1. cbspira
    February 11, 2019 @ 11:56 am

    It was hard for me to “like” your pain filled post so please consider it a hug.

    And I guess the like is for the magical way you arrange words to beautifully capture the pain.

    I recently heard someone state that if you woke up this morning it must be that G-D could not run the world without you, that you’re an integral part of what makes the world go round. Nothing about potential or scoring straight A’s – just waking up and being alive. Everything else is a bonus.


    • Gabriel's Angels
      February 13, 2019 @ 6:35 am

      That is so beautiful! Thank you for posting this – I will remember that.


  2. Lisa
    February 11, 2019 @ 12:50 pm

    My sister and I were grandmothers for the very first time when we had grandsons on the same day. But it turns out her grandson is typical and mine is autistic. Fast forward seven years, many of them believing my grandson would also “outgrow” his diagnosis, it’s becoming very clear that will never be the case. I have a typical great nephew who reminds me every time our boys are together just because the older they get, the more apparent their differences become.

    I believe I’ve accepted Harrison’s diagnosis but sometimes I also “feel grief’s cold fingers pinching me between the ribs” too. Because our two grandsons are growing up together. Sharing a birthday together, and one will learn to drive, and one will graduate high school and college, and one will get married.

    I love my grandson more than anything in this world and I’m very involved in his life, but it’s impossible not to worry about his future. And to wish things could’ve been easier for him. So I understand your grief very well. AND your great love for the boy you were given.


  3. Schnabs
    February 11, 2019 @ 1:33 pm

    Small triggers: when my friend’s kid got in trouble at school for doing something dumb with another friend. She was so upset with her son, and all I could do was feel jealous. I thought how lucky she is: her son has a friend, did something stupid under peer pressure, didn’t care what adults thought or whether or not it was against the rules. Perfectly typical and age appropriate! Sounds dumb, but I would give almost anything for my son to do something stupid with a friend. To have a friend.

    Hang in there Carrie, and please don’t hate yourself. This is not a just world and we can not make it so no matter how much we love our children.


  4. Janet
    February 11, 2019 @ 2:46 pm

    Wow. I’ve read several of your posts and they just really hit home. My 17 year old son is not much of a talker and has a few things he likes to do and not much else. I still find myself getting impatient with him and then I feel like such a loser. He is a great kid, he’s my child and I love him so much. Why do I have to get impatient?!

    My sister recently texted me a picture of my niece, who has almost earned her Masters in Social Work and just started that day as an intern at an impressive facility. In the photo, my niece looks so happy with her new ID card and I’m so darn proud of her. That same day my son started as an intern through his high school special needs program at a hospital working in the cafeteria. I am so darn proud of him. But this sliced right through me. The opportunities and experiences that won’t be available to him. What he is missing. It really hurt.

    That day I could not comfort myself with reminders of all that he HAS accomplished. But today’s a different day and we just keep moving forward.



  5. Melanie
    February 12, 2019 @ 10:35 am

    Beautifully written, as usual. Your thoughts stir up shared emotions. The grief springs up out of small things. That is the nature of it. I have hated myself for so many things I did in the past before my daughter’s diagnosis. I actually threw out her whole bag of Halloween candy out of frustration after she tossed the TV remote across the room during a meltdown. Talk about hating yourself! I beat myself up over that one all the time. She is high functioning, and at the time there was no talk of a spectrum. Well, now I know why at 26 years old she is obsessed with all things video games and anime and Comic Con. Her world is very different than her 19-year-old sister’s. I know I sleepwalk through the busy days and then all of a sudden it hits me again. Onward we must go.


  6. amy tackitt
    February 12, 2019 @ 6:30 pm

    I just found your blog while researching Zoloft that my 9 year old autistic daughter starts tonight. You verbally nail it, the ache every day, dag nab it, every…..single…..day. Thank you for sharing your story, I feel less alone just reading it.


    February 13, 2019 @ 12:02 am

    We always think it will be “fixed” somehow. Even at almost 34 years, I carry that hope. But yesterday I moved my daughter into a group home, and she seems to be adapting well. Very little walking ability, no communication skills other than gestures. I still hope, and pray. But she has a happy outlook, eats well, probably has no dreams of doing what other people do, because everything she needs is provided. Isn’t that what we all hope for? Don’t beat yourself up, Carrie. You are following G_D’S plan for all of you.


  8. Teri Smyth
    February 13, 2019 @ 2:28 am

    All of these comments are heart felt and simply astonishing. You are a great mother and writer and you stay positive.
    No matter how bad things get, my son Andrew always has something positive to say. He keeps moving forward even though his path is more challenging and scary.
    I related oh so much when you talked about how the autism rares it’s ugly head all of a sudden. It still happens to me when I question why my son is acting a particular way. Like when he came home early from work yesterday stating he threw up. Was he truly sick, or did he need to finish a school project? Cause the program ended last week. But was everything turned in on time? Did he just stop going to class cause he was overwhelmed?
    Time will tell. Until then, i will love him, give him crackers and gingerale and pray things fall into place for him.
    And I keep the faith just like you.
    Thanks again


  9. Gabriel's Angels
    February 13, 2019 @ 6:45 am

    I. So. Get. It.
    Our precious son is 8 years old now, our only child. He is considered ‘non-verbal’ and is now home-schooled by his carer, due to his sensory issues (as suggested by his psychologist). Sometimes I feel panicky as I look at his age and think that we are running out of time to help him. Help him cope in this f**ked up world. I can’t remember when last we went to a kid’s birthday party. I see friends’ posting photos of things their kids’ and friends get up to. It cuts through me like a knife. I want that for him. I hold on to hope and what my husband always says, “he is on a different journey”. Thank you for a great post, as always xxx.


  10. Maureen
    February 13, 2019 @ 7:47 pm

    I can’t fully express how much this post resonates with me. You put into words just how I feel.

    Most of the time going on with my day/week/month and then something minuscule triggers my grief and worry for the future all over again.

    Autism, speech disorder, mild cognitive delay, anxiety all wrapped up inside my incredible boy.

    Thank you, for your wonderful writing. I’m on the edge of my seat each week eagerly awaiting your next blog.


  11. Keri Thompson
    February 14, 2019 @ 2:21 pm

    Thank you! You’re not ugly and stupid or any of those things. Or if you are then I am too and so are hundreds of others. I do the same. Thank you for sharing this. I love reading your words. I love hearing our paths are similar in terms of loss and hope. Love you, Carrie!


  12. KT
    August 1, 2022 @ 5:45 pm

    I ache a lot today.

    I am not ok.

    Like you, my second son is autistic. 11yo, low-functioning, high-maintenance, non-verbal + easily agitated.
    I am struggling. My ‘embarrassing secret’ — I didn’t realize things could get worse as he aged, puberty, aggression. SO much worse.

    SO when the aches hit me this time, I did something different. I typed in whatever I was feeling into Google and let it bring me here.

    This only confirms I am not ok.

    I have rarely allowed myself to read the words of autism parents. Whenever I did, I would spiral and quite honestly just want to die.

    I still ache a lot today and I’m not ok but I appreciate the way you write. I have laughed and cried. I hyperventilated reading One Thousand Paper Cuts. I just cried typing the title.

    I don’t know why I’m writing this. You are rad. I miss friends. We will all be ok.


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