16 Comments

  1. Mary Beth Danielson
    February 8, 2016 @ 11:11 am

    This breaks my heart. Thank you and thank you, Jack, for letting me know more than I knew before, by seeing this photo and hearing this story.

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  2. Cindy.pulliam@twc.com
    February 8, 2016 @ 11:26 am

    I so enjoy your blog Carrie. You have enlightened me. My heart aches for you, Jack a boo & your family. Hugs & prayers.

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  3. Beth Ching
    February 8, 2016 @ 11:36 am

    Again this week I feel your pain as I too have gone through Autism Hell. We had to leave Christmas Eve family festivities this year early (My 17 y.o son Justin had just started his seizure med & it made him aggressive & my extended family decided to “Change it up” this year & have it somewhere that wasn’t Grandma’s house. I could see him growing more & more agitated so I chose for us to leave while my husband & older son stayed behind for holiday fun. He broke down in the car screaming etc… I too had to let him scream it out then off to his room in fits of tears-I too laid in bed matching my breathing to calm him. I do find in the quiet moments following a huge meltdown like that we have the best talks & that is something no one else has with him & I feel special. I try to hold onto that & when he looks at me & says “Don’t ever give up on me”, I know I won’t & will continue to push through the gates of Hell.
    Hope you have a better week. 🙂

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  4. Glenna Toyne
    February 8, 2016 @ 11:39 am

    Heartbreaking, thank you Jack, Carrie and Wolfie for sharing your story and photo. Xxx

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  5. Melinda Shroyer
    February 8, 2016 @ 11:51 am

    I read your blog every week and every week I shed a tear.☺ I too am an “autism mom” and I get it! Our journeys are different, yet in some ways they are quite the same. My son is 6 and I have no clue what the future holds for him, but like you, I’m a fighter for my son. He’s come a very long way, yet I know we have a longer road ahead of us. Thank you for this blog, because I tell my husband every week after reading, “I just love her, her honesty is on point and I finally feel like I don’t have to hide anything and it’s ok to feel the feelings I feel at times.” Anyway, as I wipe my tears today, it’s not because I’m sad for you or anything like that, it’s because Jack is amazing and through this blog I’m able to understand just how my little guy might be feeling at times. Will you please tell Jack “thank you” and that I love reading all about him. Thank you Carrie, you truly help me! Have a great day!

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  6. K Smith
    February 8, 2016 @ 12:34 pm

    Oh, sweet boy. What a good Mom you have. Thank you for sharing. xo

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  7. juliep
    February 8, 2016 @ 3:36 pm

    I know these moments well.

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  8. Sheri
    February 8, 2016 @ 7:11 pm

    Thank you for sharing ‘My Baddest Day’ with us. My 10 year old son and I often read sections of your blog posts together. This time, he was so moved by Jack’s very sad day that he began to cry as I read your words out loud. You see, he remembers feeling all of those things that you describe so beautifully and vividly. He had his own ‘My Baddest Day’ that carried on for several years, and we talk about it sometimes. But this evening he heard it from a mother’s perspective, which was equally heartbreaking for him. My boy, who comes last in every race, and writes in the scrawly print of a much younger child, said a beautiful prayer for you and Jack. And I said an additional prayer of thanks, that my boy is able to express, (in words), his empathy for you borh. We wish for your ‘baddest days’ to finish, and hope it will be soon. Xx

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  9. rocketbotmom
    February 8, 2016 @ 10:34 pm

    I think there must be thousands of moms that feel like you must be living in their head with your posts. You are so honest and forthright with your life and feelings. I am a caregiver for a 12 year old autistic boy and share many of the same as well.
    I hope you have a better week and Jack doesn’t have another “bad” day like that for a long time.

    God Bless

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  10. Deb
    February 9, 2016 @ 8:03 am

    I’m glad Jack was able to tell you the real reason he didn’t want to write the letter and that he understood the reason. This broke my heart.

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  11. Pam Sharma
    February 9, 2016 @ 2:51 pm

    I love that Jack read your text out loud,,, you must laugh about that one! and Wolfie a gem a true gem. I am so glad jack has a best friend!!

    It warms my heart that your son and daughter were so empathetic… offering to stay home with Jack… and your daughter trying to help. That makes for a truly special family.

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  12. susisk12345Susan Doyle Sisk
    February 9, 2016 @ 4:02 pm

    Bless you Carrie and much hope I send you for the future. I am the mother of a 27 year old with Asberger’s who can so identify with what you are going through. I to fought the “Middle school “battle as I liked to call it. It was hell and like you I have been to hell and back. But Life is good now and my boy drives now and has graduated from college. Although he is having a hard time finding employment (no surprise there) we keep moving forward into the light – where all hope is. It does get easier and calmer Carrie, trust me, it does. These days will be forgotten and replaced with new and brighter days and you will forget the days in Hell. Trust me Carrie, you will.

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  13. Tabitha
    February 9, 2016 @ 5:22 pm

    Carrie, I often cry at your posts. People have been telling me for years that I should write a book, but I simply cannot find the time and energy. Reliving some parts of our life to share them with others is exhausting – nearly as exhausting as living them in the first place. In a way, you are telling our story. Except I was never as tuned in to my older son’s feelings as you are to Jack’s. We hunkered down and survived the bad days, but I never tried to understand the “why” of it. You are an inspiration!

    I would dare to disagree with a previous poster. You will not forget the days in Hell. Over time, their grip on your emotions will fade, but you will always remember them. I don’t believe that God wastes suffering, and if anyone suffers, it is an autism parent. I use my past experiences, my suffering, to help other families cope with their own autism journeys. No two experiences are exactly alike, but most have some common threads. As a parent with 2 Aspies, one 24, the other 15, I cannot sit by and watch another family flounder the way we did. You, too, use your suffering. You share it in the moment. You let other families know that the things they are experiencing are normal, at least as normal as autism allows. It’s ok to have feelings. It’s ok to make mistakes. Trial and error is sometimes all we have, and a lot of the time it’s way more error. You say all of these things and more each week as you share Jack’s and your story. Hold on, Carrie. It gets easier. There will be more light days in the future. God bless you as you share your life with all of us.

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  14. Amy G.
    February 10, 2016 @ 12:14 am

    OMG, you’ve written from my soul. Right down to the dog by a different name. I am in tears right now, but so grateful to know that SOMEONE hears my thoughts and understands.

    Having a child like my 11-year-old son (I have never met you or Jack, but from your writings it seems like he and my son are somehow long lost twins) is joyous and hard in so many ways, but one way that doesn’t get talked about often is figuring out what level of expectation to have. Just like with ‘neurotypical’ kids, we, as parents, have to figure out how to be flexible and not expect too much, but also set expectations beyond them for them to reach for and grow into. But how do you figure out what level of expectation to use when you’re dealing with wants, desires, actions, and needs of an 11-year-old while your child is still reasoning and processing emotions as a three-year-old? Just like with the siblings when they test your limits you think, how much will I pay for caving just this once? But you know that to a child with perfect recall, caving once means a new, undeniable human right (the one time though that we’re glad that they aren’t terribly good at generalization).

    I have to say what really made me start to cry was when Jack said that he was too embarrassed to say he was sorry. I know that sigh of relief, knowing that you’re headed back into the light. You’re exhausted and know you’ll feel like you have a hangover for probably the next two days (ah, the mletdown hangover). But in that moment you also feel victorious and proud. Not because you lasted it out or won by holding your ground, but because he was able to figure it out and express it all on his own. You feel victorious because he was victorious (although victory certainly doesnt feel all that great for either of you after a meltdown). He IS reaching and growing into needed expectations just like the other kids. And tomorrow is a new day. Because this is how Autism works.

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  15. ajsteele55
    February 11, 2016 @ 3:23 pm

    Wow. This beautiful! We have recently endured 6 meltdowns in the past two weeks, and you capture exactly the torment. It is just heartbreaking and I am so relieved to know I am not alone. Thank you for taking the time to write and express what so many of us cannot find the time to do.

    Reply

  16. S
    February 15, 2016 @ 6:34 pm

    You, your Jack, his siblings, your husband, and Wolfie are simply amazing. Truly.

    Reply

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