Susan's Blog

Monday, April 19, 2010

Here’s what it’s like:

It is very hard to get it right.  When Nat is home for the weekends, it is tough to figure out what he’d like to do, other than walking all over the house, again and again, or going from bed to couch to bed.  I suggest movies, reading, or music to him, but yesterday he kept saying, “no.”  I don’t feel I should force him to do something on a Sunday.  But I do wonder if he would be happier having a schedule.  At one point, I even thought I heard him say “schedule,” in his stream of self-talk.  I stopped him and I said, “Nat, we could make up a schedule.”  “NO.”  Am I supposed to pursue this, behaviorist-style, and force the matter?  At 20, if he views home as the total stimming ground, how do I change this view?

When I think this way, my head gets very murky, like I’m suddenly swimming in the part of the Bay that’s got the icky hidden underwater grasses.  You can’t put your feet down anywhere, because what’s in those grasses?  Some kind of weird tick things?  Crabs with open claws poised?  Way-too-soft mud?

I rewind a little and think in terms of real activities to do with Nat, that we both enjoy, rather than “what are Nat’s choices of activities I could set him up with?”  When I think the latter, I get overwhelmed with how few things I can think of.  But when I think, “It was nice and easy going to Starbux with Nat,” and I imagine the walk, and how long it will take, and the people staring or not, I almost always decide to do that.

Yesterday I did not.  It did not even occur to me, I have to say.  Yesterday was a day like an old puzzle you find, where you know there are going to be missing pieces, but you work on it anyway.  I knew from the moment I got up that I was not going to have enough to do.  I knew I was going to plant seven shrubs but this would be over in an hour.  I have a good book, and a new crossword, too.  Yesterday I had cleaned the house, top to bottom.  Laundry was chugging away. Groceries totally need to be bought, but I just didn’t want to.  Or I’d see if someone would do it with me.  Max busy with friends, Benj busy with some new animation project.  If I don’t know what I’m doing with myself, how can I begin to know what to do with Nat?

Bad thoughts beget bad feelings, so for a lot of yesterday I had a kind of low-level guilt running through me like a cold coming on that you think you can ignore.  Max and his friends saw the bare cupboard and offered to go buy a few things so they could make pancakes, bacon, and eggs for dinner.  Fine with me.  I hate making dinner, I hate food-shopping.  More guilt, but okay, go ahead, knock yourselves out.  I listened and heard some joking about how we were out of food, but this annoyed me because why do you think we’re out of food?  Because Max and his gigantic friends move through the kitchen every few hours like locusts.

I roused myself to bellydance for the time they were gone shopping (so no one would see).  They got back and got busy with the dinner preparations.  Nat kept traveling all over the house.   I started to feel bad that he had no social group this weekend, so no friends.  I wondered if he wanted to be with Max and his friends.  I wondered if he was sad being alone, on his house journey. I would have been.  I was.

(A tiny little thought flashes through my head right now, too little too late, but it says, “were Max and his friends gainfully occupied by playing video games all afternoon between snacking?  Is that better than what Nat was doing?  I think so because it is “social.”  But at least Nat was getting exercise.)

Max’s friend put out a plate of bacon, while they finished up setting the table.  The plates of fluffy yellow eggs were set at each place.  Nat was already sitting down, eating.  At that point, I should have told him to wait, but it never occurred to me.  I grabbed three pieces of bacon off the plate and gave them to him before we all sat down.  Because I wanted him to have “this little bit of joy, Poor Darling.”  Those were my feelings, the underlying ones.  Let Nat get away with not-so-great behavior because I feel sorry for him!  (I only realized this in the middle of the night last night).  Plus, what did Max think, seeing me just go and let Nat eat before everyone else?!  Did Max think, “oh, well, it’s what Nat does.”  Did his friends also accept it, because Nat is “different,” and so in a category by himself?

By trying to take care of Nat I think I was unfair to Max.  I think I was also unfair to Nat, by not treating him like everyone else.  Okay, okay.  Learn from it.  Next time, he waits his turn.  Next time, he helps and sets the table.  Think like Scarlett, tomorrow is another day.  And sure enough, it is.


let him have “this little bit of joy..” – I am so guilty of that too, changing the rules and expectations because I just want to see my daughter happy. (Or because I am being too lazy.) All the worse because I know in the long run it is just the cowards way out.

— added by Susan on Monday, April 19, 2010 at 7:18 am

Oh. Let’s just think of it as “human.” 🙂

— added by Susan Senator on Monday, April 19, 2010 at 8:22 am

Susan, we’re fed that “If you keep him busy all the time the autism will go away” guilt from the moment we get the first dx. You should do this, that, that and this and he’ll get better or atleast talk to you more or or or or….

I’m learning to live with the “you know… I’m just the Mom” part. I can’t keep him amused 24/7. Sorry, the tv, the nintendo, the… Will have to do it for me some of the time.

— added by farmwifetwo on Monday, April 19, 2010 at 8:35 am

Oh… and a saying from the new teacher… fingers crossed, 2 more weeks, 2 more weeks and we’ll know for certain…. We’re moving to spec ed… been pushing since the beginning of Dec to get him out of the school he’s in… It’s an AMAZING room with an AMAZING teacher in a school that integrates the children wherever they can.

“Everything is fair, doesn’t make it equal” is the mantra of the Developmental Class Teacher.

She’s right….

— added by farmwifetwo on Monday, April 19, 2010 at 8:39 am

Not having enough to do is the biggest problem with Henry, too. A self-entertaining deficit? In his case when he gets bored, his behavior gets very bad, aggressive and destructive. If he just roamed the house muttering to himself I think I’d be pretty happy….but it is all relative!
And I know just what you mean with that “Let him have this little bit of joy!” thinking.

— added by Nancy Bea on Monday, April 19, 2010 at 8:43 am

Susan our experiences as parents are so similar, boys the same age, doing the same things, and us parents thinking the same way you are not alone here! 🙂 all we can do is our best each day and you are doing a fantastic job!!

— added by Lewis Marcus on Monday, April 19, 2010 at 8:45 am

“like locusts.” ~ too funny.

— added by Timmy's mom on Monday, April 19, 2010 at 9:07 am

This is how I feel with our six year old, too. He wanders the house from couch to bed and I wonder what he would like to do. It’s hard to know. Wish I could get in his brain.
I value your insight SO MUCH!! Thank you!

— added by Stephanie McBride on Monday, April 19, 2010 at 9:32 am

Jared is obsessed with ANTZ right now – and some good things have come out of it. Remember, Jared sculpts out his favorite scenes in modeling clay, even if that’s the credits. He’ll spell out Dreamworks Pictures Presents a Pixar Animation Studio Film – and can spell these words without a visual prompt. I guess if you watch a movie a gazillion times, you can close your eyes and see the credits.

Anyhoo, Jared’s obsession is resulting in some tyranical behavior as well, and we have been using his beloved ANTZ to motivate the “helper” in him. Sometimes that works like clockwork, but yesterday, not so much.

I’m curious if other set a time limit for repetitive viewing of movies, etc. Temple Grandin supports a certain amount of repetitive behavior, but how much is too much, and what are the best ways to dial it back down to a reasonable level. Anyone, anyone? Susan? Beuller? Lisa

— added by lisa on Monday, April 19, 2010 at 10:42 am

Oh how this resonates with me Susan. Especially the ‘give him a little joy’ part. I find it hard not to. M misses out on so much and I know it’s not ‘right’ but you know what I am reminded of every time I do it? The ole saying that says ‘Fair isn’t everyone getting the same thing, fair is everyone getting what they need.’

— added by Penny on Monday, April 19, 2010 at 11:06 am

Love the similes.

Nat is social all week at the house. If it were me, I’d be happy of the chance for some non-social time on the weekend.

— added by VAB on Monday, April 19, 2010 at 11:35 am

I’ve been reading your blog for 2 years. This post hit me harder than any other. My son is 3 and I am constantly feeling guilty during those times of the day where we have nothing planned. My youngest is 2 months old so there are a lot of those times right now. The other day I asked myself is my time being better spent? I am straightening the house, doing laundry, and thinking about how many calories I’ve had that day. Same stuff different day and not so exciting either! It’s good to know I am not alone struggling with this issue.

— added by Kristen on Tuesday, April 20, 2010 at 11:17 am

I think if he was bored he would have asked for something… But you can try to make a schedule for the next visit and see how he reacts. Our kids have this “inertia” where they resist moving from one activity (or non-activity) to the other at someone else’s request. “No” sometimes is their knee-jerk answer.

— added by Leila on Tuesday, April 20, 2010 at 12:46 pm

Ah, the guilt. I often think if I could just rid myself of that, I could accomplish anything… Most days I can, juggling myself between the boys, chores, and therapy, but some days not. Loved the “little bit of joy” sentiment. I truly get it!

— added by kim mccafferty on Tuesday, April 20, 2010 at 2:31 pm

Oh Susan, once again this post really resonates with me. My six year old son has a hard time entertaining himself and it does tend to stress me out. He absolutely LOVES playing with grownups, and will giggle a bit with his sisters, but mostly asks for TV if nothing is being faciliated by a grownup. He jumps on the trampoline while watching his favorite shows, squealing with delight. He will do the house wandering thing and also in the backyard when TV is off. I do feel the guilt of having housework to do, two other kids to take care of. He thrives at school with his visual schedule and I do use one at home too, but SO wish he will become more independent with playing on his own. His ABA therapist is working on it and he is now up to doing puzzles for 10 minutes independently, very cool. The “little bit of joy” thing is so true with me, too. He works so hard in school and therapy every day I feel like he deserves a break. Learning to accept that it is okay for him to just veg out sometimes. Thanks Susan as always for writing about exactly how I am feeling!

— added by Katie Shinden on Wednesday, April 21, 2010 at 12:33 am

It’s always a hard call to make. Is “imposing” a schedule good, or not? I’ve worked with kids and adults with autism in school, in group homes, and in their own homes. For some, the visual schedule is calming and helps them structure their time and they enjoy slowly choosing activities and slowly working on them. Other kids blast through it really quickly to get it over with, like the whole thing is a task to finish, even when the activities are preferred. Some fight it at first and then enjoy the process. Some schedules are meant to be independent and others are just made to help people anticipate their day. Sometimes seeing what is coming up, even though you tell them, helps lessen what we see as “aimless wandering”.

— added by michele on Wednesday, April 21, 2010 at 7:45 am

As I read this from Susan I sit here in an empty house that’s quiet from noise, A quiet time to my self. I too have a hard time with my four year old not being entertained. I just asked my husband if he could take our full of energy son to the park. It’s been raining for two days and he hasn’t been out of the home. If I let him he will sit in front of the t.v and watch it all day. I can’t watch t.v all day with out getting depressed. A lot of children with autism have a hard time playing by them selves and a hard time playing with toys. So where does that leave the parents or siblings? I have five other children with Cody being the youngest, and I guess I have a little bit of a foot up because Codys older sibs are much older them him, I have educated them and they help out a lot with him. Someone during the day will take him for walks to our park or help him ride his bike (with training wheels) My sixteen year old daughter who is in drama and loves all disney shows, and will watch with Cody one of them. He loves it when she sings loud and dances to the music. Carrie my 13 year old is like a second mommy to him. She always ask if she can go to his Dr appt with me. IF I’m filling out one of those looong questioners yet one more time I ask Carrie her opinion and what she thinks about Cody. All his bros and sisters love Cody and care for him deeply. I have to say they have adjusted very well to him. when he is having a moment and throwing a tantrum or being very demanding it seems like someone has the patients and can help him out. Keeping Cody busy is very important to me. I do give him t.v time (maybe too much even) but going to the library for story time, to the parks, and all the activities in our community is very important to me. Thanks Susan for all your tips and sharing your feelings on your blog. I think most of us relate and need to here it from someone else.

— added by Amanda on Thursday, April 22, 2010 at 4:17 pm

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