21 Comments

  1. ajsteele55
    March 21, 2016 @ 10:04 am

    Oh girl. This is good. Very timely and a little heart wrenching. Great post!

    Reply

  2. gbejinMarie
    March 21, 2016 @ 10:14 am

    Thank you for this post. My son had horrible reflux too as an infant. I must have gone through 7 different pediatricians in order to “fix” it. In the end, I think he just outgrew it. 🙁

    Reply

  3. GP
    March 21, 2016 @ 10:32 am

    You are definitely a gifted writer. What a moving post! I hope your son’s spirits will lift soon. I am sure you had him evaluated for depression and generalized anxiety disorder, diagnoses which may be delayed or missed in children on the spectrum. In our case, we initially tended to attribute most symptoms and behaviors to autism. Eventually, we realized that there was another diagnosis as well, which changed the way we and her physician approached treating her symptoms.

    Reply

  4. Merceda Reale
    March 21, 2016 @ 11:56 am

    Definitely could be depression and/or generalized anxiety disorder going on. Still waiting for an initial assessment for my daughter. In the meantime, she’s been obsessed recently with why we adopted the cat with whom she shares a heightened sibling rivalry that goes both ways; and why won’t we adopt our daughter (no explaining she was a gift to us directly from heaven and we didn’t need to adopt her). So she’s screaming/crying at me yesterday ‘WHY WON’T YOU ADOPT ME’ and ‘I’M NOT GOING TO DIE FOR THE REST OF MY LIFE’. I promptly decided to adopt her. Really enjoy your writing.

    Reply

  5. Lori Wicks
    March 21, 2016 @ 12:50 pm

    Perfectly stated, Carrie. Perfect.? I *get* everything you were talking about.

    Reply

  6. Amy Munera
    March 21, 2016 @ 12:50 pm

    Perhaps if you stopped looking at something that is an integral innate part of your child as something separate, alien, something to fight, and accepted your autistic child as the person that he is, you might find more peace in your heart and in your family. I know that there is so much messaging out there making autism this fantasy boogie man than families need to “fight” to “rescue” their child, but I have found that as I have moved from fear to acceptance, my life and the lives of my three autistic children have improved immeasurably.

    Reply

  7. Cassie
    March 21, 2016 @ 1:07 pm

    I have two on the spectrum, ages 4 and 6. I saw a lot of myself in this post. Very well-written. 🙂

    Reply

  8. Rebecca Garnett Haris
    March 21, 2016 @ 1:32 pm

    What a gifted writer you are. I have an autistic daughter so relate to every word. The way you express it on paper is breathtaking and beautiful and I wish you’d write a book. ❤️

    Reply

  9. Mariana silva
    March 21, 2016 @ 1:42 pm

    Thank you for the great post! We just visited a family with an autistic boy… We got “warned” by the dad, and we could clearly understand the difficulty by looking at his mom… I hope one day they will learn how to love hating/ hate loving this situation…

    Reply

  10. Sharon
    March 21, 2016 @ 2:24 pm

    “I can’t don’t know” used to be the cute statement in our house. I still say it. Ellis, not so much. He played basketball this year. His play was “Jelly (his nickname) on the block. When he heard that he knew he was supposed to get under the basket. I’m getting t shirts made up. Our autism diagnosis anniversary date is May 2005. Autism…..the love hate war…

    Reply

  11. happy camper
    March 21, 2016 @ 2:56 pm

    Carrie,

    So beautifully written. Thank you for allowing us to enter into the paradox of life with autism. Jack and your other children are certainly blessed to have such a strong woman as their mom.

    Reply

  12. Vi
    March 21, 2016 @ 4:34 pm

    Carrie, you are an incredible writer. The way you can paint pictures and stir up emotions with your words – it’s a gift. It’s also a powerful tool. Right now, you are using that tool to build up an image of Autism as the enemy, some sort of demon possessing your child.

    In the middle of this piece, you write “To hate [autism] would be to hate a fundamental piece of my Jack-a-boo, and that is something I can never ever do, no matter which way the silky petals scatter in the wind.”

    That message, however well-intentioned, is drowned out by the thousand words that came before it. Please. Reconsider the way you talk about your son’s neurology. If he were reading these words, would he pick up on that one line towards the end? Or would he, like me, feel an overall message of hatred and blame himself?

    Reply

    • Allison GK
      March 21, 2016 @ 5:17 pm

      Hi Vi, thank you for your reply to Carrie’s piece. It is always good to have varying points of view. As a mother of an autistic son, I relate very strongly to what she is saying and feeling. I want my son to be free of the suffering he has a result of autism. I am angry and hurt and suffer myself that he must go through so much because of autism. That is why we, just every once in a while, in pain and sorrow and tired and grief and frustration let out a teeny little hatred for this terrible autism that causes so much suffering in our child and wish it wasn’t so. It is never our deeply loved, much sacrificed for child that, it is for the autism. It is not just neurology. It is his life and his feelings and his hopes and his dreams and his friends and his wife and children, much of which he won’t get to have all because of autism. I hope you can understand.

      Reply

  13. Beth Honji
    March 21, 2016 @ 4:46 pm

    It was wonderful meeting you Saturday in Framingham. I laughed and cried along with everyone else. You truly are a gifted writer and speaker. Thank you for sharing and speaking so frankly about your familie’s challenges and victories with Autism.
    I wasn’t so lucky with my marriage but I wouldn’t trade my two boys and their Autism for anything. They have taught me more in their 17 and 13 years and given me more love and gifts that I will treasure for a lifetime.
    Keep doing what you do. Thank you.

    Reply

  14. Allison GK
    March 21, 2016 @ 5:46 pm

    Thank you so much, Carrie. I read your postings every week. I am grateful. I am to learn what you go through and how you cope and get to know your family. This really helps me so much. And therefore, you and your beautiful writing and your column and your family help my son. I also weep nearly every single week. I weep for the love and the sacrifice and the exhaustion and the patience and the suffering and the grief.

    Reply

  15. Jami
    March 21, 2016 @ 11:13 pm

    Carrie…thank you so much for your posts. I am a mother of an 8 year old boy who has autism. It’s so hard to put into words how I feel about autism and what it means for my son and us as a family. You have a way of putting into words what I think about but can’t quite verbalize. Thank you!

    Reply

  16. esthermalkah
    March 21, 2016 @ 11:46 pm

    Heart wrenching. Thank you. I feel you deeply. You resonate so loudly with me. Hugs. Different diagnosis, but still similar torments.

    Reply

  17. Jan Anderso n
    March 23, 2016 @ 5:24 pm

    I deeply feel your pain. Being an older grandmother with a grandson on the spectrum. I understand how difficult it is when there is nothing you can do to change what you have been handed. Continue to fill Jack with your love and remember God will never leave you alone, he shares your pain even more then you can understand. Thank-you for sharing your most inner fears and frustration. God bless you and your family this Easter Season.

    Reply

  18. Amanda
    March 24, 2016 @ 10:55 am

    Beautiful., elegant.. Honest and so touching. I can relate to every word. Thank you for sharing. Thank you for writing.

    Reply

  19. Kim Dedmon
    March 28, 2016 @ 12:54 pm

    Carrie, I truly feel like we are walking along the same path at the same time – we are in the midst of the storm and I can’t see the shore for the waves. I know there is some turmoil going on in my son’s head but he can’t tell us what it is or how we can make it stop. We are searching for someone that can talk his language and help us get through…but every day, my emotions range, much as yours, from adoration to fury and frustration – back to love, always love. You put into words so much that I think about but don’t express to anyone. Thank you for speaking and writing so well – for those of us that can’t. And please know, that even though we don’t know one another personally, you and your family are in my prayers.

    Reply

  20. Cynthia L
    April 1, 2016 @ 8:00 pm

    This was so powerful and moving. I have three children, none diagnosed with autism, but all with anxiety or bipolar disorder. Different monster, similar situation. We just want so much for them. Want the life we imagined for them when we felt them kicking inside. But it is what it is. Every person, every child has some burden or challenge they will face. Some are more visible than others, that’s all. Some are lifelong, others come and go. “Acceptance” helps, but so does being able to honestly express how pissed off or sad or jealous or overwhelmed we are as parents. I often feel desperate, exhausted, isolated, misunderstood, defeated. Stories like this are like a soothing blanket wrapping around me, saying “You are not alone.” And it reminds me that within the struggle there are many, many blessings. Thank you.

    Reply

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