Monday, June 15, 2009


My son is reading, "Rules", by Cynthia Lord. My older daughter read it a year or two ago, and I read it when she did. "Rules," is fiction written from the perspective of Catherine, an NT sibling of a boy on the autism spectrum.

NT = neurotypical. NT is a term that those of us who are touched by autism use to describe individuals who are typically developing and/or are not autistic.

Because her brother David does not understand many of the unspoken communication that the rest of us take for granted, Catherine gives David rules to help him understand what to do or what not to do in specific situations. "If the bathroom door is closed, knock!"

"Rules" is a great book, especially for siblings of individuals with autism.

"Rules" got me thinking about my own rules. I have a few:

One of my own rules is that generally, I don't read other product reviews until I've written my own review for that product.

I do not drive to a therapy where the drive time is longer than the actual time in therapy. Parents of children on the autism spectrum could spend every day, all day long, in a vehicle and a waiting room, while the child w/ ASD is in some therapy. Don't get me wrong, I would not withhold a medically necessary treatment. But I'd rather interact at home with professionals who support me at home instead of spending my days driving from therapy to therapy and waiting room to waiting room.

Whenever possible, I avoid making siblings to spend a lot of time in waiting rooms while the sister on the autism spectrum is in a therapy. (Sometimes their waiting is unavoidable, but I do try.)

In helping another family new to a diagnosis of autism, never do more work than the other parent is willing to do. I am often asked to talk to a family member of a friend (or a friend of a friend) about autism. I'm happy to mentor a newbie through the GFCF diet or manage the maze of therapies and options out there, but I will not "cold call" the friend or gather a bunch of information to give to someone who hasn't directly asked me for it.

I try not to let the fuel gauge on my van drop below half a tank. (I have several reasons for this. When we lived in Los Angeles, twice I was caught on "E" and had trouble buying gas -- once, during the Northridge quake and once in the riots that followed the trial of the police officers who beat Rodney King, and in the midwest, during the four-day blackout caused by a grid failure, I was also on "E", not having enough gas to get to a gas station to drive me and my kids to a town with power. You'd think I'd have learned my lesson in Los Angeles! Additionally, in the midwest, in near-zero temps with snow, filling that half-tank is quicker and means I don't have to be outside in the elements as long!)

What are some of your rules?


PaintCrazy said...

Good rules!

We have one about eating dinner together as a family as often as possible WITHOUT any distractions. TV off, phones off, ignore door knocks, etc. It's amazing that all four of us can be in the house almost all day together and never actually BE all together at one time!

Anne said...

You were in L.A. then too, huh? Good times.

I have rules, but right now they're mostly about remembering balance. We've had the Autism diagnosis living in our house for a year now. Our older son was diagnosed in the Spring of fifth grade, and then our 2 year old (now 3) was diagnosed last Fall.

So, I'm forcing myself not to fall into the the Pit of Autism where it becomes everything I think about. I think it'll eat me alive if I don't.

Tristan said...

I have learned to say yes to the help people offer after I've had a baby, especially when they are willing to clean my house. And I've learned to say no to people who think just because I homeschool I can babysit or run errands all day for them. :)

Prince Andrew and the Queen Mum said...

i have a new rule to block any feed on my facebook that is ticking me off...or raising my anxiety. Sometimes i can 'process' things better and spend time learning about various woes of the world and of autism..and other times I can not. It is during those times I just block, hit delete etc..

i have another new rule to learn to say 'pass the bean dip' to others who say things that they may not even realize is not helpful/ hurtful. I do this w/ a clear conscience and soft heart and wish people would tell me to 'pass the bean dip' instead of blowing me off or getting mad at me.

Like Anne I am working on balance... and there are many rules i have regarding that.. maybe i shall blog

Stephanie said...

I have a rule that if I see a topic on my other forums that I know will make me angry, I will avoid it. If it's on a group I moderate I will ask another person to look at it so that my personal views do not inhibit making sure the rules are followed.
I also have a rule that while reading about something regarding Thing 1's behavior, I will stop if I started to get upset about it and then restart again after having a heartfelt discussion with my husband to reflect on what upset me.

April E. said...

That "knock if the door is shut" rule works best if the people inside the bathroom actually answer. We have one DD who refuses to answer when we knock ... even if we talk to her. Usually just as I'm about to open the door anyway, she'll flush and we know she's in there. Drives us all crazy ... and she's NOT a little one.

Catherine said...

Hi Penny,
I like your first rule, and it's fair advice I think.

Okay, a couple of rules we have:
- make sure your drink bottle is full and in your hand before you leave the house.
- no food in bedrooms.
- don't run to answer the phone; let the answering machine get it. Now, I had to do this as we get so many 'sales' calls and we spent most of our days running to the phone and wasting time rather than enjoying schooling. My friends all know to leave a message. If I'm free, I pick up. :)

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