Our Family

Our Family

Friday, April 8, 2011

The Behaviors

First of all, I'm going to start off by saying that Amanda is not a brat.  She is not out of control, and I do discipline her.  She is autistic.  Her behaviors are strange to those who don't understand autism, but to us, they're just our Amanda.

The Meltdowns
This is the big one, so I'll start with it.  This is the behavior that most people see as the most bothersome. This is the one that labels our children as out of control brats, and us a lousy parents.  It's a fact.  Autistic children have meltdowns.  They can be triggered by just the smallest thing.  To us, it's the smallest thing, to them, it's HUGE!  How would you feel if what you were trying to communicate was not being understood by the person you were communicating with.  Actually, if you think back, we have all experienced this.  Trying to talk to that hard-headed person who just does not understand you.  It's very frustrating!  To us, this happens once in a while.  To an autistic child, it happens every day. 
Meltdown triggers can come on quickly and mysteriously.  Before I understood sensory issues, I never understood why Amanda would have a meltdown any time we went to the mall, or to a larger department store.  For her, it was the large space.  It was just too much for her to comprehend, and the large space, with the bright lights, and all the people, was too much.  So she'd meltdown.   Right there in the mall, the store, the parking lot, wherever she had hit her limit.  She could scream, cry, hit, kick, bite, and throw herself down.  Once you're around it enough, you can definitely tell the difference between a true autistic meltdown and a temper tantrum.  I have four kids, so I've seen  a lot of both.
I never let the possibility of a meltdown stop us from going out into public, or introducing Amanda to new things.  She was autistic, and the world was not going to change.  The world also needed to know that she could not change either.  But she could learn to adapt.  The only way to teach them how to adapt is to throw them into the situations.  So I did.  It was hard.  It sucked.  It was embarrassing, but we did it.  One time, she was probably about 4 and decided JC Penney looked like a great place for a meltdown, so she had one.  Let me address that what I was taught to calm her down can look really really bad.  We call it "the hug".  You get behind them, take their arms, cross them in front of their body, hold them in that position as tight as you can, and get them to the ground if they haven't already thrown themselves there.  So at Penney's she was in the midst of a meltdown, and I was attempting to get the hug around her.  Some old bat walks by and murmured that I needed to control my child.  It had been a trying day, and I had had enough.  I looked at her and said "Do you have an autistic child?  No, I didn't think so.  So until you have to deal with one, then and only then can you form an opinion on what I should do, and you'll know enough to keep your mouth shut!"  She turned white as a ghost and promptly walked away.  I thought it was funny, and I felt good.  Dan looks at me and just says "Jodi".  I get that a lot from him.
One other time, I was with Amanda at a store.  She wanted a balloon.  I was going to get her a balloon, but they were by the cash register and we were in line and I simply could not reach one yet.  Patience is not a virtue for autistic children.  She wanted one now and screamed.  The cashier actually stopped what she was ringing up and stared at me.  This could be fun.  I told her I'd get one as soon as I could reach one.  She screamed again.  The cashier stopped AGAIN and looked at me.  You know, if she would have just kept ringing up the items, I would have gotten to the balloon and Amanda would not have screamed again.  And I told her that when I got to the register.  Idiot.

Routines
In an autistic mind, things are much simpler when done the same way, at the same time, every day.  This is not always realistic in my house, so Amanda had to adapt to the fact that although the routine through the week is the same, especially in the morning, the weekends are free for alls.  This works for us.  I'm not implying it will work for everyone.  When we would get ready to go out, I would tell her where we were going, what we were going to do when we got there, and about how long we'd be gone.  If I got in the car and noticed that I needed gas, and that was not in the plan and we stopped at a gas station, a meltdown would ensue.  Her weekly routine is now and has been for years, up at 7:20, get dressed, breakfast of Rice Crispies, a glass of milk, brush her teeth, comb her hair, get her shoes on, put on her jacket, and wait for the van.  In that order.  Same thing.  Every day.  She does not like it when the van runs a little early, or a little late, but she has adapted.  She gets home around 3:10, does her homework.  She has free time for a couple hours that she does whatever she wants to do, which is usually watching YouTube on the computer.  She'll go back and forth between The Annoying Orange and music.  We have dinner, and right after dinner is her shower.  Bed time is between 8:30 and 9 depending on how tired she is.  When she was younger the routines were much stricter.  Now that she's older, it is much easier.

Obsessions
Obsessions can be of anything they want it to be.  No rhyme or reason.  They'll find something to fixate on and do it.  When Amanda was a toddler, her obsessions were a pop-top.  You know the things that are in a plastic dome that you push the top down and the balls inside go around.  She would play with that forever.  TV shows such as Rugrats, Little Bear were always on hand for her to watch.  She loved numbers, and for a while, any shirt she had, had to have a number on it.  Music has always been and still is a strong obsession.  She loves music.  For the most part, it's very soothing to her.  We've gone through High School Musical, Blues Clues, and the current one is The Annoying Orange.  That's a fun one.  LOL

Stemming
Self stimulation, or stemming is common among most autistic kids.  Happy hands, rocking, clapping, hands going into her mouth, constantly stroking her hair, and twisting her hair.  These are Amanda's stems.  The most often is the rocking.  I found out the rocking is related to her sensory issues.  When she's standing up she's rocking as to reassure herself the floor is beneath her.  If she doesn't do that, she can't feel it.  Same thing when she's sitting.

Sensory
Senses can be overloaded or understimulated.  Amanda's sensory issues are primarily  her hearing.  She can hear a pin drop!  Loud noises are terrifying to her.  Fire drills and tornado drills horrify her.  Sometimes in the shower, if the pressure drops the shower head will squeak.  This drives her crazy.  Her pain tolerance is extremely high.  Scary high.  She got stung twice by a yellow jacket and she plucked the bee off of her and just said ouch.  Big places were once a huge issue for her.  Not so much anymore.  We noticed that Amanda would always clean her plate, and sometimes get sick after eating.  She simply did not know when she was full, so we had to teach her portion control.  The reason she was so delayed in potty training was that the feeling you have when you have to go was so minute to her that she just didn't know she had to go until it was too late.  This caused trouble with consitpation as well.  I had to use enemas with her a lot just to get her to go.  That was fun.

Motor skill delays
As I mentioned earlier, Amanda has issues with milestones.  Her fine and gross motor skills are functional, but awkward.  Her handwriting is awful because of her fine motor skills.  All her bottoms are elastic waisted because buttons and zippers prove to be so difficult for her. She can brush her teeth well, but that took tons of practice.  Her walking is very heavy footed, and when she runs, her gait is very wide and awkward.  For a long time, she could not cross midline.  This means that taking her right hand and moving it to the left side of her body was very difficult.  I notice that she still won't do it unless absolutely necessary like when putting on her shoes.

I'm sure I've forgotten some, and if they come to me later I will add them.  Please keep in mind that these are Amanda's experiences.  Autism is a spectrum, and no two people are affected the same way.  This is Amanda's autism and I'm sure does not apply to everyone out there.

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