Figuring out what I wanna be when I grow up.
Oop..I AM grown up...

Sunday, September 4, 2011

Good Times On The Spectrum Express

me:  I'd like to get off now!
Jack: sorry.  We have to do this every day from 8 AM till 9 PM.

Come to think of it, the title of this post is probably inherently sarcastic (typing, then pausing to pound some chocolate covered nuts). 

Right!  Let's begin, shall we!

One of my son's biggest problems is ANXIETY.  I wonder if this is true with most kids on THE SPECTRUM.  I mean, think about it:  if you've ever web-surfed to an Autism-related website, and looked up common indicators/signs/characteristics, you have no doubt read that these kids are attached to rigid structures and schedules.  They need to do the same thing at pretty much the same time and in the same way, each day and every day. 

A lot of mothers, like myself, have sensed this instinctively from a very early time in our kids' lives; and I'm talking way before any formal diagnosis was ever made.  This means, that when Jack was about 2, without knowing why, or even really giving it that much thought, I just came to realise that Jack NEVER watched a Baby Einstein dvd BEFORE breakfast.  Then, on the weekends, when typically all hell would break loose because The Man was not in the office, and all schedules got way the hell out of whack, I would come flying down into the TV room to find a freaking out toddler, and inform my husband;

"No videos till after he eats breakfast!"

It would be the simplest thing:  daddy would get up with the kid on Saturdays because mommy was typically burnt out and tired from a whole week of being screeched at and trying to find ways to keep a kid who hates toys and only wants to running and climbing amused.  I'd hear Jack ask to watch Baby Einstein, and The Man, thinking 'what's the big deal' would comply.  And then the kid would turn into a behavioural monster, and The Man would get all put-out; not understanding what the hell the kid's problem was, after all--he put the video on for him, right? 


The evironment has to be controlled.  I think thusly:  the greater the anxiety, the greater the need for total control over all things around us.  What came first:  the anxiety or the need to control?  Either way, I'm willing to bet that a lot of moms of kids on the spectrum at times feel that they are slaves to their childrens' needs.  Is it better to live a less structured life and be at the mercy of your kid's screaming and rage, or is it better to organize as many things as possible thereby ensuring you will have a much happier, much easier to live with child? 

Maybe there's a middle ground somewhere in all this...

Anyhow, enough musing.  I'll tell you what my summer's been like, and why now that it's almost mercifully over, I'm ready to break. 

I've heard several mothers lament that their kids would not go outside over the summer and they could neither get them to go out to play, nor to go out anywhere for that matter.  I've heard this from moms with kids on the spectrum, and from moms with "neurotypical" kids (that's a label that sits like an itchy shirt for some reason that I've yet to figure out). 

Oh how I relate to this.  Later in the summer it dawned on me, that despite my best effort to keep the kids really busy, and inventing a loose but decent schedule of "karen drinks coffee in the morning WITHOUT BEING BUGGED, then we go out after lunch,"  we soon shifted into Jack's schedule, which he never consciously acknowledged but went a little something like this:


Hell.  Pure hell.  This translated into hours and hours of Jack cycling from computer to TV to his room, etc, ad nauseum, ad infinitum.  And I was bored. And he was bored.  And I watched the days pass by outside my window, minutes ticking by with excruciating slowness, as I waited for that magical timer to go *DING* and I could go outside and not have to stay nearby and keep my CONSTANTLY FIGHTING children apart from each other. 

I started to give up trying to go out (which is probably a mistake) because I could not take the fighting, the wailing, the sobbing, the pleading, the verbal and sometimes the physical abuse.  I also couldn't take Jack harassing his sister constantly even in public places, or Ella's typical-kid "I want this, I want that, GIMME GIMME GIMME, WAAAAAA!" 

They sucked the life out of me, and I gave up. 

Yesterday was a very dark day.  I was convinced that I have no other purpose in this life than to care for people.  "Why bother trying to write anything, karen" the ugly little voice said; "why bother trying to write and finish a book and gain some kind of accomplishment in life:  your purpose is solely to care for others. This is all you're going to accomplish until you die."
Damn I hate those days. 

Then, there was that other ongoing problem:  the one in which Jack HATES his father on the weekends.  I couldn't figure it out--all week, Jack would be a pain in my ass, but still lovable, and still relatively civil to his dad.  Then the weekend would arrive and he would turn into the rage machine.  His dad would say something as simple and mild as "you need to go wash your hands.  They're dirty from the park," and the kid would FLIP OUT.  He'd be FURIOUS--and run at The Man to attack him, with a look of pure loathing on his face. 

Weekends were becoming a total hell of action and reaction between the two of them, and near constant TIME OUTS.  And then, as I was getting ready one morning, it hit me, like the world's most obvious smack in the face:  the reason why Jack was so filled with animosity toward his dad on the weekends is because his dad isn't working. 



I mean, the answer was right in front of my nose, and I could not see it.  It didn't occur to me because The Man works from home now, so I figured it wasn't like before, when he was out of the house every day of the week, and home on the weekend, messing with Jack's routine.  But, instead of starting the day on his laptop, then making the kids' breakfast and then returning to his computer, as he did Monday to Friday, The Man would maybe sleep in and then he'd spend a lot of time trying to coax Jack to go out and do something fun. 

This isn't a bad thing of course; Jack needs to learn that his father can interact with him more, and that he isn't always going to be working.  So, I had an idea; I suggested to The Man that maybe he might consider starting his Saturday/Sunday off by surfing the net on his laptop, rather than working.  Hell, we all lurv the computer, right???  He wouldn't be doing work, and it would be a relaxing way to ease into his day, and an easy way to ease into Jack's day.  That way things wouldn't appear radically different right from the get-go.  I also suggested that he back off, for now, trying to get Jack to do something on the weekends, and instead implement a one night a week "Jack and Daddy" night, whereby they could go swimming or go to the park.  Make it a regular night, and then slowly incorporate other togetherness times. 

It seemed to work pretty well.  We just tried it last weekend.  Still, the kids have been making me want to cry.  Here is the biggest problem, which ties in to my long-winded intro to this post:  ANXIETY.  Jack will be starting school in two days.  Whenever there's a big change on the horizon, he becomes UNLIVABLE for weeks:  angry, sensitive, sarcastic, SHOUTING every answer, calling us "meaney" constantly, bugging his sister RELENTLESSLY, and it's all because that dot on the calendar is making him mental. 

The only survival tactic The Man and I have for this at present is "buckle in and hold on."  Endurance.  That's it.  I haven't yet figured out what else we can do.  I try to have talks with Jack all the time about how he's feeling, and quell his worries and tell him that he doesn't have to worry because I'll always be there to help him.  I empathize, I sympathize, but that anxiety is a monster.  I can only buckle in, and hold on and wait for these periods to end.  I pretty much know when the tide will turn too:  when I've broken.  It's pretty sad to say, but generally by the time I've completely had it and am in tears, things tend to get better from there. 

It's not a great strategy.  I'd like to hear how you other parents deal with your child's behavioural challenges and their anxiety over BIG transitions. 

So, the kids have gone off to my inlaws' today.  I should have gone with them, but my god--I needed the break.  Like Popeye said: 

That's all I can stands, and I can't stands no more.

Word, Popeye. 


  1. when we're approaching a big change, we get buckets & gobs of tears from the brookster. she cries over things that she normally doesn't cry about anymore, and i think it's just because her anxiety about the new thing is racheted up too close to the surface for her to have any control over her feelings & reactions. at times i've tried keeping information from her so that she doesn't have to fret over things for so long, but that has it's own pile of problems because she needs time to process & think about stuff or changes before they happen. like you said, it's a buckle in & hold on situation. it doesn't last. once you get a situation figured out & dealt with, it'll be replaced with a new one.
    now we're entering into puberty & that's a whole new can of worms on top of her AS. goodie, goodie gumdrops.
    did you know kids on the spectrum are likely to have seizures during puberty?
    NT is a strange phrase. i don't like "normal" either though because of all the implications that go along with that.

  2. well gabe is 'normal', but is always worried, like he might get poison ivy ,or after a science lesson he wanted to know if everything was poison, or he almost broke his arm....and on and on it goes. i don't want to be mean but sometimes i just want to yell'suck it up, for the love of pete!!'argggg.well at least in a couple of days some other poor sap, uh teacher will have to deal with them for 6 hrs per day!

  3. glad you got your break.

    I only know about autism through blogs of parents with children who have it.

    Of course I have social anxiety disorder with extreme panic attacks and well, I'm just flat crazy. So i love structure, organization, routine, and order. That;s where the robot perosna and nickname came from. I would have been GREAT in the military if I had gone.

    You're going to have to figure out how to parent or "deal" with his anxiety because my wife and kids "deal" with me and still love me...well the teenager likes me because teenagers dont love anyone.

    I like it when you post stuff like this sometimes. Makes me respect and understand you more.


  4. Karen, man I thought my summer was too long with my kids bugging the crap out of each other, but you are dealing with so much more. I only remember some of what my girlfriend looked into when they thought her daughter had asperger syndrome. To calm her down, they would pile a whole bunch of blankets on her, the weight felt good. She liked to spin around to relieve the presher and swimming and going to the bottom of the pool also helped. I hope you have someone who can help you in your day to day with your son. As far as what your are doing, it can't be wrong because you have to do what you have to do to survive. Good luck and yeah for school.

  5. Bet you were waiting for me to weigh in... Lord, I swear we have the same kid. Alex went mental as soon as I put a schedule up and it had the ill fated date "start school" on it. He'd look at it and you could visibly see him up-tick and get all anxious and upset. Thing with him is--he'll hold onto his anxiety and blow later. Took me forever and a day to connect that his little hissy-fit was over having to see the schedule with the drop dead date on it and not really about his sister talking too loud, going to Sam's instead of Costco, having to wait 10 minutes instead of 5....

    I sent him back to school with mixed emotions but let's face it--I was exhausted from our summer schedule and having to wrangle them. Now I'm on to worrying about school. Sigh.

    I'm glad you got a break. You need and deserve that time apart.

    Change is never easy and with our kids it's magnified. You're doing great and don't ever doubt that.

  6. Sherilin, I too have tried the withholding info tactic and it has its good sides and negative sides for sure! On one hand, it's way less time to fret, on the other hand, you're right--there is NO time to process and make peace with anything.

  7. amen to 6 hours a day at school, Paula. I don't think it's being mean to sometimes tell a kid to suck it up--when they panic over a lot of things, being super nice doesn't always help. Oh how I know this!

  8. incidentally Lance, I was going to ask you about the robot thing. I figured that's what you meant.

    Yeah, I know how you feel about the anxiety and how it impacts your life. How powerless we are to our own bodies at times, no?

  9. Swimming certainly is a good thing, Alaina. The trouble is, we can't do these things all the time. That's the problem. Yeah, I remember the weight and pressure thing. It makes me wonder if I could craft a spcial heavy blanket for Jack so he could put it on him tonight at bed when his stomach is flipping for school tomorrow.

  10. thanks Lizbeth. I remember all your posts about how your son felt as soon as the dreaded BACK TO SCHOOL date reared its ugly head, and totally sympathized. You certainly do have a whole new can of worms to deal with at school now. Ah, endless worry. How many years is it knocking off our lives, Lizbeth?

    So do you do the "take one day at a time" thing too, or do you have some more innovative strategies?

  11. I've got a schedule of his day at school posted on the side of our fridge (command central) and our daily routine posted as well. Any small change I have school try to tell me prior so I can prep him. We tell him of changes as soon as we find out--he has a really good memory so if you say something once he retains it. A big change like school I start about 1 month in advance just getting him used to it so when the day arrives he knows pretty much what to expect. I don't do "one day at a time" but rather work on what's happening for the week and post that. He's gotten pretty good with big changes as long as we get in front of him and now has issues with the smaller transgressions--kids breaking the rules or telling white lies--all of the small stuff that you can't prep for.

    Good times.

    email me if ya want. :)

  12. Hey, Karen. Glad u and the man worked together to see things from a fresh perspective and intentionally tried something new - and it helped! What's more commendable is that you realized it despite being despondant and exhausted.

    One other thing which sounds like I am joking, but really I'm not. If things get better when you break down and cry about it, then perhaps do not try so desperately to hold out so long before you do. While you are certainly there for your kids, I believe it may help if they realize that you have feelings too. Now, it may require more explaining yourself afterward so the kids do not reach the wrong conclusions, and it may not stop the behaviour, but at least it will likely be good medicine for your psyche. If you don't wait until the breaking point you will also have more control over when and where it happens too. Don't try to be the superhuman parent with a solution for everything.

    As for spectrum tactics, I have nothing to offer. While my son frets and worries, but is careful & thoughtful enough I never have to worry, my daughter is optimistic and overachieving, yet will argue with me that SHE wants to TRY TO CUT THE LAWN! (she's 2, for others reading this). Yet, nothing approaching what you've had to deal with.

  13. good times indeed, Lizbeth. Isn't CONSTANT PREPAREDNESS fun!

    I think Jack seems to be less freaked than last year, and it helps that his cousin will be at his school this year and they'll probably be in the same class. He really likes her.

  14. Matt, it's not a conscious decision--the break down thing. No, I'm not trying to be flippant. It just always works out that way--I try to have as much patience as possible and empathy, but it's just not a finite amount. Besides, that would mean I'd have to cry every day and I don't know if that would help anything!

    Your girlie is quite the mini grownup isn't she! So cute.

  15. i thought the same thing as matt about letting the tears flow. i've found with brooke that once i collapse into a big cry, she suddenly pulls out of herself enough to refocus beyond her own brain. it seems to help her when she's able to see something other than frustration from me. usually i'm either calm or frustrated around her, so when i cry, it's different & worthy of notice and sometimes compassion.
    maybe we should cry more.

  16. OMG I just don't know how you do it. You are frickin Wonderwoman. I can barely take care of myself, let alone two kids with such demanding and high maintenance needs.


    Sarah xxx

  17. hm...maybe we should, Sherilin. Still, jack is not always the most compassionate kid...

    Must ponder this.

  18. thanks Sarah. Sometimes I wish I just took care of myself, even if I do love my children--believe me.

  19. I've been thinking about this post all day - seriously - I was going to comment, but then I held back. I deal with different spectrums than you (don't want to post online), so it's a challenge to throw in my two cents, not knowing Jack, and everyone else first hand. The "anger" at the change in the man's schedule is actually pretty normal for kids. I know Jack is unique, but the "go away I"m working" then suddenly there is this free time, and "go wash your hands" comes up - that is pretty normal for children who feel they are left to wait at other times. I hope it doesn't offend, but even I remember the resentment factor of kids doing this, and my kids are on top of that one, too. Kids know they are equals waiting to be recognized as such at home (where they need it). Jack, it sounds like, sets the tone of the house, if I'm wrong, please delete this! Over time, he may grow to be all too aware of it, and everyone walks on eggshells (even when he is 18). Parents set this tone, "do what I say," and "I'm ready to play" when we treat kids as more adult, they respond better - at least for me. One of my cherubs used to set the tone, too. It was not an easy thing to "undo" because it caused anxiety, stress and resentment - not to mention tantrums, lots of them. There were underlying issues contributing to them, but I chose to deal with those separately from the "control" demands. I spent months, I guess years now, laying down the laws of everyone matters, you can be angry, but it doesn't mean you get be angry around me, and bring me down, because you want to. I don't have to get upset because you are. . .etc. Calmly, non-ruffled, I would take him to another room or area and explain, "You are allowed to be angry, and I see that. You can be as angry as you like right here, and when you're done, come back and tell me, we'll move on." The idea was always to have him be in touch with his feelings and be in them-own them, learn to be done with the ones he didn't like the results of. The constant explosions at everyone around him would continuing into more explosions: audience and action. Watch me control you with my mood was how it came across. I realize autism has a very specific set of events I may not know all the ins and outs of, so take what you need and leave the rest. I just found that once he "owned" (believe me he hated it and blamed EVERYONE for his behavior, mood and actions until he got inside and accepted he made the choices, and could control them) his creation of his reality, he slowly stopped acting out. He still does, but now the work he puts into it is moot - he knows we won't change the routine (or lack thereof), plan or meal just because he has a fit. He has fits, but they are his. We support him through being mad, frustrated etc. by agreeing that we understand what he's feeling, but gently remind him, "it's okay - you can be mad until you're done. we're still going to be happy, you're welcome to join the fun when you're ready." It has helped him not control kids on the playground, or in class. He has let the world off the hook, and sees how he can be in the world without forcing the world to fit into him. Hope something here helps. Oh, the man - yes, I still think you do too much around the house and he can balance your load. If I can do it all, he can do half (and not just earn the $).

  20. When they are not at the beach or with my parents, my kids have spent the entire Summer inside too. Now that John is 11, he is mostly free to run and find friends. But his anxiety keeps him close to home and close to me. It's 5:55a.m. and he's already down here with me. I get up at 4:30a.m. just for the break. Oh well! Anyway, there was a lot of screaming over the Summer and it was mostly from him yelling at his siblings. But, at least he was happy to go back to school. And so was I. So far, so good! Keep your fingers cross.
    Your Friend, m.
    p.s., I can't help you out. I'm in the same boat. m.

  21. but Mark, being in the same boat helps immensely for some reason.

    Yes, kids don't want to go outside any longer. It makes me crazy. I'm starting to not mind the kids being four houses up the street, so I suppose my own parental paranoia has something to do with it.

    p.s. OMG, YOU ARE ABLE TO GET UP AT 4:30? Can you teach me some self-discipline?!?

  22. Great points Christina. Yes, I am working toward getting Jack in touch with his feelings, as touchy-feely-new-agey as that sounds. Honestly though, as soon as it clicks with him that he can acknowledget "hey, I feel angry" he can begin to deal with it in order to calm himself down. I just heard of a book recently about a five point scale wherein we teach kids to be able to assess how they feel, how angry they are, and how to calm down from it. I'll try your trick of "if you're angry, be angry in this room, and when you feel better, come back and join us." It's great.

    I did try that for a while saying, if he feels angry to go up to his room and have a good scream, but sometimes he's so angry he won't even take that advice :)


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