Jake started some new more engaging therapy a few weeks ago that we are hoping helps improve his fine motor skills on his left hand. Over the past several months, we've seen him try to use his left hand more and more doing things like opening the car door or holding his water bottle with his left hand and opening it with his right. He does pretty well grasping things but still really struggles with the release/opening of his hand. We've also noticed his hand control really depends on the position his wrist is in, he gets fatigued keeping his arm and hand straight and his wrist falls causing his hand to go down. This is a big issue when he drums so he has a small wrist splint he uses which seems to help.
Several months ago I saw on Facebook of all things, an add for a Music Glove (I still find it a bit creepy that facebook knows what to advertise to me based on what I search for on the internet). It's a rehab glove that isolates work on the pinch and release for the thumb and each of the fingers all done to music. As much as Jake likes music, we thought it might be a good thing to try. To get the fine motor skills back takes tons and tons of repetition and this seemed like a more engaging way to do it. I shared it with his OT and she did some research and thought it looked interesting, but we weren't sure he had enough isolated finger movement at the time to use the glove effectively. I brought it up to her again about a month ago and we decided it would be worth a shot. We talked to Jake to make sure it was something he was willing to take initiative to do 5 days a week working up to 20-30 minutes each session. He thought about it for a couple of days and came to us and said he wanted to try it.
It's pretty cool, he gets to pick which pinching grip he works on and if he wants to work 1, 3 or 5 grips/pinches per song. As the song plays, a little dot shows up on the screen and when it gets to the of buttons at the bottom showing the grip, Jake has to pinch. In the video, Jake is working on his middle finger and thumb, you can see the green dot coming down the middle of the screen. The sensors on the glove tell him if he's early, late or gets it exactly right. We got it two weeks ago and I took a video of his pinching without the glove and the first time he used it https://youtu.be/PKZqNhlzC7I. The thing I've found interesting while watching him is how much he moves around when trying to get to pinch, it's like he needs the rest of his body to support what he's trying to do rather than isolating and moving only his fingers. He also holds his left wrist with his right hand for added support. First time he tried it he got 32/58 which is pretty darn good, the manual said it's normal to only get 5 or 10 on the first attempt.
We've been really proud of his dedication so far to "practicing." He needs a little help getting the little sensors on, but he comes to us and says he wants to practice instead of us reminding him. We're anxious to see how he progresses over the next several months, I'll be sure to keep you posted. :-)
Sunday, May 17, 2015
Monday, May 4, 2015
Certificate of Excellence
I'm adding a disclaimer right up front that I'm going into proud mom mode and am going to brag on my kid. :-)
Back in March right before spring break, Jake came home from school and told me how that day in band his teacher had written a bunch of character traits on the board....team player, dedication, commitment, consistency, hard working, most improved and others. He asked the 40+ kids in the class to vote for which student they felt exemplified those traits. Sounded kind of cool, but I quickly forgot about it. About a week after he got back from break, it was announced to the band class that Jake had received the most votes and got "the award". He wasn't really sure what the award was, but was pretty excited.
We then received an invitation a few weeks ago to an awards night at Jake's school and figured it must have something to do with this award in band. Tonight all the pieces finally came together. One student per grade level was recognized for achieving excellence in each of the following: math, social studies, language arts, science, all the electives, sports or for earning a 4.0 GPA. Jake had been voted by his peers as the 6th grade recipient for band. Pretty cool honor. One, because drumming is so important to
him and two, he was voted as the most deserving of this award by his peers, not by teachers who as adults "get" what he's had to overcome. He was chosen not because he's the best drummer or the most popular kid in the class, but because of his attitude and hard work. Kids, many that didn't know him before this year and probably don't know his history, see him coming to class everyday putting in 110% effort. They see him not give up or quit when he got last chair for the percussion line. (The kids tryout for chair positions and he came in 4th out of 4 kids, it was pretty hard on him.) Receiving any award would have been wonderful, but to see him honored for something that means so much to him was pretty awesome. Can't wait to see what lies ahead for him.
Back in March right before spring break, Jake came home from school and told me how that day in band his teacher had written a bunch of character traits on the board....team player, dedication, commitment, consistency, hard working, most improved and others. He asked the 40+ kids in the class to vote for which student they felt exemplified those traits. Sounded kind of cool, but I quickly forgot about it. About a week after he got back from break, it was announced to the band class that Jake had received the most votes and got "the award". He wasn't really sure what the award was, but was pretty excited.
We then received an invitation a few weeks ago to an awards night at Jake's school and figured it must have something to do with this award in band. Tonight all the pieces finally came together. One student per grade level was recognized for achieving excellence in each of the following: math, social studies, language arts, science, all the electives, sports or for earning a 4.0 GPA. Jake had been voted by his peers as the 6th grade recipient for band. Pretty cool honor. One, because drumming is so important to him and two, he was voted as the most deserving of this award by his peers, not by teachers who as adults "get" what he's had to overcome. He was chosen not because he's the best drummer or the most popular kid in the class, but because of his attitude and hard work. Kids, many that didn't know him before this year and probably don't know his history, see him coming to class everyday putting in 110% effort. They see him not give up or quit when he got last chair for the percussion line. (The kids tryout for chair positions and he came in 4th out of 4 kids, it was pretty hard on him.) Receiving any award would have been wonderful, but to see him honored for something that means so much to him was pretty awesome. Can't wait to see what lies ahead for him.
Sunday, May 3, 2015
Stay Tuned
I will be posting Monday night instead of my normal Sunday night because I want to share about a big honor for Jake that is happening tomorrow.
Stay tuned...
Stay tuned...
Sunday, April 19, 2015
IEP Meeting
Todd and I had Jake's IEP meeting on Friday and were talking on the way there about how far Jake has come in the past year. (For those of you who don't know, an IEP is an Individualized Education Plan for kids that need accommodations and modifications at school. Jake was put on one after his stroke.) Last year about this time, Jake had just started going to school full days. His walking had really regressed after out vacation and he was having a very hard time getting around at school. I remember how hard it was seeing him struggle, he had to go back to using the bike at school just to get around and they would even bring it out to the car in the morning to help him get inside.
A year ago, he still fatigued really easily and had both OT and PT a few times a week. I so clearly remember his IEP meeting last April. There were about 12 in attendance since we were talking about his transition from elementary school to middle school. We had a lot of concern about how he would handle a new much larger school, several different teachers and everything else that comes with middle school. It's customary for different people who have worked with Jake give a report on his status, and I remember getting emotional during several of them. It was so hard to hear all the areas he had made improvements but still had so far to go.
Fast forward to this year's IEP meeting...it was the first one where I haven't cried which made me pretty happy. :-) I don't know how much of it was I'm getting more used to these meetings vs. he showed tremendous growth this year. We heard a lot of good things and the list of modifications and accommodations is getting shorter. One big thing we took great pride in was hearing how much he is participating in class with thoughtful and constructive comments, and that he is doing really well. Not "doing well considering he's had a stroke," but just really well. There have been a few bumps this year, but overall, it's been a good transition to middle school. The thing we have to remember is a lot of kids struggle with organization or taking initiative for example. So many of the things we worry about are just normal 6th grade boy stuff, but Jake is under a microscope so things seem like a bigger deal. He still has goals he is working towards, will continue with accommodations like extended time on tests and leaving class a few minutes early to avoid crowded halls. He also has the choice of taking a break during his homeroom when he's tired. But he's getting around the school on his own, keeping up with his classmates academically and overall succeeding. His new leg brace has really helped his walking and stability and he is getting more and more use of his left hand/arm. We are happy he is still making progress and will continue doing whatever we can to support his recovery.
A year ago, he still fatigued really easily and had both OT and PT a few times a week. I so clearly remember his IEP meeting last April. There were about 12 in attendance since we were talking about his transition from elementary school to middle school. We had a lot of concern about how he would handle a new much larger school, several different teachers and everything else that comes with middle school. It's customary for different people who have worked with Jake give a report on his status, and I remember getting emotional during several of them. It was so hard to hear all the areas he had made improvements but still had so far to go.
Fast forward to this year's IEP meeting...it was the first one where I haven't cried which made me pretty happy. :-) I don't know how much of it was I'm getting more used to these meetings vs. he showed tremendous growth this year. We heard a lot of good things and the list of modifications and accommodations is getting shorter. One big thing we took great pride in was hearing how much he is participating in class with thoughtful and constructive comments, and that he is doing really well. Not "doing well considering he's had a stroke," but just really well. There have been a few bumps this year, but overall, it's been a good transition to middle school. The thing we have to remember is a lot of kids struggle with organization or taking initiative for example. So many of the things we worry about are just normal 6th grade boy stuff, but Jake is under a microscope so things seem like a bigger deal. He still has goals he is working towards, will continue with accommodations like extended time on tests and leaving class a few minutes early to avoid crowded halls. He also has the choice of taking a break during his homeroom when he's tired. But he's getting around the school on his own, keeping up with his classmates academically and overall succeeding. His new leg brace has really helped his walking and stability and he is getting more and more use of his left hand/arm. We are happy he is still making progress and will continue doing whatever we can to support his recovery.
Sunday, April 5, 2015
Spring Break
The boys were on Spring Break this past week and we decided to take the opportunity to go visit my grandpa who recently moved from Oregon to Las Vegas due to his declining health. Both my uncles live in Vegas and my parents have been there for the past two months helping him transition to a skilled nursing facility. It's been a pretty bumpy road the past few months so this was a last minute trip and unfortunately Todd had some critical things going on at work so it was just the boys and I.
While the main purpose of our trip was to see my grandpa and my parents, we tried to get in a few fun things for the boys too. The weather was really nice the first few days, so my uncles took us out to Lake Mead for some boating. It was the boys first time on a boat and the loved it.
It's so interesting how different our boys are. They were this way before Jake's stroke, but their differences are just more pronounced now. Luke is much more adventurous and would have jumped in the lake at the dock if I let him. He road in the front of the boat where it was the most windy and wet, he was also the first one to get pulled in the inner tube. Jake on the other hand is far more cautious and needs to really think things through first. He wasn't going to even wear his swimsuit since he had no intention of getting wet, sat in the back of the boat a bit more protected and took a long time (and a little bit of convincing) to decide he wanted to try the tube. I was so afraid if we left the lake and hadn't tried it, he would regret it. The water was pretty cold, but they both ended up having a really good time.
They also got to have a guys night out with my dad, uncle and cousin and went to the Medieval show at the Excalibur. They serve pretty big portions of food with no silverware, then watch a jousting match. Jake had jokingly told me earlier in the day he was going to sneak a fork in his pocket (he gets very concerned about germs), so I was surprised when my dad told me Jake just tore into is food like he hadn't eaten in three days.
It was a pretty quick trip but I am so glad we were able to go. We got to visit with my grandpa every day and even took him and Jake for a walk with both of them in their wheelchairs. I was so proud of how patient and well-behaved the boys were when we were visiting him. They didn't complain about being bored or ask when we were leaving, instead they answered his questions (which were often repeated) and just hung out with him. Luke said to me as we were leaving that "Grandpa is a really nice man, I'm glad we got to visit him." Made my day.
While the main purpose of our trip was to see my grandpa and my parents, we tried to get in a few fun things for the boys too. The weather was really nice the first few days, so my uncles took us out to Lake Mead for some boating. It was the boys first time on a boat and the loved it.It's so interesting how different our boys are. They were this way before Jake's stroke, but their differences are just more pronounced now. Luke is much more adventurous and would have jumped in the lake at the dock if I let him. He road in the front of the boat where it was the most windy and wet, he was also the first one to get pulled in the inner tube. Jake on the other hand is far more cautious and needs to really think things through first. He wasn't going to even wear his swimsuit since he had no intention of getting wet, sat in the back of the boat a bit more protected and took a long time (and a little bit of convincing) to decide he wanted to try the tube. I was so afraid if we left the lake and hadn't tried it, he would regret it. The water was pretty cold, but they both ended up having a really good time.
They also got to have a guys night out with my dad, uncle and cousin and went to the Medieval show at the Excalibur. They serve pretty big portions of food with no silverware, then watch a jousting match. Jake had jokingly told me earlier in the day he was going to sneak a fork in his pocket (he gets very concerned about germs), so I was surprised when my dad told me Jake just tore into is food like he hadn't eaten in three days.
It was a pretty quick trip but I am so glad we were able to go. We got to visit with my grandpa every day and even took him and Jake for a walk with both of them in their wheelchairs. I was so proud of how patient and well-behaved the boys were when we were visiting him. They didn't complain about being bored or ask when we were leaving, instead they answered his questions (which were often repeated) and just hung out with him. Luke said to me as we were leaving that "Grandpa is a really nice man, I'm glad we got to visit him." Made my day.Sunday, March 22, 2015
Luke
I realized the other day that while this blog is about Jake, his brother Luke has been affected by all of this too and in a pretty big way. This past week Luke had his monthly pack meeting for cub scouts. Each month a different core value of scouts is covered, March was Compassion. They usually do an activity that coincides with the trait and Luke was asked by his cubmaster if he would be willing to talk to the other scouts about he helps Jake cope and their relationship. We told Luke about it and let him make the decision. He and I went on a long walk later that night and a lot of stuff came out about Jake.
The other person who would speaking at the meeting was a mom who's son has disabilities and since they would both be speaking, Luke connected her son and Jake together and said to me "But Mom, Jake isn't disabled." It isn't a label we've really used or think about, a lot of that is because we have been more focused on his recovery and progress. And to be honest, it's a tough label to place on your child. After I thought about it for a minute, I said to him "Jake had a really bad stroke that left him unable to use parts of his body the same as you do, so technically right now he does have a disability." He then asked me if Jake would be at the meeting because he was afraid if Jake heard Luke say he was disabled it would hurt his feelings. (Jake wasn't going.) He also seemed concerned that other people would think of Jake as disabled. I told him the reason they asked him to speak was to share about what he does to help Jake and how some things have changed. It was more about awareness so if one of the other scouts encountered someone "different" they might stop, think, and be more compassionate.
He thought about it a little longer and decided he would like to do it. I told him he could say and share whatever he was comfortable with. I was very antsy waiting for he and Todd to get home from the meeting to hear how things went. When he got home he came and whispered to me that he almost cried talking about Jake and had to take some deep breaths. After they went to bed, Todd and I talked about it and he said Luke did a really good job. We were really proud of him being willing to get up in front of a pretty big group of kids and adults and share some really personal stuff. He has grown up so much the past few years and sometimes seems far wiser than ten. He really is an amazing kid and has definitely got the compassion character trait nailed down.
The other person who would speaking at the meeting was a mom who's son has disabilities and since they would both be speaking, Luke connected her son and Jake together and said to me "But Mom, Jake isn't disabled." It isn't a label we've really used or think about, a lot of that is because we have been more focused on his recovery and progress. And to be honest, it's a tough label to place on your child. After I thought about it for a minute, I said to him "Jake had a really bad stroke that left him unable to use parts of his body the same as you do, so technically right now he does have a disability." He then asked me if Jake would be at the meeting because he was afraid if Jake heard Luke say he was disabled it would hurt his feelings. (Jake wasn't going.) He also seemed concerned that other people would think of Jake as disabled. I told him the reason they asked him to speak was to share about what he does to help Jake and how some things have changed. It was more about awareness so if one of the other scouts encountered someone "different" they might stop, think, and be more compassionate.
He thought about it a little longer and decided he would like to do it. I told him he could say and share whatever he was comfortable with. I was very antsy waiting for he and Todd to get home from the meeting to hear how things went. When he got home he came and whispered to me that he almost cried talking about Jake and had to take some deep breaths. After they went to bed, Todd and I talked about it and he said Luke did a really good job. We were really proud of him being willing to get up in front of a pretty big group of kids and adults and share some really personal stuff. He has grown up so much the past few years and sometimes seems far wiser than ten. He really is an amazing kid and has definitely got the compassion character trait nailed down.
Sunday, March 8, 2015
Free Weekend
Jake definitely benefited from a weekend free from appointments. The boys had a long weekend off from school, so we were able to schedule things so he didn't have stretching or acupuncture on Saturday. Instead he got to hang out with his good friend on Saturday and outside with Luke and some of the neighbors most of Sunday. It was so nice to see him doing normal kid stuff and having fun. It seems like so much of his life is appointments, homework, therapies, he doesn't have a lot of time or energy left to just be a kid.
We did have a small incident today with one of the neighbors, but in a strange way, ended up being a sign of progress. Both our boys have always been very protective of each other and ready to come to the other's defense when they feel their brother has been wronged. There have been a few instances in the past year and a half where Luke has come to Jake's defense, but there hasn't really been a situation where Jake had a opportunity to stand up for Luke like he would have before his stroke. The majority of the time, there is no real confrontation with someone, it takes place instead with Todd and I as part of the conversation of what happened. Luke would get very upset about something that happened to Jake and talk about wanting to confront that person and what he would say. I've seen both of them over the years get very emotional wanting to right a wrong.
Today, the roles were reversed. I won't go into details with what happened, but Luke realized after the kids left that something of his got damaged (by accident), and he wasn't too happy about it. He was really upset and Jake stood up and said in a rather stern voice "I'm going to go talk to _____!" We stopped him from going outside to confront the other child, but it was so cool to see him playing the role of big brother again to Luke. Ever since his stroke, Jake has been more passive and in a lot of ways the boys have reserved roles. Luke is more the big brother that Jake relies on for things. Jake could see Luke was hurting and got mad on his behalf. Empathy and reading other people's feeling is another trait that was affected by Jake's stroke and in a weird way, it was nice to see him upset on Luke's behalf and feeling bad for his brother.
Strange as it is, it was great progress and nice to see.
We did have a small incident today with one of the neighbors, but in a strange way, ended up being a sign of progress. Both our boys have always been very protective of each other and ready to come to the other's defense when they feel their brother has been wronged. There have been a few instances in the past year and a half where Luke has come to Jake's defense, but there hasn't really been a situation where Jake had a opportunity to stand up for Luke like he would have before his stroke. The majority of the time, there is no real confrontation with someone, it takes place instead with Todd and I as part of the conversation of what happened. Luke would get very upset about something that happened to Jake and talk about wanting to confront that person and what he would say. I've seen both of them over the years get very emotional wanting to right a wrong.
Today, the roles were reversed. I won't go into details with what happened, but Luke realized after the kids left that something of his got damaged (by accident), and he wasn't too happy about it. He was really upset and Jake stood up and said in a rather stern voice "I'm going to go talk to _____!" We stopped him from going outside to confront the other child, but it was so cool to see him playing the role of big brother again to Luke. Ever since his stroke, Jake has been more passive and in a lot of ways the boys have reserved roles. Luke is more the big brother that Jake relies on for things. Jake could see Luke was hurting and got mad on his behalf. Empathy and reading other people's feeling is another trait that was affected by Jake's stroke and in a weird way, it was nice to see him upset on Luke's behalf and feeling bad for his brother.
Strange as it is, it was great progress and nice to see.
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