Autism: Making new rules


As soon as autism joined our story almost two years ago now, we were given gobs of information and a smattering of tools of how to help P cope with transitions, sensory issues, and tending to the task.  We perused the info making sense of what it all meant for P.  I was amazed at the tools that were given and asked to try out in our home.  The first thing we were taught was using first/then statements.  First, we will play on the swingset.  Then, we will play in the sandbox.  We were given handouts about using calm down choices for when P would be overwhelmed.  Then we were asked if knew what fidgets were and not surprised at all yes we did know all about fidgets.  Had we considered adding a sensory diet for P?  Here is information about meltdowns vs. tantrums.  It was fantastic at how fast the data was thrown at us.  We devoured that information and tools to make them our own integrating them into our daily lives.

The first/then statements have been a mainstay in our house for quite some time.  It sets clear expectations for P to follow.   We all use them in our house without even thinking about it anymore.   There are times I use first/then statements with my dog.   First, go outside.  Then, treat.  Clear expectations, right?  It has taken months to work out calm down choices and integrate a sensory diet into P’s day.  We have had excellent therapists guiding us along the way.  He definitely likes legos or matchbox cars as his go-to calm down choice.  Our house knows when 28 matchbox cars are lined up side by side that P is needing some calm down time.  I carry fidgets with me in my pockets, in my purse, and in the car.  It is just another thought that is second nature.

Now, as P is getting older.  He does like to remind me, “I’m 11 now.  I’m not a child.  I’m a tween.”  Lord help me and Jesus take the wheel for a moment!  I have a teen and tween in the house.  The tween has been rejecting all these neatly packaged tools that we thought would be sticking around for the foreseeable future.  The first time he rejected all the calm down choices–music, the weighted blanket and, lighted fidget toys I thought that was weird. Then it happened in therapy.  He told the therapist he didn’t like his choices and he was done.  First/then was thrown out the door.  There was no compromising that day in therapy.  He had an idea of how it should go and when it didn’t the only choice was to be done.  Since then P has been vocal about his opinions of what is OK and what is not.  He starts with, “Now that I’m 11, I ________.  Fill in the blank with all new rules of what I won’t or can’t do this.  

That’s the hard part with autism just when we feel like we got it all figured out with a great system of support in place, it changes.  I respect that P is growing up and changing.  I love that he feels strong and empowered to use his voice to say, “This is not OK.  I do not like this.”  However, mom has been left in the in the dark on all these new changes.  The changing opinions that are new each week.  New behaviors that have popped up.  It is uncertain if what we used prior still works today.   I have been expected to know whether behaviors will be problematic.   If the calm down strategies are not acceptable, what is appropriate to use this week?  Add in there sleep patterns that are thrown off.  It is enough to make a person crack.  I want to help P make sense of the changes; however, he is forging his own path.  I have to respect what he is telling me and then relay those messages to others who see P each week.

This autism life certainly doesn’t get easier.  Each phase definitely has its ups and down.  I’m thankful  P is learning, growing, experimenting with new opinions.  He still struggles with transitions and tending to the task.  Oh, boy! Did P made it ever clear that schedules and first/then are no longer what he needs in his life!  We are currently looking at revamping and rewording some of these statements that we have used in our house for years for a more age-appropriate audience.  Some habits are hard to break, so I hope that the dog doesn’t mind an occasional “Fist, go outside.  Then, treat!”

All my best to you,




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