Monday, June 7, 2010

One Day at a Time

I don’t want this blog to become a place where I constantly complain about our difficulties, especially when it comes to raising Jack. But, on the other side of it, I want to be honest in my writing and let people know what kind of challenges families of autism face. There are real challenges. Our days are more exhausting than I ever thought they could be.

I wanted to share a typical [weekend] day in our life. Yesterday was Sunday and is the perfect opportunity to show what our life is like.

2:30 am – Jack wakes up, I put him back to bed. Lately he’s been getting much better at going back to his bed when he wakes up in the middle of the night. He still throws a fit and tries to fight me on it, but he eventually makes his way back to his room and (usually) goes back to sleep.

5:00 am – Jack comes back into our room and is awake for the day. This is “sleeping in” in our book. We’re happy with this. Plus, we have to get moving early to go to St. Paul because Lonnie is running a 5K in the morning. After the 5K, there will be a parade and food vendors, and other activities going on. Immediately upon waking, Jack asks us what the day holds. He starts with breakfast –

“and after breakfast?”

“We will get ready.”

“and after we get ready?”

“We will hang out for a little bit and then we will drive to St. Paul.”

“and after we drive to St. Paul?”

“We will go to daddy’s race and watch him run.”

“and after daddy’s race?”

“We will watch the parade.”

“and after the parade?”

“You and daddy will drop me off at Trader Joe’s and then you guys will go to a park.”

“and after the park?”

“Then we will get lunch.”

“and after we get lunch?”

“Then we will go home.”

“and after we go home?”

…..and on and on and on. I would guess that this script is repeated at least 20 times a day. All day long. We usually are planned ahead by at least 24 hours. Jack has to know exactly what is coming up and when. And yes, we’ve done picture schedules. The problem with a physical picture schedule is that Jack becomes absolutely obsessed with it. And then he can’t think about anything else. And then if, God forbid, we have to CHANGE the schedule, it makes that transition that much more difficult – because it wasn’t on the schedule.

7:00 am – We head out the door and get in the car. Jack wants to buckle his own seatbelt. I oblige and let him try. He gets frustrated and starts throwing a fit. So I try to help him buckle it and the fit escalates. He finally gets the thing buckled and the fit is over.

7:05 am – We have to get gas before we go to St. Paul. This wasn’t on the schedule. Jack is OK with it, but insists that we don’t go through the car wash. He is very freaked out about the car wash and gets nervous any time we’re within sight of one. We reassure him multiple times that we aren’t going through the car wash. He eventually believes us.

7:45 am – The car ride has gone incredibly smoothly so far. Jack brought a fire truck to play with, and it has occupied his time more than we thought it would. But 45 minutes or so into the car ride, Jack gets antsy. He starts yelling/screaming/making random noises. Not necessarily a fit…and he’s not really angry or upset. He’s just making noise. A lot of it.

8:20 am – We make it to St. Paul. The car ride went so well, we’re waiting for the other shoe to drop. It didn’t take long. As soon as we get out of the car, Jack is whining that he has to go potty. He went right before we left the house, so we know that he doesn’t have to go that bad. One of Jack’s “quirks” is that he insists on going potty EVERYWHERE. It doesn’t matter if he just went 5 minutes ago. He has to go potty to each place we visit. So, we tell him that we’re going to wait to go potty until daddy starts the race. There’s port-a-potties everywhere…but I would like to avoid one of those if we can. I am hoping to go to a coffee shop or something. He starts to get upset about it. Uh oh.

8:45 am – Lonnie gets all registered for the race and is ready to go. Jack starts screaming that he has to go pee. Louder and louder. So I say “fine” and set off to find a bathroom. A real one. We run into a row of port-a-potties and he insists that he wants to go there. That he HAS to go NOW. I know that the coffee shop is still a few blocks ahead, so I give in and agree to the port-a-potty. Only problem is, there’s a line. All of them are locked. So we stand and wait. Jack starts throwing a fit. I tell him that we have to wait for a potty. I tell him that we can go find another potty where he won’t have to wait. He starts screaming at the top of his lungs. I grab his hand to walk to another row of port-a-potties. He pulls away from me, screaming, and then collapses on the ground. In the middle of the street. I pick him up and move him to the sidewalk…all the while he’s screaming. He’s screaming so loudly, that Lonnie could hear him – a block away. Great.

9:00 am – We finally find an open port-a-potty. Jack touches everything and finally pees. Praise the Lord for hand sanitizer.

9:15 am – After watching the little kid’s race (so cute!) it is time for Lonnie to run the 5K. Jack is tired of waiting (a whole 15 minutes! How could I?!?!) and starting to get upset. The race starts and we see Lonnie pass us. We clap and yell. Jack immediately starts crying and screaming. I don’t know why. He finally tells me that he wants daddy to be done racing. I tell him that we have to wait for him to be done and ask him if he wants to find some food while we’re waiting. He screams and cries some more, but eventually agrees to go find some food. I grab the wagon and we go walking down the street in search of some food. I hope there’s something there that he’ll eat.

9:30 am – We finally find something that Jack is willing to eat – donuts. The little donuts, like at the fair. He is happy about that. So we buy a bag of donuts, but Jack starts yelling, once again. He can’t see how the donuts are made. There is a donut stand at the fair where you can see them frying the donuts and watch them flip over. Jack thinks that every donut stand MUST do this. So he is very upset that this particular donut stand doesn’t have a place where you can watch the donuts be made. So he yells. And yells. My patience is quickly going away. I get him to calm down about watching the donuts be made and then he starts complaining that the donuts are too hot. Of course they are.

9:45 am – We get to the finish line to watch Lonnie finish the race. We see him run by – we cheer and clap. Yay! And then the crying and screaming begins again. Why? Because he can’t run with daddy. He yells/screams/cries until Lonnie finally makes it to where we are on the sidewalk.

10:15 am – After walking up and down the sidewalk for a little while, finding a good place to watch the parade, we find a decent shaded spot. The parade was supposed to start at 10 am. We wait. And wait. And wait. Apparently we’re quite a ways down from where the parade started. It’s almost 11 by the time we see the parade. Jack spends a good portion of the time with his hands over his ears. We manage to leave shortly before the parade ends…we don’t want to try to leave there when everyone else is leaving. Jack throws random fits every now and then while sitting in the wagon. We can’t really hear him – that’s probably a good thing at this point.

11:45 am – The boys drop me off at Trader Joe’s so I can get some groceries. Why I am shopping alone? Because Jack can’t handle Trader Joe’s. We’ve tried several times to go there with him, but each trip turns into huge meltdowns. Not sure what it is about that store, but it just doesn’t work for all of us to go. So Lonnie takes Jack to a nearby park to play while I shop. Jack refuses to eat something for lunch, because the park came FIRST on the schedule and THEN lunch. Everything has its place.

1:00 pm – I’m done shopping, the boys come pick me up. Jack gets upset because I don’t have a “surprise” for him. Nothing new there.

1:20 pm – We find a Sonic Drive-In and get some lunch. Jack eats most of his lunch and then falls asleep for the rest of the drive home. I fall asleep too. Exhausted.

2:30 pm – We finally make it home. I unload the groceries and we all just hang out for a little while. I make sure to spend some one-on-one time on the floor with Jack and we play with a game. We try to keep it as low-key and calm as possible. I inform Jack that later, daddy and I are going out on a date and someone (that he already knows) is going to come watch him while we go out. He seems totally OK (and even excited) about this.

4:30 pm – The babysitter shows up. She is sweet and wonderful and Jack already likes her. Lonnie and I start to head out the door and Jack loses it. Starts crying and hanging onto my leg. I manage to pry him loose and walk out the door. Jack stops crying shortly after we leave. Lonnie and I watch a movie and eat dinner in silence. We let out a sigh of relief. The relief is short-lived, however, because we know that bedtime isn’t too far away.

7:30 pm – We get home and let Jack know that bedtime will be starting in 10 minutes (we use the big hand on the clock to let him know when it’s time to go potty, get jammies on, etc.). It’s the same routine every night. We’ve been doing this for years. And yet, I could count on one hand the times when bedtime has been tantrum-less. It’s almost always a fight. So, we go through the regular arguing about going potty and getting jammies on and brushing teeth and staying in bed.

8:00 pm – He’s in bed. He stays in bed. Lonnie and I collapse on the couch.

8:30 pm – Both Lonnie and I fall asleep on the couch.

9:00 pm – We go to bed.

2:45 am – Jack wakes up, and it starts all over again!

While some might say that this was an exceptional day because we made a trip out of town and had a babysitter come over all in the same day – I would have to disagree. Even on days when we only have one errand to run, Jack’s behaviors and actions are pretty much the same. I know that part of his behavior on Sunday was related to the large amount of people and noise that we were surrounded by, but I believe that there are times when Jack needs to learn how to deal with those types of situations. We can’t keep him in a bubble and protect him from the sensory-overloading world. So, for now, we do the best we can and try to keep our sanity intact while doing it. At this moment, I don’t know if we’re succeeding at that!

1 comment:

Givinya De Elba said...

You guys are amazing. Jack is a sweet little guy, and I'm glad to have met him on your blog. He does need so much of you, and wow - you're doing an awesome job. Every. Single. Day.

You're in my thoughts, and since it's getting so late, I think its time to head for bed, read my Bible and send a little whisper to heaven for you, Lonnie and Jack. I guess you're just getting up on Tuesday morning about now, so my prayer will be for a great Tuesday and energy for the rest of the week!