7 Comments

  1. chinba98
    October 7, 2019 @ 9:08 am

    I can totally relate to today’s story. My son with Autism is 21 and it has been a long road & I too was a pusher & still am. He has a job as a house man at Hampton Inn but he can only work 3 hours a day. It’s still hard but in a different way- my grief is I expected both my boys to be gone & my husband & I could do stuff just the two of us. Not going to happen. Justin also has seizures with his Autism (started around age 16) so we can’t really leave him alone & I need to make sure he takes his meds. But he does he enjoy hanging out with us more& wanting to go places with his peers in the Adult Rec group so it’s good but I know how you feel.

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    • highviewhopes
      October 7, 2019 @ 1:27 pm

      I have an autistic son age 13.5 with seizures as well. One or two every five days like clockwork. But then again, I don’t ever trust that it would be clockwork even though it has been since August. So someone always needs to be by his side or in the vincinity. I think he will always be with us, too. Some days I feel angry but lately I have been feeling ok with it all. I think that is because I realize his strengths and I am focusing on that, finally.

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  2. Jodi
    October 7, 2019 @ 9:27 am

    Carrie, you’ve expressed the idea of making peace with this bear of a diagnosis so beautifully and honestly. You often write words I don’t dare say out loud, because of judgment (even from my own husband, grrrrr), and for this I am very grateful. The best advice we ever got — and sadly the bar is extremely low, despite dozens of doctors, psychologists, social workers, teachers, etc. who worked with our kid over the years — was from a psychiatrist who insisted, “Time is on your side.” She’s now 19, and I am cautiously optimistic about the possibilities. The growth from 15 to 19 was enormous! Hope you have a similar experience with Jack.

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  3. J anderson (grandmother)
    October 7, 2019 @ 7:45 pm

    I continue to pray for my grandson now 20 and all the children and parents living this life. Hope is a word I will never give up on. Without it, all would be lost. No there are no answers to so many questions, hope is what we cling to and look to the future with. Thank you for all you write each week. Sharing is so important and helps not to feel so alone. Bless Jack, you and all families,

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  4. Maureen
    October 7, 2019 @ 8:07 pm

    It’s been almost 11years, and like you most days I’m okay but suddenly a wave of grief, worry and guilt hit me, and I’m always surprised by it since I make such an effort to be positive. I guess it’s a release from holding everything together as well as exhaustion from holding everything together :-/and fear as you said of the future. The tears come and go, and I feel better until the next wave, which gets further apart.

    I am enjoying your blog and books help too 🙂 makes me feel like someone else understands this ride none of us wanted to get on.

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  5. Mel
    October 8, 2019 @ 4:40 am

    I so get it. Yet again. Our son is nearly 10 and we are starting to make plans for his future – ‘worse’ case scenario (group home). I remember when we received his diagnosis at 3 and I was so full of determination and fortitude, with the mantra of, “we can do this!”. But time makes reality clear and very hard. And fear, oh dear fear! Thank you for writing what so many of us don’t, afraid of being judged.

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  6. Sabra
    October 12, 2019 @ 10:14 pm

    Great post! We’re also a family with 5 (4 boys, 1 girl) and our second youngest (8 years) was just diagnosed with HFA this summer (diagnosed with ADHD when he was 4). Although our son is 8, I can already relate to much of what you said about Jack – thank you for sharing!

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