Aspergers is 24/7. That's our reality. It just is.
Many times I have had people close to us say they didn't realize how it effects our family on a daily basis. They may see Jacob in short spurts or little glimpses, and they think all is fine. But Aspergers is always there, good and bad.
Here's a glimpse of a typical day for us. A day in the life of Aspergers.
Last Saturday was a busy day for us. I knew we would be running from the start, which always makes for a crazy day for anyone, but when you have no idea how your child is going to respond, it makes it even more crazy.
7:00 am: Jacob is up and raring to go. He is busy writing signs for his candy stand he is planning on having at our neighbor's garage sale. The relentless asking of "When can I have my candy stand?" starts. Over and over, he asks the same question. This is typical for Jacob. I have read that many people with Aspergers have limited short memory. Jacob can ask me the same question easily twenty times in a ten minute time with no regard to the fact he has already asked.
8:00 am: The garage sale and candy stand are going strong. For being socially awkward, Jacob does a great job of approaching people and kindly asking if they would like to buy some. Maybe he is a little too persistent as I see a few people annoyed that he is following them around as they try to shop. He totally misses the social cues that these people are not here for the candy.
9:00 am: Jacob's old crossing guard from school stops at the garage sale. She is such a sweet older woman who used to greet Jacob each morning with "Well good morning, Mr. Jacob". I am thankful that he waits until she is out of ear shot before he asks me about her hair. "Mommy, Ms. A's hair is very different!" "Maybe his social skills classes are working", I proudly think grateful he didn't mention the obvious large gray wig upon Ms. A's head.
9:45 am: Jacob is mad. I am closing up shop on his candy stand as it is time to head to his social skills class. He doesn't want to leave his friends and for a second I think about letting him skip. Then I think about the non refundable $50 I pay each time and I guide him to the van with his dad. I am surprised there is no meltdown, but am guessing it was warded off by promises of doing his candy stand later in the day.
11:00 am: Jacob and his dad return from his class. I am always anxious to hear all about it. Today's topic was about "motions" Jacob tells me. I learn from my husband it was "E-motions". Jacob begins to tell me how his words were scared and disappointed and he is to act them out for the class. He shows me the face he uses for both, and there is no noticeable difference between the two. Apparently Jacob had a really hard time with the class. I am a little taken aback. I have talked about emotions to death over the years with Jacob and I always thought he "got it". This was something that I didn't think fit Jacob about being an Aspie. I guess I was way wrong. The teachers had them watch videos with no sound and they were to talk about the feelings of the characters. Jacob had no idea. He also couldn't comprehend that things he does effects how other people feel. It explains a lot and has given me a focus for the summer.
11:30 am: We arrive at the portrait studio to have the kids pictures taken. It has been well over a year since I have had any photos done, but I am not worried about how Jacob will react. Last time he really hammed it up and loved it. As we are settling in, I notice a large extended family getting their pictures taken.
11:35 am: Boy, am I wrong. Jacob is adamant about not getting his picture taken. I am guessing it stemmed from the loud cheering coming from the group before us. They were trying to get a small boy with Down Syndrome to smile, and with each cheer, Jacob covered his ears. I am assuming Jacob thought this was part of the deal and this large group would be cheering for him as well.
11:40 am: Somehow we convince Jacob to make his way back into the studio, but upon seeing the flashing light, he bolts. My husband gives chase as I explain to the photographer that our son has Aspergers. Thankfully she is patient and after a few more times of Jacob running and a lot of coaxing, he comes back with the stipulations that the photographer stands a good 6 feet away. It takes a while, but he begins to relax. I realize everything will be ok when he announces out of no where to the photographer, "My neighbors are having a garage sale today." My son loves to talk to people, but never quite knows the right words at the right time.
12:00 noon: As we are going though the photos picking out the very few that are worth keeping,Jacob is running around the studio chasing his baby sister. I see all the other families of younger children looking at my son. I finally settle him in on a couch and he sits next to a boy a little older than him. I am proud when I witness him sharing his Nintendo DS with the boy and striking up a conversation even if it is about what is on the screen.
12:30 pm: We head to a local BBQ joint for lunch while waiting for our pictures to print. Again as we wait in line, Jacob starts with the relentless asking of the same question over and over. This time he is inquiring as to if he can have the macaroni and cheese. My patience is wearing thin as I try to read the menu myself while repeatedly answering yes to Jacob's macaroni request. You would think by now he would know the answer since he always gets the macaroni and cheese here.
12:45 pm: Jacob is finished eating first and gets up from the table. Without making too much of a scene, we try to get him to sit back down while the rest of us finish eating. From experience, we know that is an impossible task for Jacob to just sit. Instead he begins a pretend game of baseball and I am thankful the restaurant is almost empty. My husband gives him a task of getting everyone at the table ice cream. A man walking past Jacob makes a joke about his ice cream and Jacob hurries away. When I ask him why he didn't respond he tells me, "Mommy, that man is a stranger!" The stranger danger talks have apparently sunk in, yet understanding the difference of just being polite has not.
1:20 pm: We are driving home with both kids talking non stop in the backseat. It is a rare occasion that Jacob is quiet. I am tired and wishing this was one of them, yet he continues to talk non stop wanting us to answer animal game questions. I am thankful when my husband agrees to do it this time.
1:30 pm: Pictures in hand, we pull up to our house. Jacob has strict instructions to go inside and get dressed for his baseball game before starting his candy stand, yet he runs instead over to our neighbor's house where the sale is still going strong.
3:15 pm: We are at Jacob's baseball game and he is up to bat. If you know my son, you know that baseball is pretty much his life and one of his obsessions. He can copy every batting stance of his favorite team. He's a great hitter, and I am no longer a nervous wreck at his games worried he will get upset by the call or the fan's reaction. I notice as he is up to bat that his stance is not his but instead one of his favorite players. After two missed balls, I call out to him to "Be Jacob" instead, and sure enough he is able to smack the ball and get on base. I remember how last year at this time he would get upset if the crowd cheered, where now he is all smiles and gives me a thumbs up from second base.
5:00 pm: The game is done and most everyone else from the team has left. It is just our family and one other player and his mom. They had provided drinks and snacks for the team that day, and the mom suggests to her son that he should dump the ice water left in the cooler over my husband's head. Being the coach and a good sport, my husband is all for it, and as the ice water comes down, Jacob starts yelling. He is mad that his dad's shirt is wet, and before I can begin to reason with him, he takes off running the length of the baseball field right for the road.I hate that he is a runner when he gets scared. I never know when he is going to stop. I am thankful when he stops short of the street. We all just stand waiting, not sure how to react as we don't want this to escalate any more than it has already. The other mom offers to talk to him, and we agree. Sometimes things come better from someone other than your parents. As she takes off to talk to Jacob, her daughter asks me, "What's wrong with him?" Hmm... how to answer that. Unsure, I just let it go and am happy when Jacob returns to us calmer than he left.
5:30 pm: We are home and Jacob is playing his Wii. As he plays he makes the same "eeeeeeee" sound he has made for years when he is deep in concentration. He is calming down for the day. I have become so accustomed to this sound I don't even notice it anymore. I think it is calming for me as well, because I know Jacob is peaceful.
7:00 pm: Dinner. Nothing special, just frozen ravioli with canned sauce. I never know how dinner will go. Sometimes all it takes is Jacob not liking the way the food looks on his plate and it can start a huge meltdown. Tonight could be one of those nights, as he begins the meal with "ewwwww....I don't like this green thing!" referring to the spices in the sauce. I do not give in, and insist if he doesn't like it, he needs to pick it out himself. This meal is just like every other with Jacob taking a bite and then standing and pacing the room, only to return to take another bite and pace again.
7:45 pm: Getting Jacob in the shower and in his pajamas is a nightly fight. Tonight is no different as he is playing baseball in the living room completely naked except for his blue knee high baseball socks. My husband and I both prod him trying to get him into the shower. Finally he makes his way to the bathroom, only to hear him say, "Mommy! I need your help!" He can't get his socks off. Socks are a daily struggle in our house. He can't get them on, can't get them off, and can't ever get them just right because of the seams. He is desperately in need of new socks, but all the ones I bring home from the store go unworn. Instead he wears the same few that don't bother him and are paper thin on the balls of his feet from walking on tip toe.
8:20 pm: Jacob is finally in the shower.
8:50 pm: Jacob is finally out of the shower. I explain to him how we have just wasted over an hour trying to get in the shower and then taking his shower. Oh, how much extra time we would have if this wasn't an every night occurrence.
9:00 pm: PJs are finally on and the night is winding down. Jacob's mind is racing as he is worried about the weather. "They said there is a chance of rain. Is it going to be storms?" he says as he makes a whimper sound. We tuck him in bed and kiss him goodnight reassuring him that the weather is fine.
9:05 pm: I am settling on the couch to relax for the first time, when I spot Jacob standing at the end of the hallway. He is whimpering again about the storms. Storms that more than likely won't even come. I reassure him again, and send him to bed.
9:06 pm: Again out of bed and crying this time worried about the storms.
9:08 pm: Out again and scared there could be storms.
9:10 -9:40 pm: Out... in...out...in...out...in, you get the idea.
9:40 pm: I convince Jacob to put on his earphones to drown out any storms that may be lurking in the area. I know the forecast is for some rain, but I am hoping it misses us as I am ready for the day to end.
10:35 pm: I hate that every night my son is a bundle of nerves trying to clear his mind of all the things that scare him. I am thankful he is finally asleep, and I am exhausted as well.
Some of our day is very much typical of Jacob's age. Some of it is just Jacob. But yes, some of it is clearly Aspergers. Some days are better and some days are worse. Today was one of the better ones as there were no major meltdowns. But tomorrow's a new day, and we never know what it could bring.
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