Dear Addie,
There you sit. Jammies on, ready for bed, at the head of the table. The smell of citrus fills the air, and you are meticulously peeling your orange, sucking the juice out of each slice and then discarding them back on the table, creating a pile of dehydrated pulp in front of you. A scene we’ve become familiar with, for this has taken place every night for sometime now. You take your nighttime meds, and sit down for a little fine motor therapy and a sip of orange juice (sans cup) straight from the fruit. And while it has been this way for awhile now, it still seems to be a blur to me of when it all began. But this orange pile scene is only one of many daily routines (or orange piles) that you have created entirely on your own.
You see Addie, with no crystal ball, our life has been sprinkled with so much more than we thought it would be. Of course there’s endless amounts of joy, laughter, love and teamwork in our family, but there is also 3 words that stick out having been on this journey for a minute now - routine, compulsion, and structure. These 3 things can equally cause as much anxiety for you (and us) as they do calm.
Addie I personally don’t have autism - so this is just my perspective from what I see with you sweet girl...
Allow me to explain. When you have autism, living in a world of spontaneity can leave you with a good amount of anxiety. For example, most autistic individuals like yourself have a number of sensory challenges - loud noises, unexpected tastes, places or changes can leave you tense and on your toes almost as if you’re waiting for the boogie man to jump out of the closet! Your heart may start to race and it’s safe to say it’s no fun for you at all. Can you say “fight or flight?” This is probably why your safe place is your bedroom where you can control your surroundings - no boogie man there! But you are very smart Addie so I believe you create a series of routines to keep your life as predictable as possible - you know, to avoid any boogie men in the closets ;). Routines are great and they keep life moving along with ease (most of the time), but sometimes they can get to a point of becoming compulsive and then that calm you tried to create is doing the exact opposite and you’re all of a sudden throwing yourself into a tailspin! Like if we run out of oranges - insert a heart racing, meltdown. Yikes!
I may or may not have phoned a friend to borrow an orange on occasion to keep the calm around here. You my dear have routines for everything from greeting dad when he gets home from work with a scripted vocabulary lesson he has to repeat back to you, to riding in the van with a series of particularly stacked toys and objects, to even lifting the toilet seat 3x’s saying “oh yeah” before actually using it - that last one makes me giggle every time :). The thing is, you have created all of these orange piles, among our structured routine and to us there’s no telling how long they will stay or when a new one will be added to the mix. Keeps mama and daddy on our toes, but it is also up to us to help guide you through when they are becoming to much for you. That “exposure is key” theory is related not only to environmental social outings but also to pushing outside your comfort zone when routines become consuming. So as you sit sucking back your oranges, I want you to know that it's OK, everyone has their own pile of oranges Addie and we are here for you with every pile of dehydrated pulp you leave behind.
We love you baby girl. Mom
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