“Mom, are you sad?”

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Monday night was not a good night.  The worst I have had in a while, actually.

But I learned something about myself, I was painfully reminded of something about Easton, and, most of all, I was incredibly proud of Keegan.

Our routine has been slightly (read: so-much-more-than-slightly) “off” these last several days.  We have had a little bit (read: a hell of a lot) going on at our house.  Not going into detail on that.  The point is: holy crap, we are a little stressed.

I believe all of this culminated into what I’m referring to as the “Epic Meltdown of ’13.”

The boys and I were happily playing outside.  Easton would literally stay outside aaaaaall the live-long day if we let him.  But, alas, it was time to go inside for bath and bed.

And the Epic Meltdown began.  It was more than just crying.  It was more than a temper tantrum.  It was screaming to a level that actually made me cringe and want to cover my ears.  He was definitely mad about coming inside, but there was something else.  Something.  I don’t know what.  All I know is, he was rubbing the top of his head obsessively and screaming.  He was grabbing tissues and rubbing his head.  He was scratching at it.  He was grabbing my hand to apply pressure to it (the only thing that made him stop screaming).  If I ever-so-much as moved my hand, he would grab it and pull it toward his head.

But he could not tell me why.

I searched his hair for a bug, a blade of grass, a speck of dirt (yes, those are the types of things that would make him freak out).  I saw nothing.

He screamed like this for a little over an hour.  The only moment of silence in that hour was when I sat next to the bath tub and put my hand on his head.  But I eventually had to get him out of the bath, and the non-stop screaming continued.

About 45 minutes in, I lost it.  I started crying.

I looked over and Keegan was watching me.   I don’t like him to see me crying, so I tried to calm myself down. I felt very weak.

“Mom, are you sad?”

“No, I’m not sad, Keegan.  I’m just really frustrated.  I want to help your brother, but I don’t know how.  He can’t tell me what’s wrong and I just wish he could.”  In hindsight, a more accurate answer would have been, “Yes, I am a little sad.

“Mom?”

“What?”

“Do you think the neighbors can hear him?”

“Yes.  I know they can.  What do you think they’re thinking right now?”

(shrugs) “I don’t know.  Probably wondering what’s going on.”

“Yes.  I’m sure they are.  Does your brother frustrate you sometimes, too?”

(shrugs again) “I guess.  Sometimes.”

“Yeah.  I know.”

At this point, it was time for bed.  And at this point, the melting down (although I didn’t know this was possible) was getting worse.

The boys share a room.  Keegan got in bed and was trying to talk to Easton about getting in bed.  Easton hit him.  I took Easton’s hand, told him “no” and said to Keegan, “I’m really sorry he hit you.  He doesn’t mean to hurt you.  He’s just really frustrated and over-tired”

“It didn’t hurt, Mom.  Easton, we know you’re tired.  You just need to go to bed and then you’ll feel better.”

I had to lay in bed, with Easton on top of me, and my hands pressing on his head, for him to finally stop screaming.

And then I completely and totally broke down crying.  The quiet cry.  You know, the kind where you’re trying to stifle it so no one hears you.  That kind.

“Are you okay?”

Keegan whispered this from his bed across the room.

It totally caught me off guard.  My oldest child, the one I always say is oblivious to everything, noticed my quiet crying from across the room and quietly asked me if I was okay.

I said “Yes, Keegan.  I’m okay.”

And here’s the shameful part of this whole thing.  Do you want to know what I was thinking while I was quietly crying in Easton’s bed, with him on top of me, finally catching his breath in little sobs from screaming for over an hour?

I was thinking, “Dammit.  Sometimes, I HATE AUTISM.

This is where I’m worried about what people will think.  Because if you look back at my previous posts, I am pretty adamant about saying “Autism is a part of my son.  I wouldn’t change him for anything.  He is who he’s supposed to be.”

And yet, Monday night, in one of my weakest moments, I hated autism.

It is part of him.  It doesn’t define him, but to know him, you must know autism.  Autism is intriguing, fascinating, and amazing.

And autism is heartbreaking, complicated, and all-consuming.

I love Easton.  But do I always love autism? Absolutely not.

And that, my friends, is my “April is Autism Awareness Month!” post.   Not what I originally had in mind.  (I wanted to write something uplifting, something about my perfectly abnormal kid.)

But it’s honest.  And honestly, I am very, very aware of autism these days.

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110 thoughts on ““Mom, are you sad?”

  1. Hugs for you. Some days/nights are incredibly hard. No one who hasn’t dealt with this can truly understand the stress involved and those of us who do understand would never judge you for either those thoughts, of sharing honestly here.
    I hope your little guy was feeling better after a sleep.

  2. All I can offer you is empathy and I hope that things can calm down soon. Yes autism gets frustrating sometimes. It can hurt when they dont have the words to say what is happening and we really want to help them. Easton is blessed to have a wonderful older brother and mommy.

  3. Your post really touched me. I’ve been through similar emotions and situations with my son, and I’ve had the cry you describe, the one you can’t stop and don’t want to be seen, but it’s there anyway because it’s all too much sometimes. My heart really goes out to you. Thank you for writing this post, I know that can’t have been easy xxx

  4. I don’t know you but I’m sending hugs, mama. For you and your boys. In hard seasons it helps me to see that we came out of the last hard season. It hurts to feel our children are in pain.

  5. I think, for the most part, most of us parents have all been in your shoes. I know I have. You want to help your child, but can’t. That’s the downside to Autism. I’m there some days, too. Thank you for being so honest and real.

  6. I have a similar post going to my blog later, which isn’t an autism blog and I’m nervous about putting it up, but damn it – it’s getting posted.

  7. no one can or should judge your pain. we all own our own stories, and sometimes, sometimes we are just…tired…and overwhelmed…and frustrated….and HUMAN. You can not be sympathetic to your son but critical of yourself….because we all have things that hurt us and we all have things that are just. too. much. You are honest, you are raw, and don’t ever let anyone make you feel like that isn’t ok. Strength is being vullnerable. And shwing that your kids that you are human, you make mistakes, and you are trying. It’s obvious by both of your kids, that they are learning humility, love, acceptance from your examples. And a bad day? A bad week? A bad month? It doesn’t undermine all of the good you do. Promise. (from a mom of a 13 year old and 9 year old with a variety of things, who left the blogging world long ago, but wanted to let you know you’re not alone.)

  8. I will say to you im glad you know how to calmly deal with it i get so mad when im frustrated , but its better when they get older so dont worry , i have an adhd step son also and his older brother has a weird mind and a 2 yr old , my autistic boy he didnt talk he screamed and pointed for 5 yrs till i relized something was wrong he is now 9 and with the speech pathologist and B.I all those years he now talks and does much better then all my other kids sometimes , Its very sweet to see your other boy there act so grown up and strong ❤ Hang in there Momma

  9. We GET it…. us asd parents just get it… No o wouldn’t change my daughter to not have it… but occasionally …..I am sure we all do this… I wonder what it would be like if ahe was neurotypical… if she was what ever NORMAL is…. then she hugs me and smiles her cheeky grin and we connect…. yes I am one of the very lucky onws who has an affectionate child who tells me she loves me constantly. .. but even that (I hate to say this) cat be too much for me…. maybe we all have a little autism in us all…. maybe that is normal and not those who don’t have it…but your post also brings back to home… we may think were keeping things from the kids…. but then again they know that too.

    • Very true. It’s a tough struggle to find yourself wondering what it would be like if they were “normal.” But then again, who really IS normal? 🙂 Thank you! It’s always nice to hear someone “gets it.”

  10. This just made me cry, mostly because I can relate. I can so relate to that feeling of hating autism sometimes. Thank you for sharing this. And know: you are not alone.

  11. I get it. You love him but you don’t always love what he does, especially when you have been “handling” a serious meltdown for a while. Did you ever find out what it was, other than having to come inside? Your description of his actions made me wonder if he had a headache or was stung by a bee. Sometimes you can relieve pain a little by putting pressure or scratching the area where it hurts (it’s sort of an automatic response that we make). So it is possible that is what was giving his over the top temper tantrum.

    • Honestly, I still don’t know for sure what it was. My best guess was a headache, and it seemed to help him feel better when I applied a little bit of pressure with my own hands. A bee sting (or maybe a bug bite?) never even occurred to me, but that’s very possible too!

  12. Anne, you are such a strong woman, and those tears? They were tears of strength. Sometimes when we have to be strong, the strength builds up and has no place else to go, so it simply spills over. And Keegan? Wow! What a compassionate young man you are raising! I believe in you, and your children are blessed to have you as their mother.

  13. We say this about once a month. He has the melt downs that have honestly gotten the cops called on me. Yeah. You are a strong woman, with a strong boy, and both boys sound AMAZING!

  14. Today, I also said that I hate autism. I truly do and I resent the current autism awareness campaign wrapped up for the masses in a satin bow giving the impression that it’s an easy disability to live w/. For my sons, husband and me most days are terribly difficult. However, I love my boys with all my heart and we’ll soldier through this w/ tears and laughter but it ain’t gonna be easy.

    • Yes, I agree. The autism awareness campaign gets tiring. We all want more acceptance for our children, but that’s not going to happen with a cookie the shape of a puzzle piece, is it? We autism parents need to stick together!

  15. Sometimes it is incredibly hard and we cry because we’re human and we reach the end of our rope, but it’s a moment and it passes. I can’t tell you how many similar scenes play out in my life with two — one quite verbal, one not — or how many times I’ve quietly cried in the dark. I like Julie’s comment because I believe it’s true: strength spilling over.

  16. I am proud of you and amazed by you. I think it’s perfectly ok to hate autism. It’s something that makes it difficult to communicate with Easton. Makes perfect sense that you would hate it sometimes. That fact doesn’t change how you are a terrific mom. And Keegan is awesome too! 🙂

  17. This post truly could have been written by me – my son with ASD is Easton and my oldest son is also Keaghan. This is a beautiful, honest and heartbreaking account of what life can be like living with autism. Most days are great and positive…but not everyday…

    Much love and hugs to you for sharing this with all of us!

  18. I understand! We definitely have those days. Days where I am just so exhausted with trying to figure out what is wrong with Emily. Days where I think it is so wrong and unfair that I have to fight so hard just to get Emily half the education most people are getting for free and taking for granted. Days where my other two girls are driving me so crazy and then Emily repeats a phrase for the thousandth time that afternoon; that I just HATE AUTISM and what it does to my family. I rail against the unfairness of it all. Then, the kids are in bed, and I breathe. The next day we pick ourselves up and dust ourselves off and get ready to fight another day with our good attitude and faith in humanity restored. Because we keep going, we are allowed to have these days. I wish I could give you a long hug, a baby-sitter and a coffee date.

    • Oh my goodness, I love this. When the kids are in bed, that is truly the first time of the day that I just sit and BREATHE. And, I would definitely take the hug, the babysitter, and the coffee date. 🙂 I think we would get along wonderfully!

  19. This was uplifting believe it or not. It is reassuring that I am not alone. I am not the only one who ‘hates autism’ at times, or cries, or feels frustrated. I think, for me, this was one of the more encouraging posts I’ve read in a long time. I too embrace who my daughter is and autism is part of that. She is the center of my life and therefore autism is in the forefront as well. I celebrate her differences and accept our life. However last week was horrible for her and I was angry! Angry at autism.
    Thank you for sharing. It helped far more than you could imagine!

    • Thank you! I’m so glad this post helped you. I worried about writing it, but I knew I had to. There are some days/weeks/months that are harder than others and it’s hard not to hate autism during those times.

  20. “This is where I’m worried about what people will think.”

    People will think “oh, thank God I’m not the only one.” A lot of people. Including me.

    Thank you.

  21. I just found your page but wanted to say Autism sucks sometimes and I hate it too! You are an amazing mum doing an amazing job ! Yes even on those hard days!! As for what people think .. tell them to shove off, they don’t walk in your shoes, have no idea what it is like to be a parent to a special child like Easton. You are awesome and doing the best you can that is what counts! Big hugs for you, Easton and Keegan who is an amazing brother and son it seems!

  22. There is nothing wrong with hating Autism. Who among us has not hated what it has done to our children/family member? I hate it at least once a week if not more depending on the issues at hand but it passes. I hate cancer, too. I hate more than anything that no one can tell us why this happened to our children (2 in our household) and that infuriates me to no end. Do they ever see or hear that from us? Never and it does not mean I won’t get up and do the whole thing over again so thank you for this very honest post. If they came up with a “cure” that was 100 percent I imagine we would all be in line for it so until that day comes we will love our beautiful kids and keep on doing what we can to help them navigate this world.

  23. I so appreciate your honesty. It’s like living with an alcoholic. Love the person. But hate the disease/behavior. . I always love my child and think she is spectacular. The Autism not so much. Not how it negatively impacts her or our family. I believe in acceptance. That includes accepting that we are human with human frailties. You are a wonderful person and a loving Mom. I am proud of you.

    • Wow, thank you! That’s so true…we always talk about “acceptance” in regards to our children with autism. We do need to remember to accept that we are allowed to get frustrated and angry at autism.

  24. I’m a, so-called, “high-functioning” autistic but I’ve only known that for a couple of years. When I was a kid, teachers used to say things like “You just aren’t trying” and “You’re SO smart, I know you can do better if you want to”. Of course I knew I WAS trying and that there didn’t seem to be any way I could do better so, in the end, I pretty much decided that all teachers were full of bull and nothing I did was going to make any difference. I was wrong but eventually I learned better.

    Be that as it may, none of my three daughters were autistic and my own autistic behavior was/is very different from that of your son so I don’t really know how you feel but I do know how reading your blog post made me feel. You have my love, my respect, and my heart-felt best wishes.

    • I’m sure you have made a tremendous difference. I’m glad you eventually realized that, but I’m sorry you had teachers who didn’t try to understand you as an individual and how you learn.

      I really appreciate your comment and your kind words. Thank you!

  25. Thank you so much for this. My oldest daughter struggles so much with this exact same thing. I think she doesn’t notice but she always surprises me. At times I feel so bad. My son is 6 years old high functioning autistic I just wish he could understand more then he does and I don’t know how to explain things to him. I get 3 hours of sleep every night 3am to 6pm and it’s frustrating. Thank you for helping me to realize in not alone in these feelings thank you

  26. Such a moving post – I’m in tears. So well-written. I’m sorry for your rough night – but sounds like you are an amazing mom with amazing boys!

  27. Hi. . .I really admire your thoughts about your sons and your struggle with autism. I haven’t known anyone with autism, but more and more I am hearing of my daughter’s friends who have an autistic child. It seems to be pervasive these days and I empathize with you.

    I see nothing wrong with hating autism. . .you don’t hate your son, you hate the disease that is wracking his life and your family’s life. . .It seems so frustrating and I wish I had an answer. I believe you are doing all you can to keep Easton’s life as normal as possible. And your son Keegan, how very sensitive he is about what is happening. . .God Bless you all.

    I would like to re-blog this post on my site because knowledge is power in terms of awareness of Autism.

    May you be blessed!!!
    SandyO

  28. Reblogged this on Sandys Hopeful Room and commented:
    This is a story of a very courageous woman and her struggle with the Autism that has struck her son Easton. This is a story of his brother, Keegan who does his best to console his mother and Easton. I applaud them for their courage and compassion. . .

  29. You tapped into my self awareness. It’s a battle to be the one who should know your child the best and are unable to fulfill his needs. The other kids are watching and at times feel as confused as you are and left out because they notice the attention you pay to get your autistic child calm or even compliant with life. My oldest told me he wished he couldn’t talk so he could be involved during therapy. If he only knew.

    • Yes, my older son has expressed to me how we “pay more attention” to Easton than him. It broke my heart. It seems impossible to give them both my equal and undivided attention.

  30. Thank you. I am in that day now. I would change it everyday if I could. I hope today is a better day for you if not tomorrow then…

  31. Totally with you here, been there in an almost exact same situation, but as my son with ASD is the oldest, it was my youngest (3 yr old daughter) that asked me if I was sad … Sometimes I hate autism too!

  32. How incredibly honest this story is. I think we as parents strive to share stories of inspiration and uplifting to promote another side of autism. But that is not our reality! Who better to know that than another parent. The blogging world is here to support! I appreciate your honesty!

  33. I love this story. I love the vulnerability. I love the desperation. I love the honesty. And I love how it reaches out and embraces those of us who have experienced this kind of meltdown. There is no shame in your feelings; they exist because you love so much.

  34. I think you are amazing. When I’m stressed I sometimes have way worse thoughts than “I hate Autism.” Just the fact that you are trying to understand what he wants and that your other son is so empathetic is a testament that you are doing things right.

  35. You are the perfect mom because you know the strengths and the weaknesses, and your sons see you at your best and at your not so best, you are teaching them that life is sometimes messy, but we cry, we laugh, we sleep, and then we get up and do it all again.

    • Well, I am definitely less than perfect…but, what you’re saying is definitely true…all we can do is try our hardest and not be afraid to have our children see us during our best and worst moments. They are all teaching moments! Thank you!

  36. Hugs to you. My son is “mildly autistic.” It sure is frustrating when he can’t tell me what he wants and require me to do unorthodox things to calm him. I remember he used to would only fall asleep by putting one foot on my face…

  37. I love the way you separate your son from his autism. While it’s a huge part of who he is your ability to look at him as a person WITH autism, rather than an autistic person, is a very powerful statement. It also seems like it’s very effective in reminding you of his position and how tough it must be for him to communicate. I recently watched an episode of The Doctors where a girl with autism was able to communicate through her ipad. The look on her face as she held a conversation, when she recognized that she could finally tell the world how she feels, and what she wants, was beautiful. I hope Easton will soon show that same look of happiness and satisfaction.. it may not stop him from hitting his brother, as boys will be boys, but at least he could tell you why. 😉

    Until then, sending lots of love your way.

  38. I hope you don’t mind my replying to this without having been introduced. I am an autistic adult, and i just want to let you know that everyone hates these episodes, even people who are autistic and otherwise glad of being autistic. The whole downside to having this sort of nervous system is that it can sometimes send you pretty nightmarish sensations that you have no idea what to do with. So glad you are there for your son.

  39. This blog gave me a non stop tears from my eyes. I see myself in those situation but trying to be have brave mom attitude, the crying doesn’t happen. It’s all inside me and now I realized there’s so much pain, frustrations and hurt inside me that did not have the chance to get out of me, in my trying to fight or conceal attitude. It made me realized that we need to let it out. By the way I am a mom of 3, 2 with autism, one is severe and a mild to moderate. God bless us…

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