So really feeling the need for a blog. When I first decided to get a blog, I didn't know what on earth I was going to write. Once I started writing Jacob's story, it brought up all kinds of emotions. Even some that I didn't realize that I had. Over time I realized that this blog is therapy for me. I can write about the emotions, the moments, good and bad, happy and sad. I think I need to remember that, and take the time out of my life to write. Not every day, but at least once a month would be helpful.
I realized recently some big things when it comes to Jacob. My "venting" blog a few months back got a lot more attention than any of my other blogs. I wasn't sure why at first, but I now know that looking at happy pics and hearing happy stories is something we see all the time. Reading about someone's struggles with having a child with disabilities is different. Some can relate, some cannot. Which brings me to my realization. It is hard. Brett and I struggle on a regular basis with Jacob's behavior. I think I talk so much about how well he is doing and the milestones he is reaching, and I don't mention the bad. I am so proud of him and his accomplishments. He has come so far in this life, and he is amazing. But he is also very difficult. It changes our entire family dynamic.
Once we put him on medication in Kinder and found his school, things just started moving right along. His behavior was better, he was progressing academically, the "village" we created for him was working, and it was working well. I am a positive person, at least I try to be. I am a "glass half full" person. I like to talk about the good, the happy. I laugh when I am nervous, I use humor to lighten the mood. So admitting to and dealing with how hard it can be isn't really in my nature. I know I have to stay positive and look at the good, for my family, for Jacob. Plus, who wants to hear someone wallow and complain all the time? I know I don't enjoy that, so why put others through it?
That being said, lately, it has been a real struggle. I think Jacob had a growth spurt over the summer, and that usually means a change in his behavior. This time it did for sure. Our vacation to CO really drove home how different our lives are with him as a member of this family. How it affects not only me, but Brett, our marriage, Luke, Ryan, their relationship, and their relationship with their older brother. My relationship with Luke, my relationship with Ryan. Brett's relationships with all three boys, and so on. It's changed. Don't get me wrong, sooooo many ways for the good. Jacob teaches us all so much. I look forward to watching the lessons unfold as these boys grow together. What kind of men Luke and Ryan will be as a result of being Jacob's little brothers. The patience, caring, and most importantly- understanding.
Our vacation was a bit different than other family's. From Jacob struggle to get to sleep, stay asleep, and sleep in which made him very tired, which makes his behavior more difficult for him to control. To the things that Jacob's just not able to do, but Luke and Ryan are. Brett and I end up finding ourselves splitting up, so I can keep Jacob content while Brett does stuff with the other two. We've talked about how L & R shouldn't have to miss out on things, because Jacob can't or doesn't want to do them. On the other side, Jacob shouldn't be pushed into something he doesn't want to do because his brothers are able to. It's not black and white, there are definitely shades of gray. It helps to have just one more person there, someone who "gets" Jacob, to hang with him so that I get to enjoy those things with L & R too. I think as they grow, we will work on this, one step at a time. We've talked about taking L&R to Schlitterbaun while Jacob's at camp next year so that we can all really get everything out of it. This past time, Jacob was incredibly tired and stressed on some of the rides, and didn't want to do some, so we had to push on through and change it up. Thank goodness the amazing Aunt KyleAnn was with us to help. Otherwise it could have been a total disaster, lol.
On to my next realization. When I mention "get" Jacob, I have recently realized that this is something only a few people understand. I forget that I know that child inside and out, backwards and forwards, inside outside upside down. If he flinches, I know why. If he's nervous, I know why. If he's upset, I know why and how to fix it. But that's my job. I have to remember that all of the other people in Jacob's life don't have that. Some "get it" better than others, but very few really "get" him. Plus, people are all different. They have their own stories, their own backgrounds, their own experiences- or lack thereof. For example, on July 3rd this year, we and a group of friends took all of our boats to the lake. A friend of a good friend, whom we had never met, was a single guy, no kids. Right about time to pull anchor and head in, Jacob loses it. I immediately get him out of the water and get him settled. He is finally able to tell me that this guy dunked him. I guess Jacob was going around to all of the guys and dunking them. The rest of the guys know Jacob and just took it. This poor unsuspecting soul (who had also had enough beer for the day) didn't know what he was getting himself into. When I say Jacob "loses it", this is not something that everyone has seen him do, in fact very few people have. Which is a good thing. And the ones who have "set him off" never do it again. (Other than his dad and brothers, but when you live with him, it's almost impossible to not "set him off" every so often.) If I could try to describe it, he screams, cries, punches things -like the table, wall, couch, etc. and sometimes cusses. He is incredibly angry and will let you know if it's aimed at you. Basically, you do not want to be on the receiving end. I have worked really hard with him and it gets easier each time for me to calm him down. I talk to him after, about the appropriate way to react and how to handle it. I will say the tantrums have gotten shorter and less frequent over the years. I do get angry when people 'set him off', but I'm learning to be more understanding of other people's perspective.
Yes, Jacob has special needs. But that doesn't explain everything to people. Especially people that don't know him. Whether it's family, friends, friends of friends, or perfect strangers, I can't protect him from everybody, and I can't make everybody understand. I am learning to accept that not everyone is going to "get" him, and that's ok. I can't expect everyone to. I have to learn to take it in stride, teach Jacob to not be afraid to talk about it, not be afraid to stand up for himself. He gets asked about his braces (hand and foot) all the time and he gets soooooo tired of it. I explain to him that it's just part of his life and it's going to continue to be. He can't get upset every time someone asks or he'll just be upset all the time. He's going to have to find a way to deal with it. I tell him he can say whatever he wants, from "it's a handbrace", or "I had a stroke", or even "I broke it skydiving" or "an elephant stepped on it". Whatever he wants, totally up to him and what makes him comfortable. He has such an amazing sense of humor, I can't wait to hear what he comes up with in the future. There is a surgery that can straighten out his hand, make it flat. Won't make it "work", but will take away the need for the brace. He asks me about the surgery all the time and can't wait to get it. He knows he has to be done growing, so he looks forward to that.
So, I'm learning, we all are. To not feel the need to explain everything to everyone. The other night at Ryan's baseball practice, I'm talking to some of the moms and I look over to see Jacob laying on his back in the grass, knees up, and farting..... loud. I am horrified, but I just told him to get up and come sit by me. He is laughing hysterically, I am embarrassed, and I have no idea who noticed. But I moved on. Those who need to understand will. Either by asking me, or watching him, or whatever. Not every stranger who sees him needs an explanation.
Jacob's been struggling with 4th Grade. I had heard the 4th Grade teachers were tough. I subbed a few times for different 4th Grade classes and I was amazed at the discipline. Those kids knew what was expected of them, and they did it. He has 4 teachers for the first time, which I think is really overwhelming to him. He has to trust people, feel safe with them. I think it's hard to take directions from adults he doesn't really know all that well. I had a meeting with them all at the beginning of the year, I always do. I feel like meeting me face to face and letting me tell them about the Jacob I get at home helps them better understand. So we're getting through it, together. He has settled in a bit, much better than where we started off the year. He also has a male teacher for the first time, which I think is a pretty big adjustment for him. He's a trooper, and we'll keep movin. After all, school's only going to get harder and more crazy as he gets older. I want him to try to learn to adjust and cope as best he can. That's a big thing for him, and for me. We recently got a salt water aquarium. It is super cool and the boys (all 4 of them) love it. When Jacob comes home from school, he sits in front of it, watches the calming movement, and decompresses.
The "A-ha" moments. I don't know that I've ever written about these, but I'm going to now anyway. Those big moments, that I will never forget. The day, when Luke was a toddler, sitting in the bathtub playing. Jacob would have been probably about 4, and he turned to me and said, "How come he (Luke) can use two hands?" My heart melted. I tear up now remembering. Since that day, Jacob and I have had many honest open talks about him, his stroke, why he can/cannot do certain things, why he has to take his meds, why he can't control his behavior, etc. etc. Then the day at swimming just a few years ago, I'll bet Luke was about 5, and he was sitting with me, watching Jacob swim. He turned to me and said, "So Jacob can only us one hand?" I said, "Yes, he had something called a stroke. His brain got hurt and so he can't use his hand." With the sweetest sad face I have ever seen, he says, "awwwww, that's sad, is that why he gets wound up?" I manged to get out "yes". That was Luke's moment. Recently, Ryan has found himself getting very annoyed at Jacob's behavior. He told Jacob the other day, "Jacob you are really annoying me." I waited until I had Ryan alone and I had a talk with him. For the life of me I can't remember the exact words right now, but I was explaining to Ryan that Jacob had a stroke, and his brain was hurt, and that it meant he had a hard time controlling his behavior. I swear he got that same sweet sad face. He asked a few questions and seemed for the first time to even realize that there was something "different" about Jacob. Oh the innocence of childhood. These amazing boys have so much to learn about themselves, life, and each other. Hell, I'm still learning, and I'm so old Luke asked me the other day, "Mom, back in your day, did they have school buses?" Geez.
Luke. Ahh Luke. My sweet sweet boy. He has this natural ability to just understand and look out for his big brother. We took him golfing with us recently because I wanted to spend time with just him. I wanted him to get that special attention. Jacob demands so much of my attention and Ryan.... well he's 5. Sweet, loving, sneaky, stinker Ryan. My point being, Luke got some much needed, much enjoyed, much deserved attention. :-)
Ryan is learning Spanish at his new school. Well trying. I really think he would rather be playing a sport 24/7 than do anything else in life. Eat, sleep, work. Not for him, just running, kicking, hitting things with sticks. Allll the time. We've been working on his letters in English, and that seems to be helping him do better in Spanish. So funny to hear him say, "Adios!"
Luke keeps using "in an ironic twist" in his every day conversation. Correctly.
The other night we were doing Jacob's Social Studies homework. Talking about Producers and Consumers. Jacob said Producers make things like concrete. I agreed. He looks me in the eye, and with a serious adult-like expression says, "We're livin in a concrete world right now, you know that right?"
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