A Difficult Week

I am writing today with a heavy heart. I am typing at my computer while tears are streaming down my face. I am on my 4th cup of coffee, and it's only 10am.  I try to always be on the positive side when it comes to living with autism. To look at Ethan's victories over his challenges and not to dwell on his challenges he still faces. But this week has taken it's toll on me....and I need to write.

Ethan & his Daddy had an AMAZING time last weekend. Ethan made HUGE strides, and I am so excited for him. Monday, we all had the day off of work due to the Martin Luther King, Jr. holiday. It was another great day. So, Ethan has only had school 4 days this week.....and every morning we have endured a 20 minute meltdown.....and I don't know what is triggering it.

From the moment we start getting ready for school (putting on socks, shoes, gloves, hat, coat, etc....) until the moment he sees his school, he is in tears. He is so upset that he can't "use his words".....and I have no idea what has changed. Obviously something has, but to me....it's business as usual. We still are doing everything that is routine....everything on his "list".....so I'm continually wracking my brain to figure it out.

Then, yesterday, the school told me that he had a bad day at school too!? Then, I was playing a Memory Game with him last night, and it was meltdown after meltdown. If he didn't make a match, meltdown. If it was mommy's turn, meltdown. If I said "YEAH" when I made a match, meltdown. This is a game we play all the time, but for some reason he wanted to to it HIS way, and anything else made him meltdown. What in the world is going on?????

I have pulled out ALL of my tricks. Even brought up some things from the basement that he no longer responds to.....but I figured it was worth a shot. We have limited his technology usage because sometimes that helps. The strange thing is that he is FINE when Daddy is around.....I'm thinking about pulling out one of Corey's dirty shirts from the hamper & wearing it!?!? Maybe smelling like Daddy will help? I'm so desperate!!!!!

Who knows what it is?.........
*Is it his new gloves?
*Do his clothes itch?
*Is there a new sound in the house that I am not hearing?
*Is he not feeling well?
*Is he having a growth spurt?
*Is he upset with ME?

OK....I know that last one seems ridiculous, but it's very hard not to take his behavior personally....ESPECIALLY when he is fine for Corey. Like yesterday, Ethan didn't tell me AT ALL when he had to go potty. BUT, minutes after Corey got home, Ethan went to him & said, "Daddy, I have to go pee!" WHAT IN THE WORLD??????

So, I'm at my wits end......literally. I have no idea what to do for Ethan. I don't know what's wrong or how to help him. So, after I came home from taking the boys to their schools, I got online to check my resources. My attention was drawn to a NY Times article talking about changes in autism diagnosis. As I was reading this article, my attention was drawn again to a video on the side of the webpage. I clicked on the video & began listening to the "Patient Voices: Autism". I immediately went into the ugly cry as I listened to Marguerite Kirst Colston talking about getting through bad days with her son who has autism. She put into words how I am feeling today, and it was so nice to know that others out there are having the same struggles. Her sharing her story has helped me endure a bad day.

Here's what she had to say...."I’m often asked what a typical day is like when you have a child with autism. My son Camden is full of life, full of challenges and full of excitement. He is non-verbal, needs significant assistance and has several medical issues. So, while there are schedules to our days, a day is never typical. There are good days and bad days, and I’ve learned that simply building more good days is the best goal.

On a good day, we conquer our world together. Good days usually start when we both have had enough sleep (there’s probably a research study out there confirming my theory, but I don’t need to see it to know that sleep is key). Schedules work, pictures are used and we both see minute-by- minute successes. Camden eats his breakfast and helps clean the kitchen. There is lots of running outdoors. Smiles and giggles are mixed with a determination to get that awful work task (in his opinion) done, so he can get computer time. We go to bed exhausted, but tired is a really nice feeling after a good day.

A bad day is when I don’t have enough reserves to help him through the day. It may start off with a tantrum over a certain shirt or wearing socks. I take the battles one by one. I likely end up wearing his breakfast, and he gets on the school bus a bit hungry. He self-stimulates more to try and cope; I drink a cup of coffee and put my head in my hands. At the end of that day, I think, “I can’t do this.” But the next day, I wake up and he’s my son, and, of course, I can do this. I can build more good days."


See?! She drinks a cup of coffee for her mini-breaks too!!!! So, I'm hoping this weekend will be full of observation & changes in order to discover what is triggering Ethan in the morning. Hopefully next week will be better.