Wednesday, January 20, 2016

Why is autism so hard?

Being a blogger, I like to check my "stats" now and then.  See where in the world this blog is being read. (It tends to travel to farther and more exotic destinations than I do.) It also lets me see the search terms and phrases that somehow lead folks to finding me.  I don't think there's a week that goes by without someone looking for a french fry recipe stumbling upon this blog.  Boy, they must be really confused when they discover I'm not The Food Network.

But then this happened.

The question jumped off my screen.  I wasn't expecting to see it but at the same time I was not surprised by the statement.  Five words asking a question so simple and yet it has the power to give you an emotional gut punch.  Depending on who you are and what kind of day you are having, where that hit lands is different.

I wanted to write about this. I wanted to talk to this person about autism.  I wanted to pour them the drink of their choice, offer them a snack and give them a good old fashioned pep talk.  But then the Kiddo came home and we had to run to speech therapy.  Autism is sure hard on ya to keep a schedule.  It doesn't want to hear about your muse telling you to write some fluffy bunny inspirational bullshite that will make folks embrace and accept the #TeamQuirky lifestyle.  So off we went.  I promised myself I'd write something after the Kiddo went to bed.

Then life happened or more to the fact, autism life happened.  Despite a pretty decent day at school and a pretty kicking session with the magic speech therapist who graduated from Hogwarts, something shifted with the Kiddo right around dinner time.  All the sudden our night became very loud, very upsetting and very, very, hard.

And it was in the middle of this screamfest meltdown as I was desperately trying to keep my own shit together that I thought about the mystery stranger's question "Why is autism so hard?"  Good question, my unknown friend and reader. Why is it so fecking hard?  Why is it that my son cannot even tell me what was upsetting him? We suspect it was a YouTube clip that was setting him off. Even still if it did, why is it that he simply couldn't just close the clip and STOP watching it?  He had to keep watching it even though it was causing him to scream so loud I'm surprised the cops weren't called.  (Our neighbors are really understanding but I suspect one day they will have their "Enough" moment.  I should go bring them some cookies and possibly a few sets of noise cancelling headphones.)

And it's just hard on EVERYTHING.  Our house, our sanity, our marriage, our pets, our relationships with others and most importantly on my Kiddo.  Why does it have to be so hard on him? That's the part that really gets me.  I almost want to Google search the question "Why is autism so hard?" just to see what anyone else says to just make some sense of it.  Hey stranger, if you found something else online that answered that let me know!

This Kiddo gets dealt autism and a set of parents that don't have it.  Think about how freaking hard that has to be on him.  An 11 year old kid shouldn't have so much anxiety and frustration over something as simple as a YouTube clip that bugged him.

I guess the only comfort I can take in this is realizing that at least he and I are going through this hard stuff together.  That's something.

To that stranger that asked "Why is autism so hard?" and to any of you that ever thought it, I don't know.  I don't have an answer.  Just know I'm right there next to you wondering the same thing.  At least we all have each other.

Just hold on Kiddo. We'll figure it out.  


  1. I'm sorry your kiddo had a bad night. :-( It is hard. I know, personally, how hard it can be, having a kiddo on the bad end of the spectrum myself. Praying for your family and your sweet kiddo. I don't know why God allows these things, but I firmly believe he has a purpose for every life and a plan through our trials. Praying for peace, to learn and grow, and that your kiddo will be surrounded only by people who genuinely care for him, and that he would continue to make progress. We can't always pick our circumstances, but we can choose how we're going to respond and let it change us. Your response of compassion for your son and helping people cope is inspiring.

  2. It did hit my right in the gut, read in that question. Reading your blog makes it better on those hard days. We do at least have each other.

  3. Great post... But it was the picture at the end that really got me. I'm a dad to 5 kids on the ASD spectrum, and life with autism at our house is hard. Very hard. My wife does the lion's share of the work with the kids... I work 14 hr days to support the family. I wish I could help with the kids more, but I can't, and I feel like I've let my wife and kids down by not being more involved with their everyday care... But then I saw the picture of your family holding hands. Mom's hand holding and supporting the child... And dad's hand protecting and supporting mom's. Then it hit me. By supporting and protecting my wife, I AM supporting my children. The hours I spend working away from home makes it possible for her to stay home with the kids. When I am there, I love and encourage her, and let her vent when she has had a hard day... And I hold her hand. Until I saw your pic, I didn't realize how significant that was. Thanks for the new perspective... Off to work I go, but with less guilt and more motivation.

    1. As a stay at home mom to 3 ASD kids, I can tell you that I couldn't do it without my husband working hard to take care of us. You have no idea how much stress and anxiety is roved by knowing I don't have to worry about how to support our kids and find childcare that wouldn't abuse our kids, etc etc. Your emotional support when you are home is huge and makes all the difference. Definitely do not underestimate that.

  4. It’s okay to be Autistic.

    To all the children out there who are told they are diseased, tragedies, and burdens because they are autistic, I want you to know you are perfect the way you are. I want you to know that it’s okay to be autistic.

    It’s okay to flap your hands when you are happy, rock back and forth when you are upset, pace a path in the carpet when you are overwhelmed or excited. It's okay that to do deep breathing that you have to blow bubbles in the middle of the church service.

    It’s okay to spend the majority of your day engaged in special interests.

    It’s okay to not look people in the eyes.

    It’s okay to use an AAC device or sign language instead of speaking through your mouth.

    It’s okay to meltdown sometimes when things get tough.

    It’s okay to communicate by scripting.

    It’s okay that you only want to be friends with other autistics, or with Peter Parker, Tony Starks, Leo, Mikey, Donnie and Ralf.

    It’s okay to not be the best at socializing.

    It’s okay if you spend more time online interacting than interacting in person.

    It’s okay to not want to be society’s definition of “normal”

    It's ok to take 20 minutes to get there instead of 5.

    It’s okay to be YOU, and it’s okay to be Autistic.

    "Why is autism so hard" is it??

  5. It is SO crazy how you sometimes post something literally after we experience a very similar evening. Last night was so hard we just needed to end the evening early. And, even that was hard. There is only so much yelling, screeching and insanity over YouTube and videos that one family can take. Then the routine of trying to actually get him to sleep happened. And, that was hard. You're so spot on, and without this comm,unity it would be much harder. At least we are not alone. I just wish we all lived closer and could do like a commune or date night share thing. HA!

  6. Oh, dude. (Deep, heaving sigh.) It is so, so hard sometimes.

  7. There are many aspergerians in my extended family. I know that doesn't even begin to come close to what you are dealing with. It does give me a glimmer, though...DANG!!!!!!! it is so hard!!!!!!!!!!!!!

  8. Thanks for this information about how challenging autism can be on a daily basis. I am writing a paper for one of my social work classes about parenting challenges, and one of my classmates mentioned that he was going to study autism. I had always wondered about those particular circumstances, so I thought I would read up on it just a little bit. I feel like your idea that it's "just" hard, no explanation really could describe a lot of different circumstances; it's really inspiring that you just deal with it as best you can from day to day.

  9. I love reading your blog. It helps me realise I'm. It alone. Your YouTube incident reminded me of a meltdown my son had a few days ago because Bowser doesn't have a speaking part in Wreck it Ralph. It's weird what sets them off, isn't it?

  10. Hello there, I just wanted to say I find your posts rather interesting, and very relatable ...even though I don't have a child with autism, I have a child. I can relate to you in the sense of being a parent--and maybe a little on a parent with a child who has a disability because I lived with my aunt for two years who has three children, one of her sons has autism so I guess I can relate to you with the experiences in that sense. I am in college right now, and taking the Developmental Services Worker Program, and want to work with children with disabilities. My professor in one of our classes told us to do an assignment to follow a few blogs, and I immediately was hoping you posted enough so I could choose yours, and I am glad to say that you do! Anyway, I just thought I would comment specifically on "hoping the neighbors don't call the cops on your child screaming so loud." Two weeks ago, my child was screaming at the top of her lungs like she was being MURDERED, why? well number one she wanted a certain toy for her bath, and we couldn't find that was tough...she got the story she wanted, but wanted to stay up. She didn't want to go to bed, she freaked out for about a half hour, and I did everything I learned in TRIPLE P parenting program ...planned ignoring....reasonable consequences...etc...nothing, so I just ...tried the method of "letting her scream it out" and finally told her she wasn't going swimming on saturday (we have this thing where if shes good 3/5 school days of the week she gets a reward--swimming/skating/etc) anyway...that was the wrong thing to do apparently because after she calmed down, went to sleep and everything cops knocked at my door, and called child services because they had a report that I was threatening to spank my kid ---first of all spanking isn't even illegal....and I said swimming... not spanking... but anyway, I just thought I would say are NOT alone when it comes to having a child who has a meltdown every now and then. Disability or not, children will freak out...over the SMALLEST of things... I think even sometimes as an adult... we freak out as well, it is just a matter of how well we hide it :)

  11. Thanks for sharing us such a great post!