Monday, September 16, 2013

Chocolate on my couch

Sometimes you let chocolate ice cream drip in a mess on your couch.

Sometimes you let your child eat chocolate ice cream in the living room- even though it is against the rules. 

Sometimes, you watch the drops make a chocolate pathway on his chin and plop onto his shirt.

Sometimes, you look at the chocolate ice cream splatters on the couch and consider the stickiness and stain of it all.

Sometimes, you just watch the mess unfold because....

Sometimes, your son utters the words "I want ice cream" and you are so happy that....

Sometimes, you let chocolate ice cream drip in a mess on your couch. 

Dear Reagan (a letter to my son before he goes to camp)

Son, you should know, I have made a lot of mistakes in my life.
It's true, I admit it.

There was the time I put you on that horrible gluten and casin free diet and you cried when you stared at your plate, or all those times I treated you like you were a baby right in front of your peers.

Let's not forget the time I screamed and ran away when you picked up a real live gardner snake.

As you can see, Reagan, making mistakes comes easy for me. I don't even try and they happen.

So, when it came time to drop you off at camp this summer, I got sick to my stomach thinking I had just made the biggest mistake I had made in a long time. I thought this one was way bigger than making you choke down that horrible batch of gluten free brownies or leaving you to fend for yourself against a snake.

The day we left, I know you were anxious to get to camp. You saw fun activities in the social story and couldn't wait to do them- swimming, hiking, fishing, and the Kansas City Zoo animals visiting. You were ready to leave by seven in the morning and we didn't need to be there until one. Your excitment and enthusiasm were my dread and dispare. Your desire to get to camp in a hurry was my desire to procrastinate and avoid taking you there altogether.

I have to tell you son; I was nervous. You had never been away from home, never spent over-night time with anyone that wasn't family. I had an ache in the pit of my stomach the entire ride to camp.

When we finally arrived at camp and Kelly Lee greeted us and directed us to the cabin called 'Shalom.' I tried to take that as a sign that I should be peaceful and not anxious when I say good bye to you today. You were excited when we walked to the cabin and looked around, checked in at the nurses cabin, and perused the camp site. When we were finally all drained out of reasons to stick around, (don't think I didn't notice that you tried to ditch us a few times) we got in our car and headed toward the main meeting area of the camp site, leaving you behind.

That's when my stomach tied up in knots and I wondered if I had just committed the biggest mistake ever. How could I just drive away? I'd never left you anywhere before. In order to make myself leave you at camp and drive away, I had to remind myself why I sent you off to camp in the first place.

That day, driving from Basehor Kansas back to my home in Lee's Summit, I recalled all those reasons why I did it. I made you go to camp because I wanted you to have the camp experience. I wanted you to get a little outside of your comfort zone and try something new.

I also wanted to send a message to you. You can do this. Son, you can do this and I believe in you.

Reagan, I want you to know that you don't have to settle for the world of autism, there is so much out there that you can try. Don't settle for a cozy relationship with your ipad or tv, there are so many wonderful kids out there that would make extremely valuable friends.

Don't settle son, because settling is the easy thing to do and you just may find that the world outside of autism has something incredible to offer that you haven't experienced before.

You are the hardest working ten-year old I know. You can make camp something grand, something you will have as your own. Don't be afraid to soak it all in and learn and grow from it. Most of all have fun.

I may feel this hollow ache in the pit of my stomach at leaving you but I know, just know that you are in good hands. You don't fail at anything that you try because you work so hard at and I am certain you can do this!

As for me, I will swallow this lump in my throat and I will be fine. I love you and you are important to me. You will do great at camp and we will celebrate when you get home. I will be hugging your face off so just deal with it. Oh, and have a glorious time at camp!

Thursday, August 2, 2012

Vivid Recall

I bet if I asked you to tell me details of that fateful day on September 11, you would remember exactly where you were and what you were doing the day a plane was flown with malice into the twin towers. You could probably recollect what you were wearing and whether or not you abandoned a half eaten waffle with two squares filled with maple syrup on the table to listen closer to reports on the TV.
I bet if I asked, you would be able to tell me exactly what you wore when you had your first kiss. You would probably remember the way you hesitated before that moment, not knowing if the other person would reciprocate, but hoping that they would. You could probably access that memory and the feelings that went with it pretty easily.

Psychologists say that when something monumental happens in our lives, details of the event are imprinted on our brain forever. Sometimes, the event can be such that it alters our brain chemistry  from the time of the event going forward into eternity.

Such an incredible  mind blowing event happened to me today that I am sure the details will never become just a faint wisp of a vapor in my memory. They will stay real, vibrant, and noteworthy.

I remember standing in my kitchen, a half of a cup of luke warm coffee, heavy on the hazelnut creamer, in my right hand. My hair sticking up on all sides, my glasses falling too far down on my nose. Up beside me comes a little red haired boy who grabbed my arm.  He started tugging it in that way he does when he wants something  that requires me to decode his request by using the skills I've honed over the years that would rival any seasoned, chain smoker police detective who has been on the force for thirty years. It's not easy to decipher the wants of an individual who has limitations on their ability to talk.

I felt the tug on my arm and in slow motion, my head turned toward the little red haired boy. He was looking up at the ceiling and twirling his fingers. His mouth uttered  words I hadn't heard before.

Tugging my arm, he said, " I love you, mom."

After countless draining IEP meetings, I never heard "I love you mom."
After seeing specialist after specialist, I never heard "I love you, mom."
After fighting with the school principal on his behalf, no "I love you, mom."
After endless episodes of Diego and Clifford, I never heard "I love you, mom."

On his own time, in his own way... "I love you, mom."

You see, people who are autistic don't do anything unless they really, really want to. That's the nature of the problem- they don't care what you want them to do, they will do what they want and if it means twenty episodes in a row of Diego while chewing on a towel and sitting in their underwear- so be it.

It's the very nature that makes my little boy's words of "I love you, mom" life changing and utterly priceless.

You see, he wouldn't have said it if he absolutely didn't want to.

It took overcoming language and processing disorders to utter those words, meaning he had to work and work just to make those four simple words leave his lips.

So I will remember standing in my kitchen, a half cup of lukewarm coffee in my hand, heavy on the hazelnut creamer, hair disheveled, glasses falling down the bridget of my nose and those four words that he wanted to say that day.

Spontaneous. Non- Prompted. Beautiful.

"I love you, mom."

Monday, July 30, 2012


The first traumatic flashback episode hit me while I was driving on the way to work. It was a rogue memory of the unfortunate event that happened two weeks earlier on the fourth of July. The memory invaded my thoughts and it was just like I was back there. Again. Living the emotion and the events of it all.

The traumatic flashback episode took me back to that fateful day at the pool. It was America's birthday. Kids and their parents came out in droves to swim in the neighborhood pool. There was oldies music being piped through the pool speakers. Happy, splashing kids were everywhere. Folks were eating ice cream. Since my kids were busy playing and splashing in the pool and didn't need my constant supervision, I settled into my comfy plastic lounge chair, baking in the sunshine and enjoying the view of my kids playing in the pool. Sure, my autistic son was getting into the personal space of a newly married couple- I think he may have even touched the girl's hair, but all in all it was a perfect day and the personal space invasion situation wasn't so bad that it warranted me getting out of my lounge chair. I just watched as the couple in love kept inching away from my boy with looks of uncomfortable annoyance. All and all, things were happy and peaceful.

Looking back, perhaps my downfall was uttering to my sister about what a perfect day we were having at the pool. Maybe it was me having the audacity to lounge on the outside of the pool when everyone knows an autism mom should not blink or lounge- not even for a second. My sense of tranquility was a foreshadowing of the horrible events ahead. The calm before the storm.

Then, it happened. Something I never dreamed I would have to live through. Something that caused me to have flashback episodes similar to PTSD that would haunt me at random times throughout the summer. It was the brown cloud of doom.

As I lay in the sun, my sister suddenly screamed at me, jolting me from my zen like relaxation state and the only words I heard coming from her mouth involved "Poop" and "Pool." I looked down at my son and saw a telling brown cloud making its way through the blue chlorinated water and knew the worst had happened- he pooped in the pool.

People around him started screaming and running through the pool water to get out as fast as they could. But it was too late. The toxic brown water had spread like a fog.

I yanked my son out of the pool and pushed him into the women's bathroom. My voice was only a hiss at him but the venom behind it was a social clue that he did not miss, "YOU DON'T POOP IN THE POOL." I hiss whispered. He cringed. 

As I left him in the stall to finish his business, I went to find the pool manager so I could share the good news. After all, I hadn't yet ruined everyone's fourth of July pool day - there were still blissfully ignorant pool goers in the deep end enjoying their swim so I needed to tell the pool manager to put an abrupt end to their fun too.

I stomped over and mumbled something about my son having an accident. At first, the manager thought I was mumbling about a first aid accident. Somehow, I managed to mumble poop and pool, just like my sister did earlier. Hearing this news, the pool manager was visibly upset with me. He asked me if it was solid or liquid. I stared back at him unable to speak. I hadn't anticipated having to answer the shape of the poo. Then, the pool manager shouted a curse word at me and started yelling to get everyone out of the pool. It was an exodus like I had never seen. Kids were crying, adults were swearing, people were scattering. 

If the shame I felt were an earthquake and scientist measured it at that point, it would have been a twelve on the richter scale. Follow that shame with guilt for ruining the fourth of July for close to a hundred people, and you have a tsunami of emotion similar to what I felt that day.

I tried to keep my head bowed as I walked out of the place, but the corner of my eye caught the line of happy people that were excited to get into the pool as it snaked out into the parking lot. Little did they know that they would never be allowed in with their kids, coolers, and pool toys. They would have to take the fun and go home.

I climbed into my car and could not even look my husband in the face, he drove me home and I don't think I spoke a word to anyone for the rest of the day. It was just too painful to talk about.

The neighborhood pool was closed for five days after that incident. The empty chairs and lonely water slide all witnesses to the event that shut it down- a small boy, red hair, almost nine years old, and his mother who dared utter the words of relaxation and enjoyment at watching the kids have fun at the pool.

It was after that day, that I learned...

Poop Traumatic Stress Disorder. It is real.