What Is “Appropriate”

I got into a conversation with someone yesterday over the fact that my 9yr old boy, Steve chose a giant stuffed turtle to spend his money on as his a “trinket” if you will from our vacation. 

“I am really surprised by this” this person said to me. 

This made me think. This made me realize just HOW MUCH people don’t know about kids with autism and I keep hearing things like age appropriateness. 

From my perspective, there is no such thing as AGE appropriateness. For my son, in his life, (and to be honest I think every kid in everyone’s life if you REALLY stop to think about it) what is developmentally appropriate carries far more significance. 

You see, again from MY perspective, children I have met with autism including my son, they don’t necessarily develop in ORDER. 

Childhood, the way people generally look at it, looks something like this:

A leads to B leads to C leads to D and on and on…

Children hold up their head before they roll over. They roll over before they sit up, they sit up before they stand for example.

For my son, A maybe leads to D then to T then to G and he may never EVER see C in his life 

THIS IS AUTISM

He sometimes gets stuck at a stage for a long time. Then sometimes he jumps two, three of 4 stages, then often times go back to another stage over again. 

So the fact that he felt the best reflection of his trip was a giant stuffed turtle that seemingly to you and me means nothing regarding the trip, it means something to him. He knows exactly where “George the Turtle” came from. What city we were in, what we were doing when he found him and what other adventure George then took with us for the rest of our vacation. I was even asked to “give George a bath because he’s been a lot of places, touched a lot of things, and probably has some germs on him.”

I’d say he gets it… so why the hell do YOU care that its a stuffed turtle?

 

~me

The Books

I am always taken aback with people (including family) who always say “But Steve doesn’t LOOK autistic.” Or worse… “Steve looks so normal.”

Well to all of you people who have said this to me over the past nine and half years of his lie……. where the hell were you the night before we left for our vacation?

Let me paint the picture for you. 

Steve, having just been given a new dose of meds, has been terrific. Compliance is at a much higher rate. His appetite is down but that always happens for a minute on new meds. He just seems so much happier. He was even looking forward to vacation for spring break. 

He had been primed for days that we were going to have to be up at 5AM the morning we leave. That in and of itself would be a challenging experience. He seemed fine with it. Packed everything throughout the day when asked even pausing his video game to get the next thing he needed for his suitcase. Then here were all… all packed, all done, all ready for bed. Its 9pm. Steve lays in bed, says good night and I’m breathing.. wow… maybe this is going to be ok. 

 

Yeah….. I shoulda known better than to say that. 

Steve after laying there for an hour then comes RUNNING out of his room. “MOM” “MOM” “MOM” “MOM”… “Yes, Steve.” He literally tears around the room… he takes every book off the first set of shelves then the next set of shelves. “Steve, wait!, what are you doing????” – “Mom we can’t leave without my books!” 

Ok… so while he is tearing around and making a MESS out of the living room I just spent an hour picking up so we would come home to a nice put together home…. I have to stop and breath and figure out HOW am I going to get out of having to take literally 150-200 books on vacation with us. 

 

So, here we are now at 9:45pm and Steve is trying to stuff ALL the books into one small bookbag. I finally slow him down and get him to stop. Holding him in my lap arms tight around him, I break the trans. 

“Steve… do you need ALL these books in the next two days?”

“How do I know?”

“Steve, could we please pick 5 books only? We are only going to be gone 3 days and we will be very busy.” 

“Five isn’t enough, I need more.”

Steve then spends another 30 minutes separating and organizing his books. Plants Vs Zombies in this pile, Captain Underpants in that pile, and so it goes. He simply can’t move forward without sense of it all. 

I finally agree that he can take Plants and Captain books. He agrees that those are ok. While that sounds simple enough… being autistic it doesn’t end there. He then must put each set in numerical order to be sure he has them all. Each and every one must be in perfect order and facing the correct direction. OK. Its now 10:30pm and Im freaking out… OMG I have to wake him up at 5. This is soooo not going to go well. 

Enough is enough… “Steve, yes, You can take ALL  the books in those TWO sets only as long as they all fit in this ONE book bag.”

He agrees… He packed, they fit (Thank you God) and then he tried to wear the backpack and it pulled him over. He starts laughing, now in THE BEST mood ever…. “Ha, who knew books were so heavy.”

He took off his backpack and ran back to bed and fell straight to sleep. 

For the record…. he read 3 of the 18 books that made it into the backpack. 

 

We won’t talk on this post about what 5am looked like. 

 

~me