Imagine, The 1st Annual Aspie Awards

Yesterday my thoughts kept taking me back to a day, a few years ago when Ted was a junior in high school and I spent the morning at school making hundreds of bite–sized sandwiches for that night’s graduation reception. I was always glad to help school. It felt like the least I could do. Ted was, after all, a challenge and a half.

With me that morning were three other mothers, and with the busyness of making tons of little sandwiches, came the inevitable conversation about our kids and their accomplishments.

And I was silent.

I wasn’t quiet because I had nothing to boast about, it was because what I had to boast about was so different. And it feels so awkward. And there are just times to get into it and other times you just shut-up and make sandwiches because it just doesn’t seem worth the effort to explain it all.

You see, I didn’t know any of these mothers because Ted didn’t have friends he saw outside of school. I didn’t drive to their houses to drop him off or host them at our house. The people I knew were his teachers, his principal (knew her REALLY well), his aide (knew her REALLY, REALLY well) and his case coordinator.

When I went to school it was for an IEP meeting or to see the principal to discuss the latest incident, or to volunteer, as I was that day, as a way to show my gratitude for working with Teddy.

I was constantly aware when he was in high school that he was in a magnet program and that he had to have both high grades AND good conduct to remain there. Because if he didn’t, well I’ll put it this way, according to Greatschools.com, Ted would have gone from a school rated 10/10 to a school rated 2/10 and where we could count his survival time in hours rather than days.

And my son was not involved in the activities their kids were in. It took all of Ted’s energy and patience to just make it through a day of school. Staying afterward to spend more time with people, to be part of a team or attend a sporting event in a loud gym was SO not what he wanted to do. And since having a problem free day was much more important to us, we didn’t push him to participate.

Instead, when Ted came home he spent his time decompressing, alone, at his computer. Instead of All-Conference Soccer player and Scholar Bowl Champion, he was ranked in the top 1% of RuneScape players (internationally, I might add). He sought out interaction that did not involve proximity to people.

He was the only student at his high school with autism, actually the only student with an IEP, and was the first special education student to graduate from his school. He was very unique in his situation and I lived a different high school mother experience than my sandwich-making comrades.

As I was remembering that morning and my decision not to mention Teddy’s RuneScape success, I started thinking about how our society celebrates successes that are very different from the ones, we, the parents of kids on the spectrum celebrate. Our experiences are not better or worse, they are just different, just as my story of being silent is not a sad one, it’s just my story.

Then this scene appeared in my mind…

The 1st Annual Aspie Awards

The Temple

I imagined an awards show that was being carried on live TV, drawing millions of viewers with companies shelling out small fortunes for advertising time. There was the iconic red carpet receiving guests who had been loaned tens of thousands of dollars worth of gowns, jewels and tuxedos and the place was thick with reporters from every cable station doing interviews and snapping photographs, creating excitement, anticipation and hype. Inside the auditorium there was an elaborate stage, over-the-top production numbers and a witty host amusing us throughout the evening.

You can probably envision this pretty easily because we see it every year during the Golden Globes, Screen Actors Guild and Academy Awards.

Now imagine…

The awards in this show are not for Best Actress or Best Screenplay and the recipients aren’t actors or directors. Instead, being honored are our kids, who, like those honored in the real life award shows, spend their lives crafting how they appear to the world. Only, instead of memorizing lines from a make-believe script, our kids are spending the majority of their waking hours navigating their way through a script-less drama called life with autism.

And when their name is called to be honored, if they are in the audience at all, as many prefer to be at home participating via Skype, the lights are dimmed, heads do not turn towards them and the room is made quiet so their sensory systems do not get overwhelmed. If they can make it to the stage, they receive, instead of an Oscar, a Temple, in recognition for their accomplishments in categories such as…

Made It Through A Day Without Hitting

Verbalized A Need

Self-Managed My Sensory System

Stood In The Lunch Line

Spoke To A Classmate

Wrote Legibly

Crossed Midline

Stayed Awake In Class

Completed Homework

Located And Had Supplies Ready When Needed

Participated In PE/Recess

Had An Intervention Free Day

Made A Mistake AND Kept Going

Made Eye Contact

Achieved An IEP Goal

And of course, because it’s what started this,

Top 1% of RuneScape Players Internationally

Can you imagine????

A Farewell To My Dog

On August 28, 2011 my dog Buffett died.

My dog. What wonderful words.

I am convinced some beings are meant to know one another.

Buffett and I were.

Shortly before Neal finished graduate school I wanted a puppy. Afflicted with responsibility, we waited until we moved, he began his new career and we could better afford the commitment. I spent that in-between time researching dog breeds and when we were ready to adopt I knew for sure I wanted a female, Border Collie mix.

I visited the shelter.

There were so many cute puppies and dogs, all just tugged at my heart, but they were not mine.

Then one September Thursday afternoon I called a local vet who advertised adoptions in their yellow pages ad.

“Do you have any puppies available for adoption, possibly even a female, Border Collie mix?”

“Oh my gosh,” the receptionist responded. “You aren’t going to believe this. The day before yesterday one of our vet techs found, abandoned in the woods near her house, a six to seven week old, female, Border Collie-Spaniel mix!”

We arranged for me to come in the next day to meet her. I already knew she was mine, and of course she was. I saw her, fell immediately in love and made plans for her to come home with me on Monday. She needed to remain with the vet to finish her treatments for the infestations from her time in the woods. I could barely contain myself the entire weekend. I was getting a puppy.

Buffett

The day Buffett came home. September 22, 1997

That was the beginning of our story.

Now this is the end.

Buffett was diagnosed with Lymphoma and it was a short time between the diagnosis and when the illness overcame her.

We knew it was the end on a Saturday and Neal wanted us to spend the day at our place on the lake. She loved the water and lying in a particular spot on the bed where, in our small cottage she had a view of the whole downstairs and the water. We wanted to give her a great last day.

The day passed with Buffett on the bed and Neal and I outside on the master bedroom deck. The gods smiled down on us with an unusually mild August day. We enjoyed sunshine, low humidity and the most magnificent breeze coming off the water. We drank margaritas, an appropriate choice to toast our beloved dog named after Jimmy Buffett, and the buzz, I will admit, helped mask the pain.

We could see Buffett through the open French doors and we would often go in and sit with her and try to get her to drink some water. She had drawn inward and was mostly non-responsive and had given up eating. I think letting her know we were there was more for us.

When evening came we went to bed but barely slept. Our minds were on Buffett and her growing restlessness and by 4:00 a.m. Sunday morning we knew she wanted to be outside. Our lake property though is extremely sloped and almost all deck and stairs. There was no safe grassy spot for her to lie.

So we got up, dressed and Neal carried her to the car and placed her in the front passenger seat. That’s where she always sat, and so for her final car trip it was absolutely right for my puppy to be next to me as I drove her home.

For the next 35 minutes I watched her in that seat, so very aware I would never see her there again. She was weak and although she was but a foot from me she was very far away. She was peaceful though, more relaxed than she had been earlier, and I wondered if she was comforted by somehow knowing she was going home.

We got back to town around 5 a.m. Relieved, we got out of the car and Neal and I carried her together to the back of the yard and placed her under a tree. It was dark and I sat with her until the sun began its climb into the sky. Then I heard the words of Connie, the tech at our vet’s office, who just days before told me…

“They will hold on for us.”

It was time for me to say goodbye. My tears flowed along with my words as I thanked her for all the love and wonderfulness she brought into my world. I wanted so much for Buffett to understand the depth of my gratitude to her. How do you do that? What I said seemed inadequate expressions. When you know you won’t ever get the chance again, you want to go on and on as if saying it so many times will some how quench the unquenchable thirst. But I had to stop trying, I knew I couldn’t stay.

If Connie was right I did not want to prolong, not for one selfish moment, what she had come there to do, what was inevitable. So I leaned over and kissed my puppy on the top of her head and as my hand, which had been stroking her soft fur lingered on her back, I told her one last time how much I loved her and that I was leaving.

I got up, turned, but could not move.

Frozen and conflicted, I stood there still wanting to be near her.

And in those still moments, my thoughts took me back to March 2010 when Buffett tore her 2nd ACL two weeks after tearing the first. Both hind legs were bandaged to her hip leaving her unable to walk. Before bed one night, when it was time to take her out, I stood in the family room looking out the windows at the rain and realized…

“Love is carrying your 45 pound dog out in the rain so she can go to the bathroom.”

In the progression of life and love, I came to understand, as I stood there motionless that Sunday morning, love is also walking away so she could die.

With that thought I did.

And my tears grew in direct proportion to the distance I moved from her. When I got inside I looked out those same windows and watched my dog in her final hours.

The photo of Buffett that sits on my desk

Shortly after I came inside she got up and moved to the far corner of the yard and nestled herself between the azalea and privacy fence. Her last steps communicated to me her instinctive need to be away and alone and it was then I saw the elegance in her death.

In the days since she had gone inward, since she stopped eating and drinking, she showed me she seemed to know exactly what was happening, that she knew what she needed to do and she did so with complete calmness. She was successfully making her way through the most natural of processes.

It was about 8:40 a.m. when I lied down on the couch to close my eyes. I fell asleep and suddenly awoke at 9:00. Neal was looking out the window at Buffett and about to head out the back door.

“What’s happened?” I asked.

He said Buffett had just convulsed and was going to get a closer look to check if she was breathing. I joined him. I couldn’t help but notice in the 20 minutes I finally let go enough to sleep, Buffett too let go.

We stood on the edge of the deck but couldn’t tell if her chest was moving. She had been taking such shallow breathes it was impossible to determine from so far away so we went into the yard, slowly walking towards her.

“She’s not breathing.” I said.

He agreed.  When we got to her we knew. She was gone. My puppy was gone.

I dropped down beside her and once again my hand rested on her still warm back. I was comforted to be touching her but also aware she was no longer there, just her physical body remained. The delightful energy that made her Buffett was already gone. I cried. And it was the first time in our 22 years of marriage I saw Neal cry.

Where does energy go?

It was her eyes. That’s what I remember most. I didn’t need to take her pulse to confirm she was gone. All I had to do was look at her still-open eyes to know she wasn’t there.

I sat and looked at my brown-eyed girl.

I looked and looked and looked. My tear soaked eyes looked hard at her eyes, wanting to absorb her, to study and remember every detail of my true-hearted companion. And as I looked I was struck by the idea that energy is a force we ordinarily think we cannot see, but actually we can. My sweet dog’s eyes taught me energy is visible, because I could see its absence. Eyes that once sparkled with love of naps, chasing squirrels, licking empty yogurt cups and hopefully me, were now vacant.

When I think of Buffett, and I do every day, I think of her delightful energy and am so very glad she graced my life for 14 years.

NOTE: It was with hesitation I returned to the lake the following Friday. Buffett’s death was so recent, her absence so strong and the thought of the lake house made me miss her all the more. When I arrived I found the place just as we left it, the signs of our quick departure that Sunday morning quite evident. I had come to clean up but once there, all I wanted to do was sit on Buffett’s spot on the bed. After a good cry, I went downstairs and onto the porch. As I sat on the chaise and looked out at the water, from out of nowhere, appeared a dog I had never seen before, or since. She was a Spaniel and looked just like Buffett, only she was caramel and cream-colored. The dog hopped up onto the chaise and sat beside me. Stunned, I reached for my phone and took her picture. After I had a permanent record of this canine apparition, my hand reached out and almost melted in her familiar soft fur and as I looked into her brown eyes I smiled a smile that was big and deep and completely thirst-quenching. I thanked her for coming to visit me. Then, as quickly as she appeared, she left. 

My lake pup visitor.

On The Lighter Side…

The purple plates are here!

Okay, so yeah, you might be saying, “Sorta crazy thing to be excited about.” But you see, that’s where the fun is… being excited about the crazy, silly things, like getting purple plates so when your son empties the dishwasher and puts the plates in color spectrum order he has the ENTIRE spectrum!

Or looked at another way… it is good for mental health, for Jimmy Buffett did say, in my all-time favorite song, “If we weren’t all crazy we would go insane.” from Changes in Latitudes, Changes in Attitudes

If this still doesn’t make sense, you can read the post that inspired the purple plates.

Just having some fun with my day. Hope you are too!

Stars Fell On Alabama Tuesday Night

My daughter Meg reads constantly. Really. Last year she set a goal to read 52 books. She read 80. This year her goal is to read the collected works of Shakespeare. She’s a cool kid. Really.

Earlier this week I got to witness a marvelous sight. It was one of those so good moments that makes the moments that aren’t so good just melt away into utter and total nothingness.

My 16 year-old and I went on a road trip… a reading road trip.

One of her favorite authors was having a book signing in a town about an hour and a half from us.

“Can we go?” She asked me last month when she first read about the upcoming event.

“Heck ya,” I told her.  “Let’s go.”

Recalling a similar trip we made in November, let me tell you, book signings are fun.

A book signing? Fun? You may be thinking.

Heck ya they are fun and I will tell you why.

Because there is almost nothing better than seeing pre-teens and teenagers absolutely, totally, beside themselves excited over an…

AUTHOR!!!

Because they READ. BOOKS.

And it gives me hope to be around parents of kids who support their children by willingly driving them hours so they can then stand in line for more hours so they can be with HUNDREDS of other kids and talk about BOOKS.

“Oh my God, I LOVED that book!” I heard over and over again. I watched kids who knew each other for minutes became instant friends because of their love for Harry and Eragon and Alaska.

Tuesday’s event was this and so much more.

This book signing was held on the campus of the author, John Green’s high school alma mater, which also happened to be the setting for his first and best-selling book, Looking For Alaska.

The closer we got to the school, the more Meg wondered aloud if we would be able to find the lake and would there really be a swing like the one “Alaska and Pudge sat on.” And would we see “the Evil Swan.”

And we DID find the lake AND the swing AND if by reservation the “Evil Swan” was sitting on the shore.

My daughter got to walk into one of her favorite childhood books.

And I got to watch.

And the universe sang the sweetest tune.

The swan is apparently both evil and camera-shy for he/she swam out of sight while I composed the photo.

Note: Last night I stayed up way past my bedtime reading my signed copy of John Green’s, The Fault In Our Stars. It was worth it. A very good read for every kid and their parent. Click here for more information about John.

A Talk With Ted About Growing Up With Aspergers

Excerpt from Teddy Update: November 5, 1998 – First Grade

October 8       Scratched a student and ruined teacher’s paperwork. Loud in line in the hallways.

October 14     Slapped a girl on the face at recess. Did not return to class after going to the bathroom. Was missing for 30 minutes and teachers had to search for him.

October 19     Threw away lunch money check from home.

October 20     Arguing with the girls at recess.

October 22     Chewing on a student’s shirt.

October 23     Hitting with a rope at recess.

October 27     Fighting with a boy at recess.

October 28     Noisy at assembly.

October 30     Put hands around a girl’s neck at recess.

November 2, 3, 4   Fell asleep in class

I talked to Ted about why he does some of the things he does at recess and he said he likes to hit even though he knows he shouldn’t because, “It tells the kids who are bothering me that I want them to leave me alone.” He said he does this most often when he is teased. Last Friday he put his hands around the girl’s neck because she said to him, “I bet you can’t beat me up!” – End of Excerpt

Yesterday afternoon, more than 13 years after this was written, a now 20-year-old Ted and I talked about this time. What could he remember? And with maturity and distance could he help me understand what he experienced? His response…

I don’t really remember much about that time. I was out of my mind. But what I do know is I didn’t care about the social contract. I still don’t.  The example of putting my hands around the girl’s neck, I think I understood the consequences of my actions, that I would get in trouble for it, most six years old do. But I think I wanted to surprise her more by actually doing it because I figured she thought I wouldn’t, and so to me, it was worth being punished to do it.  I wanted people to leave me alone more than I cared about being punished. Wanting to be left alone hasn’t changed. I can just control myself better now than I could then.

Take making eye contact for example. I don’t want to. I would rather be looking at the oven. (We were in the kitchen.) I have to MAKE myself look at you. I used to not be able to do that and talk to you. I can now and will when I think I should, not for me, but because I think the situation calls for me to. I can use my intelligence to make myself do things I am supposed to, when I HAVE to, not because I naturally would.

I think that is why I stopped having meltdowns. Because as I got older, I could use my intelligence to make myself do what I HAD to do, not necessarily what I wanted to do. I also started caring less about more of what happened and when I cared less it helped me just want to get out of the situation quicker, easier, and get back to what I wanted. I play the game if you will. But then, really, doesn’t everybody?

When I asked him if his OCD was problematic he said it was at times. Then he laughed and pointed over his shoulder to the plate rack just behind him. “But I also enjoy it. Haven’t you noticed when I unload the dishwasher I always put the plates back in color spectrum order?”

I nodded and said that indeed I had.

“But you know,” he added, “we are missing violet.”

I told him I would be happy to get a couple purple plates.

He smiled.

And so did I.

My boy just keeps teaching me you gotta roll with life.