Tuesday, May 3, 2016


Let's talk about something cheerful and uplifting, shall we?

I worry about the Kiddo. A lot. He is creeping up to twelve soon (EEK!) and while he doing some things that would would expect a twelve year old boy to do, he is doing so many other things where the average person is like "Wait...what with this???"

And I feel a lot of shame over noticing the stuff that just doesn't matter. So that makes me feel like even extra shameful that I am embarrassed by some of the stuff he does or is into.

And I am a proud member of #TeamQuirky. I just should not care what others think but I also know the world sure doesn't work that way all the time.

The last six months or so the Kiddo has become down right obsessed all over again with all things Blue's Clues, Thomas the Tank Engine, Backyardigans, The Wiggles, pretty much the whole Noggin channel era of TV. Thanks to YouTube, those shows never die. I'm not sure why at this age he's ALL IN with this stuff. It could be that he finally has the language comprehension to follow it. I'm happy he enjoys watching it. Certainly gives me a twenty two minute break if he's deep into an episode of Blue's Clues trying to solve the mystery before Steve ever does. He'll even play pretend with his own mini notebooks around the house recreating the episode, line for line. It's like living "Murder, She Wrote."

Steve, you're going places. College however, isn't one of them. 

But outside of the house, yeah, that's when Shame pops up. Cause he's deep in his world of cartoons and expecting all around him to be exactly right there with him.  The average kid his age is not.  Even the most understanding adult we encounter usually isn't ever aware of what he might be scripting about.

And this is when I see how NOT ready for the world he is and I feel a ton of shame because as his mom, that's my job and my fault.

And here we are all these years trying so damn hard with him to get him ready and he so isn't there.

And I feel shame every time I have to act as his interpreter, explaining to all we meet what it is that he means. They hear him singing "Dorothy the Dinosaur" at the top of his lungs but it just means he's very happy at that moment and chooses to express it in song by Australians kid musicians, as you do.

And I feel shame every time I have to explain to him "Time and place, Kiddo. Time and place." because I find myself getting annoyed at him doing these things.  I want him to be himself but there are social norms.  Like it or not. As much as I would love to just sing all the live long day too, it's not how the real world works.

And I feel shame that I simply don't take a page out of the Kiddo's own book. I need to not give a crap like he does.

Does this look like the face of a Kiddo that gives a crap about what other's think of him? I think not. 

I feel shame about shame and that's when I start thinking "Shame is such bullshit." In situations like this one, it's completely worthless.

If I focus so much on what the world won't like about my Kiddo, I won't get to see it for the things they will love about him. I don't want to miss that. Shame makes you miss the good stuff.  I've already missed enough. I don't want to miss anymore. I won't miss anymore.


  1. After all, we know that autism is the result of bad parenting! So why not join with our critics and thrash ourselves in unity with them, singing "We Are the World" or something like that.

    But seriously, thanks for posting this bit of honesty. "Should have" shame is indeed bullshit and a useless enemy to caregivers. The guy on the swing ain't thinking you should have done this or that. Well, except playing more Blues Clues. Should do that.

  2. Shame is so hard. I admire you for talking about it. I think all of us Autism parents have experienced the feeling at one time or another. Sometimes the feeling is strong, fleeting, or not there at all, but it is a very human response. Please check out Brene Brown and her work on Shame and Vulnerability. She's an amazing person, but her work is based in research. It's super interesting. She does not speak directly about Autism, but the concept of Shame. She has several talks on You Tube (I think one of them is from her TED Talk) and Oprah has done some great interviews with her. I have her book Daring Greatly and like that as well...There have been times when her words have really helped me tremendously...I have watched the you tube video more times then I'd like to admit. Hugs to you my friend!

  3. As a single parent that had to take a job after being a stay at home Mom for 3 years (2 of those years attending school so the state thought I was doing something "useful" with my time, I can so relate to the feeling of not getting my kids prepared enough for the outside world and growing up. My oldest is 17 and my youngest is 12. I feel like I have done more to prepare the oldest son than I have the youngest and now I am worried that he will be so far left behind and out of the loop, he'll never catch up.

  4. I totally feel you. Especially the interpreter thing and the shame.

  5. People who look down on others for any reason simply lack compassion. And is their problem. I think what I worry about most is my kiddo's future happiness and safety. What will happen when my husband and I are gone. I do desperately don't want him to have to depend on people.

  6. I totally hear you! I just went to a conference by Social Thinking, it was amazing. She was saying learning social skills as a person who doesn't intuitively learn them is the hardest thing our kids will do. She also talked about the hidden curriculum (which is a book) and what she refers to as the hidden rules (which is what you're talking about when you say time and place). It was really very awesome but also made me realize how much more I need to be teaching. She's got all kinds of books for parents/teachers and kids to understand these concepts. I highly recommend checking her out if you're looking for help teaching these concepts, or even getting them into his school day.

  7. oh, yes, that! I felt that when purchasing a toddler toy for my son's 9th birthday which I could have gotten away with by saying nothing but his sisters were in line with me. So when the cashier looked at me sideways, shame. But then his wonderful sisters, both 9, jumped in and said "he's autistic. He likes musical toys."

    Shame = gone.

  8. So with you on all of it and wish to do better just as you describe!
    We went to the San Francisco Film Festival this past Sat. and saw "Life, Animated" which is much along the lines of what you're talking about. It was so inspiring to listen to this family in the Q&A after their film! I know you can't see that, but the film clip is inspiring: Thanks for all you share!

  9. I've never really worried about this. I'm so adept now at shutting out the world around us. The normal rules do not apply.
    I guess in a way I should feel more shame, because me doing that is not preparing them for what the rest of the world expects? But at the same time I think f*** everyone else! Why shouldn't they just learn to deal with some differences?
    My Little Miss is as tall as me now and it about to turn 11. She's started puberty and is developing. So even I look at her now and think it's a total mismatch between the physical and the intellectual. For that reason, sometimes I give people a little warning. "She has autism, so she's a little younger in her mind." Most people understand. Sometime I don't have to say anything at all LOL! Actions speak louder than words.
    And go the Wiggles, flying the Aussie flag! But to be honest, my kids always hated them.

  10. I struggled with this a bit at first when he was diagnosed. People would be openly critical to my son. When I began journey I had horrible teacher who said he didn't belong in regular school. Openly talk to other parent about his challenges. I had other parent discuss how he didn't belong in regular school even to go as far as to tell their kids not to play with my son. I was stricter than I should be hoping to normalize so that other people would treat him better. I was in denial about diagnosis. I start to believe the lie mother in law told about bad parenting and was to strict to my son.I succumbed to pressure that was being heaped on me Funny thing is when I filtered out other people G happiness skyrocketed. His stimming wasn't as severe. His anxiety levels were lower. Looking back I was pissed at that time. I was so focus on deficits I didn't help him properly at first. Now I don't listen to them. I fight back hard to those that would deny him help. I am stronger now. But every one and a while old me resurfaces.

  11. Hi Momma Fry, I have also struggled with embarrassment/ shame. It's hard, I think, as a parent of any child to know that their actions and behavior reflect on you, not only as a parent but as a person, when they do something "socially unacceptable" you know others are judging you and looking down on your child.

    I know our kiddos may not care about what others think of them but as a parent we can't help worry about it. We want everyone one to love and appreciate the awesomeness that is our babies, we can't help it, that's what makes us amazing parents, advocates, and caregivers. But I personally have learned that I can't make others think and do what I want them to and that everyone is in titled to their opinions. I perosnally, think my opinion about myself and my children is the most important one. It's hard to remember that when you are in the moment, but we cant beat ourselves up for a knee jerk reaction that has been drilled into us since we were children ourslves. I think as long as we come back to the knowledge that we have nothing to be ashamed of or embarrassed about because our kids are being themselves, they are doing what feels right to them, and we are all doing our best, that that in the end is what matters.

    I find that when we are in situations that may seem embarrassing; like when my son decides pants are optional, or we fall on the floor or yanking on my arm while we are walking through the store because it is getting to much for him; that those are the moments that make you stronger, and they are the moments that other people get to see and experience just a small amount of the struggles that are our lives. I try to think of it as a teaching moment to others, they get to see a good parent (because we all are good parents) handle a situation with a child with love and understanding.

    I too, try to explain my sons behaiors to others but I dont feel shame about that, I think others should know why he does the things he does, educating others about autism is a good thing, especially if they take that knowledge and the next time they meet someone who doesnt do the "socially acceptable" thing they have an open mind and have a little more understanding for them.

    Thank you for sharing about something we all ho through. It's hard sometimes to remember that you are doing a good job and its ok that we still have a long road a head, as long as we keep movie, right? 😊

    Oh and Blues Clues is awesome, i hear a lot of "doodle, doodle, dream" at my house. 🙄 Cause we're cool like that. 😆

  12. I thought I was past the shame myself. My boy is almost 5 and he was diagnosed almost 3 years ago. We've both come a long way since then. Then today, I received my daughter's diagnosis. I knew it was coming, but it doesn't change the fact that I did not handle it well. My rational mind tells me all the right things: it's nothing I did wrong, there's nothing wrong with her, she's still your perfect little girl, etc., but there's that other part of my brain that can't help but wonder if I did do something wrong, and why do my kids both deserve to go through this? I'm sorry, my husband isn't taking it well and I have nowhere else to vent. Thank you for all your posts momma fry, it's a comfort knowing I'm not completely alone.

  13. I thought I was past the shame myself. My boy is almost 5 and he was diagnosed almost 3 years ago. We've both come a long way since then. Then today, I received my daughter's diagnosis. I knew it was coming, but it doesn't change the fact that I did not handle it well. My rational mind tells me all the right things: it's nothing I did wrong, there's nothing wrong with her, she's still your perfect little girl, etc., but there's that other part of my brain that can't help but wonder if I did do something wrong, and why do my kids both deserve to go through this? I'm sorry, my husband isn't taking it well and I have nowhere else to vent. Thank you for all your posts momma fry, it's a comfort knowing I'm not completely alone.

  14. Great post! It's refreshing to hear from someone who understands.

    Our youngest has autism, as well as a rare digestive disease called eosinophilic enteropathy, as well as other special needs. He's 12.

    I homeschooled all 3 of our children up until this past (2015-2016) school year.

    At one point, a few years ago, I tried to have our son go to regular school for a few hours just for socialization and math help. Long story short, it wasn't a good fit. The teacher was awesome, and the kids were pretty nice, but that was the first time our son had really realized that he was a "bad" way. He felt like he was "bad", or "less than" the other kids, because they could understand the math, and he couldn't. He didn't understand a lot of social stuff, either. I think that was, for him, a big introduction to shame.

    This year we began attending an alternative school named "ORLA" in Olympia, Wa. Basically, it's a free, public, school for homeschoolers. Homeschoolers can take classes (like choir, or science in a lab) that are difficult to provide at home. They also have academic classes available for those who want them.

    Our older 2 kids go to classes for academics, while my 12 year old does "Time 4 Learning" for academics, and attends social skills classes. When isn't in class, or doing homeschool stuff, I can take him out to the school's playground to play with friends. He eats meals with friends there (they all choose to crowd around a table with me)!

    This is the first time that our son (the one who has autism) has had more than one friend. He's still getting used to talking to more than one friend at a time. It's great to see him surrounded by a bunch of little guys, all excited to discuss dragons (or whatever) with someone who's actually interested in their topic of interest!!

    It is an incredible environment. The school goes from preschool through highschool. If a family has a homeschooler under 12 (or who doesn't do well without you there), the parent has to remain on campus. Some parents of older kids just stay there because they like being involved in their kids' life. (My teenagers' friends actually initiate conversations with me! There are parents, babies, toddlers, and high schoolers all over the place there.

    There are many kids on the spectrum there, along with many who just don't fit into the mold set up by regular schools. The majority of the kids are "typical", yet differences are embraced; not feared or ridiculed. As parents of kids with special needs, we "get" each other. Even parents of typical kids respect everyone's journey.

    My point is, I guess I'm just excited that there are parent partnerships, as well as other alternative schools out there as options for homeschoolers. It gives me hope that, at least in some places, kids with autism are truly accepted, not just tolerated. There's a big difference.

    Acceptance can heal those wounds from shame.

    I also have a blog ( My vision for it is to be a place where parents can go to give and receive information, tips, and support. I'd love it if you, a fellow blogger, would check it out.

    P.S. I use a psudoname on my blog. Can you please not post my (real) name or my email with my comment if you post it? I'd really appreciate it. :)

    Thanks for your hard work; you are making a difference!

    1. We are headed back to Olympia in a few weeks. My son is almost five and is heading back to Madison developmental preschool for one more year. The transition to kindergarten has me nervous. Thank you for sharing about ORLA. I am now a single mom, my ex couldn't handle the challenges in a healthy way so homeschooling isn't something I think I can do and still work. But good to know that later when he's older there may be some alternatives.

      I am good with the singing and the dancing and I join in. The part that I am working on is when we are curled up on the floor in the store because it's become too much too much. But I'm getting to be ok with that too.

  15. Thank you for this post: the elephant in the room. Stress and shame seem constant in autism families: in the autistic child and the parents.
    Other comments have mostly described younger children and quirky behaviors that are easier to overlook in children. Wait till the children grow up, and their behaviors are larger, louder, seen as more threatening.
    My late teens son has autism, and he looks like a grown man. When he screams and curses in public, it's taken very differently than if he were younger and smaller. Police have been called on us a few times, and I am more afraid now that someone will over react and shoot. The aftermath of each episode is relief (that it's over), shame, and anxiety about the future.
    His behaviors are getting more challenging, including inappropriate sexuality. That's not just quirky and out-of-the-box behavior, it's dangerous to himself and others, potentially illegal, and a whole new layer of anxiety and shame.
    School days are a bubble until age 21 or so. Adulthood has no support and higher expectations. I may care less as time goes on, and get better with coping, but the anxiety, shame, and chronic stress never disappear.