You don’t have enough points, sir.

(Friends, I’ve started some short story writing practice.  I’m given a prompt…like…”You don’t have enough points, sir.”  And, then I’m supposed to write a less than 700 word short story.  So, here is my newest story.  And, I’m sorry for the bad word…but I felt it was necessary for the character.  He’s talking… not me, but you know…I sometimes say bad words too, so I don’t know why I’m apologizing. =) This was a tough, hard, and sad story for me.  I feel so much for the main character.  Hope he gives you those deep feelings too)

 

“You don’t have enough points, sir.”

“Of course I don’t have enough points.  This shitty machine is broken,” I said, kicking the plastic rubber ducky on the defective game.  I started to pace back and forth, clenching my fists.  Mumbling something.  It took me a few moments to realize I was mumbling programming codes.

As I looked up, the pimply faced arcade worker was staring at me.  He stared as if a green martian fell through the roof in his living room.  This look was familiar.  A look in which disbelief trumps fear.  It was the look of my childhood.  My education. My life.  A look that not so subtly said, “Weirdo.”

I started to speak, to make my case again about the defective game, but he interrupted me.

“I’m going to get my manager.  You need to stay right here, sir.”  The worker said as he disappeared behind the soda machine.

I felt a hand on my shoulder.

“Ray.”  Her voice said flatly, “What happened?”

“This machine isn’t working.  I was supposed to get 10 tickets.  I squirted those freaking ducks ten times, which is supposed to give me 250 points, which is supposed to give me 10 tickets!  I was calling that kid over here to make it right, and he didn’t believe me.”

“Honey.”

“What!”  I said pushing her hand off my shoulder.  She knows I don’t want to be touched when I’m feeling “wound up” as she likes to call it.

“Ray,”  My wife whispered.  Her face calm.  I hated when she talked slow to me like this.  Like I was some kind of idiot.  I graduated with a doctorate from MIT.  I make six figures. I’m a 42 year old man, father, husband.

“Ray, you’ve got to get a hold of yourself.  They are going to make you leave.  Jack is going to be crushed if his own father gets kicked out of his birthday party over arcade game points. Why don’t you go sit in the car for a little bit. Just take a little break.”

Take a little break.  That’s what my therapist has been saying.  I knew this therapy thing was going to come back and haunt me.

“Ray, the lights, the crowd, the noise in here – these can set you off.  Remember the Psychologist called that sensory overload.  She said that was what can trigger this kind of behavior.  Irrational anger.  You know – this situation exactly.”

I begrudgingly made my way to the car, before Emily forced me to go, before I made a scene in front of Jack.

I had been causing scenes most of my life.  I’d always called it a “short fuse.”  But, my fuse only became short when things didn’t go as they were supposed to.  Like giving extra credit at the end of the semester?  The syllabus clearly stated how we were to earn our grades.  I think I had the right to flip out about that.

I started running programming codes over and over in my mind.  Somehow this always seemed to relax me.  The codes didn’t change.  They weren’t sarcastic.  They weren’t flexible.  They were static, consistent, expected.

I unlocked the car door and sat down. I turned the key and watched as the air conditioner’s cold blast ruffled the checklist in the passenger seat. I slowly read the title: “Strategies for self-regulation”.

The checklist was from my new psychologist.  The one, just last week, who had diagnosed me.

Diagnosed me with the same disorder my son had been diagnosed with four years ago.

Somehow I’d been invited to join a club I’d always belonged to, only I didn’t know I was a member.  Membership is not voluntary.  You can’t get out.  You can only cope.  And, try to help the younger members navigate.  Like Jack.  My boy.  My heart.

I thought I knew what Autism was.  I didn’t.

The Ladder Builders

Friends, a big part of the purpose of this blog is for Autism Awareness.  This fall, I had the privilege of speaking to a group of parents, Occupational Therapists, Behavioral Therapists, and Speech Pathologists.  It was an amazing experience, and something I feel so passionate about.  Here is a few lines of my talk…and some awesome movie clips about Autism and Aspergers.

Watch this video of Temple Grandin…it’s amazing. (Click the black section, watch this video on You Tube and it will link you up).

 

The Ladder Builders 

“Autism?  He doesn’t have Autism!”

This little face was not the face of Autism to me.  Sure, he couldn’t sleep and had a lot of food sensitivites, but he was funny and fun, and smiled…not all the time, but sometimes. When he felt good.  At the time I didn’t realize I had preconceived notions about Autism.   That I was playing into a stereotype.  And a false one at that. I had heard all the commercials on the radio, that your child is more likely to have Autism than to play major league baseball. And for the record, I still don’t like that commercial.  One day I hope they replace it with, “Hi.  I have autism and I play major league baseball.”   That’s the kind of thing we need advertise.  Back to my point.  I’d usually turn the volume down every time that commercial on, even before Parker was born, because it made me sad.  Being a person that thrives on relationships, I thought Autism was, in a nut-shell, a child that was incapable and uninterested in forming relationships.  And Parker wanted a relationship with me, and the rest of his family.  No way was he Autistic. Or so I thought.  I had put Autism in a nice little box. And now that I know more about it…A box is the last thing Autism fits in.  Now looking back, I could not have been more wrong.  Every child with Autism wants relationships.  They do.  They just sometimes have a different way of approaching it, a different way of connecting, and it’s our job to find out how they connect, and pursue it!  Pursue it with all our might!

Temple Grandin says, “I cannot emphasize enough the importance of a good teacher.”  She goes on to say, “Social thinking skills must be directly taught to children and adults with ASD.  Doing so opens the door of social understanding in all areas of life.”

One of my favorite songs is Bob Dylan’s Forever Young”.  The lyrics say, “May you build a ladder to the stars and climb on every rung.”

Kids on the spectrum need someone to help them build their ladder to the stars.(See picture above).  With help, YOUR HELP, these children can reach their goals and dreams. These stars are not out of reach.

I want you to close your eyes and imagine yourself.  Imagine yourself nailing in those rungs on the ladder belonging to your student, or patient, or child.  You are so important for their future.  You are their ladder builder!

Through Parker’s story there is one main highlight I have learned… Autism doesn’t fit into a neat box.  Or a messy box.  Or any box for that matter.  Stephen Shore says, “If you’ve met one person with Autism, you’ve met one person with Autism.”

In looking back over our story, I have come to the conclusion that yes, we made mistakes, but we also made great victories.  Victories in realizing that Autism is not a disease.  It’s not something to be cured of.  It’s just the way Parker is made.  He was fearfully and wonderfully made with Autism.  Just the way God wanted him.

Watch this clip from the Movie, Temple Grandin.  It’s the true story of Temple Grandin, best selling author, professor, activist, and voted as one of Time Magazine’s top 100 most influential people in the world.  And she is autistic.

Temple says, “I had people in my life who didn’t give up on me:  my mother, my aunt, my science teacher.  I had one on one speech therapy.  I had a nanny who spent all day playing turn taking games with me.”  She goes on to say, “It’s never too late to expand the mind of a person o the autism spectrum.”

Are you that person for some one?  The person that didn’t give up.  The ladder builder.

I want to leave you with one of my favorite scriptures.  Galatians 6:9 “Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.”

Build the ladder.  Reap the harvest.  Change a life.

 

 

 

Here is a great link to show your kids about Aspergers from PBS’s Arthur.

 

 

And just one more clip, to make you laugh.  This is Big Bang Theory.  It comes on CBS, and my husband and I had been watching this show for years.  We had NO IDEA that Sheldon Cooper had so many qualities of a person with ASD until we entered into this world.  Now it’s even better to us.  Sheldon, while quirky, is funny, fun, has friends, has success…he gives us good laughs and a lot of hope.

With that said, I’d like you to watch this clip of Big Bang Theory of what not to do.   Amy is giving Sheldon Cooper therapy to try to stop his compulsive need for closure.  Let’s watch.

 

Our Journey with Aspergers

Thanksgiving 2013,  Vince (my husband) felt the Lord say that we would be celebrating Parker and his story next year. That we would be telling of God’s faithfulness. His miracles. His answering of our prayers for our sick little boy.

Vince shared this with me that Sunday in 2013, and while I trusted he heard from God, I immediately thought and said, “I’ll believe it when I see it.” In other words, “yeah, right.”

We were in distress. Our little boy Parker had gone through 2 1/2 years of constant sickness and sleeplessness. Which resulted in him throwing up everything, eating only 6 foods and elemental formula (that cost as much as a mortgage), and a huge amount of daily medicines. He had seen numerous allergists, immunologists, and gastroenterologists. He had multiple blood panels, allergy tests, and 2 scopes and biopsies on his intestines. He had whooping cough, salmonella, and hand foot and mouth (all in a 6 week span). Our doctors were baffled that every test..from immune system to GI tract came back clear. After all this time, our specialists basically told us that they could no longer help. We were lost.

In addition, there was the sleeplessness. Parker was miserable. He could not rest. He would literally scream for hours on end. Every night. And day. For over 2 1/2 years. We did not sleep. We couldn’t even sit down with him during the night. We had to walk and squeeze and stand with this screaming toddler from 2-6 am or longer almost EVERY. SINGLE. NIGHT. Even as I write this it seems unreal. Our families would take turns on “Parker watch” so we could get some rest. We kept sleep logs to give to our doctors. We were hanging by a thread. Actually that last part of the fraying thread that was rapidly disintegrating.

This is where I stood at the thanksgiving service. Not only in disbelief, but having taken offense with God. I’d prayed for healing. I’d prayed my heart out. For years. I did not like the story of the persistent widow anymore. I felt like I’d ask, seeked, and knocked until I’d bruised my hand and lost my voice. And I did loose my voice. I came to the conclusion that I could pray prayers for others. For myself. But no longer for healing for Parker. I just couldn’t bear it. But in this time, God moved.

A trusted friend gave me a message from the Lord. God had shown her a picture of me having my hands held up to heaven by my friends because I was too weak to hold them up myself. Like Moses in Exodus 17 was too weak to lift his staff, so his friends held up his arms. That is how we continued. Our family and friends carried us. Carried us to the Lord.

At this very point, right around the thanksgiving service, I sent an email late at night, in desperation, to one of the top GI hospitals in the country. I sent our sleep logs, our food journals, our plea for help. To my total and complete surprise, they called me the next day and asked us to fly in the next week. Which we later found out is completely unheard of. Patients wait six months to a year to get in to the specialist we were seeing.

This miracle of was not lost on me. I immediately dropped to my knees in tears thanking God, and felt him tell me to check the mail box. Immediately, I knew what that meant. We had been waiting for months for a substantial tax return that had been very delayed due to identity theft.

I couldn’t even handle it. No way would that check be in the mail box that would pay for our trip to Denver. On this very day. We could have received this check any day since April. I slowly walked to the mail box. And there it was. Just as God had said.
Miraculous.

In Denver, our specialist led us for the first time to pursue a neurological route in treating Parker. He felt that most of Parker’s problems were originating in the brain, not the stomach. He referred us to a neurologist, who later referred us to speech and occupational therapists, who later referred us to a developmental psychologist.

When we returned from Denver, we felt hopeful. We’d seen God move. We had a bit of a plan for the first time. But, Parker was not better and was not sleeping. We had been reading in The Journey of the father in Mark 9:24 who said, “I do believe. Help my unbelief.” This had cut straight to my heart. The girls in my c-group prayed this verse over me. And they prayed for Parker to sleep!

That very night, he slept the entire night!!! Which he had done only a few times since birth. And then he slept again,the next night. I was rejoicing. God had swooped in. He had saved us! He had healed Parker! I was telling everyone. Shouting it from the rooftops.

But…we had a horrible 3rd night. An ALL night scream session. To be honest, I felt tricked by God and I was really angry. How could he bring us this far, and then leave us?

But, true to his form, God did not leave. He moved. Slowly and perfectly. He gave me a dream to change Parker’s bed. He gave Vince wisdom about new medication. Better and better and better. We look to that c-group prayer night as a huge turning point.

God made scripture come alive. Words that I’d read many times, were seeming to break the barrier in my soul. Promises, “the Lord your God is WITH you. He is mighty to save.” (Zeph 3:17). “The Lord is close to the broken-hearted. (Ps )

God spoke to me 2 years ago, very clearly, that he was NOT going to heal Parker, but was going to use Parker’s story to change the world for the kingdom of God.

I really struggled with this. Especially because at this time, I thought Parker had a GI condition. Why would God not heal him? And then tell me he wasn’t going to?? I was really mad about this, again, to be honest. Even though I knew He had said it, I still didn’t like it.

Now looking back, 2 years almost to the month of this conversation with God, we received a diagnosis for Parker last Tuesday. Asperger’s syndrome. High functioning autism.

Most all kids with Asperger’s have a “biologically sensitive system”. Their body over reacts to everything. Heat, noise, lights, sickness, food. Food intolerances are very common in these kids, as well as prolonged insomnia. All the loose ends are tied into a nice, diagnostic bow.

While he does get lost in conversation, Parker is friendly and smart and not what I had stereotyped in my mind as Autistic. That is the interesting thing about the Autism Spectrum. It is a full spectrum. If you know one kid with Autism, you do not know the next. Vince and I got a chance to go the the state Autism conference this weekend and felt like for the first time, people understood our struggle with Parker. Things actually made sense. We had somewhere that we actually fit.

Interestingly enough, this is exactly what God said. He wasn’t going to heal Parker because this was precisely how He made him. He made him fearfully and wonderfully with Asperger’s. He made him smart and unique and passionate. He made him exactly how he wants him … to be able to change the world for The kingdom of God.

This Thanksgiving we are thankful that God is never too late. That He never left us. We are thankful for answers. Thankful that God used this time to draw us close together and close to him. Thankful that God is the same yesterday, today, and forever. Thankful that God keeps his promises. “Blessed is she that believes the promises the Lord has given to her.” Luke 1:45

What Did You Said?

Parker: ” I had a dweem (dream) about Jesus.”
Me: “Oh, really? What happened?”
P: “Well, he said somp-thing…and den I said, WHAT DID YOU SAID? And den he said somp-ting again…and den I said WHAT DID YOU SAID? And, den he said somp-ting again and den I said WHAT DID YOU SAID? And, den Jesus hit his hand on his head and said “Oh, Bummer!”

I can’t help but think that this TOTALLY cracked Jesus up. I’ve been giggling about this, and was suddenly hit over the head with it’s spiritual significance. 

How many times does God whisper something to my heart. And, I’m too busy to listen. He whispers, “call this friend.” And, I think…I have too much to do today. I need to ignore that. I go into a “what did you said?” mentality. Busy. Moving. Getting things done.

God whispers, “buy a cheeseburger for this homeless guy.” I’m too tired to deal with the world’s problems….I move on. Drive by. Ignore him. Ignore God. Moving back into my “What did you said?” mentality. I heard God. I heard the whisper. I just can’t. Not today. Can’t act like I heard him. Moving on.

I don’t listen. I ignore. I am too busy to hear. I am not making the effort to be still and really listen.

Hebrew 3:15 says, “Today if you hear my voice, do not harden your hearts.”

Let’s open our hearts. Listen. Be present with God today, even in the still small voice. How much change can happen in the world, if instead of “What did you said?” We just said, “ok.”

Literal Parker

Literal Parker 1:

Took Parker to McDonalds today. Little smartie reads the sign in his tiny voice…”Pick. Up. Here. So, how do you pick your food up on da roof? How we get up dere?”

Me:😂well, signs are kind of confusing. We pick up our food at the window. They just point you to the general area.”

Literal Parker 2:

Me: (kissing Parker’s cheeks and saying “yum yum)”

Parker: why are you eating me?

Me: because you are soooooo delicious!
Parker: I not want to be delicious.
Me: well you sure are!
P: (starts to cry) I not delicious. I smart!
Me:😂you are right buddy. Yes! You are smart…not delicious.

Literal Parker 3:

(Parker makes me and Reese laugh for the third time in a row.)

Me: Parker you are so funny! You are on a roll!

P (looks under himself): I not on a roll. I on my car seat mommy!

Me:😂

Literal Parker 4:

Bibby: Parker are you so excited about going to Disney World?

P: no…I just want to stay on this planet.

Me:😂

Literal Parker 5:

Parker: can i have some candy?

Me: maybe later

P: maybe yes. Or maybe no.

Me: maybe means you might get some.

P: yes or no.

Me: maybe

P:

😡yes or no mom!!!!

Me:😂ok you can have some. Yes.

Literal Parker 6:

P: where we going?

Me: to see Aunt Karen and Aunt Kathy and Aunt Gayla.

P: WOW!!! Cool. Do they live underground?
Me: um no. Aunt Karen lives in a house. (Confused).
P: so are dey berry small?
Me: What? You know who they are? They are adults. We just saw them at Cafe 7?
P: oh, so dey just turned into Ants. Ants crawl on da ground. And dere habitat is underground.
Me:😂sweetie Aunts not Ants! It’s like a nickname…they are humans.

Literal Parker

SEASONS 

Parker: So, dis season is Fall. Den it transforms into Winter. Den what?

Me: Then it is Spring, and then it is summer.

Parker: So, Fall transforms to winter. Winter transforms to Spring. and Spring Transforms to summer. And summer transforms to fall.

Me: Wow. Yes, right. That’s great buddy.

Parker: When is Christmas.

Me: Christmas is in Winter.

Parker: When is my birthday.

Me: You birthday is in Spring.

Parker: Oh, I’m SO excited.

Pause about 2 hours.

Parker: I can’t believe it. Today is fall. Tomorrow is winter and Christmas. And den the next day is Spring and my birthday. And, den it’s summer.

Me: Oh, no buddy. That’s not right.

Parker: YES IT IS!!!! YOU SAID IT IS!

Me: I’m so sorry. Maybe I didn’t explain very well. Each season is like 3 months. Um, about 90 or so days. Each season is long.

Parker: (Bawling)

Me: Oh no.

Parker: Well, change it Mommy! Fix it. Change it right now!

Me: I can’t change it, bud. I’m not in charge of that stuff. Only God is.

Parker: (more crying).

Me: (ugh…this sucks…poor guy).

Pause about 30 minutes

Me: Let’s pray before we go into school.

Parker: I want to pray today.

Me: Oh, great!

Parker: Dear God, please fix it so that winter is tomorrow. Amen.

Me: hahahahahhahahahahahahahhahahahahahaha