So Jacob started 1st grade & absolutely loves it! He has tons of homework every week, but we're figuring it all out. Last year he was in his classroom all day. This year, they pull him out for Language Arts & then again for Math. He goes to another room to work with a special ed teacher & one other student. This seems to be making a huge difference. Over the summer, i noticed him coming out of his shell a bit. As I've said before, the summer started off a bit tough, but by the end of it, we were having a great time. Of course, part of the problem was me. I think i worried about us being bored all summer, so i dove right into going places & inviting people over to keep us busy. Well it got too busy. In the beginning of July, we went to Scottish Rite where Jacob received 3 shots of Botox in his right calf muscle. That kid is such a trooper, he didn't even flinch. They even have a lady who comes in with books, movies, etc. to keep the kids more comfortable, if not distracted, from the procedure, but he watched them & didn't make a sound. Anyway, Botox actually deadens the nerves that send messages from the muscle to the brain. Since the brain is what tells the muscle to contract, this communication is halted. So, the muscle relaxes & stays there for several months, depending on the individual. He was sore that evening, but by the next day he was fine. We went back a week later & they put a soft cast on Jacob. They also gave him this brace to wear on top of it which kept his knee straight. Ok, I'm going to try to explain this..... His right foot was casted in a flexed position. The brace would then keep the knee flexed. If you flex your foot, the body's reaction is to bend the knee, less stretch to the muscle. So, if you flex your foot AND bend your knee, you get the most stretch out of the calf muscle. Ideal for medical reasons, not for comfort reasons. Jacob hated it, and he had to try to walk with all of this stuff. I quickly realized that we were going to take this one step at a time. We put the knee brace aside & everyone signed his cast. After a few days, he was better at walking with it. Btw, it was 100+ degrees outside, not ideal for a cast on your leg. So, we slowed down life (better for ALL of us), & he wore his cast for 2 weeks. When we went back to get it off, he had stretched a full 20 degrees. I'm not sure I can explain this, but the Physical Therapist stretches Jacob's foot towards his knee. We started off at a -10 deg. After the Botox, we came to a neutral point, or zero. After the casting, another 10 deg. So, a full 20. Very good results. Jacob was also fitted for a brace, an AFO (Ankle Foot Orthotic, which he picked a picture of a baseball to put on the back. He is walking flat footed, his balance is much better, he is not tripping & falling much at all anymore, & he is very happy with all of this. I'm conviced that this added to his confidence level, & contributed to bringing him out of his shell a bit. We started Miracle League baseball & he looks amazing out there. He seems to glide around the bases now, his walking & running so much improved.
We held a party at our house this summer for our support group CHASA (Children's Hemiplegia and Stroke Association). It was the first time in a few years that we had all gotten together, so we had a huge turnout. I think we ended up with 60+ people at our house, most of whom we didn't know. One thing you learn when you have a child with challenges, is that getting together with other parents in the same boat makes you realize that you are not alone. Also, you know beforehand that you have something in common, something to talk about. We had a giant waterslide, the pool, a baby pool, catered food paid for by CHASA & a sponsor, the Wii in one room, & Rockband in another. Everyone had a blast. Jacob just wandered around & took it all in. He won't talk about it much, but I know he was taking a lot in. All I really wanted for him for now. I'm hoping to have a get together with everyone maybe in the spring, & hopefully at least once or twice a year (not all at my house, lol). I hope that he learns a little bit more about himself each time. Nancy, the president & founder of CHASA, and a friend, told me that her daughter, now 14, went through some of the same things around the same age, but grew out of them. That was great news to me.
First Grade has been awesome. Last year, homework was a real struggle. He & I usually ended up frustrated, & would just get what we could out of him. I've mentioned before that I volunteered with his class last year, so I had an idea of where Jacob stood in comparison to his peers. I have to say, at the end of last year, I was worried. As I said before, he is being pulled out. Not having to compete with his entire class has really helped his confidence level. He has Math homework that he pretty much does himself, I just check it. Some nights we struggle to do his Lang Arts homework, but we get it on Mon & have until Fri to turn it in, so we do as much as we can each night. The more weeks that go by, the less I have to do with him. He is reading! Mainly 3 letter words, but he's sounding them out himself. Last year I could barely get him to read I, a, to, the, etc. This year, he's really trying & focusing, & it's paying off.
The week before last, I got a call from a mom of a student in his class. She wanted to have Jacob come over to play with her son, Ben. We'd never done anything like this before, and I say WE, because I was actually unsure at first. Jacob's wonderful teacher just happened to call me the next evening to talk about how well he was doing. I asked her about this mom & she told me to absolutely take her up on it. So the following Thursday, Jacob rode the bus home with Ben & Ben's mom brought him home later. As usual, I couldn't really get him to talk about it, but he said he had fun. If he didn't, he would have had plenty more to say about it.
This is something that I know I struggle with, & I also know I'm not alone. I try to push Jacob to try new things, but not too far past his comfort level. Brett & I don't always see eye to eye on this. It is a fine line we walk, but we're figuring it out, one situation at a time. I don't want to hold him back, but I don't want to flip him out either.
As of today, things are going well, & that's more than I could ask for. I saw a thing on that little "Mattie Stepanek" on GMA this morning & found myself with tears rolling down my face. If you don't know who that is, Google it. It's worth it.
We held a party at our house this summer for our support group CHASA (Children's Hemiplegia and Stroke Association). It was the first time in a few years that we had all gotten together, so we had a huge turnout. I think we ended up with 60+ people at our house, most of whom we didn't know. One thing you learn when you have a child with challenges, is that getting together with other parents in the same boat makes you realize that you are not alone. Also, you know beforehand that you have something in common, something to talk about. We had a giant waterslide, the pool, a baby pool, catered food paid for by CHASA & a sponsor, the Wii in one room, & Rockband in another. Everyone had a blast. Jacob just wandered around & took it all in. He won't talk about it much, but I know he was taking a lot in. All I really wanted for him for now. I'm hoping to have a get together with everyone maybe in the spring, & hopefully at least once or twice a year (not all at my house, lol). I hope that he learns a little bit more about himself each time. Nancy, the president & founder of CHASA, and a friend, told me that her daughter, now 14, went through some of the same things around the same age, but grew out of them. That was great news to me.
First Grade has been awesome. Last year, homework was a real struggle. He & I usually ended up frustrated, & would just get what we could out of him. I've mentioned before that I volunteered with his class last year, so I had an idea of where Jacob stood in comparison to his peers. I have to say, at the end of last year, I was worried. As I said before, he is being pulled out. Not having to compete with his entire class has really helped his confidence level. He has Math homework that he pretty much does himself, I just check it. Some nights we struggle to do his Lang Arts homework, but we get it on Mon & have until Fri to turn it in, so we do as much as we can each night. The more weeks that go by, the less I have to do with him. He is reading! Mainly 3 letter words, but he's sounding them out himself. Last year I could barely get him to read I, a, to, the, etc. This year, he's really trying & focusing, & it's paying off.
The week before last, I got a call from a mom of a student in his class. She wanted to have Jacob come over to play with her son, Ben. We'd never done anything like this before, and I say WE, because I was actually unsure at first. Jacob's wonderful teacher just happened to call me the next evening to talk about how well he was doing. I asked her about this mom & she told me to absolutely take her up on it. So the following Thursday, Jacob rode the bus home with Ben & Ben's mom brought him home later. As usual, I couldn't really get him to talk about it, but he said he had fun. If he didn't, he would have had plenty more to say about it.
This is something that I know I struggle with, & I also know I'm not alone. I try to push Jacob to try new things, but not too far past his comfort level. Brett & I don't always see eye to eye on this. It is a fine line we walk, but we're figuring it out, one situation at a time. I don't want to hold him back, but I don't want to flip him out either.
As of today, things are going well, & that's more than I could ask for. I saw a thing on that little "Mattie Stepanek" on GMA this morning & found myself with tears rolling down my face. If you don't know who that is, Google it. It's worth it.
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