Friday night was one of the worst nights of my life. It wasn't the worst; I was with my brother the night he died. No one was injured (much). No marriages were ended or houses destroyed. But it was a night I hoped would never repeat itself, but has, to some degree, every night since.
I wrote a post about what happened, a play by play of the seven hours that Moe spent screaming. I decided that maybe such detail was better left for a private journal entry. Toward the end of the piece, however, I wrote this:
And this is where I will say what I try to avoid saying. Sometimes, autism sucks. I know that is hard to hear, and I am not trying to offend anyone. But it is our truth right now, and I dare say Moe might agree with me. For some, autism may bring great gifts alongside the challenges. But not here, not today.I've spent the last few days trying to decide if I would post that statement. On the one hand, I know that many are offended when someone says "autism sucks." On the other hand, it was exactly how I felt.
Autism isn't just a disability. It is the very lens through which autistic people view the world. It is, to put it most simply, their brain. There is no Moe with autism and Moe without autism, so if I say "autism sucks," I am really saying "Moe's brain sucks," ergo Moe sucks. And how could I, as Moe's mom, the person who loves and cherishes him more than any other person in the world, think that, let alone say it out loud?
The flip side of that, however, is that autism is, for Moe, quite debilitating. After all, what is autism if not a disorder? We parents are often criticized for focusing only on the challenges of autism, and not the gifts. But without the disability, what is autism? In other words, if someone had all the "gifts" of autism (say, for example, Temple Grandin's astounding visual thinking skills), but none of the deficits, would she still be autistic? Can you ever separate the person and the disorder? Different people will have different answers to that question.
Moe's autism makes him unable to sleep. It makes him aggressive. It makes him unable to speak or clearly express his wishes, causing immense frustration. I can only guess that if Moe were able to make all of those challenges go away, he would. If behavior is communication, what does his scratching and biting say, if not "this sucks?"
But I cannot say what Moe thinks. I can only say what I think. And I think autism is really, really hard on our family. On days like today, when I've slept only three hours, I love Moe but I do not love autism. The idea that I cannot hold those two opposing views in my mind at the same time is someone else's construct. Not only can I make that distinction, but I do it every single day. I have to.
|Scratches from earlier today|
It is autism that makes him unable to sleep or speak, or use the bathroom, or play with his sister, or go to school. It is autism that makes it so that he can't say "Mommy, I love you."
I have to believe that he would if he could.
Because that is how I keep doing what I'm doing. That is how I get up every morning no matter how little sleep I've gotten and give Moe a hug and a kiss and get to work helping him be everything he can be. That is how I keep moving forward, fighting every single day for more for him, for more than just "appropriate." That is how I live in a house you wouldn't believe, with locks on every door, unable to even have curtains because Moe has pulled them down. To live in constant fear for his safety, now and forever.
If I am going to be able to love Moe and fight for him, I need to be able to, once in a while, shout to the universe that "autism sucks!" and not be filled with guilt that it must mean I don't love my child. Because I do. Some days, that love is the only thing that keeps me going.
|My beautiful boy|
I am moderating comments, so yours will appear after approval. As always, respectful disagreement is welcome.
Love you <3ReplyDelete
What a beautifully honest piece. I am right here with you on this journey. Thank you got using such beautiful words to describe how difficult our lives can be at times. I am forever grateful to call you a sister in this business of raising kids like ours.ReplyDelete
He is so stinking cute!!!ReplyDelete
It is obvious to me (and should be to anybody who reads this) that Moe is one very, VERY loved and cherished little boy.
Autism can suck at times. What sucks more...the misplaced guilt. :(
(((HUGS))) Hang in there!
Thanks, D! You know what doesn't suck? The support of parents and friends who know how tough it can be.Delete
Sometimes Autism does suck! I know it's supposed to be against the "rules " to say that, but it does. Our son is now very verbal, but it.doesn't mean he can explain what he needs/wants etc. Or why he is screaming at me "f*cker!!"(thank you Minecraft YouTube videos)ReplyDelete
Several months ago while he was raging out,he collapsed onto my lap crying and said " I don't want to be like this,help"..so yeah Autism does suck for us right now and I truly believe he feels the same:(...it is gut wrenching as a parent
So beautifully written! I couldn't agree with you more. It's lovely to *meet* people who are able to write what's in your own heart.ReplyDelete
I agree with Dani... what a beautifully honest piece. Thank you for sharing,ReplyDelete
Why should parents of kids with autism be held to a higher standard than parents of kids who are typical?ReplyDelete
When typical kids misbehave, parents will comment that their kids suck (or are driving them up a wall or any number of expressions). Why is that okay, but a parent of a child with autism can't say it?
It's absurd. You shouldn't have to apologize for your feelings.
Autism does suck--especially when you're dealing with a more extreme end of the spectrum.
No parent wants to see their child struggle.
Anyway who has an issue with your post can just suck it.
what she said!Delete
Shame on anyone who would guilt you for writing what you feel and what you are going through. No one has the right to criticize you. Let them walk in your shoes for one day and see if they'll be so judgemental...ReplyDelete
I, read your blog because it is so honest and captures a truth that many wont write about. It is nice to read about the triumphs over the disability, but there are many of us who struggle everyday.
My well wishes are with you everyday.
Linh (written as anonymous because I did not know how else to comment)
Thanks Linh - and thanks for your email. Sorry I haven't had time to respond but I thank you for your support and for sharing your progress with me too!Delete
No worries. If I were in CA, I'd invite you over for a good leaning session. Over lots of desserts, of course! Lots and lots...Delete
Thank you for sharing and I'll be honest with you. Don't every apologize for how you feel. Autism does suck. I have a NT kid as well and sometimes that sucks as well. But nobody is saying I don't love my kid when I say that about her so why is it different when I say that about Autism? There is no difference to me. I love both my kids. But when I'm getting kicked in the face or head butted because my nonverbal autie can't communicate with me I am not going to welcome Autism with open arms. What I will welcome with open arms is respite care and wine. Lot's of wine. ;)ReplyDelete
You nailed it about apologizing about how we feel. I've also been told I shouldn't "mourn" or "grieve" after the autism diagnosis. But you know what? We feel what we feel. We don't control that. So when we are told we shouldn't feel that way, it just adds guilt to the mix. Instead, let's be honest about our feelings then deal with them and get on with the work we have to do.Delete
And then have a drink at the end of the day :)
Here's to "curing" the guilt!! I get so tired of people telling me that I shouldn't hope for a cure. Sometimes the idea that there might someday be a way to suppress all of my mostly non-verbal autie's bad things is the only thing that gets me through the day! And the wine to counteract the whine ...Delete
Parent of a newly diagnosed parent here... I have heard from a few people that I shouldn't grieve either. These are the same people that grieve when Pumpkin Spice Lattes or Peppermint Mochas go out of season at Starbucks. I have tried to explain and educate, but at some point, I am just going to move on with people that get it, and those that can't get it but at least offer support.Delete
Yes, I didn't come back to this but grieve. You have to and it's normal to imo.Delete
Thank you for sharing such honest words with us....completely beautiful!ReplyDelete
thank you for sharing this and for your honesty. it is our love for our kids that keeps us going :-)ReplyDelete
Yep, I have the exact same reality, times two. What you are describing has been determined to be co-morbid disorders, not autism, by Those Who Know. I think we are still not allowed to say "autism sucks" but we have been granted permission to say "co-morbids suck."ReplyDelete
Yes, exactly. But I can't ever tease out what is "autism" and what is "co-morbid." To me, it is all about the variation in the ways autism affects the individual. I can't see the point in differentiating, unless it is going to help us help our kids.Delete
This was perfect and beautiful and captured what so many of us want to say when when things aren't going well for our kids and it feels like the whole family is held hostage by autism.ReplyDelete
That is pretty much how I feel!ReplyDelete
I guess because my oldest has other disabilities, I tend to just think the sucky stuff sucks? I don't blame it on any one thing, because there is no blame in my mind or any one thing that is at fault. If that makes sense? His hitting me sucks (whatever the reason behind it). The hitting himself sucks (whatever the reason behind it is). The anxiety sucks, the aggression sucks, the sleeplessness sucks, etc. Sometimes my attitude sucks. The sucky things are what suck, and I don't have to like them. I hope you have less suckiness tomorrow. :) (My oldest is 13 and my other ASD kiddo is 9)ReplyDelete
And maybe that is a more helpful attitude - the sucky stuff sucks and ultimately it doesn't matter the reason why. I like that. The attitude, not the sucky stuff :)Delete
Thank you so much for being so brave and honest. This post resonates deeply within me. Your candidness is sure to make other parents facing the same struggles feel far less alone. Much love to you.ReplyDelete
I imagine that there are many things about Moe that you love and have nothing to do with autism. His smile? His laugh? His curly hair and his sparkling eyes? So I argue that you can love him and still say autism sucks! I say it all the time. There is pretty much nothing I love about my daughter's autism, but there are tonnes of things I love about my daughter!ReplyDelete
My son has aspergers, and while he likes the talents that brings for him, he hates the anxiety and the anger that results. Me? Even more so. So I get this.ReplyDelete
Your boy is beautiful x
What a lovely piece and for what it's worth, I agree totally. Autism DOES suck at times, those times when our children are fighting to make sense of things and all they can do is hurt themselves or us or someone else. Anyone who thinks that is a gift needs a swift slap!! However, as long as we don't focus on the 'sucks' part all the time, it's absolutely fine to have those times when you detest autism. It is important to be able to separate the autism from the person, otherwise we would end up hating the person, wouldn't we??ReplyDelete
you are not a lone and have no reason to feel shame. Autism sucks. I would not give up my kids for anything. but I wish often that I could do something to make them feel better.ReplyDelete
How odd that we're not free to express when something so difficult...is. I have arthritis. I've had it for 40 years. It affects how I live my life; it is part of me. It sucks. It just does. On the other hand, it has made me an observer of life, and people, and all that involves. It has made me wise, where wisdom may not have been unless... arthritis. My grandson, sometimes his autism sucks, sometimes the way it allows him to see is like a miracle, a glimpse into a depth of knowing that is exceptional. It IS that parallel road we all walk when we have "disability" as our constant companion.ReplyDelete
So much love to you Jen. I had a long conversation about exactly this with my friend yesterday who is going through the same issues as you. It's so hard because we love our kids so much but the behaviors can be so awful and it's devastating to watch them go through it and feel helpless. Sending you hugs.ReplyDelete
Thank you for saying this. I also struggle with hating Autism and loving my son. It's so hard for others to understand because to them the Autism is oftentimes seen as my son, but I feel like as his Mom I know the difference. The screaming for hours because he can't explain something as simple as he is hungry is not my son. I am sure if he had a choice he would rather be able to tell me what he needs. While I so try to really think about different therapy choices to make sure I am helping my son instead of trying to change who he is, I still think a lot of the time Autism Sucks.ReplyDelete
I can relate. what parent wants to see their beloved child sad, frustrated, angry, afraid? The rough moments are deeply upsetting for me not just because of the disruption and stress but also because it is so painful for me that life can be so difficult for my son sometimes and I just can't make it all better.ReplyDelete
Thank you for such a beautifully written and honest piece! <3ReplyDelete
Thank you for your post.ReplyDelete
I haven't been keeping up with the great divide in the autism community, so I had no idea that I was forbidden from commenting on the suck-itude of autism. I've commented on it quite a bit over the past 12 years of my 15-year-old's life, and I have no issues reading about others' sucky experiences with it. (In fact, one of the first blogs I ever followed was called "autism sucks.")
When my son was little, we were often "held hostage by autism," as someone commented earlier. It's better now, but truth be told, there is just no part of our lives left unaffected by autism -- that's why it's called pervasive.
In my house, I'd have to go farther than "autism sucks." My daughter has other issues that cause verbal and physical lashing out. Being on the receiving end of those lashes sucks. Knowing that she feels so horrible about herself, us, her world, sucks. Having my whole family held hostage by her behaviors sucks.
I love my son. I love his dad. Autism sucks. I love my daughter. (Come to that, I loved my mom.) Mental health issues suck. I'll acknowledge and celebrate the positives; I'll acknowledge and work through the negatives. Certainly ignoring the negatives doesn't make them go away.
Seems to me judgmentalism sucks.
It amazes me that autism parents seem to be held at a different level when it comes to speaking about our children's disability. For example, my daughter has epilepsy (in addition to autism). If I walked out and said "epilepsy sucks," no one would bat an eye. But I've seen first-hand the backlash parents can get from saying the same thing about autism.ReplyDelete
Every disability... EVERY ONE -- changes the way we live our lives. True, autism can bring with it some amazing gifts, but it is not the life I *wanted* for my daughter. Is it the life we have? Yes. Would I set out to try and separate autism from my daughter? No. But do I have to be happy with it all the time? No way.
I love you. This post was so powerful and so real. Autism is so different for everyone, and criticizing parents for not wanting their kids to go through what you're going through is crazy. The people who criticize have never been down that road. They don't understand.ReplyDelete
Beautifully said. and woe to anyone who takes you to task for it.ReplyDelete
Thank you for this! Thank you for saying what so many of us don't dare to say.ReplyDelete
My daughter has Cerebral Palsy, Microcephaly and Is Globally Delayed. She's five in June but inside is only 3. I think CP doesn't necessarily define Sarah but it does tell us why she is the way she is. Would she be the same person if she didn't have CP? I don't think so. I understand some of your frustrations. Sometimes, I hate brain injuries, even though I love my daughter with every part of my being.
Okay I'm going to respectfully disagree with one thing you wrote.ReplyDelete
"There is no Moe with autism and Moe without autism, so if I say "autism sucks," I am really saying "Moe's brain sucks," ergo Moe sucks. And how could I, as Moe's mom, the person who loves and cherishes him more than any other person in the world, think that, let alone say it out loud?"
I do understand that autism is part of who my daughters are, but really if they didn't have autism, wouldn't I love them for the amazing, wonderful people they would be then, even without autism? Would I miss the autism? Heck, I don't know, I wouldn't have known them "with" autism & would simply take them as they are - the way I do now. The way you do now with Moe. Even if they have amazing gifts because of the autism (which by the way, I'm still struggling to see because mostly I think the autism inhibits the "real" them), I still struggle & get angry with the tough stuff - just like I get angry & frustrated with the tough stuff of my 2 NT daughters. Maybe I'm wrong, but I think if I were given a chance to at least lessen the autism (if not completely get rid of it) I would have to seriously consider it. I would do almost anything to help my daughters have a more fulfilling life - one that is more filled with relationships which their inability to communicate makes very difficult to make. Does that mean I don't love them as they are? I don't think so, but like any parent, I'd love to make it easier for them to live their lives, yet I will help them thrive and enjoy the lives that they have right now. It's blooming where you're planted, kind of, yes? I think you do agree with this assessment actually, but I struggled with the earlier quote a bit.
And this is my first time at your blog, thanks to Flappiness is who shared the post. I LOVE your stuff and am adding you to my Good Reads of my own blog right now. If only I could spend a whole day just reading all the awesome blogs out there - there's so many! :-)
Hugs to you & your lovely family. Prayers & positive energy to you as you walk this very difficult path, because we'd be lying to ourselves if we called it easy & joyful all the time.
Thank you for your comments and so happy to have a new reader! Will check out your blog as well.Delete
The quote you point out is not an argument that I'm making, but one that has been made by some autistic adults who are able to advocate for themselves. I try to take that message to heart. I also try to understand that Moe doesn't get to separate his autistic self and non-autistic self so why should I? But what I've come to decide is that not only can I, but I have to.
Thanks for the clarification. I sometimes think the more I learn about autism and the more perspectives I see about it, the more confused I become, not less. This is a difficult path to navigate and I don't know that I'm choosing the right things as we go. I guess I just hope my love for my kiddos will ultimately be the over-arching reality. I've read autistic adults say things like "when you're autistic they don't call it abuse, they call it therapy." Those are the type of phrases that strike terror in my heart, yet all I want to do is help my girls live a good life. Sorry, I got off topic maybe and threw out stuff I'm just thinking without much processing. I hope you understand what I'm saying.Delete
I absolutely know what you are talking about. We have to do what we think is best for our kids. Moe needs 1:1 ABA, and that is how he learns. That isn't abuse. We are trying to give him the ability to communicate and connect with the world. These are survival skills. That is love.Delete
It really does suck sometimes. Not saying it when you're feeling it doesn't make it any less true.ReplyDelete
If parents with kids who don't struggle with autism or other challenges can complain about them (and they DO, quite a lot sometimes) than you should most definitely be able to complain and vent too. It's what keeps us sane sometimes.ReplyDelete
Wonderful, honest piece.
I don't think anyone argues that you can't complain about your kids, but that the complaints should be "I hate it when my son hits me" or "it sucks that his anxiety is so strong today." The argument is that by saying "autism sucks" we are saying our kids fundamental being sucks. I disagree, but I do see the distinction. Thanks for reading and commenting!Delete
To me, if I had a child with any kind of challenge or illness, I would say that it sucks too. I agree with you that saying "autism sucks" doesn't mean that you don't love your child with every cell of your being. It sucks that he has to struggle, and it sucks that you and your family have to go through it. It doesn't suck that you have a beautiful boy. I think you have made the distinction beautifully.Delete
This is perfection. Every single word. Thank you for speaking my heart. Love you my friend.ReplyDelete
what a wonderful writer you are JenniferReplyDelete
Yes, autism sucks sometimes. That doesn't mean you Moe sucks. Okay, sometimes kids suck too. If you had a 2YO having a tantrum you would say tantrum suck, but that doesn't mean the 2YO does...it is just part of being 2. So I think it is okay, and more importantly, you should be able to say what you are thinking and feeling. But the upside is you get up in the morning and fight for the love of Moe.ReplyDelete
Your son is beautiful! I can see clearly why you love him!ReplyDelete
What rules? Nobody gets to tell you how to think about the disabilities your son AND you live with every day. That's the only rule.ReplyDelete
Aww Moe..when I see his picture it is so hard to think he is capable of some of the behaviors you describe. That must suck the most for you! You are entitled to saying/shouting to the universe about autism and how it affects you.ReplyDelete
I loved this piece so much!
My daughter is 14 and 140 pounds and still kicking, hitting, pinching me and not letting me sleep. I so totally agree autism (and brain cancer) do suck. A lot!ReplyDelete
I gag when I hear other moms saying that even if they could change anything about their child with autism they wouldn't. I don't believe it! I especially can't stand it when parents say that their child getting brain cancer (or any illness or disability) is a blessing. That is sickening to me! It was not a blessing for my child to through these kinds of tortures! It was painful and devastating.
Autism sucks! but I love my daughter and I wish she was a neurotypical kid.ReplyDelete
I read your blog faithfully, but I don't often comment. Today I feel the need.ReplyDelete
I agree with you 100% on this one. There are good days and there are amazing parts of my son that I can probably attribute to his autism, but there are days when the screaming and hitting and crying is all too much and it sucks majorly. You will get no judgment from me about saying what you said. The only thing you will get from me is support and a "me too" and a cyber hug. I have read a few posts of other ppl who think you should never say a bad thing about autism and I respect their opinion, but that's easier to say when your child isn't hurting themselves or others and when your child can communicate with you and when your child doesn't get violently ill or when your child sleeps through the night etc.
I will shout it up to the heavens right alongside you: "AUTISM SUCKS!!!!!".ReplyDelete
We love our kids with everything we have and everything we are, but it's okay to admit that we sometimes hate the kicking and the screaming and the biting and the headbutting and the aggression and those soul-sucking tantrums. We love them, but we don't love their behaviors (and I think that's true of every parent, special needs or not). And it's okay to admit that.
I totally agree with you! I love my son for who he is, but I don't believe that he LIKES hitting himself or having trouble expressing himself. An adult was so rude to him this weekend and it broke my heart (well, and royally pissed me off), and I hope it went over my son's head. I respect where adult advocates are coming from, and I'm careful not to talk about autism negatively in front of M., but some days it DOES suck and I think M would agree with me.ReplyDelete