“I was just trying to get him out of the house and he had to have his particular pair of shoes…I just wanted to forget about it all for one damn day.” – Adam Braverman character from the Parenthood episode “Qualities and Difficulties“.
Just wanted to forget about it for one damn day.
Many families who have kids on the spectrum tuned in to this week’s Parenthood episode. It was previewed as the one where the character Max learns he has Asperger’s. I chatted with many friends of mine before the show – would we watch? Could we watch? I ultimately decided that I had to watch, and armed myself with a bowl of ice cream and thin mints to make it through.
For me, however, the more striking part of the show was not the conversation about Asperger’s. It was a scene in the middle of show between the dad and Max.
(slight spoiler alert…I won’t go into details of the scene, but if you haven’t watched the show and plan to, you might want to step away for a moment)
In the show, Max’s father Adam was trying to get them out the door for school and Max couldn’t find his shoes. His dad, sensing Max’s rigidity of schedule, decides they will blow off school and spend the day at the amusement park riding roller coasters. The day goes fine until something happens and they can’t ride the coaster. Max has an epic meltdown in the middle of the park, and can’t recover.
Later on, when talking to his wife about the day, he says this line : “I just wanted to forget about it all for one damn day.”
While I had been teary through most of the show to this point, this is when I really started to cry. This part is what hit home the most for me. Because he wasn’t saying he wanted his son to forget about it for one day, he was saying that HE wanted to. The dad. I knew exactly what he meant.
Because I want that too. I just want one day – one thing – to be easy.
This hit me like a ton of bricks a few weeks ago when Tim went out of town to buy a car. It was in Chicago, so he had to fly out there and then drive the 16 hours back with it. I suggested he take Gerry with him, as a sort of father-son bonding experience. For the trip, I packed a small backpack for Gerry with a change of clothes, a few books, a camera, and a notebook. Tim loaded a few Star Wars movies onto his phone. We told him about the trip about a week ahead of time, and off they went. Easy.
If that was Howie, we’d have bags of just food that he can eat, his vitamins, his melatonin, his special music, noise-canceling headphones, several changes of clothes, and two or three social stories. And that’s if we could even get him on the plane. Or into the car. Or, in this case, taking him was not an option at all.
We can’t just “pack up and go”. The days that go smoothly – or that seem to go smoothly – are the days where I have carefully scripted every single moment. We don’t try anything new. We go to the same restaurants where we know we can eat. We go to the same amusement park every summer because we know it so well and stay in the same hotel. We go to the same playspace every year for his birthday party. We’ve talked about taking a different kind of vacation this summer, but the sheer amount of work involved for all three kids to be happy is paralyzing. If it was just my son, maybe we’d branch out a little more. But his meltdowns don’t just affect him, they affect the whole family.
(I’m sure some of you are thinking that maybe if we didn’t micro-manage everything, that he’d learn to adapt to change. Maybe. Maybe not. Experience tells us otherwise. We’re working on it. I have to be aware of his abilities at 4 years old. And what the rest of my family can absorb at this time.)
These thoughts had been swirling around my head when my friend Patty wrote a post called I Just Want Easy. She wrote that she just wanted one area of her son’s life to go smoothly without any help from her. I understood so completely. In my response to her, I wrote “I feel like the only times when things do go smoothly is when I’ve completely hyper-managed the situation.”
And that gets back to the episode of Parenthood. His wife warned him that he was “going rogue”, that the change in schedule would be really detrimental to Max’s well being. The dad just wanted a break. For his son and for himself. He just wanted them to be father and son, out at an amusement park, having a good time like all the other families. One family’s “normal” is another family’s “going rogue”.
I felt this again at a kindergarten information meeting. While all the other parents were worried about their kids remembering their PIN number to buy lunch, I was worried that my son wouldn’t even be able to be in the cafeteria with the noise, smells and people. Other parents wondered where their bus stop would be. I wondered if we’d be able to get out of the house on time to meet the special ed van. One parent was curious how the kids moved from the classroom to gym, art, and the library. I was curious how my son would get his sensory breaks and OT time. Other parents think about the big transition from preschool to kindergarten. I think about every little transition during the day from the moment my son wakes up until he goes to sleep.
Sigh.
“Going rogue”. Just for one day. Going off script and just doing something crazy. Like wearing different shoes. Or eating a different kind of sandwich. Or sitting in a different chair.
I knew parenting wasn’t going to be easy. But, for one day, I’d like it to not be so damn hard.
“Take it easy, take it easy
Don’t let the sound of your own wheels
drive you crazy
Lighten up while you still can
don’t even try to understand
Just find a place to make your stand
and take it easy” – Take It Easy by The Eagles
Try Defying Gravity 
March 6, 2011 at 7:55 am
I haven’t seen Parenthood before but after all the posts I read about it I am thinking of watching it online.
I loved this post and I too would like a day free from everything being so damn hard.
March 6, 2011 at 1:46 pm
Thank you and thanks for sharing this! I know we all need a break – for our kids and for us.
March 6, 2011 at 8:09 am
YES, I get this. When things look like they are going well–it’s because we’ve worked so hard to make sure they do! (and then all the while, we are stressed waiting for the shoe to drop)
March 6, 2011 at 1:49 pm
yes – that’s exactly it.
March 6, 2011 at 8:09 am
After a rough few days, I’ve sent the morning in bed, leaving Daddy to it. Yes, I can relate to this. The problem for me, with hyper-managing, is that it leads to MY expectations being higher, so when things go wrong, I’m much more upset than if I hadn’t tried to prepared. But managing (controlling) the situation feels like the only proactive thing to do. Sadly, it leaves me always executing the worst, rather than hoping for the best.
March 6, 2011 at 8:11 am
Damn auto correct put executing instead of expecting, but it works too. Ha!
March 6, 2011 at 1:51 pm
Damn You auto correct!! 🙂 makes reading post much more fun 🙂
March 6, 2011 at 1:51 pm
I never thought about it that way – that by controlling everything I’m setting the bar too high. If I didn’t have the other boys to worry about, I’d be better at experimenting, I think. Maybe not.
March 6, 2011 at 8:23 am
I just started watching Parenthood and I like it but it is tough to watch and of course makes me wonder what my son will be like in 10 years. My son is also starting kindergarten next year and I am experiencing all of those same fears you’re having. Trying not to let them get the better of me and obsess about them every waking minute, but you’re right – it’s so hard.
March 6, 2011 at 1:52 pm
I’m usually pretty good about not obsessing in the moment, because it’s just normal now. Until something like Parenthood or my son’s airplane trip remind me that I’m going above and beyond.
Parenthood is hard to watch, but I can’t seem to miss it. It’s like I have to watch it for some reason…
March 6, 2011 at 8:26 am
Three was hard, but Four was really hard. Five was hard. But six, I don’t know, it’s been easier. ((hugs))
March 6, 2011 at 1:53 pm
So glad to hear that Brenda. And I’d love to know if it’s easier because you’re more experienced, or are you more relaxed, or do you just understand things better now?
March 6, 2011 at 8:54 am
I am in a different place now, Noah who has moderate ASD and mental retardation is almost 11. He is MUCH more flexible now. It took a LOT of work on our parts and working through some tantrums, but we are to the point that we can just take off for the day. The stimming maybe worse at first but no major meltdowns. Last night we decided to surprise the boys with a trip to the Trex cafe, he did fantastic and the family had a blast!
I sat back and nearly cried thinking about how far we’ve come. There were about 7 years where we couldnt go to Target, screw a huge loud restaurant.
So there is hope. One day you may find away to forget for a day.
March 6, 2011 at 1:54 pm
YEA! That’s a great success story! Congratulations to you and your family. I look to you for hope 🙂
March 6, 2011 at 9:18 am
Absolutely brilliant. Especially relevant to me today as I have family visiting and want to do normal stuff like go out for a meal together and it’s just proving so hard…
March 6, 2011 at 1:55 pm
I get that completely. I hope you’re able to find a way to enjoy your family’s visit and have it not be so hard on your child. sending good thoughts today.
March 6, 2011 at 9:27 am
Your closing song hit home for me–that was my son’s “go to” song for over a year. I listened to that song for One Solid Year. We’re now on to another one but it is hard…how many other NT moms have to worry about getting the right shoes, socks, shirts, out the door at the exact time, getting to schoool at the exact time & location? I’d guess not many. My two other (NT kids)could care less about even getting up, let alone dressed, these things just don’t hit their radar….
March 6, 2011 at 1:56 pm
Yup – I get it. My other two aren’t exactly “go with the flow” kids, but are much more accepting when plans are different than expected.
So glad to hear that we’re not the only ones who have “go-to” songs. My son’s right now is “Soak Up The Sun” by Sheryl Crow. I’ll take it 🙂
March 6, 2011 at 9:36 am
SO agreed. It is so about micro-managing each breath that makes a day an “easy day”… wish it could be different for you & all of us. If nothing else, things will change- some better, some worse. Hoping for more better than worse & some strategies that teach your son to be flexible in his inflexibility. For many of my kids, teaching them that “the schedule [visual] runs the day” gives their rigidity a new focus: following the schedule. Then the schedule parts can change but as long as it is visually understandable to them, they can move along with something new or changed. Good luck. Hoping for an “easy” day sometime in your future!
March 6, 2011 at 2:01 pm
that’s a great idea with the visual schedule. We’ve moved away from it lately at home because we haven’t needed it, but I wonder if bringing it back for the purposes of explaining changes makes sense. And would make some things easier. Thank you!!!
March 6, 2011 at 2:50 pm
The visual schedule is more of a “prosthetic” than a support you try to fade- more “glasses for the near-sighted, than crutches for a sprained ankle. Over time, the format of a visual schedule might change [from pictures, to pict-syms, to word-symbol pairs, to a ‘list’] but taking ti away creates the need to do just what you have done: rely on “routine” the “absolute familiar”. When the schedule becomes the “routine”, then IT can change and still support your kid throughout their day- because the child/individual know what to expect not from “controlling” the situation, but from understanding the schedule. Hope it helps.
March 6, 2011 at 3:19 pm
definitely helps. thank you. I think we’ll be going back to the schedule again just for this reason.
March 6, 2011 at 9:44 am
Sadly many professionals do not get it, or are immune to it, or, I don’t understand. I try to remind my peers how hard the life of a parent can be but even watching it on tv – that moment that got to you might slip by without notice. Excellent post for explaining what it is like for many parents.
March 6, 2011 at 2:02 pm
Thank you. It was an interesting moment in the show, because it wasn’t the supposed main focus, but for so many parents it was the one piece that hit so close to home when watching. Thanks for picking up on that!
March 6, 2011 at 10:01 am
You KNOW how much I can relate to this post. Wrote my own post in January called “Baggage” about how hard it was realizing how easy it was to pack up my non-autistic twin for a day trip vs. his brother. How much prep is required to walk out the door EVERY time. sigh. Hope it gets easier. For both of us. And also? I want a day off. (Wait, I’m getting one in May, and I get to see you, YAY!
March 6, 2011 at 2:03 pm
I TOTALLY thought of you and your post when I was packing his bag for the trip. This is what Varda was talking about. I hope it gets easier for both of us too – especially when we get together!!
March 6, 2011 at 10:02 am
I do so understand. I can also tell you that Jett is 7, almost 8, and luckily he has outgrown a tiny bit of what you are talking about. He is still very rigid in somethings, but often he is able to at least try new things (restaurants, etc). And if they are too overwhelming to him, he is able to tell me he needs to leave. I have luckily learned to listen and respond quickly!
The other side of the coin is that he knows he is “different” and his self esteem is taking a beating these days because “he can’t have fun where other kids do because something always bothers him. Smells, or he gets cold”. His words.
The issues will change as Howie grows. And yes, I am so familiar with wanting just a regular day with my family.
March 6, 2011 at 2:20 pm
You’ve given me so much to think about – here and in your post today. I can see the self-awareness coming soon. I take your advice on how to handle it.
March 6, 2011 at 10:27 am
[…] excellent blogger, Alysia, wrote a post today about the need for a day off from Asperger’s. Her son, Howie, is a bit younger than […]
March 6, 2011 at 10:29 am
you are such a fantastic voice for people trying to find their way with children that NEED understanding and awareness. You are able to put into words what is trying to find its way into their consciousness…and let them know they need to be aware and not guilty for these very human and necessary thoughts. Bravo…
March 6, 2011 at 2:20 pm
oh wow. thank you.
March 6, 2011 at 10:30 am
I’ve seen Parenthood once, and have meant to watch it again. I hear so many references to it!
I so know what you’re talking about here in your post. It hurts that folks don’t “get” it. When I hear others complain about the “simple things” (eg. remembering the pin #) I always silently wish I could have such mundane worries.
It would be good to forget about it for one damn day!
March 6, 2011 at 2:22 pm
You should check the show out again. It’s hard to watch but I feel like it’s the only show that has really shown some of what it’s like to live with a child on the spectrum. It isn’t perfect, but it’s a start.
And you and your family have SO much stuff going on. I’m sure there’s a lot you’d like to forget about for a day. Thinking of you every time the news is on about Wisconsin.
March 6, 2011 at 10:48 am
I’ve never watched an episode of Parenthood, but I know how you feel. Friends think I’m too protective of Julia because I won’t let her go to a movie unless I’ve seen it first, and even then I’m hesitant unless they’re having the special “autism” screening. I’d love to be able to just let her go and do, or spontaneously jump in the car with both kids and ….whatever…
Not likely to happen. :sigh: (((hugs)))
I love the way you write. Always so clear.
March 6, 2011 at 2:23 pm
Thank you. Sometimes we have to do what’s best for our kids and ignore everyone else. It’s not easy.
March 6, 2011 at 10:56 am
Can so relate.
We often refer to our life as the “Luke and Ian show.” they want to do things, really. But to go someplace different? Do something different? YOU MUST BE JOKING. Schedules rule our life. Even unscheduled days, like Sunday, must run the same way every freaking week. same pizza, same restaurants, same seats in the car. We took an epic trip across the country two years ago, planned it for months, got five days into the trip and had to turn around and go home because they just couldn’t do it. I don’t know about just one damn day. I’d like a few months of it because I’m selfish like that.
March 6, 2011 at 3:21 pm
Sigh. I’m so impressed though that you tried the trip. That’s huge, in my humble opinion.
I’d like a few months too, really. Or longer. I’m so with you.
March 6, 2011 at 12:01 pm
I am fortunate in that my son is used to not having a schedule at home because I have ADHD and cannot seem to get organized but he loves it. He still has meltdowns though but I think that even though he doesn’t have meltdowns at school he is holding it together regardless of having a schedule.
I do feel for you and wish for you and your family to get a break one day. I love how you write, this is my first visit and I plan to return. Hugs!!!!
March 6, 2011 at 3:20 pm
Thank you for visiting and your great comment! I look forward to checking out your blog too.
March 6, 2011 at 12:34 pm
Hugs to you. Every word you wrote resonated with me.
March 6, 2011 at 2:24 pm
I know. I wish it didn’t.
March 6, 2011 at 1:00 pm
Your posts absolutely resonate so deeply. My son was diagnosed with PDD at age 3. But I have to say for me, some things are getting a bit easier now that he is 9, but some things are getting harder. He is becoming able to express his need to leave a situation. And we are broadening our horizons with a plane trip last week (our first since he was a baby). After we took the trip he said, ” I don’t know WHY we didn’t ever take a REAL vacation before!!” 1, 2, 3, 4….
March 6, 2011 at 2:25 pm
Thank you for this. I know as our son gets older there will be things we can do that I thought impossible before, and somethings that will seem impossible now that he’s that age. I appreciate you sharing this so much. Thank you.
March 6, 2011 at 4:04 pm
I just wanted to encourage you about Kindergarten. My daughter thrived in it last year. It was so much more structured than preschool. Age four is really hard, and I do believe it will get easier. I enjoy Parenthood. That ep inspired me to be thinking about how to talk about it with my daughter. Someday.
March 8, 2011 at 1:11 pm
Thank you for the encouragement. I have a feeling that he’ll do just fine there. This has been a hard spring for him and us, so it’ll just be getting through it all. I REALLY appreciate your comment – Thank you!! 🙂
March 6, 2011 at 4:47 pm
Brilliant post Alysia. I know we’re at a completely different stage to you, and to most people really but I still remember how hard it was to just simply leave the house. To tear him away from an activity to go somewhere else was a nightmare and then he had to be first to leave, first into the car, we had to drive the exact same route etc;etc. So yes, we gave in and micro/hyper-managed everything.
In time though, through interventions and social stories we were able to fight the rigidities. You can only fight one battle at a time after all and the key is to chose your battles wisely and in time things get easier. One day Howie too will make a trip with his dad 🙂
I still remember how hard it was and although I don’t think we have that TV programme over here I always shed a tear at similar TV shows!
xx Jazzy
March 8, 2011 at 1:12 pm
thank you 🙂 I know one day they will take that trip together. I don’t know if they’ll eat, but they can go…somewhere!
The show is online – check it out sometime!
March 7, 2011 at 7:43 am
Are you inside my hed again?
Brilliant post ! I can relate to every.single.point!
I Just want easy occasionally too 😦
March 8, 2011 at 1:14 pm
I do not claim to be in your head 🙂 You are in mine!
March 7, 2011 at 8:37 am
Although the days of packing up the house and putting together items to keep Aidan occupied are now few and far between, I do remember what THAT was like. It was never “let’s go”, never! I used to think, boy I would love to go to a pizza joint on a Friday night like “normal families” do, but no we couldn’t do that. Although we have moved leaps and bounds beyond where we were, “the loss” of what we couldn’t do still resonates to this day, and probably always will.
March 8, 2011 at 1:14 pm
Thank you Sheila. You always know just what to say.
March 7, 2011 at 1:25 pm
What I like about the show is that, as you stated, while it may not be perfect, it at least gives a glimpse of what life with special needs is like for those who may have little to no experience with it personally. What I love about your posts is the open, honest, vulnerability in sharing a glimpse into your lives. The moment you called out spoke to me because it reminded me of the times that I try to ‘buy’ the hurt away.
March 8, 2011 at 1:15 pm
thank you – that is very very sweet. I think that moment called out to a lot of us because it felt so familiar. Thank you 🙂
March 7, 2011 at 2:18 pm
I so understand the feelings expressed in this post. I am the mother of three children all in their teens now, one boy on the spectrum. We did all the same vacations for years, the same restaurants, the same routines, etc. Gradually, though, my son’s need for routine and meeting rigid expectations has gone down, and he is able to be far more flexible and sometimes even spontaneous. We still have struggles and moments I wish it could just be easy and uncomplicated, but it has gotten better through the years. Floortime therapy and social stories were tremendously helpful.
March 8, 2011 at 1:17 pm
Thank you so much for sharing that. I’m glad to hear it gets easier, and I’m hopeful that my other two children will get more tolerant and understanding when things are so hard for their brother. I really appreciate your perspective, and I know we have to keep up with the hard work to get to where you are.
March 7, 2011 at 2:20 pm
Thank you for these posts… It’s like reading my own thoughts sometimes…I look forward to new posts and wish that I could express myself so well…. Thank you so very much…
March 8, 2011 at 1:18 pm
no, thank you. Knowing that you’re out there feeling like I do helps me tremendously.
March 7, 2011 at 5:37 pm
I’ve watched this episode twice now – the second time with my husband. I felt like I needed one viewing on my own to see how I’d feel. I did tear up when the dad was just wanting his day. It’s so like my husband, just wanting to not have this to deal with. Not all the time. Just every once in a while to be able to just go do something without having it be a big deal or involve a negotiation or a plan.
But “this” is always there, even in the moments when things seem OK. We’re always just a step away from things heading off track. I’m much more like the wife who just wants for everyone to please follow some rules even when I’m not there to micro-manage so maybe we can have a little peace, and maybe I can be the one to stop being on hyper-alert for a few minutes.
It was interesting to me during the meltdown scene in the amusement park that I could feel myself going numb. It’s how I’ve always managed to deal with things. We haven’t had one of those all-out public meltdowns in a long time, for which I’m very grateful, especially since my kid is now 6 feet tall and quite strong. They happen at home before we ever get out the door if they’re going to happen, and it’s not nearly so physical as in his younger days. But those struggling, screaming episodes used to be a part of our daily life, and even now I see that even on a TV show, and I just shut down. Even though things continue to improve for us, over the years some things have really taken their toll.
March 8, 2011 at 1:20 pm
oh Diane. I totally get where you’re coming from. Even though you think you’re over some things, a show (or a song or something) can bring you right back. I hope someday soon we both get a moment to catch our breaths and sit back.
March 7, 2011 at 8:47 pm
Today was the day I should have “gone rogue” LOL
I think as parents to these uniquely fabulous kids, we DO need to take a day off once in a while and not be “here”. Even if a “day off” means five minutes alone in the bathroom humming a favorite tune… SOMEWHERE where autism can’t reach us just in that quiet moment and we can just BE.
xo
March 8, 2011 at 2:04 pm
Rachel, you are one smart lady. My quiet time is now the shower. Turn the fan on. I can’t hear anything until the water goes off. And that time is all mine.
March 8, 2011 at 8:10 am
Just this weekend, my son showed the first signs of awareness that he understands he is different. My mom took my kids grocery shopping with her, and the lady behind them in line was talking to them about what they bought, and my 5-yo son turned to her and said, “Well I have to eat gluten free and I have autism.” And while I was sorry I missed it, and thrilled that he said that to someone for the first time, I was also sad that he even had to say it in the first place. I think we’ll always wish for a day where autism isn’t a part of our lives!
March 8, 2011 at 2:03 pm
wow – Ellie! I can see how that would be very bittersweet. But that’s some amazing self-awareness. I hope that someday it won’t be so hard for our kids and for us.
March 9, 2011 at 1:22 pm
I needed this post today. (although I do realize you wrote this several days ago)
I just posted about this same topic. In my case, “going rouge” was trying to feed my little guys homemade chicken noodle soup, instead of the canned variety that they love so much. It caused meltdowns and tears for many, including me.
We are also going through the kindergarten process and my other autism moms and I have asked the question so many times, why does this have to be this hard? The parents of typical children don’t have to think so hard, and it just isn’t fair.
::stomping my feet for all of us::
March 10, 2011 at 11:34 pm
Well, you know I totally get this, after all our online conversations. I totally get this. Boy, do I! It’s nice to know I’m not the only one out there feeling this way. Makes me feel not so alone.
March 11, 2011 at 4:04 pm
missed this last week somehow… wow, does it ring true. And all I can say is that I’m right here with you. On this ride together. A ride I certainly didn’t intend to take, nor did I have a clue what I was in for… but for better or worse, it’s my ride and I’m so happy that I have such wonderful, amazing, strong and supportive mamas to share it with. xo
March 15, 2011 at 3:04 am
[…] more about family outings and get each member’s perspective.ParentingAlysia Butler presents Take it Easy posted at Try Defying Gravity. In response to a Parenthood episode, Alysia writes about her […]