Thursday, April 28, 2011

Max loves his routines. Do your kids?

The scene: Cold Stone Creamery, every time we go.
Dave: "Max, how many milk shakes do you want?"
We order one milk shake and ask the counterperson to put it into two cups. Max finishes 'em both off.

The scene: Max's room at bedtime.
Max climbs into bed and positions his little purple teddy bear (who is also named, coincidentally, Purple Spaghetti Max) just so on the pillow with the purple pillowcase. Then he carefully lies down to the right of him. On top of his purple comforter, never under it. Once he's asleep, I toss a blanket over him so he won't be chilly.

The scene: Our kitchen.
Max has been keeping a purple Halloween bucket at his place at the table. He snatched it from my friend Betsy's house this weekend. This happens often when we go to people's homes: Max finds something purple, and our hosts inevitably let him have it when I explain his love for all things purple. Just wait, one of these days we'll visit someone who has, like, a purple armoire and Max will expect to take it home. Anyway, after each meal Max walks back to his spot at the table and positions the bucket just so, at the edge of the table and parallel to his chair. He adjusts—a little to the left, a little to the right, back to the left—then walks away. Unless Sabrina runs over and shoves the bucket, just to be charming, at which point much screeching ensues.

The scene: Our playroom.
Max asks me to prop up a mirror against a big chest where we keep toys. Then he grabs a purple firetruck and runs it back and forth and back and forth in front of the mirror. He can sit there for thirty minutes, if I let him, and do just that. Sometimes, I let him.

The scene: Our driveway, whenever we've come home from somewhere.
Sabrina and I go in the back door. Max and Dave go around the front door. Max rings the doorbell.
"Who is it?" I say.
"Ur-ul Ah-eh-hee Ax!" says Purple Spaghetti Max.
I open the door. "Purple Spaghetti Max, how nice to see you!"
Max cracks up, every single time.

It used to be that Max just enjoyed repeating phrases, especially ones involving purple and his name. Lately, he's very into routines. I am glad they make him happy and content. At the same time, I wonder if I should be pushing him to break out of them—to flex his brain cells, to keep expanding his mind.

For now, though, he's got his set ways of doing things, and all is good in Max's world.

Do your kids have their special routines, too?


  1. um...I am not sure if this is going to make you happy or make you crazy. At 27, I still have routines, and I can't stand if they are messed up. Some of them drive my family insane, but I think maybe its just a control thing, because people with CP have such a lack of control over a lot of things.

  2. Actually, that is REALLY helpful to know, especially since Max isn't yet able to explain it to me! His neuro has mentioned routines are comforting, which I can understand, but I never looked at it from the p.o.v. of wanting routine because so many other things are out of control. That makes perfect sense. Thank you, Angela.

  3. My Nathaniel (age 7), who does not have CP, also is extremely OCD. He has routines for everything, and when I think back, he started several little things like hand flapping and bouncing on the couch, and laying out pencils in a row, when he was very little. I tried switching him out of it, in those days when I had time, but low and behold, he would go back to the behavior. He still bounces on the couch, which I know is a sensory issue. Now, he also has routines for everything he can---in the store, at the library, at home, in the car, etc. His genetic syndrome alerts him to hunger frequently, so I think some of it is the control issue too. But, autism also runs in our family...I would love to hear some ideas myself!:-)

  4. I have just found your blog and I like it very much, thank you for sharing your story :) I read the story about Max and have give birth not long ago, I was very touched. My baby is four months old so he has no routines of his own. From my professional point of view I would agree with Angela and I would like to add that in order for Max to be able to expand as much as he can, he will need his routines to create a safe space for himself. In that way he will know that some things are the way he wants them to be and can perhaps explore things that are new for him. I think it is useful to think of children like Max like you think of yourself, only they have a lower threshold for change. I know I wouldn't be able to function if every day I woke up my husband would had rearranged the furniture or put the kettle in a new place so I couldn't find it. Nor would I enjoy having to work with new people in a new place every day or not be allowed to choose my own clothes. Children like Max have the same thing, only their threshold is much lower, so what might seem silly and unneccesary to us is very important for them. Obviously, if it interfers too much with a "normal" life, one will have to work on it. But that goes for everybody.

  5. Have you ever considered writing a children's book starring Purple Spaghetti Max? He seems like such a fun guy. I especially love your coming home routine where you go through the back door and he goes through the front. It really seems like it would be a great book to help families learn about special needs kids.

  6. Ashley has many routines - mostly around eating (tea-towel on a cushion on his lap), bed time (kiss Big Ted, toy car in each hand, door ajar 'til he nods off), me coming home ("Cuggles!").
    But like others I have "essential" routines - pots must drain properly, pictures must hang straight, getting ready in the morning in the same order, and agreed times MUST be kept to even if the outcome is unimportant. I think it's just a need for structure but I did score high in an autism test last year ....

  7. I tried to tell you this yesterday, but it wouldn't let me post--blogger was demanding that I sign up to make a blog--I really am starting to hate google and all the data-mining that goes on on the internet.

    Anyway, PURPLE ultra soft foam ear plugs (and orange ones--forty of each color) for under seventeen bucks at Amazon. Serious purple, too--might be the ticket.

  8. Oh, we didn't always have routines, but we do now, and it really is helpful in giving an ebb and flow to the day.

  9. HI Max
    My name is Jenna and I came across your blog. U are an amazing inspiration and a cute kid. We both have two things in common, that is the Color Purple! I love Purple anything and purple everything. I have disabilities too and health issues.
    My site:

  10. that's THE question, i think. M has a lot of routines and a huge tantrum almost always ensues if there is a change to them. example: M's favorite aide at school lets him use the back door to go to the car at the end of the morning because it's easier on me. A new aide didn't know and even when I explained he's always allowed to use that exist, insisted M use the front door with the other kids. He laid down on the floor screaming till she changed her mind.

    M's therapists say that the routines are comforting to him, but can also be maladaptive because life isn't always predictable. I prepare him for changes when I can, and I think over time we'll try to phase out some of his routines but keep ones that aren't problematic.

  11. Welcome, Jenna! I'm not going to tell Max that you like purple too because he thinks he is the only person in the world who likes purple. So we'll just keep that between ourselves. I have actually considered writing a children's book, Purple Spaghetti Max! I have, at various times in Max's history, also considered Purple Car Wash Max and the original, Purple Max.

    Welcome, also, Brave New Life (I like that name), and thanks for the wise words.

    Felicia: Purple ear foam plugs purchased! Anyone want the orange ones?!

  12. I just loved this; what a sweetheart. I see no harm in it, as long as he doesn't become so rigid about things that it interferes with his getting about in the world. We all have routines that give us comfort.

  13. Ellen--save the orange ones for business trips on planes--you can lie to that obnoxious seatmate and say you have tinnitis or something and need to put the plugs in otherwise you will suffer. Makes it easier than having to pretend to sleep!!!!! OR, if Max is reluctant to try them, you can say orange is your favorite color and pop 'em in--the old Monkey See, Monkey Do/Tom Sawyer Painting the Fence trick!

    Good luck--hope they help! Let us know!

  14. Soemtimes, 12 isn't too hide bound by routines but they do make her happier. She gets in to ruts of liking something, she groups certain toys together so that she has to have all of the ones in the group when she decides to play with them, if one/some are missing there can be war.

  15. Purple is the new cerebral palsy awareness color. :D Maybe that's the message Max wants to spread for all to see?


Thanks for sharing!

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