Monday, February 5, 2018

A Day in the Life of Will

Saturday February 3, 2018
Salem, OR


5:45 AM: Will wakes up and stomps like an elephant from his room to the living room. This is my cue to wake up and start my day. I change Will's nighttime diaper, give him a bag of Cheez-Its (his favorite food) and a bottle of water with a little bit of Miralax mixed in (He had some constipation problems recently and we've found that giving him a small amount of Miralax at the beginning of the day keeps things moving).


6:26 AM: Felicity is awake so I retrieve her from her crib, change her diaper, and give her some milk. She entertains me while I eat my breakfast by acting out a conversation between Mickey and Minnie Mouse. I have no idea what they are talking about. I'm not sure Felicity does either.


8:15 AM: Will has been playing with various toys for quite some time now but he's really settled into building things with his Duplos. He builds boats, planes, robots, cars, houses, you name it. I honestly think he could play with these all day if we let him.


8:33 AM: Not to be outdone, Felicity has dumped all of her Disney figurines onto the ottoman. Right now her favorite character to play with is Buzz Lightyear. She runs around the room holding him and making "whooshing" noises as he flies.


9:15 AM: One of my goals on Saturday morning is to let Ashley sleep in as late as possible. This means I have to keep the kids in the living room at all costs. Often this requires the use of the iPad and repeated viewings of whatever movie the kids are into this week. Despicable Me 3 is the current favorite. You will notice that Will is now drinking milk from a sippy cup. He earns his milk once he finishes his "magic water" in the morning. He demands that all his milk be warmed in the microwave or he won't drink it. He calls it "hot milk". At this point, I've also fed him a cinnamon roll flavored eggo "waffler" and a strawberry pop tart for breakfast. Those are the ONLY things he is willing to eat for breakfast.


11:31: Lunchtime! Ashley has been up for a while and I've slacked off a bit in taking pictures. Felicity needs to go down for a nap at noon so I've corralled the kids at the table for lunch. If you look closely, Will has successfully removed all the pepperoni from his slice of pizza. Felicity meanwhile is eating a piece of Little Caesar's crazy bread, one of the few things SHE will eat these days.


12:59: During Felicity's nap, Will and I play videos games on my Nintendo 64. Will's favorite thing is to watch me play Super Mario. I've basically finished every level in the game and he still makes me play each world over and over. I let him take the control at this point and he was pretty good considering he's only 5 and a half. It doesn't help that the control is about three times the size of his hands.


2:25PM: Ashley bought will a Lego Sphinx set while at the store. He has been using his Duplos and Mega Blox to build his own version of the Sphinx lately so she thought this would be fun. He LOVED putting it together and even wanted to have the Sphinx with him at bedtime.



3:01PM: Will has been inside all day and is practically bouncing off the walls so I suggest that he and I go to the park together. This is us getting ready to leave.


3:09PM: I've talked about this map before in a previous blog post. Will still enjoys running around on it but I think his fixation on maps has kind of passed. Still, we had fun quizzing each other on which states were which before moving on to the playground.


3:11PM: While climbing on the playground Will declares that we should play "Sneaky Thief vs Detective" and decides that I am the "sneaky thief". He chases me around and then we have a dance fight culminating in him defeating me with his electric guitar. That makes more sense if you've seen Despicable Me 3 since that is how Gru defeats the villain, Balthazar Bratt.


3:20: We recently went to eat at The Olive Garden and when our server came to order the drinks, Will looked up at her and said "I want a pepperoni pizza please." We were very impressed that he knew it was time to place an order, even if he was a little early on the food part. While playing at the playground, he said this table was like a restaurant. I asked him what he wanted to order and he said "I would like a pepperoni pizza and hot milk please". He's becoming a natural at this ordering thing.


4:55PM: After playing for a while at the park, Will is finally starting to get tired so we drive home, get in Ashley's car with her and Felicity and head out for dinner. There is a place nearby called Beehive Station which is basically a food cart pod. There is a parking lot and a covered seating area with several different food carts to get food from. Ashley and I take turns getting out of the car to order food so the kids don't have to get out. Once we get our food, we drive home to eat.


While driving home from Beehive station, the following exchange took place.

Ashley: Will, when we get home I'll make you mac and cheese for dinner.
Will: But I don't like cheese.
Me: You LOVE cheese! Everything you eat has cheese in it.
Will: Huh?
Me: You eat pizza with cheese on it, quesadillas, mac and cheese, and cheez-its have cheese in them.
Ashley: And you know what cheese it made from?
Will: What?
Ashley: Milk! You eat cheese and drink milk almost all day long!
Will: (Laughs) Oh! Okay. I will have mac and cheese at home.


6:09 PM: Will eats the aforementioned Mac and Cheese while reading one of his graphic novels. It's hard to get him to eat unless he is focused on doing something else. Books do the trick except sometimes he reads them out loud which doesn't really allow him to use his mouth for chewing. Still, it's easier than chasing him around the house with the fork trying to get him to eat it.


6:32 PM: Ashley has added a new element to Will's bedtime routine. She has started to read out loud from the illustrated version of the first Harry Potter book. It's hard to tell how much Will is paying attention but he says he enjoys it. Yes, he has an iPad in his lap while she reads but again, it is keeping him occupied and seated on the couch. If Will's brain isn't engaged in doing something he really can't sit still.


7:03 PM: Ashley brushes Will's teeth to get him ready for bed. We've struggled to find a solution to helping him fall and stay asleep at night. We used melatonin for a long time but its effectiveness for him started to wear off. His doctor prescribed a medication for him to help him sleep which has worked fairly well. The problem is that getting him to swallow a pill is asking an awful lot. I end up crushing it into a fine power and working it into the frosting of some mini oreos. So far it has been an effective way to get him the medicine. The downside is that we have to brush his teeth REALLY well before bed since oreos are notorious for sticking into the grooves of the teeth. You can see how much he enjoys it.



7:05PM: I read to Will from his children's bible stories book. We are currently in the Old Testament. He's fully capable of reading these stories himself but he insists on me reading them out loud.

7:07PM: After a bible story and praying together, I let Will choose a book to read for five minutes before I turn out the light. Lately he has been choosing to read this collection of Peanuts comics.


In total, Will and I spent almost 13 hours together on this particular Saturday. I know it's probably his favorite day of the week because we get to do so much together. In a lot of ways, spending time with Will is a lot like it is with other kids his age. However, f you look at the photos you'll easily see that Will didn't interact with anyone outside of his immediate family. Obviously it's easier for him to be comfortable in familiar settings and interact with people he knows well. Still, his teachers and his full-time aide have told us that he continues to make progress in interacting with others. Here are a few examples that they have observed as well as one that Ashley saw:

-While getting off the bus and walking towards the school, Will saw two teachers talking and he called out to them "Hey Ladies!"
-In his classroom, Will approached some kids playing with toy cars and started to ask them questions about what they were doing and joined in with their playing.
-In the waiting room at his therapist's office, Will randomly approached two other kids, introduced himself, and started a conversation with them.

It's very promising to see how much progress Will has made in the 18 months since his diagnosis with ASD. It will continue to be something we need to adapt and it does affect our daily routine on a regular basis, but as long as he is continuing to learn and grow and we learning new ways to help him fulfill his potential, each day is better than the last.













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