April 2nd is World Autism Awareness Day and to help recognize it, Peterborough mother Kate Wells has given PTBOCanada an amazing window into a day in the life of living with her 10-year-old autistic son Aidan and how the family copes on a daily basis. Kate, her husband Jason, daughter Emma and Aidan were recent beneficiaries of the OCD4SH campaign lead by I Mother Earth's Brian Byrne and his company OCD Collective, meaning they will be participating in a three day Autism Family Surf Camp held by Surfers Healing's Izzy and Danielle Paskowitz in San Diego, California.
Here's a diary Kate kept for us of one day in the life of Aidan...
1 a.m. “ MOMMY!!!!!!!!!” I wake with a jolt and go into my son's room before he wakes anyone else up— before he screams so loudly that all the neighbourhood dogs start barking. I crawl into bed with him, and we both settle back to sleep.
3 a.m. "TV please. TV on." "It's too early buddy, sleep first," I reply. I hope to God that Aidan, who is 10 years old, is satisfied with this response and goes back to sleep. I am so tired, and I know I'll need every bit of sleep to get me through this day. Thankfully it works, and he eventually drifts back to sleep.
4:30 a.m. I wake up to Aidan under the covers playing with my toes. He calls them "babies" or "Gary", the snail from SpongeBob. (Don't ask.) I have become so used to this that somehow, out of desperate need for any amount of sleep, I've managed the ability to sleep soundly while he manipulates my toes.
5:15 a.m. "I hungee." I know from routine that at this point trying to distract him is pointless. He is awake and squealing loudly. He wants to start his day. Which means, we'll all be starting our day. I shuffle slowly to the kitchen and throw some waffles in the toaster. This will be his first breakfast. The second one, likely eggs, will come later on. His little sister, Emma, who will soon be 8, is reluctantly awake and has now settled on the couch watching TV under a blanket.
6 a.m. "Emma play for me." Aidan has recently become obsessed with Lego. Other than Super Mario, it's all he talks and thinks about. He wants his sister to play Lego with him. She just woke up, and I can tell she just wants to rest. But he will not settle for anything else than what idea he has in his mind at the moment.
So I say, "Mommy will make my coffee first, then I'll play with you." "NOOOO!!!! DON'T WANT TO!" He screams and stomps around the house. Slams doors, throws Lego pieces across the room—just missing his sister. Emma continues to watch TV through all this, barely flinches. This breaks my heart to think that this outburst is just as common as a cough would be in any other house.
6:30 a.m. My coffee is made. I sit down down to have a drink while Aidan has collected himself enough to play on the computer in the downstairs office. I am so unbelievably tired. My legs and arms feel like cement blocks.
7 a.m. Aidan comes upstairs and yells at the dog (who is sleeping quietly, minding his own business). He says "school". It's Saturday. I take him to the fridge to show him his daily schedule. He screams, "Want school!" Sigh. I try to distract him with anything and everything. It's not working. "GO CAR!!!!"
Car rides have always been soothing for him when he is stressed or when his anxiety is high. Between my husband and I, we sometimes spend the weekends tag team driving him all around the city and surrounding areas. Open roads are best, because Aidan gets panicky with the stop/starts in city driving and will yell if a car is following too close behind.
7:15 a.m. The last thing I want to do is shower, get dressed and go out for a car ride. But Aidan has now become fixated. He is pacing the floors, on his tippy toes. He does this when stressed and anxious. He is repeating "car ride" over and over and over.
My daughter can't hear the TV and although she is very patient with him, she is tired and wants to watch her favourite TV show. She complains. This sends him into a rage. He needs to let it out, before he can carry on. He is past any point of distraction. He tries to grab anything/everything in his reach. The first casualty is a glass that is sitting on the counter. It shatters on the floor. This startles him and he knows it's wrong. It fuels the rage. I guide him to his room where it's quiet and "safe".
He is screaming so loudly, my ears are ringing and he is covering his ears. He flails around the ground, rips all the blankets and sheets off his bed. I am there to make sure he doesn't hurt himself. He will bang his head off the wall, floor, hit himself, bite himself. He attempts to come at me. Kick me. Bite me. I have been trained in proper restraints if necessary. Something I had to learn in order to protect him and also myself. Important as he gets older and almost as big as me.
What comes to my mind is, I'm just thankful that it's still cold out, and our windows aren't open so the neighbours won't hear.
8:30 a.m. He is calm and hungry. Breakfast number 2 is now ready. I promised if he ate, he could go for a car ride.
9 a.m. I make another coffee and then we leave for the first car ride of the day. He is happy and excited to drive. I turn the music on, and we go. He is quiet and content in the car. Through my yawns, I am able to relish in the peace and drink my hot coffee. It's a treat. We drive along the beautiful scenic River Road to Lakefield, taking our time. We drive to Bridgenorth, then back to Peterborough. I'm free to sing along the way. We chat a bit, but mostly Aidan looks quietly out the window. I can't help but wonder what he's thinking.
10:30 a.m. I'm exhausted. I need to home home. Can't drive anymore. I pull into the driveway, he refuses to get out of the car. "CAR RIDE! WALMART!" My husband comes out and says "I'll take him. We need to get some things there anyways; he can come with me." Off they go. Finally, I can have some time with our daughter who now wants to play with me.
11:30 a.m. I receive a text from my hubby: "Big meltdown at Walmart." Although he had wanted to go there, Aidan had become overwhelmed and agitated by all the noise, chaos and overall stimulation there and couldn't hold it together any longer.
It's very common to be at a store and witness a toddler having a temper tantrum, flailing, crying on the ground. Not so much with a 10-year-old. It's an entirely different scene, response. Some people give a compassionate, understanding nod. Others stand watching, horrified, while saying not so discreet, judgemental comments to each other. Which makes it worse, as my son is acutely aware others are watching—knowing this is not the “norm” for kids his age, but he's unable to control himself. Luckily my husband is strong enough to pick Aidan up off the floor and quickly direct him out of the store.
They leave the store, Aidan calms down, and they come home for lunch. Even though he continues to ask for car rides.
1 p.m. He's a much happier, calmer boy, playing Lego with his sister. Up until a year ago, he didn't play. Wasn't interested in toys. Wouldn't engage his sister much. So these moments are absolutely precious.
2 p.m. Emma's friends come over and want her to go to their house to play. She is excited and deserves to go out to have some fun. She spends a lot of the time “tip-toeing” around her brother, because the slightest noise, giggle, chatter, can send him into a meltdown. This is hard for a 7-year-old girl!
2:30 p.m. Aidan is pacing through the house again. Asking for Emma. Nothing is making him happy. Nothing is holding his interest. It doesn't amount to much, just the usual screaming, the odd crying episodes. My husband comes upstairs. We haven't been able to talk hardly at all. Except for texts. During the day, it's our source of communication.
3:15 p.m. My turn to take him for another car ride. It will be the final one of the day. More or less, just to keep the peace. I have been awake for far too long, and I am running out of steam. Aidan's happy. And he's also getting tired. Being at such a "high anxious" state all day really tires him out.
5 p.m. Dinnertime. Our day is settling down. This is his best time of the day. He is calm and wanting to relax and watch TV and play on the computer.
6 p.m. “I sleep for you”. Aidan is getting very tired and it's very difficult trying to keep him awake. We try to play Lego for a bit, watch a movie on the iPad. Works for a bit.
6:30 p.m. “I SLEEP FOR YOU!!!” I take him to get his PJ's on, we hang out in his bed, watching TV. He wants to watch CHEX Newswatch (his fave). But it's Saturday and our PVR is downstairs. I am able to distract him, and he happily moves onto something else.
7:30 p.m. Aidan is sound asleep. For a 10-year-old, that's extremely early. But he's had a very long day, and he uses a lot more energy than most kids his age!! Now it's time to clean the kitchen, do the chores—endless laundry that was neglected during the chaotic day.
8 p.m. I snuggle with my daughter before she goes off to bed. It's her time to talk as much as she wants, giggle and be silly.
9 p.m. Hubby and I crash on the couch, watching mindless TV—unwinding from the day.
11 p.m. Time to go to bed. I should have gone to bed sooner, I'll regret it later I'm sure.
11:15 p.m. I lay down to sleep:) zzzzz
11:30 p.m. “MOMMY!!!!!!!!!!!!!!!!” I'm up. It's Aidan.
For more on day to day life dealing with autism, follow Kate Wells on Twitter.