We're hanging in there. It's been beautiful out, and we've gone out somewhere every day, partly to prepare Oliver a bit more before he goes back to school. Today, we went to piano lessons, the very accessible No*komis Library, and the huge and wonderful accessible playground at Hia*watha School. Oliver was in good spirits - he was able to get some exercise without overdoing it, and I think he felt a bit better about using the chair. Noah and he are slowly finding some ways to play together at the playground, though that's a challenge. Oliver could ride all over the playground equipment in his chair, practiced a bit in the parking lot, and was able to browse the books in the open bins at the library. We even practiced in the handicapped bathroom, and he was quite pleased that he could use the sink from his chair - though that may well not even be necessary often. He's also gotten much better with the crutches - which my mom was really good at helping him with. She has a lot more experience with them than I do because she's had so many knee surgeries. All in all, a hopeful day.
Tomorrow, we navigate church for the first time. I am so struck by the fact that neither Faith (where the boys and I go every Sunday) nor Bryn Mawr (where Joel works on Sunday mornings) were accessible a few years ago, and both churches have put in elevators and other improvements since. We are grateful for the commitment and good choices made by those communities in regards to accessibility, because otherwise, we'd be unable to come to church now! Our pastor is going to touch on what's going on during the children's time during the service tomorrow, and we'll do a quick explanation together. Oliver seems relieved about that - he's very disturbed by the thought of people being surprised by the chair and having to answer a lot of questions. I've been trying to head that off a bit for him with some e-mails to his friends' parents, and a few neighbors, etc.
Joel and I are also going to do a quick update at the sharing time in his class on Monday, and answer some questions if the kids have any. Oliver will get to pick a buddy to help him get to his specialist classes (like art and science), lunch, and recess. One of the things I'll go over in both church and at school is the most basic rule of wheelchair etiquette: that you don't move a wheelchair without the owner's permission. Oliver hates the idea of kids moving his chair or wheeling him around without him being OK with it, and that's a level of control he really needs to be permitted. We have that over our legs, and he needs it over his chair and other equipment. Oliver's teacher thinks the kids will be good about that and eager to help him - and she emphasized that he'll quite well-liked, known for being kind, and friends with a lot of different kids. That will help him a lot, and it was very good to hear.
Saturday, October 22, 2011
Friday, October 21, 2011
the new normal
We’re plugging along through a lot of logistical details and challenges, and it’s really overwhelming at times. On Wednesday, the wheelchair was delivered. My mom came in right at that time, which was really good – it was kind of a tough afternoon. I can’t say I was at all prepared for how big and heavy a wheelchair actually is – even a lightweight youth model. When the boys were 3 and a half and we finally retired the twin stroller, they were 35 pounds or so each. Oliver is 60 pounds, so while I remember how heavy that 70 pounds was to push, I did not anticipate that this would be so much harder. A wheelchair is no stroller – it is heavy and full of hard places to hit yourself against, and awkward. Oliver really can’t propel himself far in it far– he will definitely need a push between classes. I’d thought that we could take it pretty much where we used to take the big twin jogger, but every section of sidewalk higher than about ¾ of an inch requires a stop and a careful push over, and there is no leverage bar in the back. The handles are a couple of inches too low for me and several for Joel. It is impossible to bring up or down steps even empty, or push up a steep hill, like the one to our front door, with a child in it. We can get it in the trunk, but within about a ½ inch, and only with the floor of the trunk removed. The whole thing feels terribly jerry-rigged and precarious and kind of impossible – I know it isn’t, but it feels that way right now. I have a bad back, and that doesn’t help at all. I did find out today from a co-worker that what we need to purchase is a transport chair – they don’t allow Oliver to move himself, but will allow me or Joel to get him to class and back and in and out of public places easily, and probably leave the wheelchair at school, where he can work up to some mobility with it. Maybe we’d bring it home on the weekends for longer outings. I just don’t see lifting a 45 pound chair awkwardly in and out of our car constantly. We've ordered one, and it should be here next week.
Oliver had a bit of a tougher time over the last couple of days, though he was very glad to see his Omie, and that helped a lot. The wheelchair was a shock for him – I think I’d unfortunately overpromised the mobility it would offer him, and it came as a surprise to both of us as we went around the block, how hard it was to maneuver and keep straight and go over cracks and up hills. He got pretty angry and upset in the middle of it, and really, I just felt he was so entitled to those feelings. It’s such a fine line in everything – I’ve been careful to cut him some slack when his feelings spill over and he gets frustrated, and lots of hugs and encouragement and validation, but I also think he needs some normalcy in terms of our standards and routine. I’m rather going on intuition here and it’s new territory, but I think he needs to know that there are still things that are the same – we still set the table, even if I bring the materials to him, he still needs to be respectful, he can still do his homework and feed the dog and go to school. If I thought letting him do whatever he wanted right now would help him, I’d do it in a heartbeat, but I think he needs to know some things are going on in a perhaps adapted form of what was. He’s a smart cookie – and especially good at seeing things from a variety of perspectives. I think that’s what lets him be such a little builder and engineer and so empathetic, but it’s also what’s having him mull over many worries and possibilities right now. I’m trying to make sure he knows that the big stuff, and any worrying, is the adults’ job – that it’s his job to just be a kid and do his best, and try and remember that this isn’t forever. If I’m careful of what I say in front of him, that’s why – he is the kind of kid who hears everything. We’re trying to find the balance between being encouraging and upbeat – which he responds well to – and also letting him feel what he needs to feel.
I guess I’m trying to remind myself of the same thing – that being a bit mad at the world and overwhelmed and sometimes sad right now doesn’t mean I’m not also utterly grateful that it’s not worse or forever, or that I don’t trust God or believe it will work out. I do.
A bright spot in our day over the last couple of days (besides my mom coming at what could possibly be the best timed visit ever), though also hard, was the school’s response. Joel and I had conferences anyway on Wednesday, and everyone from the school social worker to the specialists to his teacher and speech teacher pulled together to help us work through details large and small. I was so impressed and grateful. I find it rather terrifying that he’ll be away from us for 6.5 hours a day, possibly overdoing it under any one of those peoples’ care, and was much reassured. On Monday, we’ll bring him (that needs to be the plan for now, I think), and meet with the recess folks to see how we can get him some swinging time at recess every day. We’ll talk with the class about what’s going on, and answer their question during “sharing time”. Oliver will choose a buddy to wheel him around and help him to the bathroom - he can wheel there, and take a walker from the door.
Yesterday, we met a friend and her kids at the park, and gave it a whirl as to letting him do some hanging and hand-over-hand stuff (which he can do, but I can’t really lift him to help with all that well), and swinging. It went well, overall, but was also hard. I could see him thinking, realizing that he can’t run after his brother and friends, was left out of a game of hide-and-seek. It was hard for Noah too – they were both upset at one point or another in the outing, but also joyful at times. And that was rather the point, to help him start to come to grips with that before he’s at school and we’re not there to give him a hug when he’s sad.
A lot of people have thoughtfully asked after Noah – and believe me, we’re aware that this is hard for him too. I’ve been giving him a lot of little bits of extra attention whenever I can, and letting him know that he’s equally important to us and that we understand this is a big adjustment for him as well. He’s lost his racing and climbing buddy, and Oliver is getting a lot of attention. He’s been pretty sweet with Oliver, but last night at bedtime, he said, “I hate Oliver’s handicap.” Those were strong words for my reserved little guy. I did order some book from the library on the topic of siblings with disabilities, and might look for a support session or something for siblings. So much to look into…
Right now, we’re focusing on the logistical details and such, and not so much the medical stuff – mainly because we have another appointment on the 9th, and there’s not a thing that will change between now and then that could be affected by my scouring the internet, and I can do something about the practical details. We want to get both boys swimming and possibly biking (that’s a possibility when he’s at his best, as it’s good for hip range of motion and much less weight-bearing than walking). We want to find ways to be active again as a family. We’re looking into the Cou*rage Center, and a tagalong bike, and other ways he can be active and feel good in his body. I see some glimmers of hope in the new normal, and I guess we’ll just keep plugging along until we find our stride. Thank you for your love and support.
Oliver had a bit of a tougher time over the last couple of days, though he was very glad to see his Omie, and that helped a lot. The wheelchair was a shock for him – I think I’d unfortunately overpromised the mobility it would offer him, and it came as a surprise to both of us as we went around the block, how hard it was to maneuver and keep straight and go over cracks and up hills. He got pretty angry and upset in the middle of it, and really, I just felt he was so entitled to those feelings. It’s such a fine line in everything – I’ve been careful to cut him some slack when his feelings spill over and he gets frustrated, and lots of hugs and encouragement and validation, but I also think he needs some normalcy in terms of our standards and routine. I’m rather going on intuition here and it’s new territory, but I think he needs to know that there are still things that are the same – we still set the table, even if I bring the materials to him, he still needs to be respectful, he can still do his homework and feed the dog and go to school. If I thought letting him do whatever he wanted right now would help him, I’d do it in a heartbeat, but I think he needs to know some things are going on in a perhaps adapted form of what was. He’s a smart cookie – and especially good at seeing things from a variety of perspectives. I think that’s what lets him be such a little builder and engineer and so empathetic, but it’s also what’s having him mull over many worries and possibilities right now. I’m trying to make sure he knows that the big stuff, and any worrying, is the adults’ job – that it’s his job to just be a kid and do his best, and try and remember that this isn’t forever. If I’m careful of what I say in front of him, that’s why – he is the kind of kid who hears everything. We’re trying to find the balance between being encouraging and upbeat – which he responds well to – and also letting him feel what he needs to feel.
I guess I’m trying to remind myself of the same thing – that being a bit mad at the world and overwhelmed and sometimes sad right now doesn’t mean I’m not also utterly grateful that it’s not worse or forever, or that I don’t trust God or believe it will work out. I do.
A bright spot in our day over the last couple of days (besides my mom coming at what could possibly be the best timed visit ever), though also hard, was the school’s response. Joel and I had conferences anyway on Wednesday, and everyone from the school social worker to the specialists to his teacher and speech teacher pulled together to help us work through details large and small. I was so impressed and grateful. I find it rather terrifying that he’ll be away from us for 6.5 hours a day, possibly overdoing it under any one of those peoples’ care, and was much reassured. On Monday, we’ll bring him (that needs to be the plan for now, I think), and meet with the recess folks to see how we can get him some swinging time at recess every day. We’ll talk with the class about what’s going on, and answer their question during “sharing time”. Oliver will choose a buddy to wheel him around and help him to the bathroom - he can wheel there, and take a walker from the door.
Yesterday, we met a friend and her kids at the park, and gave it a whirl as to letting him do some hanging and hand-over-hand stuff (which he can do, but I can’t really lift him to help with all that well), and swinging. It went well, overall, but was also hard. I could see him thinking, realizing that he can’t run after his brother and friends, was left out of a game of hide-and-seek. It was hard for Noah too – they were both upset at one point or another in the outing, but also joyful at times. And that was rather the point, to help him start to come to grips with that before he’s at school and we’re not there to give him a hug when he’s sad.
A lot of people have thoughtfully asked after Noah – and believe me, we’re aware that this is hard for him too. I’ve been giving him a lot of little bits of extra attention whenever I can, and letting him know that he’s equally important to us and that we understand this is a big adjustment for him as well. He’s lost his racing and climbing buddy, and Oliver is getting a lot of attention. He’s been pretty sweet with Oliver, but last night at bedtime, he said, “I hate Oliver’s handicap.” Those were strong words for my reserved little guy. I did order some book from the library on the topic of siblings with disabilities, and might look for a support session or something for siblings. So much to look into…
Right now, we’re focusing on the logistical details and such, and not so much the medical stuff – mainly because we have another appointment on the 9th, and there’s not a thing that will change between now and then that could be affected by my scouring the internet, and I can do something about the practical details. We want to get both boys swimming and possibly biking (that’s a possibility when he’s at his best, as it’s good for hip range of motion and much less weight-bearing than walking). We want to find ways to be active again as a family. We’re looking into the Cou*rage Center, and a tagalong bike, and other ways he can be active and feel good in his body. I see some glimmers of hope in the new normal, and I guess we’ll just keep plugging along until we find our stride. Thank you for your love and support.
Tuesday, October 18, 2011
Oliver's not so excellent adventure
I have some unfortunate, though not catastrophic news. As some of you know from Facebook, Oliver was diagnosed with Legg-Calvé-Perthes Disease this today. It's a disease where part of the hip bone dies due to loss of blood, and has to grow back, and grow back in the right alignment and shape. He's in the beginning stages, and it will take 2 years or so for it to heal enough to where he can be active again. He'll need a wheelchair and/or crutches or a walker some of the time and to avoid running and jumping. Surgery is a possibility down the road, and it is especially a hope that he doesn't get it in the other hip. He's got a fabulous medical team for this rare condition, which affects about 10-15 kids in the metro at one time. He also has a great attitude, and we know he can do this, even though it will be challenging. If you want more information, this is an excellent, short overview that fits with what the doctor shared with us.
We've experienced a lot of love and support from friends and family today, and really appreciate your prayers and support. There are a lot of details to work out - his school situation, finding him therapeutic swimming somewhere (a great non-weight-bearing option), just figuring out how to get him in and out of the house. He's 60 pounds and I have significant back problems - it's going to be a real challenge, and I don't even want to think about the snow. It's a lot to digest. I start to think we'll get through this (and I know we will) and then I think about Halloween, for example, with all those many steps, and it doesn't even occur to Ollie yet as he talks excitedly about Halloween. It will take a while for him to digest it, I think - and I think it will be hard to watch his twin do daily what he can't. It will be hard for Noah too - I reminded him at bedtime that he and his needs are just as important, and promised to check in with him to make sure he feels that thats the case. And yet, I know it could be much worse - this is a self-limiting disease, generally. He should run and walk normally again, even if he won't ever be a marathon runner. There are small blessings everywhere - that my mom happens to already be on the way here this week, that we could get into an MRI right away and be seen by the only doc in town who specializes in this, that Ollie has crazy upperbody strength from all that climbing he does. An even larger blessing is our wonderful family, church, and friends. Less wonderful is the fact that the clinic is a tier 2 on our insurance, and we have no other options - that makes things a lot more expensive. Shriners may be an option - we're looking into that. We see the doc again in 2 weeks, and should know a bit more then - she's sharing the results of the MRI with her colleagues in Texas, where they have a center for this.
We've experienced a lot of love and support from friends and family today, and really appreciate your prayers and support. There are a lot of details to work out - his school situation, finding him therapeutic swimming somewhere (a great non-weight-bearing option), just figuring out how to get him in and out of the house. He's 60 pounds and I have significant back problems - it's going to be a real challenge, and I don't even want to think about the snow. It's a lot to digest. I start to think we'll get through this (and I know we will) and then I think about Halloween, for example, with all those many steps, and it doesn't even occur to Ollie yet as he talks excitedly about Halloween. It will take a while for him to digest it, I think - and I think it will be hard to watch his twin do daily what he can't. It will be hard for Noah too - I reminded him at bedtime that he and his needs are just as important, and promised to check in with him to make sure he feels that thats the case. And yet, I know it could be much worse - this is a self-limiting disease, generally. He should run and walk normally again, even if he won't ever be a marathon runner. There are small blessings everywhere - that my mom happens to already be on the way here this week, that we could get into an MRI right away and be seen by the only doc in town who specializes in this, that Ollie has crazy upperbody strength from all that climbing he does. An even larger blessing is our wonderful family, church, and friends. Less wonderful is the fact that the clinic is a tier 2 on our insurance, and we have no other options - that makes things a lot more expensive. Shriners may be an option - we're looking into that. We see the doc again in 2 weeks, and should know a bit more then - she's sharing the results of the MRI with her colleagues in Texas, where they have a center for this.
We'll keep you posted - thanks for listening.
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