Well, Tom made it through his knee replacement surgery in good form. He ended up having a partial, which should hopefully make recovery time a little shorter. He's not the best patient, but he's tolerating it. Twice daily physical therapy, constant poking and prodding, having his left leg in a contraption that's meant to keep it moving, nurses and doctors coming in and out all hours of the day and night for both him and his roommate- a nice man by the name of Matt Corcoran. I told him yesterday he had no business being in the hospital- he should have been out standing on the parade route! So, Tom is doing as well as can be expected.
Sam's handling it pretty well. He's been around to play with old friends Lucas, Lauren, Ryan and Kayla this weekend, so I could get to the hospital and actually visit with Tom. I brought Sam over twice for brief visits. Tom's room is literally the size of a postage stamp. It's barely large enough with all the stuff in it for an able-bodied person to move around in, let alone someone with a huge cast-like thing on his leg, with a walker, being aided by a physical therapist. So Sam being in such a cramped space with all those bells and whistles was not the best scenario. He expressed to me tonight that he was sad because he wants dad back. I was glad to hear this because his usual thing is to be attached to me at the hip and not be as attuned to dad. Indeed it does seem strange around here without Tom.
I find I'm enjoying the clearness of my schedule. Because we were so not sure of what the operation and recovery would entail, I purposely didn't make any committments for the next couple of weeks that couldn't be changed. I may make a habit of this. It seems nice to have few plans, other than sticking close to home. I think it will help Sam get back on a more secure track schedule wise as well. I was thinking today about how things were when I started this blog about a year ago. It's nice to be feeling better about a lot of things- Sam and his school situation, and Tom finally hopefully getting some relief for the pain he's had all these years.
Sunday, March 16, 2008
Sunday, March 9, 2008
Mush!
Even though there were a few bumps in the road this weekend (literally!) we accomplished the objective we set out to do- we rode on a dog sled! Just getting to Lake Placid was an adventure this weekend. I've never seen sleet like what was falling up there yesterday afternoon and evening! Things didn't exactly go as planned- Sam had some diffifult moments, starting with us leaving abruptly on Friday as soon as he arrived home from school. He had expected to leave Saturday morning, but we wanted to get a jump on the coming stormy weather. He had a couple of meltdowns on the trip- not wanting to use a quieter voice in a restaurant or hotel room, rejecting any food put in front of him, wanting to watch a TV show that wasn't even on, putting his hands over his ears any time Tom or I said something he didn't want to hear. I find it tough to be patient when we had planned the whole trip just for him and he was finding fault with all of it! I guess we should just be glad that most trips we go on turn out for the best, and we usually do ride out a few storms! The weather was truly horrible- even in a place where they are used to severe winter weather. We put the dog sled ride off until today so the weather had a chance to improve a little. Luckily it did- this morning it was only snowing. We had a nice morning-leisurly breakfast (Sam even ate 1/4 of a bagel!), took another swim in the hotel's indoor pool, packed up and headed for the frozen Mirror Lake. There was no one waiting in line for the dog sled rides (wonder why in the middle of the blizzard!), so Sam got to go around twice- once with each of us. I know he really enjoyed it, and will enjoy telling his friends and teachers in school about it. I supposed that's what its all about. We hear him get excited about trying something, and we want to make it happen for him. I don't want his anxiety about changes in scenery and routine to stop us from helping him to experience things. I just want to be able to better recognize the pattern here- a period of out and out rejection of the activity "No- I don't want to stay over at nana's OR go dog mushing", which leads to a kind of acceptance that it is happening, despite the protests, to a few more meltdowns along the way, just thrown in for good measure to make sure we know he's not giving up without a fight. When we are in the moment, hearing for the millionth time how he doesn't want to do something, it's hard to remember that there is a pattern to all this. And RDI training more often than not just goes out the window! So, while I would not give the weekend a score of perfect 10, I'd have to give it at least a 7. Hey, we did what we set out to do, we got away, we navigated a minefield of bad weather, and we got to go swimming during a blizzard- how cool is that????
Monday, March 3, 2008
Happy Birthday!
How time does fly! Sam's 7th birthday is tomorrow! I can remember pretty clearly the night before he was born back in 2001. It was an exciting and terrifying time for me. The things we've all been through since then I could have never imagined 7 years ago. Back then I was a different person. I feel like I've grown so much more than Sam over the last 7 years! In the beginning, I was so fearful of being a parent. After a while, I grew used to it and started to really love having this wonderful, unique person in my life. As guilty as I sometimes feel for Sam being diagnosed as "late", I'm thankful for the 4 1/2 years we lived in the "normal" world. They made me strong and built me up to be ready for what was ahead. If someone had told me 7 years ago tonight that I would be the mother of a special needs child, I probably would have made a detour to the psych ward when I arrived at the hospital in labor! It all goes to show that there probably is some kind of big plan at work out there, something that guides us to our proper place in life.
I'm also so thankful for the life we have. We are so lucky. Sam is a bright, happy, and fun child. He lives life day to day with no worry about the future. We do that for him. We have so many blessings. I read about the situations that parents of special needs children go through- the fights with the schools, the dirty looks from total strangers (or even their own family members!), the father with 3 autistic girls laid off from his job and it breaks my heart. Tom and I are so lucky to have each other, supportive family and friends, and especially to have Sam. It will be a happy birthday for all of us as we think about the last 7 years and how our lives have been so enriched. I wish I could help those that are not as fortunate as we are, even if it's just to lend a sympathetic "ear". Anyone who reads this and wants to "chat", email me. The door is always open!
I'm also so thankful for the life we have. We are so lucky. Sam is a bright, happy, and fun child. He lives life day to day with no worry about the future. We do that for him. We have so many blessings. I read about the situations that parents of special needs children go through- the fights with the schools, the dirty looks from total strangers (or even their own family members!), the father with 3 autistic girls laid off from his job and it breaks my heart. Tom and I are so lucky to have each other, supportive family and friends, and especially to have Sam. It will be a happy birthday for all of us as we think about the last 7 years and how our lives have been so enriched. I wish I could help those that are not as fortunate as we are, even if it's just to lend a sympathetic "ear". Anyone who reads this and wants to "chat", email me. The door is always open!
Friday, February 22, 2008
Getting a grip
It's the end of school break week, and I think Sam and I are both ready for school to begin again! It's not that we've had that tough of a vacation, or that we are getting on each other's nerves THAT much, it's just TIME for the regular routine to kick back in again.
We've had a quiet week activity-wise. We had planned a trip to Howe Caverns today with some of our old playgroup friends, but we had to cancel because of illness and bad weather, as happens so often in the winter. I think boredom and being cooped up in the house has made some things challenging for Sam. Our biggest issue this week has been back talk, as it has been for awhile.
After meeting and discussing strategy with Theresa (RDI consultant) this week, she has advised us to be very firm in regards to this issue. I have to admit I've felt at a loss at times when Sam has been "mouthing off" to me or Tom, not sure how to control it. We've done all the usual things, like yell back, try to reason, keep silent, etc. Theresa advised us to put him in time out each and every time he talked back to us. Yesterday he was in time out 3 times- today so far once. While I certainly don't feel that we have a handle on the problem yet, I do feel empowered by making this small change. Maybe it's the idea of having a definitive plan- some kind of "go to" strategy for when this crops us. Maybe it's because Tom and I actually discussed this and are on the same page. I'm also realizing that this isn't an overnight or even 2 week cure. Things take time. Sam didn't stop throwing things overnight, and this won't go away in the blink of an eye either. But I do feel better knowing we have a path to follow.
Sometimes I feel overwhelmed by all the mountains we have to climb. Just when it seems we have a handle on one thing, something else crops up. My mind can sometimes go into panic mode, thinking that time is wasting and that Sam is slipping into an abyss we won't be able to get out of. My latest concern is that he seems so immature compared to other kids his age. I know he has a developmental delay and that this is par for the course. This is what we are doing RDI for, to help him master the things that his brain was not "wired" to do at the regular time.
Speaking of RDI and the expense, we received a small grant from Wildwood Programs to put toward paying our consultant. We were also talking to another couple the other day, friends of ours who have 2 kids on the spectrum. They were in disbelief at the fact that we had been denied for the Medicaid Service Waiver. This made me start to think about appealing, or reapplying for it. When we applied in October 2006, Sam had just started school in the "regular" classroom, and most of our future difficulties had not even begun. Obviously, since then circumstances have changed, maybe enough to reverse the initial ruling. This kind of funding would come in so handy to us- we have every intention of continuing with RDI and really feel the guidance of our consultant is a must, but there's no doubt it's a major expense.
We've had a quiet week activity-wise. We had planned a trip to Howe Caverns today with some of our old playgroup friends, but we had to cancel because of illness and bad weather, as happens so often in the winter. I think boredom and being cooped up in the house has made some things challenging for Sam. Our biggest issue this week has been back talk, as it has been for awhile.
After meeting and discussing strategy with Theresa (RDI consultant) this week, she has advised us to be very firm in regards to this issue. I have to admit I've felt at a loss at times when Sam has been "mouthing off" to me or Tom, not sure how to control it. We've done all the usual things, like yell back, try to reason, keep silent, etc. Theresa advised us to put him in time out each and every time he talked back to us. Yesterday he was in time out 3 times- today so far once. While I certainly don't feel that we have a handle on the problem yet, I do feel empowered by making this small change. Maybe it's the idea of having a definitive plan- some kind of "go to" strategy for when this crops us. Maybe it's because Tom and I actually discussed this and are on the same page. I'm also realizing that this isn't an overnight or even 2 week cure. Things take time. Sam didn't stop throwing things overnight, and this won't go away in the blink of an eye either. But I do feel better knowing we have a path to follow.
Sometimes I feel overwhelmed by all the mountains we have to climb. Just when it seems we have a handle on one thing, something else crops up. My mind can sometimes go into panic mode, thinking that time is wasting and that Sam is slipping into an abyss we won't be able to get out of. My latest concern is that he seems so immature compared to other kids his age. I know he has a developmental delay and that this is par for the course. This is what we are doing RDI for, to help him master the things that his brain was not "wired" to do at the regular time.
Speaking of RDI and the expense, we received a small grant from Wildwood Programs to put toward paying our consultant. We were also talking to another couple the other day, friends of ours who have 2 kids on the spectrum. They were in disbelief at the fact that we had been denied for the Medicaid Service Waiver. This made me start to think about appealing, or reapplying for it. When we applied in October 2006, Sam had just started school in the "regular" classroom, and most of our future difficulties had not even begun. Obviously, since then circumstances have changed, maybe enough to reverse the initial ruling. This kind of funding would come in so handy to us- we have every intention of continuing with RDI and really feel the guidance of our consultant is a must, but there's no doubt it's a major expense.
Monday, February 4, 2008
(Second) Best Small Library in America
Just thought I'd veer off topic for a minute here to let you all know that I'm employed at one of the libraries deserving of "Special Mention" for the annual "Best Small Library in America" award! We were asked to apply for this honor last fall, and getting together all the necessary ingredients for submission was a challenge, to say the least. For someone with zero grant-writing experience, it was an eye-opener. I've never considered summery writing to be among my strong points, nor do I consider gathering lots of parts together to make a comprehensive whole a talent either. Somehow, all the elements came together and made sense to the folks at Library Journal and the Bill and Melinda Gates Foundation! While we didn't win the grand prize (the the $15000 that goes with it), being mentioned makes us feel pretty special. For those of you who have been to the Castleton Public Library, you are familier with it's "homey" size and atmosphere. For those of you who haven't- let's just say several Castleton Public Libraries could probably fit into your house!
Just knowing how hard we work at the library to reach out and be a big part of the community, I'm so glad that we have achieved recognition from such prestigeous organizations. It makes me feel personally like I was able to overcome a big hurdle by getting over my fear (I honestly get almost physically ill when I think of all the work that has to be done to put one of these things out) of doing this. I feel much more competitive now that we DIDN'T win- it makes me want to try to improve our presentation for next year.
I can also see the good that may hopefully come from this small recognition. Already we have some positive changes coming in. We may be able to use this achievement as leverage when going to politians to get some more money. There's talk of a special dinner with representatives from Upper Hudson and local government. All this is pretty exciting, we'll see how it all plays out. My biggest question right now is: What will I wear to such a thing???
Just knowing how hard we work at the library to reach out and be a big part of the community, I'm so glad that we have achieved recognition from such prestigeous organizations. It makes me feel personally like I was able to overcome a big hurdle by getting over my fear (I honestly get almost physically ill when I think of all the work that has to be done to put one of these things out) of doing this. I feel much more competitive now that we DIDN'T win- it makes me want to try to improve our presentation for next year.
I can also see the good that may hopefully come from this small recognition. Already we have some positive changes coming in. We may be able to use this achievement as leverage when going to politians to get some more money. There's talk of a special dinner with representatives from Upper Hudson and local government. All this is pretty exciting, we'll see how it all plays out. My biggest question right now is: What will I wear to such a thing???
Friday, January 25, 2008
Smooth mornings
This morning we did an RDI activity while getting dressed. Sam requested that I stay in his room to "help him" get dressed, so I used the opportunity to do some non-verbal communication. I really didn't speak at all once he got going with the dressing- just used gestures like nodding yes or no; used the "thumbs up" sign to tell he he did ok; did some pointing to bring attention to certain things, and cleared my throat a few times to get him to look at me. The good thing about it was that Sam didn't seem to think it was weird that I was not talking- lots of times when I try to do something like that, he always asks me why I'm not saying anything. It was great that this time he seemed to understand that we were playing a game, and that talking wasn't part of it. Another thing I really tried to be cognizant of was s l o w i n g down. This is one of the hardest aspects of RDI for me to get used to. I'm so accustomed to a goal-oriented lifestyle; gotta go here and do this within this time frame, etc. Even though the clock was ticking and it was getting close to the time we needed to be on the road to school, I stopped myself from hurrying things along.
I look back to what our mornings were like a year ago, and I can't help but marvel at the change. During his kindergarten year I did nearly everything for him, from preparing and nagging him to eat his breakfast to getting him into the bathroom to wash up and brush teeth, to dressing him, to packinghis backpack, to putting on his coat, boots, hat, and mittens, to walking him to the bus stop and putting him on the bus. I'm happy to realize that this year he is doing at least 1/2 of these things by himself! There is no doubt that he's much more capable this year, and also we all don't feel like we are handling school in "crisis mode" like we were last year. I notice that despite initial resistance to changes, Sam nearly always embraces new responsibilities. Maybe by next year he'll be making his own breakfast and actually eating it!
I look back to what our mornings were like a year ago, and I can't help but marvel at the change. During his kindergarten year I did nearly everything for him, from preparing and nagging him to eat his breakfast to getting him into the bathroom to wash up and brush teeth, to dressing him, to packinghis backpack, to putting on his coat, boots, hat, and mittens, to walking him to the bus stop and putting him on the bus. I'm happy to realize that this year he is doing at least 1/2 of these things by himself! There is no doubt that he's much more capable this year, and also we all don't feel like we are handling school in "crisis mode" like we were last year. I notice that despite initial resistance to changes, Sam nearly always embraces new responsibilities. Maybe by next year he'll be making his own breakfast and actually eating it!
Wednesday, January 23, 2008
More about RDI....
To continue with what I was writing about yesterday, incorporating RDI into our everyday lives is proving to be a challenge. I find myself thinking about every word that comes out of my mouth, and my thoughts range from "I'm not sure if what I just said was really "RDI-like" and I feel like I use the same phrases all the time." to "Shoot! I really should have not phrased that as a question (or made a demand). I should have made that a declarative statement." So really the best it gets at this point is an attempt to change the way I say things, and being pretty doubtful that what I'm saying is in any way effective. Perhaps I really should just opt for silence.
Another thing I have a great deal of trouble with is keeping my cool with Sam in situations where he's doing something (or not doing something) that needs to be done, like on a time deadline. This morning we were about 10 minutes away from bus pickup, and he was taking his time with packing his backpack, and getting his coat on. He wanted to put his coat and gloves on before packing the backpack, he was walking around touching all the door casings (something he just started doing recently), and just not being mindful of the time. (Like he ever is- I'm realizing as I write this that last year it would have been unheard of for him to even approach doing any of these things- so what do I have to complain about?) Anyway, this is the very thing I mean, I have trouble keeping my cool when things need to get done, so I grabbed his backpack and packed it myself. I wonder if this made him feel bad, since he has been packing his backpack himself. I only realize these things in retrospect, so I really need training in how to keep my cool in these situations.
It's hard to put everything you say and do under a microscope. I tend to be my own worst self-critic, so I am finding fault with lots of my attempts at communication. I guess I really need to live the whole "It's a marthon, not a sprint" philosphy. How could 6 years of one way of communication possibly be replaced overnight by another way?
Another thing I have a great deal of trouble with is keeping my cool with Sam in situations where he's doing something (or not doing something) that needs to be done, like on a time deadline. This morning we were about 10 minutes away from bus pickup, and he was taking his time with packing his backpack, and getting his coat on. He wanted to put his coat and gloves on before packing the backpack, he was walking around touching all the door casings (something he just started doing recently), and just not being mindful of the time. (Like he ever is- I'm realizing as I write this that last year it would have been unheard of for him to even approach doing any of these things- so what do I have to complain about?) Anyway, this is the very thing I mean, I have trouble keeping my cool when things need to get done, so I grabbed his backpack and packed it myself. I wonder if this made him feel bad, since he has been packing his backpack himself. I only realize these things in retrospect, so I really need training in how to keep my cool in these situations.
It's hard to put everything you say and do under a microscope. I tend to be my own worst self-critic, so I am finding fault with lots of my attempts at communication. I guess I really need to live the whole "It's a marthon, not a sprint" philosphy. How could 6 years of one way of communication possibly be replaced overnight by another way?
Subscribe to:
Posts (Atom)