A wonderful and normal time

Hello! I am not dead. I was just doing non-computer-related things with our visitors all weekend, and it was lovely. Otto’s mom was like a kid in a candy store, just beaming at the kids and so excited to be here with us. Otto’s aunt quickly became Monkey’s new favorite person, and the rest of us sat back and chuckled as he brought various toys and items for her inspection and approval, and discussed many important issues of the day (“Do you believe in an afterlife?” he’d asked both our visitors at one point, out of the blue. “I don’t want to be dead forever, so I think there must be.”), and she, in turn, paid him unceasing attention and praised his every move.

Chickadee enjoyed the visit as well, I think, though she is sliding into teenagerhood in such a way that renders her conversations shorter, wedging them inbetween homework assignments and activities and times when she’d simply rather curl up on the couch and read a book.

We did a little sightseeing and a lot of eating and tons and tons of talking.

On the last night, Otto’s aunt turned to me and said, “I would never have guessed there’s anything wrong with Monkey. He’s delightful and he hasn’t had any problems at all!”

She meant it as a compliment. And she is truly one of the loveliest women I’ve ever met, so while it’s true that the same statement from someone else might have solicited a defensive “There ISN’T anything WRONG with him!” response from me, with her I found that my response was just… a little bit of sadness, I guess.

What I ended up saying was that yes, he’d had a really good weekend. And when he’s doing well, that’s right—if you didn’t know he has Asperger’s, you might not see it. He was happy and social and “normal” (oh how I have come to hate that word) and I wasn’t surprised that a few days of having his aunt and grandmother dote on him hadn’t included any issues. It’s easy to pass when life is good.

“But he handled the restaurant thing okay,” she persisted. Otto’s mom agreed. We’d headed out to dinner at Monkey’s favorite restaurant, which—it turned out—had moved to a different location. Upon discovering this, Otto and I opted to head to another restaurant just around the corner, because we realized that 1) the new location was far away, and Monkey was already really hungry and 2) the new location might not be open yet. Monkey was disappointed, sure, but we talked him through the switch, assured him he could order the same thing he’d been planning to eat at the other restaurant, and I’d quietly talked him through a couple of stress-reduction exercises. And I also let him order a Sprite and I generally don’t let him have soda, so that was a big treat.

In spite of all of my efforts, he was a bit more anxious during dinner than I would’ve liked. He wanted me to play games with him on the kids’ menu sheet (you know that endless game where there’s a grid of dots and each person draws connecting lines to make boxes?) and I agreed, because I sensed that it was not a day when he’d be able to deal with a “no” and keep his cool. So we played for a while and he held himself together.

So when Otto’s aunt commented that he’d “dealt with the restaurant thing okay” I had to chuckle a little, because yes, he didn’t have a meltdown; but it also involved a lot of effort and attention on my part to make sure that he didn’t, and I’d spent the entire meal on edge because I really wasn’t sure he was going to make it. (And then I read this post of Shannon’s and thought, “Yeah, exactly.” Sometimes what you see as an outsider really doesn’t tell you how much effort went into that behavior. Heh.)

Both Otto and I explained the constant heartbreak involved in keeping him okay. The judgment from others, because 90% of the time he looks like every other kid, and when the 10% of situations where he simply cannot keep himself together hit, it’s obvious that onlookers wonder what egregious failure of parenting has resulted in such unacceptable behavior. It’s better, I assured them, than when he struggled more often. Of course it is. But the less he struggles, the harder the remaining struggles are, simply because others believe he “should” be able to handle it. After all, he’s fine most of the time, right?

The visit was—to my mind—far too short. I blinked and then it was Sunday morning, and time to head back to the airport. We all hugged and thanked one another for such a wonderful time, and I whispered to Otto’s aunt that she simply must talk Otto’s uncle into coming down with her, next time, and then as quickly as they’d come, they were gone again.

Chickadee spent most of yesterday finishing up a school project that was due today. Monkey spent most of the day cocooning—my word for when he clearly needs some downtime. He curled up in his room and read. He watched a little bit of TV. He played a few games on the computer. By evening he was complaining of a stomach ache, but couldn’t say whether he was hungry or sick, so I scrambled him some eggs and made him some toast and he ate and went to bed.

This morning Monkey was downright pitiful. He was tired. It was too bright. It was too early. He wasn’t hungry. Why did he have to go to school? He wanted a nap. He wanted it to be dark.

Everyone gets up on the wrong side of the bed, sometimes. For my beautiful son, though, the gregarious, delightful boy who had both his aunt and his grandmother protesting that he “seems perfectly normal,” this morning was not a surprise to me at all. Three days off his regular schedule, three days of constant, unusual social interaction… it taxes him. Maybe you don’t see it, but he’s working so hard to stay “okay” while his slightly miswired brain is trying to tell him that this is HARD and WEIRD and DIFFERENT. It’s not that he doesn’t love it, on many levels. It’s not that he didn’t have a blast, because he totally did. It’s just that it’s hard work for him. It saps him of energy. And then he wakes up with a bit of a… hangover, if you will.

Going to school today will be good for him. It will get him back to the schedule he needs and craves, and help return him to equilibrium. I warned his teachers that he may need a little extra help today. If the day goes well, he’ll be back to normal tomorrow. If it doesn’t, he may need another day.

Either way, he’s a perfectly normal Monkey. Whatever that means.

27 Responses to “A wonderful and normal time”

  1. 1
    StephLove September 27, 2010 at 8:57 am #

    Yes. Aren’t we all normal, for ourselves?

    I mentioned in comments earlier this summer we were having our son tested for Aspergers. The psychologist concluded he had “Aspergers characteristics” but not enough to qualify for a diagnosis. I think this makes sense because he reminds me so strongly of Monkey but just a little less so in many situations. He might have some of the same difficulties (esp. the restaurant change) but it wouldn’t leave him so drained.

  2. 2
    hollygee September 27, 2010 at 9:07 am #

    I’m guessing that all families are hard work from a cornucopia of situations, luckily they sometimes yield great joy, too.

    And the toofless puppy? Is she keeping her tongue in her head?

  3. 3
    Headless Mom September 27, 2010 at 9:07 am #

    Mir, this is a really excellent piece. It actually explained a lot for me.

    xoxo

  4. 4
    Brigitte September 27, 2010 at 9:10 am #

    Sadly, I can’t even think of a way that Monkey’s behavior could have been complimented, without an opportunity for the compliment to be taken the wrong way.

    Also sadly, many Monkey stories remind me of myself and my siblings. I really must see a mental health professional one of these days, but as social and phone anxiety is a major issue for me, I’ve been telling myself that for 20 years and haven’t gotten one inch closer.

    Brava! for helping him with his daily issues, so he can work his way through this world of ours!

  5. 5
    dad September 27, 2010 at 9:22 am #

    A truly wonderful post!

    Glad you enjoyed the visit.
    Can’t wait for our turn.

  6. 6
    karen September 27, 2010 at 9:27 am #

    Mir… there is no such thing as normal. I hate that word too. Everyone has their own normal, if it has to be used at all.

    I am frequently asked if my daughter is “normal” again after her accident and TBI. I say yes, she is living a “normal” life again. Her normal might not be someone else’s normal, though. And I try so hard not to be offended at the question.

    You’re handling all this like the awesome mother that you are… keep up the great work and you’ll all be.. normal :-)

  7. 7
    Just Margaret September 27, 2010 at 9:47 am #

    Love this. Everyone’s normal is different.

  8. 8
    Karen September 27, 2010 at 10:14 am #

    Another great entry. I’ve used Balancing the Tray by Lenore Gerould at http://special-needs.adoptionblogs.com/weblogs/balancing-the-tray to describe why something that appears to be so minor can push my daughter over the edge. It is also useful for the “If she can do A, then she should be able to do B” mentality.

    And normal is a setting on the clothes dryer. We go for happy and functional here.

  9. 9
    Aimee September 27, 2010 at 10:18 am #

    Thank you so much for sharing this, and for linking to Shannon’s post. It’s a great reminder not to assume that you can figure everything out from simple observation, and that we can never really know what’s going on inside someone else’s world.

  10. 10
    navhelowife September 27, 2010 at 10:32 am #

    I love the image of a “hangover” because I think that describes it so well. My middle kid who has some anxiety/adhd battles often needs a “down” day after a either really GOOD time or a really BAD one. Working at keeping your ‘stuff’ together is hard work and mentally tiring!

  11. 11
    RuthWells September 27, 2010 at 10:35 am #

    You just broke my heart.

    I had a rare difficult weekend with my boys, and was snappish and impatient. We were out and about, and it’s not just the meltdown I worked hard to avert, it’s the need for constant monitoring and managment that my husband just doesn’t get because….. he also has Asperger’s. So I end up micromanaging and exhausted and they all think I’m crazy.

    And people (HUSBAND) don’t understand how taxing it is to have to tell a 14 year old to turn left out of a storefront instead of right to get back to where we came from, or to tell a 12 year old not to run his hands along the (FILTHY) guardrail as we cross the bridge. It’s like I am constantly making all of the life-skills decisions for the entire family, and it’s exhausting.

    I need a break.

  12. 12
    Flea September 27, 2010 at 10:46 am #

    I totally get it. My youngest is a healthy ADD kid. He does the same thing after a stimulating couple of days – just melts down sometimes. I know that ADD, while having so many similar indicators, is still very similar, and it wears sometimes. But we love them. And they ARE normal. It’s just more work for us and him is all. And they’re more empathetic people, I think. Different shades of normal.

  13. 13
    Sheila September 27, 2010 at 10:47 am #

    At the risk of gushing, I just have to say again that you are one Excellent Monkey Mama. Furthermore, what you write here helps me better understand not only my own kid, but other people’s kids, too. Thank you for that (again).

  14. 14
    Flea September 27, 2010 at 10:47 am #

    Geez, I’m tired. Sorry about the similars. I meant that, while similar in appearance, ADD is not on the same scale. It’s bewildering.

  15. 15
    Mamadragon September 27, 2010 at 11:01 am #

    Love this post, Mir. It’s so true. So many times I have heard from somebody that “She doesn’t SEEM like she has Asperger’s. Why she handled herself SO WELL xyz social event!” Um, yeah. You didn’t notice her father and I working our butts off to keep her anxiety down and her behaviour under control. You didn’t notice the child taking deep gulps of air in an attempt to calm herself, or fidgeting and playing sensory games. And you won’t see her after the social event is over, having a massive screaming fit to release all that tension and unable to stand because the adrenaline has drained her body, leaving her nothing but a puddle on the floor.

  16. 16
    Lylah September 27, 2010 at 11:46 am #

    I identify with what you wrote in so many ways! I’m glad the weekend was excellent, and I hope that you get some cocooning time, too, if you need it… XO

  17. 17
    Chris September 27, 2010 at 11:54 am #

    I don’t even know why this post made me cry. But it did. I can’t put it all into words, but so much of it is the restraint you’re using as you describe all that you (and Monkey) do to keep it together, to have good days most of the time, to share with us all what life is for all of you. Bookmark this one if you ever have doubts as a writer (and as a mom). This is what “good” looks like.

  18. 18
    Christina September 27, 2010 at 1:09 pm #

    Mir, my best friend sent me a long to your blog. Long time reader on wantnot, SO glad to have somewhere to read about your daily events with your family! You might remember, my daughter is currently being evaluated, probably SPD, possible ADHD or Aspergers. We find out Friday what all the doc thinks is going on.
    Stop by my blog if you get the chance, I’m trying to document what we are going through too, although we are just beginning! I’d welcome any insight and advice from someone with experience!

  19. 19
    Annette September 27, 2010 at 1:56 pm #

    I wish I didn’t know what you are talking about…but, alas, we had the meltdown twice this weekend.

    I am glad you had great visit!

  20. 20
    Lucinda September 27, 2010 at 2:32 pm #

    Glad the visit was as wonderful as you had hoped. A beautiful and touching entry, one more of many. : )

  21. 21
    Heather September 27, 2010 at 2:52 pm #

    He’s a perfectly normal and wonderful Monkey, indeed. Miss Mir? You rule.

  22. 22
    Shannon September 27, 2010 at 4:03 pm #

    I am so glad you documented and shared Monkey’s day with us — what a champ. Thanks for the link love, too.

  23. 23
    Katie in MA September 27, 2010 at 5:19 pm #

    I’m glad your weekend was full of wonderful moments, and I’m glad your Rockstar Mom Mode kicked in to help Monkey find his balance. Don’t you love the times where you can say, “I did everything just right…for a change!” (Okay, maybe my inner voice is a little sarcastic, but you know what I mean.)

  24. 24
    Beth R September 27, 2010 at 7:19 pm #

    Your hangover description is perfect: that’s exactly what I feel after a business trip. I’ve got some issues that mean I need more down-time after a trip than some of my colleagues, and that’s it exactly!

    You are a fantastic mom and person. Just remember that :)

  25. 25
    meghann September 27, 2010 at 8:13 pm #

    As an Aspie myself, I can tell you. a hangover is EXACTLY what it feels like. (either that, or it feels like you just ran a marathon.) With enough preparation on my part, I can handle being social, but I have to have downtime afterward, to recoup.

    Monkey would fit in really well in our family. We’ve got me, and then one of my sons is autistic, and the other son is an aspie, and then my dad and sister are aspies too. One big happy, yet extremely quirky, family!

    It is interesting because whenever we go up to visit my dad and sister, we plan things so there is down time for everyone involved. We all understand that we love each other, but we all also can’t handle too much social interaction or we snap.

  26. 26
    Half Assed Kitchen September 27, 2010 at 10:21 pm #

    “I don’t want to be dead forever, so I think there must be.” !!!! That is the best thing I’ve ever heard. And please instruct monkey to wait to choose a spouse until my daughter is of age. I think she’s about 5 years behind him.

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  1. They Said it Better Than Me | Never The Twain - September 28, 2010

    […] Mir at Woulda Coulda Shoulda wrote a beautiful post about what it’s like to have an Aspie kid who passes as normal. I could have written this […]

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