This is Day 1 in the series: 31 days on Living with ADHD, Autism and Sensory Processing Disorder: What We Have Tried, What Has Worked, What Hasn’t Worked, and Never Giving Up.
For my first post I wanted to describe what a typical day looks like and how we are affected by Mr Rockstar’s ADHD, Autism, and Sensory Processing Disorder (SPD).
I recently started watching the show Parenthood. One of the children, Max, in the show has high functioning autism. In the first episode of season 1 there is a scene where he is trying to cut out paper hearts. He keeps trying to cut, getting frustrated, and then sitting on the ruined piece of paper as if to hide it. He does this over and over. Eventually one of his classmates starts giving him a hard time about wasting paper and calls him “freak” under his breath at which point Max tackles the boy and bites him. The scene was just so eerily similar to Mr Rockstar’s struggles. You can see in Max’s face he is trying as hard as he can to just keep it all together. Life is just too complicated and overwhelming. Did I also mention Max wears a pirate costume to school every day? Mr Rockstar has his own personal clothing quirks I’ll talk about later. The first time I saw this episode it made me cry. For some reason it made me feel less alone.
Today was a good day but it was still exhausting. Why was it exhausting?
- Mr Rockstar was up from 2am-4:30am. Sleep disturbances are the norm for him. He has never had a consistent wake-up or sleep through the night schedule his entire 6 years of life. Everytime I think we are in a good routine it changes. And in case you are wondering, what we can control as parents (his bedtime ritual/time) is very consistent but this doesn’t seem to translate into consistent sleep for Mr Rockstar.
- At 9:30AM Mr Rockstar earned enough behavioral reward stickers to get a new train. He loved it ….for about 5 minutes. Then he determined the stickers applied by the manufacturer were slightly crooked and he had a complete meltdown. Through angry tears he tried to explain to me that if we took the stickers off the train, the train would be sticky (totally unacceptable) but how could we leave them on with them being “SO” crooked. The train sticker debacle continued on and off the rest of the day. He must have revisited the issue 5 times. I also know from experience I will hear about the stickers again in a week, and yet again in 3 months. It will never go away until the train disappears at which point he will remember in 6 months that he used to have a yellow train and be mad at me it disappeared. Sometimes I really wish his memory wasn’t so good.
- At 10:00 AM Mr Rockstar was upset that his reward stickers where not sticking well enough to his reward sheet They were curling up on the edges. Note to self: when I find free time go through all the stickers and throw away the old ones. Stickers do have expiration dates…at least as far as Mr Rockstar is concerned.
- At 11:00 AM we met Hubby at the playground. Right next to the playground is a disc golf course and Mr Rockstar decided he would like to play frisbee with his dad. This caused all sorts of problems. First he had to use Hubby’s frisbees instead of his frisbee which was at home. Second, he was upset whenever his throw wasn’t perfect and was sure it was the frisbees fault. Third, he wanted us to know he should get a point for hitting the frisbee tee basket even if it didn’t go into the basket. Fourth, the frisbee he was borrowing was scuffed along the edges and this was totally unacceptable. He continued to cycle through these 4 complaints over and over until it was time to go.
- At 11:45 AM Mr Rockstar was upset about a sticker he had put on the DVD player in the car. It was starting to peel on one side.
- At 12:10 PM while doing some school work, Mr Rockstar messed up his drawing. This melt down was similar to Max in the Parenthood show in episode 1. Usually this results in Mr Rockstar destroying the entire worksheet/drawing but this time he contented himself with just crossing out the offending portion of the drawing.
- At 12:45 PM we picked up the twins from school. It was field trip day for them and evidently Mr Rockstar had misunderstood and thought he was going with them. He couldn’t even handle the thought that his sisters went on a field trip without him so he eventually just told me his sisters didn’t go, since he didn’t go, and the field trip must be on another day.
- At 1:00 PM Mr Rockstar had a sticker his old teacher had gotten for him from the field trip to the fire department. Mr Rockstar decided to apply the sticker to his carseat arm. However since it was a large sticker and the arms to his carseat are curved the sticker wrinkled on the edges. Mr Rockstar went completely ballistic at this. If it hadn’t been a “good” day he would have actually tried to hurt his sisters or thrown/broken something in his rage, but since it was a good day he just punched his car seat multiple times, screamed, and cried for 10 min. At this point in the day I seriously considered banning all stickers and telling people our family has a sticker allergy. But if it is not one thing it is another.
- At 1:30 PM Mr Rockstar did part of a reading lesson with me. He gets so frustrated when he can’t remember a letter sound. Even though he is 6 there are certain letters he really struggles with. Somedays he knows them, somedays he doesn’t. I finally came up with a game where I lined up a mixture of letter sounds, we took turns calling out letter sounds, and then raced toy cars to the correct letter. If he didn’t know a letter he would follow me and that would automatically start narrowing down the choices for him until he was able to find the correct letter.
- Because of the night waking I was pooped and took a nap with the girls. The afternoon is Mr Rockstars cartoon time just so I can have an hour or two of s…i…l…e…n…c…e
- At dinner the kitchen chairs were not in their usual place. Somehow Miss Princess’ high chair was in Mr Rockstar’s usual place at the table. This was untenable so it had to be fixed before we could have dinner.
- etc, etc, etc
These are examples of why even a good day is hard. So many of these are typical for most kids. What makes the average kid and Mr Rockstar different is the magnitude and frequency of these meltdowns. As I watched him I realized Miss Tomboy would have similar disappointments throughout the day but she would be upset for 5 minutes not 15 or more minutes and then coming back to rehash the disappointment multiple times throughout the day. Also, Miss Tomboy can oftentimes self soothe through disappointment whereas Mr Rockstar struggles to calm down instead of escalate in these situations.
Don’t get me wrong we have good time too. We have laughter, joy, cuddles, and fun. It is just sometimes hard to remember this in the midst of what feels like a constant stream of crying, emotional distress, aggression, irritation, distraction, disappointment, etc.
I would love to hear if this is sounds normal or is surprising to you? Tomorrow I am going to write on being Misunderstood.