Sometimes emotions hit me completely out of left field and kind of surprise me. I had one of those days about a week ago. When I dropped Jake off at school and watched him walk down the hall, this overwhelming sadness hit me and I had to fight back the tears. There he was by himself with his unique gait and his left arm bent up to his chest going down the hallway to class. All around him kids were walking effortlessly, laughing and talking like kids are supposed to do. I then felt this deep anger that a senseless stroke took away his carefree young life and instead of dealing with everyday teenager issues, he's got a whole extra layer of struggles. It just isn't fair. Even as I sit her writing this and thinking back to that day, tears are streaming down my cheeks. The anger has passed and I am just sad for what will never be...he won't get these years back and is going to have to deal with the repercussions of his stroke for the rest of his life. I know other kids/people have issues they deal with everyday and I recognize that. Everyone has their own struggles and I don't mean to insinuate Jake is the only one who has tough stuff to deal with. But on that day, I was just deeply sad for our son with what he has to go through.
When I got back to the car where Luke was waiting, he could see on my face that I was upset and asked me what was wrong. I told him and we talked a little bit about it. He said he also gets really sad sometimes talking about Jake and has to fight back tears. He told me that he feels guilty sometimes because while he feels really bad that Jake had a stroke, he's glad it wasn't him. I totally get that and told him that was normal. He also said "I am really wise and have a gift that I know how to help people. A lot of my friends come to me for advice, and I help them. So if you ever need to talk to me, you can." It was so genuine and sweet...definitely brought temporary smile to my face. He has really grown up through this ordeal and truly amazes me sometimes.
I'm glad these type of days don't happen too often and that most of the time I'm able to stay positive and be very thankful that Jake is doing as well as he is and at how far he's come. But every once in awhile, I'm going to allow myself the time to be sad, angry, ticked off and whatever other emotions come my way. I think we need to allow ourselves to feel the wide range of human emotions, just can't stay there too long.
Sunday, January 31, 2016
Sunday, January 17, 2016
Drumming
He has been taking weekly lessons for about the past year and the first several months were spent doing a lot of "drumming therapy," working on basic beats and patterns that helped to engage the left hand. He's recently started working on playing some songs and seems to be really enjoying it. Here's a clip from a few weeks ago playing some Tom Petty. (Sorry the first little bit is bouncy, it gets smoother after about 10 seconds). https://youtu.be/FRyaBhcdjl4 They use an electronic drum kit at his lessons, it's a lot quieter since the volume is controlled by an amplifier or it can be completely silent when used with headphones. It's also more forgiving since all the drum and cymbal heads are rubber. He's been saving his money for one for awhile and we decided to pay for the rest of it for Christmas. Because they aren't loud, we put it upstairs in the spare bedroom. His regular drums are in the basement and he doesn't like going down there by himself, so if Luke wasn't in the mood to practice his guitar and go down with him, Jake wouldn't go. Since getting them, his practice time has more than doubled. I am so glad he has something that he truly enjoys doing. It feels like so much of his day involves frustration or doing things he doesn't like to do (PT exercises, stretching, being corrected by us on his gait), it's good he's got something that brings him pure joy. I've asked him if it's frustrating for him now since both hands can't go at full capacity and he surprised me when he said, "a little, bit but not really." I wonder at times if it's harder on Todd and I than it is on him, but I love that he still tries and hasn't given it up.
Sunday, January 3, 2016
Constraint Therapy
It's been a long couple of weeks in the Morgan household...Jake has spent his winter break from school doing constraint therapy to try and help increase the function in his left hand. He was fit for a cast in the middle of December that he wears on his right hand which forces him to use his left hand. It was removable to make things like showering easier, but in retrospect I wonder if we should have gone with a permanent cast...
We made the decision to do this back in November at one of his OT appointments. It's something that she had mentioned before, but I've been resistant because I knew how hard it would be for him (and me watching him go through it). Imagine having to use only your non-dominant hand to do everyday tasks like eating or getting dressed, then take away a lot of that hands function. Doesn't sound like too much fun. I hated the thought of putting him through that. When his OT and I talked in November, she mentioned how much progress kids can show in a fairly short amount of time because of the forced use. Jake has talked about wanting to improve his hand function so he can drum better, so it seemed like the right time. He wasn't thrilled about the idea but he was willing to try it.
As you can imagine, it was extremely frustrating for him. The first morning he had the cast on we had scrambled eggs, bacon, hash browns, and pineapple for breakfast. Not very stab-friendly foods, he was almost in tears after struggling to get eggs into his mouth three or four times. We actually got to the point where we told him to forget the fork and just try to eat with his hands. That didn't go well either, not much to grab when eggs are scrambled and pineapple is slippery. We were told that if he got too frustrated to take it off, it wasn't supposed to be viewed as punishment. We ended up taking the cast off so he could eat and realized we needed to plan our food options a little better. (He had much better success later in the week with yogurt and omelets.) Todd had decided he would get a cast made too so Jake wasn't doing it alone and we all ate with our non-dominate hand in support of Jake. Todd and I also put on an oven mitt while eating to try and hinder us a little further. While it was hard (especially drinking coffee), it was no where near what Jake was going through.
Another tough one I hadn't even thought about was hooking his seat belt. I would pull and hold the strap but wanted him to put the buckle into the clip, again not an easy one-handed task. There is alignment as well as pressure to make it work. He would finally get it but took awhile. We were supposed to encourage him to actually do things when he was wearing the cast, not just sit and watch TV and not use his hand. He and Luke played connect four and some other games or would eat popcorn while watching a movie, but if left alone his choice was to sit and "do nothing."
He ended up wearing it less than I had envisioned. We had planned on taking the cast off when he slept and showered, as well as Christmas Eve and Christmas Day. It was hard to deal with when he had his coat on because we couldn't get the sleeve over it or a glove on, so it came off a lot when we were out. Because of the directive to not make it a punishment and Jake's frustration level, we would take it off if a meal was especially difficult and when he wanted to play his drums. (On a positive note, he practiced A LOT over break.)
Wearing it for any length of time made him really tired, he's slept more during break than I've seen in a long time. It makes sense, he's having to work so hard to do the simplest of tasks, it's exhausting. He also had four OT appointments in two weeks where he worked on strength exercises to further rehab his hand. It was so tough to watch him struggle and get so discouraged, that didn't help my resolve too much either.
We took video's several times throughout the past few weeks of him eating so he could watch them and see the progress. I promised him I wouldn't share them because many times it wasn't too pretty and a lot of food ended up in his lap. He has a really hard time rotating his wrist as well as bending at the elbow, so even when he could get something on the fork, getting it into his mouth was a challenge.
We have seen progress, honestly not as much as I had hoped, but there are improvements. I think being realistic, we only had two weeks and he could have worn the cast more. We're going to continue having him wear it a couple times a week in the evenings and do something like play cards or a game where he can actively use his left hand so he doesn't lose the progress he's gained. All we can do now is continue trying to find ways to support him moving forward.
We made the decision to do this back in November at one of his OT appointments. It's something that she had mentioned before, but I've been resistant because I knew how hard it would be for him (and me watching him go through it). Imagine having to use only your non-dominant hand to do everyday tasks like eating or getting dressed, then take away a lot of that hands function. Doesn't sound like too much fun. I hated the thought of putting him through that. When his OT and I talked in November, she mentioned how much progress kids can show in a fairly short amount of time because of the forced use. Jake has talked about wanting to improve his hand function so he can drum better, so it seemed like the right time. He wasn't thrilled about the idea but he was willing to try it.
Another tough one I hadn't even thought about was hooking his seat belt. I would pull and hold the strap but wanted him to put the buckle into the clip, again not an easy one-handed task. There is alignment as well as pressure to make it work. He would finally get it but took awhile. We were supposed to encourage him to actually do things when he was wearing the cast, not just sit and watch TV and not use his hand. He and Luke played connect four and some other games or would eat popcorn while watching a movie, but if left alone his choice was to sit and "do nothing."
He ended up wearing it less than I had envisioned. We had planned on taking the cast off when he slept and showered, as well as Christmas Eve and Christmas Day. It was hard to deal with when he had his coat on because we couldn't get the sleeve over it or a glove on, so it came off a lot when we were out. Because of the directive to not make it a punishment and Jake's frustration level, we would take it off if a meal was especially difficult and when he wanted to play his drums. (On a positive note, he practiced A LOT over break.)
Wearing it for any length of time made him really tired, he's slept more during break than I've seen in a long time. It makes sense, he's having to work so hard to do the simplest of tasks, it's exhausting. He also had four OT appointments in two weeks where he worked on strength exercises to further rehab his hand. It was so tough to watch him struggle and get so discouraged, that didn't help my resolve too much either.
We took video's several times throughout the past few weeks of him eating so he could watch them and see the progress. I promised him I wouldn't share them because many times it wasn't too pretty and a lot of food ended up in his lap. He has a really hard time rotating his wrist as well as bending at the elbow, so even when he could get something on the fork, getting it into his mouth was a challenge.
We have seen progress, honestly not as much as I had hoped, but there are improvements. I think being realistic, we only had two weeks and he could have worn the cast more. We're going to continue having him wear it a couple times a week in the evenings and do something like play cards or a game where he can actively use his left hand so he doesn't lose the progress he's gained. All we can do now is continue trying to find ways to support him moving forward.
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