Tuesday, January 24, 2012

Dear Crossing Guard

Thank you ever so much for your take on the situation dear Crossing Guard.  Your opinion is very valuable in our current state of mind.  With your keen observation, have you not noticed that almost every day after school he doesn't want to get in the car?  It was only today you noticed?  Wow.  So, the school nurse, teacher, aide or days that the principal has escorted us to the car...you didn't see?  Only today you decide to walk closer to my car while I am trying to get him to go in, unforcefully mind you.  After he gets in you geniously ask the million dollar question.  "Why do you think he doesn't want to get in the car?  You would think he would not want to go in the school in the morning."  Again, you are ever so observant.  Genious, he doesn't want to go into the school in the morning either.  His anxiety levels are through the roof in the AM as well as the PM because of school.  As for him causing such a fuss after school?  Well, that happens when he has had an awful day at school.  When he sees me, all of his anger and frustration comes out on me because I am his safe haven.  So, knower of all, if you knew the entire situation, which you do not, maybe you would back off and be more understanding of our after school situation.  If you feel the need to report me for anything, go right ahead.  It's not like the school has no idea of what autism is..... like you.  Please share with us all your knowledge on autism.  Oh, did you even hear that word before?  If you didn't, look it up or ask me about it.  Don't judge the situation on what a typical kid may act like.  Our situation is far from typical.  Please do what you do best....take your little stop sign and help kids cross the road.  I'll worry about my son.  Thank you every so much.

Seasoned BSC Picker

It's time again to say goodbye to another Behavior Specialist Consultant (BSC) Miss K.  We've had her for a few months now but hours have change and it's time to go through the process again.  What process?  The waiting, meeting, updating, pairing and changing process.  Aahhh, let me explain.

We have to wait for the phone call on who our new BSC will be.  This has to be someone who can work with our hours because there are so many activities in this household to work around.  Also, we particularly need a person who specializes in school situations because of our lovely school district.  We have also learned that the person must be young, pretty and not smelly, in a good way or the bad way.  Preferably they should have long hair and be thin.  Miss L. had long brown hair, Miss S. had long strawberry blonde hair and Miss K. had long blonde hair.  Not my standards, my son's.  He loves women. 

Then after the initial phone call, we get to meet her.  I say her because we have only had females.  I think my son would totally respond to a male and would LOVE it but there simply aren't many males who work in this field.  How exciting when a strange car pulls up in front of your house.  Usually within seconds you can tell if this new person is going to fit in with your family.  We have had great luck with this.  Our last 3 have been wonderful in their own way.  Then they walk up the walkway and in the front door.  Will he be interested in her or run away?  I try to read his body language to get a feel.

The agony of updating the new person with every single piece of information you have on your son's therapies, school, actions, reactions, ect.  He knows the routine by now.  This is the part where Mommy would give the new BSC the dirt.  He tries to stop this by getting in between us, putting his hands out to the sides and yelling, "STOP!"  I have learned to try to take them somewhere else so he doesn't overhear it. 


Fleeing Yet Again
I can't tell you how many times I have said, "He will run if you give him the chance so always hold his hand and keep your eyes on him."  He still gets away from them. 

Its funny watching the new person try to 'pair' up with him because he knows the routine so well.  Good luck tricking him.  FYI - a trip to the dollar store for 'trinkets' does not work with him.  He's a seasoned BSC picker.  I can only do so much.  Forcing him to like someone doesn't work.  They have to pull out the magic for this to work.  Hopefully it does, because the next part is where it can all fall apart.

Changing his routines and comfort levels is always a challenge.  He is a manipulator.  He knows how far he can go and when to extremely embarrass you so he gets his own way.   He sees new charts and will refuse to work.   He's not dumb...he's extremely intelligent...he has autism.  Always assume intellect.  Just hoping the new BSC sees that like Miss L., Miss S., and Miss K. did. 

Friday, January 20, 2012

I Do Have My Crap Together...Really.

Some days I can't think.  Really.  My brain stops working.  There is so much going on that I can't focus on anything.  Have you ever needed something at the bottom of the stairs and by the time you are at the top...you have NO IDEA what you went upstairs for?  It happens to me all the time.  I don't think I'm losing it....but am I?

For example, on Wednesday a mom asked me a simple question, don't ask me what it was because I have no idea, and with multiple interruptions, I actually had no idea where I was going with the answer.  You would think I'd be able to handle one little question with ease but no.  Why?  My son was bouncing off the walls and I was trying to calm him down.  While this was happening there seemed to be mass chaos all around me.  Bright yellow walls, loud talking, my son jumping from the bench to the ground, running from one end of the room to the other, throwing his Angry Birds, other little ones grabbing and throwing Angry Birds and moms who were trying to ignore but couldn't because YOU CAN'T!! 

I also must sound like a complete idiot when people ask me about doctors and therapies.  My conversations usually sound something like this:

"Where does he go for therapy?"

"To, ah, Good, stop please, Shepherd."

"Which one?"

"The one downtown, on, ah, that street, please stop, across, you have 5 more minutes until your treat, that bridge?"

"Oh, on 5th Street.  What is OT therapy anyway?"

"Occupational Therapy.  They do stuff, stay here please, with him like sensory, gross and fine motor.  Please stop.  Mommy's trying to talk.  Just sit down.  I'm going to put the Angry Birds away.  NO Mama!!"

I'm sure you can relate.  Someday I will be able to properly speak again but for now if you want to talk with me you will continue to get fragments and you'll have to help me piece them together.  Much like a puzzle.  A big giant puzzle. 

I think it's because I'm on overload most of the time.  Not only do I have to get myself ready but my daughter and my son and of course, my husband will add in, "Do you know where my shoes are?"  Seriously?  Your shoes.  I just got 3 people ready and you don't know where your shoes are?  Come on now.  You know what I'm talking about. 

So, next time you are trying to talk with an autism mom who looks frazzled, she probably is.  No need to help just be understanding.  She may sound like she's a ditz but she really has her crap together.  Well, most of the time anyway. 

Tuesday, January 17, 2012

School Days

I hear it.  I see it.  You don't even have to try to find the words to tell me what you're feeling.  I know.  Your stomach is turning.  Your eyes are looking downward.  Your hands are grabbing and twisting your hair as you start to rock back and forth with straight, robot like legs.  I know you want to tell me what is going on.  I know you are trying your best to find words, any words to tell me. I'm trying my best to read you and fix the situation at school. 

Most people want to be different and stand out but you want to fit in.  You want to be like everyone else.    You want to visually see things like us but you see things differently.  I am not able to physically see what you are seeing.  I can only imagine.  You want to speak like everyone else and not have to hear others say, "What was that?  Can you say that again?" or be dismissed because they can't understand your words.  I know you are distracted by smells and sounds that not everyone else can smell or hear.  Your sensory feedback is debilitating at times.  I get that when there is too much going on you need to be 'buried' under your stuffed animals in order to feel normal again.  It took me a while but I'm getting it. 

You are frustrated because things aren't easy.  I am frustrated because I feel like others don't want to listen and fix things for you.  Mommy has left messages and sent e-mails to people who can change things and make it better for you....they just aren't getting back as quickly as we'd like. 

I'm so sorry that things will not be fixed by tomorrow morning and you have to experience this again.  Please know that I am working on it.  I spend my waking hours trying to help you.  I spend my sleepless nights going over everything that happened that last day and what will happen the next.  You are different and you do stand out but I will try my best to get you what you want.  To fit in and be like everyone else in that classroom. 

Thursday, January 12, 2012

A 'Special' Day with a 'Typical' Kid

The day was perfect. The day was peaceful, easy and surprisingly perfect. A snapshot tells it all. A snapshot of a special day with a typical kid. What was it about this day that made it stand out and pops back in my head when things get difficult? 

We hoped in the car and took off on a day trip to get out of the house and away from stimming and our 'norm'.   After the 50 minute drive we ascended down to the gorge to our destination.

"Train!"

 "Yes, would you like to ride the train?"

"Yes!"

 We purchased our ticket but couldn't board right away...will it happen now? The screaming then laying down in a tantrum with all to see?   No.   So we took a chance and walked through town.   He was hungry so we stopped in a pizza place to chow down. The service was slow...now?  No.   We strolled back through town and entered the train.

Relaxing while Waiting
What is it about trains that our kids love? Running his hands over the red velvet seats, he finally picked out where he was to relax. Looking around he seemed to drown out all the noise and continued to look out the window. The train starts. The initial jerk of the train puts a smile on his face. Soon we were on our way. Still taking in the sights, he sinks back into the red velvet seat seemingly absorbing all the trains' movement. After a while, it's time to move the train's engine to the end of the train and head back. Still, no verbal stimming or sensory seeking.  I look around and realize no one knows his secret. We head back to where we began our afternoon journey, still with no incidents. The train jerks again but this time it's time to get off. As he steps off the train, he looks at me and says, "Thanks mama. Time to go home."   So we do.

Friday, January 6, 2012

Dear Son, Happy Birthday.

Dear Son,

Your name means smart, strong, assertive, confident and popular with all.  Your name is found in the Old Testament in First Chronicles.  Benjamin is the twelfth and youngest son of Jacob and it means Son of the right hand.  Your Dad and I were eating in a Perkins when there was this woman with four children near us.  All we heard was Benjamin, sit down.  Benjamin, eat.  Benjamin, don't hit your sister.  During that breakfast we decided Benjamin would be your name.

Standing on the Edge
We waited for you.  It took us over a year to conceive.  I think you were testing us to see if we were the patient, caring parents you needed.  We kept wanting a child...we were waiting for you. 

You were born in the middle of the day.  The sun was so bright.  Everyone was very excited to meet you.  Within minutes the family was in the delivery room and whisked you all the way over to the couch on the other side of the room.  I got nervous because I couldn't see you.  When you were only 6 hours old, you cried because you wanted me to hold you.  Only me.  You are my son.  I am your Mom.

You needed to constantly be moving and entertained.  Remember when you slept in your baby swing every single night for the first five months of your life?  I do.  I had an extra set of D batteries opened in case in the middle of the night your swing stopped working.  People thought it was strange.  I was there for you. 


Before Evaluation
I didn't know what the word 'autism' was.  I was slow to learn.  I did my best.  Maybe the oddities would go away.  Parents make mistakes.  Soon after this picture was taken you were evaluated by the CLIU.  Soon after that you started school.  We started our journey, navigating through a difficult world.  Together. 

You never cease to amaze me.  When people say you can't....you do.  Your progress is incredible.  You are smart.  You are strong.  You are assertive.  You are confident and most of all, you are popular with all.  People meet you once and they remember you.  I am proud to be your mom.  I love you, son. 

Happy Birthday.

Love,
Mom

My Son

Wednesday, January 4, 2012

As I Look Around

Every January I dread going back to Toys R Us.  Christmas is over and we have half of their inventory thrown all over our living room floor.  So, why am I back in this store?  My son's birthday is in January.  I have always felt bad for friends whose birthdays fall in December or January.  Back to back gifts and celebrations.  Anyway, I get behind a blue cart and start pushing my way through the crowds. 

What would he like for his birthday, I ask myself.  He did say he wanted Santa to bring him a shark but it was so expensive Santa really didn't want to get it for him.  Maybe he'd forget.  I went to look for it anyway.  Ahh, there is was.  One lonely box with a shark inside of it.  Still not sure, I put it in the cart anyway and keep looking around.  That's when I saw a boy, approximately same age as my son with his Dad.  He was by the K'nex and Legos.  Jumping up and down.  Very excited.  Didn't hear one word come out of his mouth only noises.  I recognized the symptoms.  The silent communication with his father.  I got it.  I understood.  How many others in that store didn't get it. 

I left that aisle and went clear across the store in search of some Angry Birds.  The selection was poor but I did see that boy again.  He was looking at the super heroes now.  I was watching what he was picking out and my son loves the same things.  What would happen to these children say, 50 years ago when not much was known about autism?  There was no awareness.  There was no 'social networking'.  What type of therapies does he go to?  How does his school treat him?  So many questions pop into my head.  There was no time to start a conversation with his Dad; I had to make a decision.

Back to the shark that is in my blue cart....do I get it or don't.  My son doesn't ask for anything, except for food.  It is a bit extreme but I decide to get it for him. 

Now I am in this incredibly long checkout line.  Why do they only have 1 person working on check out?  This makes no sense.  I know he would be having a hard time standing.  He's be jumping around, walking away and grabbing all the extra goodies and trying to throw them into the cart.  We are still working on being patient.  I look up and see a much older boy now walking in with an older woman.  Perhaps mother and son.  He is toe walking and flapping his hands wildly and has a huge smile on his face.  Why not?  He's going into a giant toy store. 

As I look around I see more children with autism and parents who are not embarrassed or afraid to take their children out into the world.  It makes me feel good that there is more awareness.   I smile as I walk out of the store with shark in hand.