1. epsilopoulos
    September 16, 2019 @ 10:05 am

    Carrie, every Monday morning I read your blog and it speaks to a small part of my heart and soul. I have two amazing young boys on the spectrum. They try me, my marriage and my family. But I love them fiercely. They have changed me and they have shaped my view of the world around me.

    These children, teenagers, young adults and adults on the spectrum are here. Part of the world yet separate, but they are here to challenge us all to include them in the way that works best for them. Would I change them? No, not really. But I would change the world so they can be included and accepted.

    I think that is what I like the most about your blog, is the way you explain autism to the world. Thank you.


  2. Teri smyth
    September 16, 2019 @ 11:44 am

    Autism does change us mothers. I try to remember what i was like before my son was born and diagnosed. But, it doesn’t matter really.
    My husband and I still worry about him and his brother who has his own struggles.
    And yes, autism has caused strife in our marriage. It’s the one issue that we both feel passionately about, so we don’t talk about it much. Better to brush some things under the rug.
    But all in all, our Andrew is happy.
    That’s all we can hope for in the end.

    Take care Carrie. Let go of those things we can’t control. Embrace your son’s differences and he will thrive from your love and attention.


  3. Rebecca
    September 16, 2019 @ 7:55 pm

    Have you set up a special needs trust? Do you have life insurance to fund it? Do you have a will? These things can help you feel better about “what will happen” to your child should you die.


  4. Leagle11
    September 19, 2019 @ 9:28 am

    Carrie, that it the ‘forbidden question: “If I could, would i……”. I can’t even bring myself to finish the sentence. Do we ask ourselves that? Sometimes it starts to form in my brain and I quickly change the mental subject. Just like I never think about where some of my food comes from when I am enjoying a nice meal. Hide the thought. Dont let it fully form in your mind. I remember when we were trying to get services for my son (his name is Jack too…………I called him ‘Jackie Bear’ when he was young) we had a full neuropsych work up done at the Yale Child Study Center. They came back with a full 19 page report. Significant ADHD, severe memory deficits (working, short term, long term, info presented verbal and written), and……….ASD. Back then it was PDD-NOS. As we prepared to go to the PPT, I asked that Yale give me a one-pager specifically noting the ASD diagnosis. They sent me a letter stating that my son was on the Spectrum. I remember going to the fax machine at work and getting the letter. I was immediately thrilled since I knew that when I presented this to the District they would have to provide my son with the services he needed. Then I sat down at my desk and cried…. because my son was diagnosed with autism. But at least now I could get him the services he needed (or at least have another weapon in the fight to do so).
    Do I allow myself to ask that question? No (or at least I try not to). Its like trying to stop yourself and your sisters from creeping downstairs on Christmas morning ostensibly to ask your parents a question — but in reality conducting a covert recon mission to see what’s under the tree. It is tempting but forbidden. But at times, in a moment of weakness, the thought creeps into your mind. Do you allow it to stay? Or do you banish is? How does the question even present itself? Do you wonder, what would my son’s life be like without autism….or do you wonder what would your life be like if he did not have autism (if the latter you are then confronted with the shame of considering this selfish rumination). Do you consider what would life be like if your son was ‘typical’, or you think of it in profane terms of what would it be like if your son was ‘normal’? Carrie, I get your blog every Monday and when I feel brave enough I read it. I find that my experiences and thoughts are often like the left rail to your right rail on the train tracks — running parallet into the mist. My wife gave me your book ‘What Color is Monday’ for a Father’s Day present. I read it this summer on vacation. At the end you are discussing how you have become a better person and brush on the topic of change. I dont know what I would do with if given this magic wand. Certainly I love my son with all my heart.Would I chage him? Would it be for me..or for him? Is it changng him or freeing him? Is it chaning him or making him ‘better’? As you mentioned we do things already for them (social skills classes, special schools, medication maybe…etc). Is that changing them or providing them with the tools they need to cope? I don’t know. I can tell you my biggest wish is that my son be ready, able and prepared for when I am not here. I know for sure that this is what I wish for.


  5. Ana
    September 21, 2019 @ 3:23 am

    I would get rid of my son’s autism in an instant if I could! Let’s not be afraid to say it!
    Autism doesn’t define my son’s personality, he would still be really good at math, a great swimmer, he would still love chocolate, a cuddle and be the cheekiest boy ever!
    But he would also be able to go to our local school with his big sister and he would be able to play with his peers which is something he craves so badly but just doesn’t know how to do!
    And we would not love him any more than we already do!


Leave a Reply