SMS Stories- "Trick or Treat"

I wanted to give you all the chance this week to hear from some voices within the SMS community. And so I will be posting stories from parents who chose to share a glimpse of their life with you all. Please embrace them and say hi. I'm serious. Just say hi and a little of your love to know that they are being heard.

This is from Tina, who writes about her life at her blog Tales from the Trenches. I found Tina's blog, from searching SMS on blogger. You know how when you go onto blogger, and you look at my profile, and you click on Smith Magenis Syndrome listed under "Interests", there are only 3 blogs that pop up. That blew me away, out of the millions of blogs. Anyway... take it away Tina and thank you for this.

All the Love in the Universe ~ Me

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“Trick or treat!” The refrain was coming from our seven year old son, Garrett.

“Trick or treat!” It probably would have sounded less grating if it hadn’t been six o’clock in the morning.

“Trick or treat!” And he had been singing it for the past two hours.

“Trick or treat!” Even with two pillows over my head, I could not block out the noise.

My husband, Charlie, sat up in bed. “Is it November yet?” he asked.

“Garrett will just start asking ‘Santa come today?’” I reminded him.

For us, the OCD-like symptoms that come with Smith-Magenis Syndrome are the most challenging. Garrett will fixate on a TV character or event and absolutely obsessive over it until we are ready to take a ball bat to the purple dinosaur or cancel all holidays.

“Mommy?” Garrett must have heard us whispering. The CIA has nothing on his intelligence work.

“He wants you,” Charlie chuckled.

I walked past Garrett’s door. The knob only works from the outside because Garrett likes to leave his room in the middle of the night.

“You awake?” His head popped out of the top panel. He must have emptied out his toy box, flipped it over and stood on it. Charlie did some carpentry work on the door so we could look in without waking Garrett. Not that he is ever (ever!) asleep.
“I’m going to make some Mommy juice. I’ll be right back,” I answered.

“Mommy juice” was a phrase Garrett invented when he was three. Because he had a speech delay, we used sign language to communicate. Since we did not have a sign for coffee, Garrett combined two words he knew to convey the idea of “coffee.” His unique way of looking at the world constantly amazes (and amuses) us.

“Trick or treat?” It is now difficult to remember why we spent so much time in speech therapy.

Downstairs, I turned off the door alarms and motion detectors. We had them installed after one scary night when Garrett walked out of the house at 3am. He was barefoot and there was frost on the ground. Thankfully, our neighbor leaves for work at that ungodly hour and brought him home. Charlie, who has been mobilized twice with the National Guard, believes Garrett has a future career testing military security systems. We can barely stay one step ahead of him.

All through breakfast, Garrett kept asking, “Trick or treat?” He dined on PB and J, a banana, some go-gurt and milk. It would be the same meal at lunch and again at dinner. Every day, day after day.

“Garrett, we will go trick or treating after dinner,” our son Patrick explained. Although he is the middle child, Patrick fills the role of big brother at our house.

SMS can be an emotional rollercoaster. It is amazing to rejoice in Garrett’s accomplishments and start to believe his delays “are not that bad.” Then reality will rear its ugly head, like when our youngest son Brennan, surpassed Garrett’s abilities. It takes a conscious decision not to dwell on the negative.

After breakfast, Charlie announced he was going to mow the grass.

“Do you have to do that today?” I asked. Garrett cannot stand the sound of the mower.

“What do you want me to do?” he answered. “This is my only day off and I need to mow one last time before winter.”

That is a constant battle for us. I prefer peace and the path of least resistance. Charlie’s philosophy is that the world is not going to adapt for Garrett, so Garrett needs to learn to live in the world. But, an event like beggar’s night can throw Garrett into a meltdown. I felt the need to keep him calm. If Garrett were to reach “the point of no return” in his behaviors, then one of us would have to stay home.

“Garrett we forgot to mark the calendar,” Patrick reminded him. Always the peacemaker, Patrick brought Garrett a marker. We were checking off the days before Halloween in the hopes that it would help Garrett’s concept of time. When he was younger, we would simply not tell Garrett that an event was coming until it was time to start. But once he began attending school, it was impossible to keep news from him.

Garrett turned and saw the pumpkin sticker on today’s date. “Trick or treat! “ He jumped and clapped. Patrick and Brennan joined in. “Trick or treat! Trick or treat!” The boys were laughing and Garrett was grinning from ear to ear.

Then, the mower started.

Garrett fell to the floor. He covered both ears with his hands. He flailed back and forth.

And, then, he started the ear piercing screams. There would be no reasoning with him.

“Can we watch TV?” Brennan shouted above the screams.

“Only if you turn on the Disney channel,” I shouted back to him. I stepped over Garrett and went to load the dishwasher. If we ignored Garrett, he would most likely calm down. Easy enough to do at home, absolutely impossible in public.

Somehow, Garrett heard the Handy Mandy theme song. He went and joined his brothers in the living room as if nothing had happened.

It seemed like a good time for me to get dressed.

When I returned to the kitchen, Garrett sat at the table. He was wearing a chef hat and apron... and he was completely covered in flour. Every measuring cup I owned was lined up on the table and full of flour. He had my largest mixing bowl in front of him. It was filled with twelve eggs. There was not a single shell in the bowl.

I had forgotten to put the lock on the refrigerator door.

“I sorry. I sorry.” Garrett looked at me. “You mad?”

“Get in your room,” I said calmly. “I’ll be up to give you a shower.”

“Trick or treat?” he asked.

“Upstairs!” I shouted.

He covered his ears and ran upstairs.

I was cleaning up the mess when Charlie came in. “Maybe he wanted to be Casper,” he joked. I was not amused.

As I headed upstairs, the smell of chamomile became overpowering. I opened Garrett’s door and saw empty bottles of shampoo, bubble bath and shower gel piled up on his floor. They were poured out into the empty toy box. Garrett sat in the box, completely naked.

“All clean,” he announced through his powdered face.

I had forgotten to put the lock on the upstairs bathroom.

“Trick or treat?” he asked.

We spent the rest of the day answering that question. Charlie decided to set the oven timer. He told Garrett that when he heard the “beep, beep”, it would be time to get his costume. It seemed to do the trick.
Finally, the alarm sounded.

“Garrett!” I ran to the living room. “It’s time to get dressed! Trick or treat!”

Garrett looked at me. He shook his head and turned back to the television. “No thank you. Maybe tomorrow.”

Charlie took the boys trick or treating. Garrett and I stayed home and passed out candy.
And started the countdown to Christmas…

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