I'm sitting here watching my two boys play Bayblade in the loft with one dog in my lap and one at my feet and I am realizing what a perfect moment this is. I had a post on Facebook that reminded me to really take a step back and enjoy the little things. It's also the reason for my 'this too shall pass' tattoo, to remind me stop and smell the roses. I think it may be a downfall of a lot of moms especially those of us special needs mommas, we look so often at all the hurdles we have to overcome and not enough of these good moments. The kids are always growing and reaching for new things, I get so busy trying to keep up that I forget to look at the little things. Clay is a ball of energy, stories, and kindness all rolled into one. He's coming into his own right now so he is challenging our patience as parents at times but he is becoming such a good little man. Jude is about half done with the robotics program here at Riley Children's Hospital and he is progressing so well. Sometimes he amazes me, he only uses righty as a helper hand yet he is sitting here playing Bayblade (which is just a glorified and 'boy-ified' game of tops in case you haven't heard of the craze!) with his big brother. It really makes me thankful for what I have and all the work we put into these little members of society! Enjoy the little times!
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Tuesday, November 15, 2011
Tuesday, October 11, 2011
Adapted school tray
Today I wanted to share a struggle and a solution I had with my son. My 6 year old, right hemi son, went to kindergarten this year and w having difficulty with lunch. He wanted to buy hot lunch some of the time but didn't feel like he could do it because he has to hold, balance, and grip hard enough on the tray to get from the lunch line to his table. He felt embarrassed because he couldn't confidently do it all alone so the teacher had to do it for him or he'd risk dropping his entire lunch in the middle of the cafeteria. There solution was this:
For him to put his affected hand under the tray which opens a whole can of problems like improper habits, carryover from it, and maybe he could
So I asked the school and they allowed me to adapt the tray. And I was able to but a Velcro strap so he could feel confident carrying the tray (our rule is righty has to look just like lefty) but not fear loosing it.
Email me if I can if this would work for you too! Drhuns@yahoo.com
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For him to put his affected hand under the tray which opens a whole can of problems like improper habits, carryover from it, and maybe he could
So I asked the school and they allowed me to adapt the tray. And I was able to but a Velcro strap so he could feel confident carrying the tray (our rule is righty has to look just like lefty) but not fear loosing it.
Email me if I can if this would work for you too! Drhuns@yahoo.com
Posted using BlogPress from my iPad
Tuesday, September 13, 2011
School decision
Well, it's official, Hamilton Southeastern school system made the wrong decision today, that's for sure. Back in May they stated that because Jude was too intelligent he didn't qualify for services through the school. I disagreed with them and was able to get an independent evaluation done so that at least they could look at the things I thought were important and difficult for Jude. So we did that and waited for the school committee to come back to say that indeed Jude is "too advanced" to require services from the school system. (But truthfully those school therapists he worked with were only supervising Jude, not ever really providing therapy)
But I honestly believed they would do the right thing, despite how well Jude is doing in school, his disability lies in his physical capabilities not his mental capabilities. The thing is they are cutting out the bridge between what he mentally can do and what he can physically do. They say he is at a high reading level but who is going to hold those advanced books for him to read because he can't physically do it. An iPad they say works great for problems like this but do you think there's a chance that the school would provide this to Jude, I'd bet not. They're just so focused on making these kids cookie cutter kids so it's easier but they aren't thinking about the kids individually.
Though Jude is a pretty lucky guy, he seems to have a fantastic teacher who cares about Jude more than just a number. I feel really confident she's a great asset to Jude's team, I just wish she had the support from the school. She hasn't been able to do his assessments because he's been at therapy both times his group was evaluated. This week he was upset that he had such easy homework but that's only because his teacher hasn't had the time to assess and then challenge him. He's missing out on school success because he's gaining at therapy. Where do we fix this?
I probably shouldn't fight over this he has so many advantages that others don't and I should be grateful for that. But he has such potential. He has the ability to do great things and BECAUSE of his disability he has the drive to work hard and excel. I just want him to do what he wants to do whatever it is, no limitations. I thought that used to be a common goal but it doesn't seem like the case. At least not here in this school system.
Anyway, the subject seems to be tabled right now, at least unless we have a truancy problem because of the therapies. Not sure of my next step, I'm still a bit shocked at their decision. I'll start on that tomorrow maybe.
"This too shall pass"
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But I honestly believed they would do the right thing, despite how well Jude is doing in school, his disability lies in his physical capabilities not his mental capabilities. The thing is they are cutting out the bridge between what he mentally can do and what he can physically do. They say he is at a high reading level but who is going to hold those advanced books for him to read because he can't physically do it. An iPad they say works great for problems like this but do you think there's a chance that the school would provide this to Jude, I'd bet not. They're just so focused on making these kids cookie cutter kids so it's easier but they aren't thinking about the kids individually.
Though Jude is a pretty lucky guy, he seems to have a fantastic teacher who cares about Jude more than just a number. I feel really confident she's a great asset to Jude's team, I just wish she had the support from the school. She hasn't been able to do his assessments because he's been at therapy both times his group was evaluated. This week he was upset that he had such easy homework but that's only because his teacher hasn't had the time to assess and then challenge him. He's missing out on school success because he's gaining at therapy. Where do we fix this?
I probably shouldn't fight over this he has so many advantages that others don't and I should be grateful for that. But he has such potential. He has the ability to do great things and BECAUSE of his disability he has the drive to work hard and excel. I just want him to do what he wants to do whatever it is, no limitations. I thought that used to be a common goal but it doesn't seem like the case. At least not here in this school system.
Anyway, the subject seems to be tabled right now, at least unless we have a truancy problem because of the therapies. Not sure of my next step, I'm still a bit shocked at their decision. I'll start on that tomorrow maybe.
"This too shall pass"
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Tuesday, September 6, 2011
Future looks bright
Great news, we were called by the Riley Children's Hospital to see if Jude would participate in their robotics program! They just opened this study within the last year and we are so excited to be a part of it. I may be putting the cart before the horse because we have not done the actual evaluation but he should have no problem qualifying. It is 18 sessions of therapy on his upper affected extremity (right) twice per week. It is almost like a game simulation where he will have to move a joystick to the proper movements while playing a game. I am not all together positive about how it works, I assume it will all be explained on Thursday and I will let you all know!
We finally scheduled the case conference for Jude's IEP (individual education plan) so we are looking forward to next week. Then we will all take a look at my independent evaluations compared to what the school therapists saw. At least twice at the case conference in May his physical therapist admitted that what she wrote in the report was not actually correct. She said there was not a significant gait difference when he walked but was when ran. That's the total opposite of what is really going on, when Jude runs he looks symmetrical. He does hold his hand in a flexed position but his legs look perfect. But when he walks you there is a significant limp. That is just one of the errors in her report. I understand that they have a lot of kids they see and a short time to assess them but if it's not correct then why write that in your evaluation.
One of my biggest concerns about this year were things like opening packages and markers and glue sticks but was assured that he would be assisted if he needed it. I was told that people would watch out for him just like they would for every other kindergartener. I've found out this is not necessarily true especially in the lunchroom. His teacher seems wonderful, he doesn't say a bad thing about the classroom. But when we talk about the lunchroom he says he is sad and embarrassed. Sad because one of the two times he took hot lunch he barely made it to his table with his tray before it fell, luckily it was on the table that he dropped it and nothing spilled so he didn't feel bad. But now he is sad because he wants to carry his tray but the lunch lady said she has to do it for him. Why can't she assist him in carrying it, be there in case it slips instead of doing it for him. How will he ever get strong enough to do that on his own or will she be following him every day until high school? As of right now they won't guarantee someone will do that because he doesn't qualify for services. He also feels embarrassed because he has spilled his fruit cup twice when trying to open it. Friday he came home with a stain on the front of his shirt from his peaches and today he told us he couldn't eat his fruit cup because the lunch lady opened it a little bit and told him to do the rest and he couldn't do it in time. I've already changed the way I pack his lunch, anything that I can repackage (like lunchables) I do so in a ziploc bag and any packages I tear a start in the bag but what else am I supposed to do? So tomorrow morning I have a meeting with his principle to talk about these things and how we can make sure Jude is taken care of. If I have to be there every day for lunch I will definitely do that. But he wants to be independent, who wants your mom coming to open your lunch bags in front of all his friends, certainly not Mr Independent Jude! Hopefully tomorrow will bring good news.
We have a lot of hills in our little road but I am confident that we are at least traveling on the right road. My hope is that I can address these things with Jude so that hopefully someone with the same issues doesn't have as many bumps in their road. If I can do that I'd consider it a success.
- Posted using BlogPress from my iPad
We finally scheduled the case conference for Jude's IEP (individual education plan) so we are looking forward to next week. Then we will all take a look at my independent evaluations compared to what the school therapists saw. At least twice at the case conference in May his physical therapist admitted that what she wrote in the report was not actually correct. She said there was not a significant gait difference when he walked but was when ran. That's the total opposite of what is really going on, when Jude runs he looks symmetrical. He does hold his hand in a flexed position but his legs look perfect. But when he walks you there is a significant limp. That is just one of the errors in her report. I understand that they have a lot of kids they see and a short time to assess them but if it's not correct then why write that in your evaluation.
One of my biggest concerns about this year were things like opening packages and markers and glue sticks but was assured that he would be assisted if he needed it. I was told that people would watch out for him just like they would for every other kindergartener. I've found out this is not necessarily true especially in the lunchroom. His teacher seems wonderful, he doesn't say a bad thing about the classroom. But when we talk about the lunchroom he says he is sad and embarrassed. Sad because one of the two times he took hot lunch he barely made it to his table with his tray before it fell, luckily it was on the table that he dropped it and nothing spilled so he didn't feel bad. But now he is sad because he wants to carry his tray but the lunch lady said she has to do it for him. Why can't she assist him in carrying it, be there in case it slips instead of doing it for him. How will he ever get strong enough to do that on his own or will she be following him every day until high school? As of right now they won't guarantee someone will do that because he doesn't qualify for services. He also feels embarrassed because he has spilled his fruit cup twice when trying to open it. Friday he came home with a stain on the front of his shirt from his peaches and today he told us he couldn't eat his fruit cup because the lunch lady opened it a little bit and told him to do the rest and he couldn't do it in time. I've already changed the way I pack his lunch, anything that I can repackage (like lunchables) I do so in a ziploc bag and any packages I tear a start in the bag but what else am I supposed to do? So tomorrow morning I have a meeting with his principle to talk about these things and how we can make sure Jude is taken care of. If I have to be there every day for lunch I will definitely do that. But he wants to be independent, who wants your mom coming to open your lunch bags in front of all his friends, certainly not Mr Independent Jude! Hopefully tomorrow will bring good news.
We have a lot of hills in our little road but I am confident that we are at least traveling on the right road. My hope is that I can address these things with Jude so that hopefully someone with the same issues doesn't have as many bumps in their road. If I can do that I'd consider it a success.
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Wednesday, August 31, 2011
Wow, what a summer.
They say time flys when you're having fun, I think time just plain flys. This summer went by in the blink of an eye. Of course it didn't help that school started mid August either! Clay and Jude are at the same school this year and they ride the bus together. This year Jude is in kindergarten all day and seems to love it. Every day his brother Clayton sits at the kitchen table for a mock spelling test. Now that Jude is in school I've had to buy another dry erase board and try to think of sight words for Jude to spell!
Summer was a blast, it was wonderful to be able to be with the boys every day. We, as a family, have decided that my time is better served at home with the boys than working outside the home. That way we insure Jude is able to go to therapies and is reminded about things like use two hands and breakfast and lunch are righty tasks, etc. And now that he is school I realize how beneficial that was. I am not there for 8 hours and I honestly don't know if he uses righty at all during those times. I have to have faith that (because of all the therapies we have done!) he will use it spontaneously and consistently, I wish I could be a fly on the wall.
Maybe I will have to delegate that job to Jude's Great Grandma, unfortunately we lost her this year after 94 wonderful years. Rose Eiting was a wonderful woman, full of happiness and love. It's a sad thing to go through and takes longer than the couple weeks it's been to forget. There is comfort in knowing she is looking out for her sweet Jude, maybe she will have to remind him now.
Jude spent a lot of time out of his AFO (a brace for his drop foot) and little by little those things help build his muscle. I asked the orthopedic doctor about that this year, there seems to be a visible difference in the size of his calves. He said because there is less neurological input it grows at a slower rate. Right now the only solution he saw was a calf implant and that's definitely not a decision I should ever make for Judian. But he also gave us some great news, another round of Botox has been deferred for 6 months. Jude's range and stretch look great so his Doctor doesn't see the need right now. I have no doubt it is because of the DynaSplint. He actually asks me to put his brace on because he knows that when he wears that consistently he doesn't need Botox.
The DynaSplint was a wonderful find from his physical therapist. After researching it she realized it may be beneficial for Jude so we tried it. So far he has avoided an entire year of Botox and is less tight than before! We are so lucky to have such a wonderful team of doctors and especially THERAPISTS. Without them we would be lost and Jude certainly wouldn't be where he is today without them. They are always looking for things that would benefit Jude. I love doing play therapy but am not near as good as those on team Jude and for that I am forever grateful.
This year brings several new challenges and changes. We are still fighting the insurance company to get payment for the Constraint Induced Therapy (CIT), we have been denied on 3 appeals now. They say that now CIT is not considered experimental like they said back in April but the 6 hours of intense therapy is not necessary. It seems that whenever we have something to prove their statements wrong they come up with some new reason. I am now looking into lawyers and external review boards, hopefully one of them will help. We are also still fighting the school system to get Jude the safety precautions that he needs. He cannot supinate his wrist (turn it over) so carrying the lunch tray is very difficult. He has already had to skip his snack at lunch because no one was there to help him open it. Although they say there are people walking around to help open things for the little ones and carry their trays, on day 1 he could not eat what I packed him for lunch because no one was there to help him open it. He is not one that asks for help easily, he really wants to try to do it himself, so many times time runs out on him because he took longer than average to do something. That is exactly my fear, that he will be pushed around and go without because he is a bit slower than his peers. The school says I shouldn't worry about that, there will always be someone to "help him out if he needs it". But they don't know if Jude doesn't ask for help or someone takes an interest in him and so far that isn't the case that I know of. So I will definitely write about it at a later time so hopefully I can help others.
Cheers
- Posted using BlogPress from my iPad
Summer was a blast, it was wonderful to be able to be with the boys every day. We, as a family, have decided that my time is better served at home with the boys than working outside the home. That way we insure Jude is able to go to therapies and is reminded about things like use two hands and breakfast and lunch are righty tasks, etc. And now that he is school I realize how beneficial that was. I am not there for 8 hours and I honestly don't know if he uses righty at all during those times. I have to have faith that (because of all the therapies we have done!) he will use it spontaneously and consistently, I wish I could be a fly on the wall.
Maybe I will have to delegate that job to Jude's Great Grandma, unfortunately we lost her this year after 94 wonderful years. Rose Eiting was a wonderful woman, full of happiness and love. It's a sad thing to go through and takes longer than the couple weeks it's been to forget. There is comfort in knowing she is looking out for her sweet Jude, maybe she will have to remind him now.
Jude spent a lot of time out of his AFO (a brace for his drop foot) and little by little those things help build his muscle. I asked the orthopedic doctor about that this year, there seems to be a visible difference in the size of his calves. He said because there is less neurological input it grows at a slower rate. Right now the only solution he saw was a calf implant and that's definitely not a decision I should ever make for Judian. But he also gave us some great news, another round of Botox has been deferred for 6 months. Jude's range and stretch look great so his Doctor doesn't see the need right now. I have no doubt it is because of the DynaSplint. He actually asks me to put his brace on because he knows that when he wears that consistently he doesn't need Botox.
The DynaSplint was a wonderful find from his physical therapist. After researching it she realized it may be beneficial for Jude so we tried it. So far he has avoided an entire year of Botox and is less tight than before! We are so lucky to have such a wonderful team of doctors and especially THERAPISTS. Without them we would be lost and Jude certainly wouldn't be where he is today without them. They are always looking for things that would benefit Jude. I love doing play therapy but am not near as good as those on team Jude and for that I am forever grateful.
This year brings several new challenges and changes. We are still fighting the insurance company to get payment for the Constraint Induced Therapy (CIT), we have been denied on 3 appeals now. They say that now CIT is not considered experimental like they said back in April but the 6 hours of intense therapy is not necessary. It seems that whenever we have something to prove their statements wrong they come up with some new reason. I am now looking into lawyers and external review boards, hopefully one of them will help. We are also still fighting the school system to get Jude the safety precautions that he needs. He cannot supinate his wrist (turn it over) so carrying the lunch tray is very difficult. He has already had to skip his snack at lunch because no one was there to help him open it. Although they say there are people walking around to help open things for the little ones and carry their trays, on day 1 he could not eat what I packed him for lunch because no one was there to help him open it. He is not one that asks for help easily, he really wants to try to do it himself, so many times time runs out on him because he took longer than average to do something. That is exactly my fear, that he will be pushed around and go without because he is a bit slower than his peers. The school says I shouldn't worry about that, there will always be someone to "help him out if he needs it". But they don't know if Jude doesn't ask for help or someone takes an interest in him and so far that isn't the case that I know of. So I will definitely write about it at a later time so hopefully I can help others.
Cheers
- Posted using BlogPress from my iPad
Friday, June 17, 2011
Our start of home therapy
Well we've started to do our own therapy at home and I've had so much fun getting ready and trying to make things fun for us. I really want to keep up all the progress Jude made in Alabama and that means really focusing on home therapy. I've had some crazy ideas on how to make it fun so Jude will be excited to do it. I love to do crafty things and to make things especially if that will make doing the task easier!
So during our 4 hour therapy session on Wednesday I brainstormed a ton of ideas on how to make this more fun. This was what we started out with for our therapy at home on Wednesday.
We had a lot of fun playing in a way that practiced all his newly acquired skills. Loads of board games, magnets, and Play-doh.
Something I really want to focus on was holding things like trays and board games because it is something he will be doing a lot of in school. Jude likes to have a little extra time to do things so he feels comfortable. So one idea I had was to make him his own tray that he can use for coloring stuff, his marbles, or anything he wants it for! Here's how it turned out, he really likes it and I hope he'll want to practice with it.
Some families are all about princesses and dolls but we're more of a flame and pirate family! It was fun and turned out OK I think. I'll update with any more Fun-Therapy!
- Posted using BlogPress from my iPad
So during our 4 hour therapy session on Wednesday I brainstormed a ton of ideas on how to make this more fun. This was what we started out with for our therapy at home on Wednesday.
We had a lot of fun playing in a way that practiced all his newly acquired skills. Loads of board games, magnets, and Play-doh.
Something I really want to focus on was holding things like trays and board games because it is something he will be doing a lot of in school. Jude likes to have a little extra time to do things so he feels comfortable. So one idea I had was to make him his own tray that he can use for coloring stuff, his marbles, or anything he wants it for! Here's how it turned out, he really likes it and I hope he'll want to practice with it.
Some families are all about princesses and dolls but we're more of a flame and pirate family! It was fun and turned out OK I think. I'll update with any more Fun-Therapy!
- Posted using BlogPress from my iPad
Location:Fishers,United States
Tuesday, June 14, 2011
Back to normal
It feels good to be home. We've been home now since Friday night and it's been nonstop since then. I went back to work and the boys went back to being spoiled by grandma. It's so nice to have my mom watch the boys while I work, I know they are well taken care of then!
We had a party on Friday night when we got home and again on Saturday, it was a great weekend for Jude. I don't know how many times I heard Jude say on Friday, this is my day. It was Jude's day. He worked so hard in Alabama. 21 days, 6 hours a day of intense therapy. No one did it for him, it was entirely Jude and you can see the results. It was the hardest thing I have ever done. I see Jude and CJ now and I think about how much they missed each other. So people would not push themselves to give things up like we did. For a month we put our family on hold. Our unit of 4 was never all together since may 16 but we come back together and you say this is what we did it for. I watched CJ run outside the second I pulled into the garage and give each other the biggest hug I have ever seen. Last night we were basically outsiders in the Clayton and Jude world. We were able to watch but to them we didn't exist. It was great. But now we're back to normal which means bickering and annoying each other. It couldn't last forever!
So it's back to the daily grind. Work this week and tomorrow Clayton and daddy leave for cub scout camp, it's overnight now! Aim glad Ryan is able to go with him, I don't think I am ready for overnight without one of us! Jude and I are really going to hit the home program hard this weekend, it will be fun!
- Posted using BlogPress from my iPad
We had a party on Friday night when we got home and again on Saturday, it was a great weekend for Jude. I don't know how many times I heard Jude say on Friday, this is my day. It was Jude's day. He worked so hard in Alabama. 21 days, 6 hours a day of intense therapy. No one did it for him, it was entirely Jude and you can see the results. It was the hardest thing I have ever done. I see Jude and CJ now and I think about how much they missed each other. So people would not push themselves to give things up like we did. For a month we put our family on hold. Our unit of 4 was never all together since may 16 but we come back together and you say this is what we did it for. I watched CJ run outside the second I pulled into the garage and give each other the biggest hug I have ever seen. Last night we were basically outsiders in the Clayton and Jude world. We were able to watch but to them we didn't exist. It was great. But now we're back to normal which means bickering and annoying each other. It couldn't last forever!
So it's back to the daily grind. Work this week and tomorrow Clayton and daddy leave for cub scout camp, it's overnight now! Aim glad Ryan is able to go with him, I don't think I am ready for overnight without one of us! Jude and I are really going to hit the home program hard this weekend, it will be fun!
- Posted using BlogPress from my iPad
Location:Fishers,United States
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