

  4. Mary Beth Danielson
    February 12, 2018 @ 1:02 pm

    Also, there is the talk that possibly Barron Trump is on the autism spectrum. If he is and they are trying to hide it, that is their right but … I don’t even know what to say so I won’t say it.

    Eunice Kennedy Shriver helped start Special Olympics in part as a response to the lack of empathy and respect for people with intellectual handicaps – like her sister Rosemary. A legacy. For sure.

    Reply

    • Joanna Fisher
      February 12, 2018 @ 6:04 pm

      My heart breaks that this seemed somewhat political.

      Reply

      • Pat
        February 12, 2018 @ 7:50 pm

        I have to agree with Joanna. I am not highly educated in the Autism Spectrum but know that no one, even we ‘normal’, want or should have to deal with others judging our souls by what they want to believe they are seeing. Especially those with problems who are capable of knowing what their differences are…why torment them? I do believe that Eunice Kennedy did NOT advertise her child’s health. The public became aware, probably due to the Press, but… who needed to know WHY someone wants to help the weaker member of society? It’s the doing that matters.

        Reply

      • Carrie Cariello
        February 13, 2018 @ 7:31 am

        I promise you, Joanna, it’s not! I don’t write from that point of view.

        Reply

        • Pat
          February 15, 2018 @ 7:38 pm

          Hi Carrie, I don’t want to confuse things, but I think that Joanna was commenting on someone else’s comments that seemed ‘political’. I feel sure she was just sad about that. Me too.

          Reply

  5. Mary
    February 12, 2018 @ 4:37 pm

    Hi Carrie, Once again, your words bring tears to my eyes. I don’t have a child with autism but I have you who is teaching me so much about it. I know I would like Jack, you and your whole family. Maybe someday I will see you and I will say “hello” to a friend who shares from her heart but whom I have never met in person but only in your blog.. You are authentic. You put all of yourself out there. I have compassion for you, Jack and your family. You take me into your life and I see the pain and the joy.
    I do think it would help if some other people read this blog. The security people at the airport, the congregation at your church and other churches, parents and grandparents could all benefit.. Many of us just don’t know how to act or what to say to help but you are teaching us.. However, even before your blog, I have been aware of recognizing some children with autism.
    Thank you.

    Reply

  6. Joanna Fisher
    February 12, 2018 @ 6:02 pm

    Thank you for your thoughts and words. They help others so much.

    Reply

  7. Moira L.
    February 12, 2018 @ 6:39 pm

    Dear Carrie and Jack, I recently met a young man bagging groceries at Publix in Naples, FL. When he learned I was from Cleveland, we had a great conversation about LeBron James and the Cleveland Cavaliers and whether they will make it to the play-offs — as well as a quick discussion of why I was not a Cleveland Browns fan and why I did not care who won the Super Bowl. Yes, my sense was that he has autism, but my first reaction was that he really knew a lot about sports and was fun to talk to. Thanks for the weekly reminder to focus on the person not the labels!

    Reply

  8. Karen
    February 12, 2018 @ 7:39 pm

    Jack has a place in my heart.

    Reply

  9. Lisa
    February 12, 2018 @ 11:20 pm

    ❤️

    Reply

  10. Janet Inman
    February 12, 2018 @ 11:23 pm

    What a heart felt post. I love every one of your posts, but, today especially struck home. I so admire your honesty and a look into Jack’s life. I have never met Jack and probably never will, but, I know others very similar to him and pray that people will open their hearts and welcome all of these kids (adults) in. God Bless.

    Reply

  11. Stephs Two Girls
    February 15, 2018 @ 11:34 am

    I have huge hopes that younger generations are growing up more understanding and that there will be a point where everyone is different, and everyone accepts that. Idealistic maybe, but I have to hang on to that hope x

    Reply

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