Thursday, June 17, 2010

Why Autism Sucks: Chocolate Chips, Cheap Wine and a Big Ball of Poop

When you cap off your night with two glasses of Merlot and a bunch or raw chocolate chip cookie dough, chances are the day has been rough.

Autism. Really. Sucks.

And my rose-tinted glasses are frequently cracked.

Some days, they simply cannot be found. And I don't even bother to look that hard.

Why did autism suck today, you might ask????

Well, there were the typical, every-day reasons. My non-verbal, six-year-old son screamed in frustration about something that still is a mystery to me. He carried out his current stim with just as much intensity as he did the day before. I literally had to sit on him in order to cut his toenails.

And, for some reason, for the first time in, well, a long time, he pooped in his pants.

His swimsuit, to be exact.

At a city pool.

Thank GOODNESS (I won't say "God" because I am not in the mood to bring God into any of this), he was OUT OF THE POOL. And I noticed it as soon as it happened./

But when the "bright side" of things is that you didn't have to tell a life guard to clear the pool on account of your six-year-old's poop ...... well, is there REALLY much of a bright side?

Oh, and let me not forget, I was at that city pool with my autistic son, and my four-year-old daughter, and well, NOBODY.

My son has done great taking himself to the potty at home since we really hit the potty-training business just after his fourth birthday. And I am so glad. But, STILL, STILL, I can't count on him to communicate the need to go when we are out in public.

And the kid is a pee fountain.

I take him to pee more frequently than a chain-smoker lights up.

We had been doing so well with not having accidents, until recently ....

And when the accidents start, they seem to come in big numbers.

But, REALLY, POOP???? And at a pool????

I am Ms. Automatic-pilot when there is such a situation. I am not good at many things, but if there is an autistic child with a poop crisis in public, I am your girl.

So, when I saw the face, and confirmed the existence of a wet, messy poop, I just went into action.

I took both kids to the bathroom immediately and got my son to the potty where he finished his business. I checked out the swimsuit and realized it was NOT worth saving. Good-bye new swim trunks. I cleaned up his messy bottom and took him straight to the shower, where I scrubbed the both of us down with soap as if we were about to perform surgery. I went back to the bathroom stall and cleaned up the toilet. And, because all of the spare clothes for my son were in the car a good distance away, I let him wear my tee-shirt. (I had my swimsuit on, people, so don't get any ideas).

It was all a pain. A great big pain. Shouldn't we be well past this?

I certainly let my son know just how unhappy I was with the circumstances. He wasn't very happy either, my poor boy.

It makes me frustrated.

And it makes me sad.

Sad for me, because, yes, I sometimes allow myself a bit of self-pity. I had no idea this would be what I was in for when I first learned I was pregnant.

Sad for my son, because, after all, he deserves the most sympathy. He is the one who struggles to understand this world, and without the benefit of ANY language.

And sad for my daughter, who sat through this whole ordeal on a bench in the bathroom by herself.

She is plenty old enough to understand that her brother should not be having these problems.

She is sophisticated enough to realize that her mother is S-T-R-E-S-S-E-D. And, that, in turn, brings stress to her life. She actually worries about me. My four-year-old daughter worries about me.

Oh, lord, just pile it on.

I am so very, very sad for my daughter because there are many moments in her life, just like this one today, where she sits or stands alone, waiting .... just waiting.

Waiting for me to tend to her brother's problem, need or outburst.

Waiting for me to prompt whatever form of communication I can get from him, even if it is just eye-contact, a nod of the head and a "yeah."

Waiting for me to finish working with him -- because I feel so much guilt if I don't spend at least some time trying to help him accomplish something, even if it is as simple as focusing on a puzzle.

It simply is not fair. There should be someone else on the scene. Someone focusing on her. Or sharing the responsibility of focusing on her brother so that I can sometimes get to focus on her.

Oh, how I would love to just focus on her.

But, even when I get a moment to do so, I am so tired.

So very, very tired.

I am not what my kids deserve.

Either one of them.

And I just don't know if I ever will be.

I have my doubts.

But, man, can I clean up the poop in a crisis.

Is there a career in that, by the way, because I sure could use a job.

Leah is a single mom of two children, one who has autism and is non-verbal. She writes at fruity pebbles for dinner.


  1. Personally, I think there should be a VERY well-paid career for anyone willing to clean up poop messes. I wish I had had someone like you around last year when my 6 year old was pooping his pants a few times a day.

    I have also had a really bad day (my son was called a retard on the playground), and for some reason, reading your post made me feel better. I guess it made me feel less alone. I'm so sorry you have to go through this; it totally sucks, but reading your words made me feel a little less like weeping the day away. Thanks.

  2. *sigh* your post makes me want to cry :( I've been there so many times (I'm, too, a single mom to two- one: nonverbal ASD- we have some things in common!)

    It's nice to know I'm not alone- because a lot of the time that is how I feel...

  3. I feel so bad and guilty for my 4yr old daughter who is constantly pushed to the background when I have to deal with my Mr 6.
    Today she pleaded with me to watch her paint "just a few more minutes with me mummy" but I can't because my son is having a meltdown and throwing things everywhere because he can't have a shop. BLAH.


  4. It is terrifying when we have time to ponder the impact on siblings.

    I had the 10 year old in tears last night because the 12 year old was not coping with moving accommodation whilst on a rare trip away.

    Why? Because I had exhaustedly given in to Boy 1 sleeping in the big bed with me, and Boy 2 has a head cold and just wanted to be with me. And my heart broke when I walked into the bedroom and saw him bravely trying to disguise the tears.

    I am lucky. I allocated Big Boy (DH) into the big bed with Boy 1, and Boy 2 and I spent a lovely night in the twin share. And he was happy, and felt loved.

    But a lot of people do not have this backup, and I have no idea how you cope... Because I doubt I would. I'd just sit and cry.

  5. The title of this post--brilliant and sums up perfectly the world we live in sometimes.

    I have to say you pulled, actually yanked, at my heartstrings here when you described your younger child. My younger child has had to sit on the sidelines and wait while I pulled her brother out of the pool while tantruming hard and trying to hit other kids (what is the deal with these pools anyway?). Of course, my son has always been huge and tall and moving him physically anywhere is a test of my strength! And even though this was a long time ago, it still brought back memories of my youngest one looking so forlorn.


  6. I'm sorry, but as an autistic person I just found this whole post horribly offensive. Since autism is a disorder in which you can't separate the disorder from the person, when you say autism sucks, you are saying that being a mother to this particular child sucks. When you say he shouldn't be like this, you are saying you wish he wasn't like this. When you say you wish he didn't have autism, you are saying you wish you had a different son.

    You seem like a nice person. You seem like you are stressed out, and yeah, I realize that it's hard taking care of an autistic child, but you need to stop feeling so sorry for yourself because making yourself into a martyr is just making things worse. I'm sure the kid realizes by now that you resent him. And why would you take him to a public pool? That's bound to be an uncomfortable place, just brimming with things that can cause sensory overload (chlorine smell, kids shouting, sun or bright lights, water splashing, the bad taste in your mouth). It sounds like he had a meltdown because of sensory overload or having to go to the bathroom and it was ignored, and the kid pooped his pants. (And if he's nonverbal how exactly do you expect him to communicate properly with you? This sort of thing is to be expected. Communication is especially difficult during a meltdown, too; I had a bad one a couple months ago where I couldn't speak at all and had to type on a mobile phone.) Take some responsibility, stop whining, and take care of your son. Love the son you have instead of crying about the one you could have had. Autism isn't a death sentence. Even Einstein was nonverbal until he was like four; Temple Grandin had a similar experience.

    It would kill me if I knew my mother was blogging about how awful it was having to raise me. I sympathize so strongly with your son that seeing you speak about him and the disorder he and I share in the way that you're doing it makes me want to call you selfish and all sorts of horrible names. Read up on the autism rights movement. Read about Ari Ne'eman and the Autism Self-Advocacy Network. Read about ableism, which you are committing by assuming it is better to be a neurotypical than to be an autistic person. You might learn something.

  7. Hi Kathryn!:

    As editor, I have the right to unpublish this comment, but I am going to let it stand to perhaps help you understand where we are coming from as parents. We all love our children. That is why we post here, instead of taking our frustrations out on them.

    I am sure that because you have autism, you are feeling defensive, but you need to understand the difference between resenting autism and resenting our children. It isn't easy to be a parent, and to be a parent of a child with special needs is a challenge, and until/unless you are a parent, you won't understand.

    While I appreciate your feelings, ultimately, this is a safe place for parents to vent, and so, that is what they will do. To that end, if we get harassing comments, I will delete them in the future.

    Thank you.


  8. Hi folks! I've never commented on this blog before, but this post really hit home with me, especially when I read the comments. I try to take my 10 year old daughter as many places as I can. She was diagnosed with severe autism at the age of 3 and is non-verbal. She has been a challenging child from the day she was born, but I couldn't love her more. We have gone to many public pools, and the chaos that is involved with this environment is totally overshadowed by her LOVE of water! The only problem we have had in the past couple of years is her frequent loose bowel movements and the safety of other swimmers. So, I got her a small pool at home, and she loves it just as much. I have also learned what she can and cannot handle as far as outings. I choose to not put her or myself through the agony of such activities sometimes.
    What really kindof hit me was the post from Kathryn. Being from a small, rural town, I don't believe I've ever met an adult with autism. I'm trying to understand what it would be like. In the same respect, I'm also trying to understand what it would be like to be my daughter. She has no ways of communication, other than a few gestures with which to communicate with others around her. It's got to be extremely frustrating! She seems very anxious, frustrated and angry many times during the day. This is the reason that I HATE autism! I don't and never would hate my daughter! I love her with every piece of my soul. I even had the thought the other day that I would even give up my own life if she could live a life without autism. I don't feel sorry for myself, and I don't consider it whining to say that autism sucks. Autism does suck, just like cancer sucks. Kathryn is free to call me whatever names she may like, I have tough skin :), but selfish should NOT be one of them. I have taken responsibility and sacrificed many things in my life (as I'm sure many parents with special needs children have) to try to get every ounce of help that I can for my child. I love her more than anyone on this earth, and the fact that she has autism has not changed that. I do not believe that a neurotypical child is any better than my child, but I do believe that, given the choice, my child would have chosen to live a neurotypical life! I do not believe she would have chosen a life filled with the sufferings that she seems to go through on a daily basis.
    I am currently a single mother, and her father has very little to do with her. It is hard to raise a special needs child, and I appreciate being able to connect with other parents online to know that I am not alone in this challenge. Thank you all for sharing, and I look forward to reading future posts!


  9. Autism is not like cancer. We do not die from autism. It's a disability that's more like deafness or blindness. It may surprise you but there are many parent groups that don't support a cure for autism; they agree that it is frustrating to have a child with autism but do not advocate changing their children. They talk about how it is frustrating. That's all okay. What's not okay is saying that you hate something that's such a huge part of us.

    By the way, in the small rural town I lived in there were at least two other people in my high school with autism. We're all adults now. My father, who lived with me until I moved in with my boyfriend also has autism. There's a meetup group in a large city near where I live full of adults with autism; we pride ourselves on being the only group in the area where there are no neurotypical "care givers" or parents supervising us. A lot of adults with autism do not disclose to their non-autistic acquaintances that they have autism because then people treat you differently.

    Also, you have to recognize that what you want for your child is not always what your child wants. My mother wanted me to be an actress; I want to be a historian. Just because you would have chosen to have a neurotypical child instead or you think if it were your choice, you'd rather be neurotypical, does not mean that if your daughter had the choice she would become "normal."

    If anyone wants to see how autistic teenagers and adults feel about themselves, visit There are forums there where autistic adults from around the world post, and there are hundreds of thousands of us. There are also a few parents of autistic children who post there. I remember one time this woman was frustrated because her son kept having meltdowns, and she was telling the story about how he had had a meltdown because he had to do the dishes and broke a chair. An autistic man responded and said, "Look, I know you don't understand what's going through his mind, but what did NOT happen is you asked him to do the dishes and he immediately screamed no and broke a chair." He then described a meltdown he had as a child in great detail, including what had originally set him off (stress over having to go to school) and the situation that arose while he was getting ready (couldn't find socks) and how that made it more difficult to handle. In addition to this, his mother thought he was stalling and started yelling at him, and this led to a mega-meltdown with him sobbing alone in his locked room. The woman he told this story to was shocked because she had never thought about it like that, and she decided that when her son was having a meltdown she would try to find out what was behind it instead of treating the symptoms. My point is, you can LEARN from us. We have so much information to offer you if you'll listen. We talk about sensory issues, relationship issues (romantic, familial, and platonic), issues with schools, and the autistic people are very eager to help out non-autistic parents of autistic children, because they remember what it was like being autistic children when their parents had no clue what to do for them. That is how to help your child. Blaming the disorder is not helping anyone. Because chances are when your children grow up they will realize they shouldn't have felt the way they were was bad, and the fact that you think their disorder is bad or that it needs to be fixed will be a major issue. My mother and I barely speak for this very reason.

  10. Kathryn I'll say it again. Unless you are a parent, you aren't going to get it. It is immensely different to be a person with high-functioning autism and a parent of a child with a lower form of autism.

    If you are NOT incontinent, if you are NOT non-verbal, if you do NOT have a hard time making your day-to-day needs known to those who care for you... and clearly, that is not an issue for seem to have a much higher level of autism than many kids...well, this is like comparing apples to ...chocolate cake. It's just ridiculous.

    I understand the feelings of those from wrong planet. I know the mission, and, when my children are older, they can choose to feel that autism is a biological evolution of the species. As a parent, I feel it is my job to learn as much as I can and ultimately to teach my children how to get along in society. I understand antecedents and what meltdowns are really about (mostly)and how to deal with them. I know it often isn't about the trigger.

    It's great that you embrace your autism. But not ALL adults feel that way. Your group doesn't speak for all of those with autism, so please don't pretend that you do. There are many out there that believe autism is difficult, and they recognize it as a developmental disorder that they have to learn to live with and not try to get society to bend over backwards for them.

    It's damned hard. And, as I said before, that's what we write about here. How hard it is (and sometimes how good it is). If you are offended by the things you read here? I have a solution for you.

    Click the X in the corner and don't visit anymore. I am not being harsh, but practical. It's really a rational solution. If what you read here angers you, why put yourself through that? I am very happy for you that you have a life with which you are comfortable.I hope my children grow up happy and self-confident, as you seem to be. It's all we ask for our children.

    I hope you are able to make peace with your mother. The estrangement must be difficult for the both of you. I do wonder whether she would feel the same way about autism as you do. As a parent, I doubt it.

    Please do not hassle the writers here, they are doing the best they can. It's enough.

    ed.- in-chief

  11. I just want to say to the writer, Well Written! My heart goes out to you. While I am married, I don't have outside supports and I am the primary person with my kids the majority of the day (short of 2hrs). I have found myself many times as the only adult dealing with one, two tantrumming children (one- lower functioning, lang. delay, one- higher functioning, very verbal but refuses to hates that he's different & refuses to say he has Autism/Asperger's).
    Your article hit right at me as we're dealing with some stool issues, though we don't venture to the public pool (due to these very logistic issues of kids in 4 different directions w/only myself).
    Know that you are not alone!
    There are days (more than I care to say) that I too feel Autism Sucks, but that NEVER means I don't love my children.

  12. Tina-- our circumstances are not the same and yet I so identified with this piece. My 9 year old son is high functioning and verbal, but he's been having a rough patch -- outbursts, tantrums, name calling, in the last week he's gone back to wetting the bed and in the last few days his pants while he is awake. I find myself begging some higher being to tell me what to do because I have nothing left. I don't know what to do or how to make it stop. And because this is a place for parents to vent and commiserate I need to thank you for letting me know that I am not alone. I love my son and I hate what these outbursts and habits and fixations do to our family. I hate that my younger children are constantly picked on by an older brother they love but don't like very much right now. So I'll say it Autism Sucks but my child does not.

  13. I'll come back in to add my bit too. I love my son - ALL of him. But even he, who wears his Asperger Syndrome as a badge of honour, knows frustration and despair. Even he has days where he sobs: "Why can't I just have a normal brain for one day" - his words not mine. In my house no-one is *normal*, I am whacko, carzy, obsessional, manic. Boy 2 is a junior version of me - right out of the normal square as others would define it, Big Boy is a scientific rock, but a little socially inept, and Boy 1 just happens to be the only one with a diagnosis.
    And some days it is bloody hard and I come here to let it out.
    I do not hide my writing from my kids, in fact they both know I am an open, honest and sometimes downright blunt individual who would fight to the death for them. And they also know I am human.
    BUT I also do not begin to know how hard it is with the gorgeous children whom they love exactly as much as I llove my kids, but who cannot communicate and are doing it a lot harder than my family. All I can do is sit here and know when my comments may help, and when it is time to zip it.

  14. The last time my son was with peers and no supervision, an ambulance had to be called. Kathryn, you're coming from a whole 'nother time-space-diagnostic continuum.

  15. Just a quick note to Kathryn...the major issue for my daughter and I won't be that I think autism sucks. I'm pretty sure she won't be able to fight with me about that. I wish she could verbally fight with me. The major issue will be who will take care of her when I am gone. It terrifies me!

  16. Tina, rock on! you said it and said it well. To kathryn and those like her, I can understand in theory the whole "we need to accept all neurodiversity" schtick to a CERTAIN extent. The whole thing about neurodiverse people saying "Don't speak for us!" in regard to "Autism Speaks" and getting up in arms about parents who give candid feelings about their struggles... well, i think kathryn's reaction really CONFIRMS she has high functioning autism... she's having one of the hallmark challenges people with that disability often have - a challenge with flexible thinking and empathy. Im sorry, I just have to say it. You dont want us to speak for YOU? Well, you guys please don't speak for us. Autism spectrum disorders cover a vast territory. I'm assuming you don't poop in your pants, smear it all over the walls and eat it every. single. day. I assume you dont have life-threatening, uncontrolled seizures, run away, hurt yourself physically or physically injure other children. I assume you can function in society without a 1:1 and that you can dress, bathe, feed yourself and speak. My daughter is nothing like you and the group you refer to. I love her. I would kill or die for her. And i accept her autism and her. but if a fairy god mother came down and said i can take her disabilities away???? sign me up. Im there. for me, but more for HER. I dont feel like who she is IS the autism and that she would be a completely different person... I believe who she is is buried deep down inside and ive never gotten the chance to know her BECAUSE of her autism and other disabilities. I dont think that makes me a bad person. the only people who are "unkind" are those that sit and judge things they have no clue about.

    all you moms here posting - you are wonderful mothers. please dont let anyone try to convince you otherwise. :)

  17. Sadly kathryn's voice is one of a whole "neurodiversity rocks" group who, while in theory have many good things to contribute to our society and our understanding of neurodiversity, i think ultimately they can also be toxic. Kathryn is not the first one i've heard who pits the autism spectrum community at odds with parents raising kids on the spectrum. we should be working together, not judging and scolding each other. kathryn is obviously high functioning. she, and her ilke, are not like MY daughter... this group says "Don't speak for us!" in response to AutismSpeaks. Well, please extend the curtosey to me and other parents and "don't speak for us either!!" Autism is a wide spectrum and many parents voicing frustration are dealing with issues that you and your parents didnt deal with. my daughter is 15... i manage her menses, bathe her, dress her, have to plug and unplug her own seatbelt, cut up her food, brush her teeth...she has a severe uncontrolled seizure disorder, is COMPLETELY non verbal and her verbal age is assessed at 10 months old... thats 10 MONTHS. She is aggressive. she runs off and can get lost or hurt. I have 3 other children between the ages of 2 and 6. Lets just say that there are days I'm ready to cry... not every day, but there are days. and i ... WE... all should be able to give voice to these days in a safe place. To assume we don't accept and love our kids? Well, that's where I guess kathryn's disability really shows itself... she finds it challenging to be empathic and understanding. She finds it difficult to relate. But we all get it... and to all the moms writing and reading on this blog - you. are. beautiful. and you are all doing an amazing job:) I'll sign off now before i tell kathryn where to bite it...


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