I've been pretty bad at this. I must admit an addiction to facebook has not helped. It's much easier to post a quick status update...in under 420 characters. And get immediate feedback.
But I would like to keep everyone up to date. I won't slam you with too much...I know your eyes must roll back in your head when you get these updates...reminder: they are much easier to read as a blog as opposed to an email update. :)
Chris is doing well living in the city and working on Long Island. He enjoys his job and his life. Nick is gearing up with finals.
Alex is in a love/hate relationship with school. Every day (EVERY!) she tells me how she doesn't want to go back...can't she stay home, be homeschooled and so on. After extended breaks and vacations it's worse. But once in school she has a good time. She loves her teacher and she loves learning. I think she might get anxious because she sees many kids making poor decisions and that makes her nervous. But she is great. She's made great progress this year, is learning to read and loves it. She just turned 6. She has her second dance recital coming up in June. She's teaching Kath her dances. She also rides a horse every Monday. She finished her religion classes last week. She is a Daisy. Spring soccer has started and she is on my team. She's a very busy girl.
Kath also continues to be busy. We just had her year evaluation. She has done so well in the past year. When we look back at her paperwork from her tests a year ago...to now...it is amazing. Kath scores 'below average' but she's finally in the average range. Many skills seem to be pulling together for her. She is of course still way behind where we want her to be and she still has daily struggles but she is amazing.
It has been said to me that when I first suggested the plan of continuing Kath to remain at home for her therapies, and attend a regular education nursery school, that they didn't see how this would work but that after the year, they see it did work for Kath. We were given kudos for making Kath such a priority. Felt good to be acknowledged but also made us think and realize just how intense a year it was. Kath had 13 therapies a week, with another one thrown in once a month as the Teacher For the Visually Impaired consults with us monthly. 12 of those therapies are here at home. One at the stables...an hour ride from here. She goes to school 2 days a week for 2 and 1/2 hours. And she has dance class once a week.
It would have been easier to put Kath in a school and have all therapies there, but I didn't feel she was ready for that. She wasn't. Her stamina was such that she was exhausted after 2 hours of school. She makes it much longer in the day now...sometimes her therapies start at 8:30AM, other days they end at 6:30PM. But I can reset her when need be, hold her and have her reapproach things, whereas in a school setting they have many other students to also consider.
She scored around a three year old range for many of her cognitive scores...that is only about 5-6 months behind. Her physical scores are a bit further back...and that will impact gripping writing utensils, cutting with scissors and so on. For them she is more at the 2 1/2 year old range-she's 3 1/2.
Her vision issues may slog her reading abilities, but Kath has been pretty amazing.
Speech wise she has become quite the yacker and after you've been around her for a bit, understand the context, she is easier to understand.
Kath has her first dance recital coming up on May 14th. She is a mouse in "A Cinderella Story." She is thrilled and she has an adorable costume. I'll try to post a picture.
We've made a decision about next year. We've decided that Kath will be going to a program school. She will be going to Village Preschool from 9-1. Since Robin won't be able to take care of the girls next year we are struggling to find good child care that will allow Kath the least amount of transitions and distractions as possible. On that same turn I'm returning to teaching full time next Fall. My fellow teachers are very very excited...that feels very nice. Trying to figure out how I will fit 'it all in' is an anxiety filled concept, but I'm sure it will work out.
Hope this gives you a heads up--hoping to get back on soon and tell you some funny stories about the girls too.
Enjoy and thanks for reading!
Sunday, May 2, 2010
Thursday, February 18, 2010
February
It has been a fight for me lately to write. Even in 'update mode.' I find an easier time going on facebook and putting up status that gives blurbs about our going-ons. It's quick, there's feedback and I can keep in touch with about 500 people at one time.
But I do notice that I am not writing as much. My story has been stagnant for way too long. And I've missed documenting some pretty fantastic times and/or issues.
I found that as I sat to read a book for school...a book I need to really concentrate for, take notes on and consider how to make it most accessible for my students...I kept jumping up every couple of minutes. I grabbed something to eat. Then to drink. Then feed the fish. Then take something out for dinner. It was strange. I could not concentrate. I thought of things I forgot, then fought with the guilt of it not having those things done and feeling guilty for sitting and reading/doing schoolwork.
As you may be able to tell...to those of you who receive this blog as an email and update...this is a disappointing one for you so far. As for being a part of my online blog...it is a bit more in line since I want to follow myself as a writer too. :)
I thought and worried that I might have ADHD...an attention deficit problem. I don't get to often have complete thoughts longer than child size bites.
~~~As if to highlight this thought...Kath just woke up wheezing, coughing. She's in my arms...I'm picking one key at a time.~~~
So as a writer...I need to make sure time is well-spent. I spend time circling around which project I want to work on. My blog. My young adult fiction book. My children's picture book. My nonfiction book about moms who face a different life with children with disabilities. I think one thing I must do, is instead of worrying about what and how...I need to just DO something.
Now here's your update on the life and times of US. :)
Valentine's. You would have thought it was a holiday here...Alex was so excited. ;D
She talked about if for days, prepared for it like it was Christmas and bubbled on the actually day. She made everyone in her class individual valentines...with lace doilies, sticker hearts, and lots of loving thoughts. Quite the girl. Kath made her teachers valentines as well as Chris (they are on his refrigerator in his new apartment).
We have had so many really great and inspiring moments with Kath. She is amazing. But just recently I also had be put back into reality world. Because of my schedule, I haven't been able to be at Kath's school, then she was sick and missed two days (a week for her school)then she had a day off. So I went to school with her and saw some of her struggles, which to many of you, it might not seem like much of a big deal, but in the line of preparation for a regular education program...is huge.
~She struggles with scissors.For a very long time she wouldn't even pick up a pair of scissors. If she knows something is too hard, she balks at it. So I --being the good safe mother I am--began to leave little scissors laying around. If she is left to her own devices sometimes, she will work at something that she otherwise won't do. And it is working. Although she continues to hold the scissors with two hands...she is picking them up and clipping things...paper...pajamas...:) But when you go to school you can see that this event that we celebrated, was really just another show of how far behind she is with other kids. The other kids are working on cutting straight, we are still working on holding the scissors and cutting short strips of paper.
~Then she was supposed to 'sew' together a paper to make a Valentine envelope. She took one look at it and backed away. I had to break it down and show her and she basically pulled the string through but wouldn't do both up and down in the sewing. And she wouldn't hold the project while doing it. I bought her and Alex a mini-pillow sewing kit and she did much better but it is still very hard. And she wouldn't hold it herself. But she didn't back away from it. Everything is step by step--the less distractions the better she does.
~She needs lots of 'pre-sets.' That means we have to talk and prepare her for everything..."Ok, we are going to work on...in two minutes. When we do that we are going to..." "Ok we are going to eat in two minutes, you need to wash your hands and help me set the table..." And God help you if you don't preset. You will have meltdowns and you will not get anywhere. Ask Roger. :)
100 days of school. Alex's class celebrated the first 100 days of school with a character named Zero the Hero (a high school theatre student who comes dressed in cape and mask and celebrates with them!). Each student had to bring in 10 items for each kid and then they all brought home a bad of assorted items. We brought in bells. There was a variety of pastas, and stickers and so on. It was very exciting and cute. Books were read and all.
Chris' apartment. Chris and his roommates found an apartment in Manhattan. They are very thrilled and they should be because it is beautiful. I thought that it might be in some rundown part of town in a run down building...:D but it is really nice. Four floors up (doesn't sound like much until you walk it...:D, but they will get exercise). Three bedrooms with wonderful lighting in the bedrooms, two bathrooms, and a nice size kitchen and living room. Very exciting. He is living with his cousin and a sister of a girl he went to school with. Very good situation. He is still looking for some more permanent work...and it would be great if he can find something pretty solid so he can start concentrating on going back to grad school.
LI visit. We finally got down to Long Island. It has been too long, but it is very hard for us to travel down there with the many therapies Kath has, the length of the trip, the number of illnesses the girls have had this fall and the many storms we had every time we tried to come down. SO we drove down to Chris' apartment first. Unloaded some things we brought down for him, enjoyed our walk to get lunch, enjoyed the apartment tour and the overall happiness Chris is experiencing. Then we left to drive out to Long Island after about our two hours stopover. The first mistake was when I wrote the directions on the back of an envelope I left with Chris...so we actually drove ALL around Manhattan and ended up where we started. Nice tour though. So it took a bit more of a chunk of time... we drove to N. Lindenhurst first and visited with my dad and my brother Charlie. We enjoyed sitting and catching up and they enjoyed seeing the crazy girls. We couldn't catch up with Johnny because it was Valentine's Day and he had plans. After our hour allotted time we headed to S. Lindenhurst and visited my mother. She gave us our Christmas presents and we got to see her new beautiful apartment. The girls loved their gifts as did we. It was fun to have Christmas in February--we'll have to remember that. :) Then after our hour allotted time we headed to West Islip and visited Aunt Eileen. We played for an hour there and enjoyed our little catch up time and headed back on the road. By the time we got home that night I realized I never fed the girls dinner and it was 1AM. Whew.
Daisies. Alex is a Daisy, the first step in Girl Scouts. And I am the troop leader. Oh my. :) It is a lot of fun. We alternate each week with religion class. So one week she has religion on Tuesday night, then the next week is Daisies. The girls come to our house to learn about how to be a strong leader who makes a positive difference in the world and takes care of the environment.
School Cuts. As with everywhere, our district is once again looking at making cuts to staff to try to make ends meet. This is scary to us in yet another whole way. Yes, it means some of my friends will be without a job. Mortgages and families are greatly impacted by this is an economy where there aren't any jobs to be had. On another note, again as a teacher, it will mean larger class sizes. That always makes it harder to teach...imagine grouping 30 hormonal teens in a room and try to teach them Shakespeare! Or any another subject. Or putting that many kindergartners or elementary age students in a room and try to teach a new topic...try to make sure they ALL get it when kids learn at such different rates. As a parent it petrifies me because I see and know how important it is to have smaller class sizes in order for my kids to learn, especially my Kath. And since we already cut aides a couple of years ago!!! There are even less aids. I know that I haven't had any aids in my classroom in years! Kath will need a one-on-one aid, but she can do regular education work...just slower. Especially if it also entails physically doing something...like cutting, scissors, writing. Her brain can learn...it takes more repetition than a 'regular' ed student, but she is not stupid, she just learns differently. We want her taught as a regular student as much as possible. But when you add in the physical drawbacks...well then we have a perfect storm brewing with out the small size classrooms and the aids. So when you consider your own school budgets, please realize that every school has a Kath. If we cut back on education now...what will happen later? These kids will be the power behind the government one day...do we really want them educated 'just enough' or as much as we were educated...or do we want them better and smarter in a world that competes globally?
Robin. Our wonderful child care provider Robin has informed us that she won't be able to take care of the girls next year. Her mom has Alzheimer's and she will be moving in with Robin's family. Robin will need to give her mom all of her attention. That throws us for a bit of a tailspin. Robin has been wonderful. She comes to our house, there is less transition for the girls, Kath has her therapies at home, the mornings are calmer, the toys are here. Robin is great. She plays, paints, plans projects, even takes Kath to ballet. We feel Kath has made as much progress as she has because of the ideal situation we have with Robin or I being here for Kath. Next year is now a giant question mark. Alex can get dropped off at school for before- school care (even though she has been requesting to be homeschooled several times a week!! and the idea that she will spend MORE time in school...ugh). But Kath...her special education teacher has even said that she thinks we made a great decision not putting her in a a program all day. She said she doesn't have the stamina yet and she's not sure she could handle it next year yet either. Hope sees her one day at 8:30 in the morning, another day at 2:30. She sees a huge difference in what she is able to learn and do with those two different times. Kath would have to be placed in full time day care. None of the special education school run all day programs that we could get her to...one starts at 7:30...but both Roger and I need to already be in school at that time and it's in the middle of both our jobs. So...we have no idea what we are doing yet. If Lotto could be won and allow me to take a year off so we could get it figured out...that would be great. Say prayers for us.
Alex has already experienced bullying. She started to ask us to drive her to school. After a couple of weeks of asking, she finally told us 1-she thinks she's too young for the bus---kids do things, blame other kids, and the innocent get punished. And she stood up and told some boys to leave one of the boys in her classroom alone. She then became their victim...with second grade boys putting their faces in hers telling her they HATE her.
Homeschooling. As you can see...especially if you know me...I have always been interested in homeschooling. I love the time I spend with my kids. And I think I'm a pretty good teacher. And I think Kath learns best with one-on-one with someone who knows her triggers and what motivates her. If it were feasible financially, I would do this....Even for a year to get full concentration with Kath and so Alex can get her confidence back.
Both girls are taking ballet and loving it. Both will be in shows this spring. More to follow.
Alex wants to take piano now too. If she cuts back her riding and yoga when we take Kath to hippotherapy...we might be able to swing it. We're trying.
Facebook. It is is the easiest way sometimes for me to keep in touch with everyone--so feel free to set up an account and friend me. :)
Olympics. We have been watching as much of the Olympics as possible. The girls don't really understand it is country against country...they are mostly being exposed to different sports. Kath and Alex saw the snowboarding on the half pike. Both stopped in the tracks, jaws dropped and they both said REALLY REALLY excitedly "I WANT TO DO THAT!!!" Greeattt! :) Kath and I watched the bobsledding last night while we tried to get her wheezing under control (she sounds raspy today, but she can talk above a whisper--I kept putting peppermint on her chest)..and Kath would say "They drivin on walls!!!"
Healing Touch. I take the girls to hippotherapy/lessons and yoga...and healing touch on Saturdays at Every Body Counts Therapy Center. Healing touch is an amazing alternative healing energy. Yesterday Kath told Britta (her yoga/healing therapy teacher) to stop healing touch...Britta said "why?" "Because it hurts my booboo." Britta asked where her booboo was and Kath pointed to the left side of her head...where the stroke made the most impact. It is amazing. I have even done it to her, when her back was turned and she immediately turned around...she felt it. Alex tells me it feels like a massage to her. I've had it done too and I had the same experience.
Well...I think that is good for now. Are your eyes tired? I hope this finds you all well.
But I do notice that I am not writing as much. My story has been stagnant for way too long. And I've missed documenting some pretty fantastic times and/or issues.
I found that as I sat to read a book for school...a book I need to really concentrate for, take notes on and consider how to make it most accessible for my students...I kept jumping up every couple of minutes. I grabbed something to eat. Then to drink. Then feed the fish. Then take something out for dinner. It was strange. I could not concentrate. I thought of things I forgot, then fought with the guilt of it not having those things done and feeling guilty for sitting and reading/doing schoolwork.
As you may be able to tell...to those of you who receive this blog as an email and update...this is a disappointing one for you so far. As for being a part of my online blog...it is a bit more in line since I want to follow myself as a writer too. :)
I thought and worried that I might have ADHD...an attention deficit problem. I don't get to often have complete thoughts longer than child size bites.
~~~As if to highlight this thought...Kath just woke up wheezing, coughing. She's in my arms...I'm picking one key at a time.~~~
So as a writer...I need to make sure time is well-spent. I spend time circling around which project I want to work on. My blog. My young adult fiction book. My children's picture book. My nonfiction book about moms who face a different life with children with disabilities. I think one thing I must do, is instead of worrying about what and how...I need to just DO something.
Now here's your update on the life and times of US. :)
Valentine's. You would have thought it was a holiday here...Alex was so excited. ;D
She talked about if for days, prepared for it like it was Christmas and bubbled on the actually day. She made everyone in her class individual valentines...with lace doilies, sticker hearts, and lots of loving thoughts. Quite the girl. Kath made her teachers valentines as well as Chris (they are on his refrigerator in his new apartment).
We have had so many really great and inspiring moments with Kath. She is amazing. But just recently I also had be put back into reality world. Because of my schedule, I haven't been able to be at Kath's school, then she was sick and missed two days (a week for her school)then she had a day off. So I went to school with her and saw some of her struggles, which to many of you, it might not seem like much of a big deal, but in the line of preparation for a regular education program...is huge.
~She struggles with scissors.For a very long time she wouldn't even pick up a pair of scissors. If she knows something is too hard, she balks at it. So I --being the good safe mother I am--began to leave little scissors laying around. If she is left to her own devices sometimes, she will work at something that she otherwise won't do. And it is working. Although she continues to hold the scissors with two hands...she is picking them up and clipping things...paper...pajamas...:) But when you go to school you can see that this event that we celebrated, was really just another show of how far behind she is with other kids. The other kids are working on cutting straight, we are still working on holding the scissors and cutting short strips of paper.
~Then she was supposed to 'sew' together a paper to make a Valentine envelope. She took one look at it and backed away. I had to break it down and show her and she basically pulled the string through but wouldn't do both up and down in the sewing. And she wouldn't hold the project while doing it. I bought her and Alex a mini-pillow sewing kit and she did much better but it is still very hard. And she wouldn't hold it herself. But she didn't back away from it. Everything is step by step--the less distractions the better she does.
~She needs lots of 'pre-sets.' That means we have to talk and prepare her for everything..."Ok, we are going to work on...in two minutes. When we do that we are going to..." "Ok we are going to eat in two minutes, you need to wash your hands and help me set the table..." And God help you if you don't preset. You will have meltdowns and you will not get anywhere. Ask Roger. :)
100 days of school. Alex's class celebrated the first 100 days of school with a character named Zero the Hero (a high school theatre student who comes dressed in cape and mask and celebrates with them!). Each student had to bring in 10 items for each kid and then they all brought home a bad of assorted items. We brought in bells. There was a variety of pastas, and stickers and so on. It was very exciting and cute. Books were read and all.
Chris' apartment. Chris and his roommates found an apartment in Manhattan. They are very thrilled and they should be because it is beautiful. I thought that it might be in some rundown part of town in a run down building...:D but it is really nice. Four floors up (doesn't sound like much until you walk it...:D, but they will get exercise). Three bedrooms with wonderful lighting in the bedrooms, two bathrooms, and a nice size kitchen and living room. Very exciting. He is living with his cousin and a sister of a girl he went to school with. Very good situation. He is still looking for some more permanent work...and it would be great if he can find something pretty solid so he can start concentrating on going back to grad school.
LI visit. We finally got down to Long Island. It has been too long, but it is very hard for us to travel down there with the many therapies Kath has, the length of the trip, the number of illnesses the girls have had this fall and the many storms we had every time we tried to come down. SO we drove down to Chris' apartment first. Unloaded some things we brought down for him, enjoyed our walk to get lunch, enjoyed the apartment tour and the overall happiness Chris is experiencing. Then we left to drive out to Long Island after about our two hours stopover. The first mistake was when I wrote the directions on the back of an envelope I left with Chris...so we actually drove ALL around Manhattan and ended up where we started. Nice tour though. So it took a bit more of a chunk of time... we drove to N. Lindenhurst first and visited with my dad and my brother Charlie. We enjoyed sitting and catching up and they enjoyed seeing the crazy girls. We couldn't catch up with Johnny because it was Valentine's Day and he had plans. After our hour allotted time we headed to S. Lindenhurst and visited my mother. She gave us our Christmas presents and we got to see her new beautiful apartment. The girls loved their gifts as did we. It was fun to have Christmas in February--we'll have to remember that. :) Then after our hour allotted time we headed to West Islip and visited Aunt Eileen. We played for an hour there and enjoyed our little catch up time and headed back on the road. By the time we got home that night I realized I never fed the girls dinner and it was 1AM. Whew.
Daisies. Alex is a Daisy, the first step in Girl Scouts. And I am the troop leader. Oh my. :) It is a lot of fun. We alternate each week with religion class. So one week she has religion on Tuesday night, then the next week is Daisies. The girls come to our house to learn about how to be a strong leader who makes a positive difference in the world and takes care of the environment.
School Cuts. As with everywhere, our district is once again looking at making cuts to staff to try to make ends meet. This is scary to us in yet another whole way. Yes, it means some of my friends will be without a job. Mortgages and families are greatly impacted by this is an economy where there aren't any jobs to be had. On another note, again as a teacher, it will mean larger class sizes. That always makes it harder to teach...imagine grouping 30 hormonal teens in a room and try to teach them Shakespeare! Or any another subject. Or putting that many kindergartners or elementary age students in a room and try to teach a new topic...try to make sure they ALL get it when kids learn at such different rates. As a parent it petrifies me because I see and know how important it is to have smaller class sizes in order for my kids to learn, especially my Kath. And since we already cut aides a couple of years ago!!! There are even less aids. I know that I haven't had any aids in my classroom in years! Kath will need a one-on-one aid, but she can do regular education work...just slower. Especially if it also entails physically doing something...like cutting, scissors, writing. Her brain can learn...it takes more repetition than a 'regular' ed student, but she is not stupid, she just learns differently. We want her taught as a regular student as much as possible. But when you add in the physical drawbacks...well then we have a perfect storm brewing with out the small size classrooms and the aids. So when you consider your own school budgets, please realize that every school has a Kath. If we cut back on education now...what will happen later? These kids will be the power behind the government one day...do we really want them educated 'just enough' or as much as we were educated...or do we want them better and smarter in a world that competes globally?
Robin. Our wonderful child care provider Robin has informed us that she won't be able to take care of the girls next year. Her mom has Alzheimer's and she will be moving in with Robin's family. Robin will need to give her mom all of her attention. That throws us for a bit of a tailspin. Robin has been wonderful. She comes to our house, there is less transition for the girls, Kath has her therapies at home, the mornings are calmer, the toys are here. Robin is great. She plays, paints, plans projects, even takes Kath to ballet. We feel Kath has made as much progress as she has because of the ideal situation we have with Robin or I being here for Kath. Next year is now a giant question mark. Alex can get dropped off at school for before- school care (even though she has been requesting to be homeschooled several times a week!! and the idea that she will spend MORE time in school...ugh). But Kath...her special education teacher has even said that she thinks we made a great decision not putting her in a a program all day. She said she doesn't have the stamina yet and she's not sure she could handle it next year yet either. Hope sees her one day at 8:30 in the morning, another day at 2:30. She sees a huge difference in what she is able to learn and do with those two different times. Kath would have to be placed in full time day care. None of the special education school run all day programs that we could get her to...one starts at 7:30...but both Roger and I need to already be in school at that time and it's in the middle of both our jobs. So...we have no idea what we are doing yet. If Lotto could be won and allow me to take a year off so we could get it figured out...that would be great. Say prayers for us.
Alex has already experienced bullying. She started to ask us to drive her to school. After a couple of weeks of asking, she finally told us 1-she thinks she's too young for the bus---kids do things, blame other kids, and the innocent get punished. And she stood up and told some boys to leave one of the boys in her classroom alone. She then became their victim...with second grade boys putting their faces in hers telling her they HATE her.
Homeschooling. As you can see...especially if you know me...I have always been interested in homeschooling. I love the time I spend with my kids. And I think I'm a pretty good teacher. And I think Kath learns best with one-on-one with someone who knows her triggers and what motivates her. If it were feasible financially, I would do this....Even for a year to get full concentration with Kath and so Alex can get her confidence back.
Both girls are taking ballet and loving it. Both will be in shows this spring. More to follow.
Alex wants to take piano now too. If she cuts back her riding and yoga when we take Kath to hippotherapy...we might be able to swing it. We're trying.
Facebook. It is is the easiest way sometimes for me to keep in touch with everyone--so feel free to set up an account and friend me. :)
Olympics. We have been watching as much of the Olympics as possible. The girls don't really understand it is country against country...they are mostly being exposed to different sports. Kath and Alex saw the snowboarding on the half pike. Both stopped in the tracks, jaws dropped and they both said REALLY REALLY excitedly "I WANT TO DO THAT!!!" Greeattt! :) Kath and I watched the bobsledding last night while we tried to get her wheezing under control (she sounds raspy today, but she can talk above a whisper--I kept putting peppermint on her chest)..and Kath would say "They drivin on walls!!!"
Healing Touch. I take the girls to hippotherapy/lessons and yoga...and healing touch on Saturdays at Every Body Counts Therapy Center. Healing touch is an amazing alternative healing energy. Yesterday Kath told Britta (her yoga/healing therapy teacher) to stop healing touch...Britta said "why?" "Because it hurts my booboo." Britta asked where her booboo was and Kath pointed to the left side of her head...where the stroke made the most impact. It is amazing. I have even done it to her, when her back was turned and she immediately turned around...she felt it. Alex tells me it feels like a massage to her. I've had it done too and I had the same experience.
Well...I think that is good for now. Are your eyes tired? I hope this finds you all well.
Saturday, January 30, 2010
Wow. It's been awhile....
It certainly has been quite the while. Sorry. Some is a blur...ok, most. We have been trying to get down to Long Island to visit family since Christmas and it seems we are due/have gotten snow every weekend, Sundays--the days we have time to go down or the girls have been sick. Now this weekend Roger has a writer's retreat and I have grades due Tuesday, so it won't happen again this weekend. Ugh.
We are in a bitter cold spell right now. It was 5 degrees when I woke up today and it only got to about 12 degrees during the day. Yesterday we had a strange snow squall come through and within 20-30 minutes we got 2-3 inches of snow and more cold and incredible wind.
Kath has been sick this week. She was pretty scary. I took her to the doctor's on Tuesday because she had a couple of nights of this harsh sounding cough that made it so she couldn't catch her breath...it was a long sucking in sound as she tried to fill her lungs. Very unsettling. Took her into the bathroom and made it sauna-like...that didn't seem to help. Wrapped a blanket around her, and took her outside, that didn't seem to help. It turned out it was croup. Again.
The doctor (not her regular pediatrician)said she wasn't worried since Kath was eating okay. Of course that egg sandwich she was chomping on in the doctor's office was the last thing she ate until today. That night she ran a fever and continued to cough. Then on Wednesday night she not only was running a fever, having trouble catching her breath, coughing, runny nose and not eating, but her hands began to have tremors. Alex was also home Wednesday and then Thursday because she was coughing with a runny nose...and glassy eyes. I was afraid that whatever Kath had, Alex would get and pass along.
Back to the doctor's we went on Thursday. On Tuesday Kath had been a pretty peepy chickie, Thursday she made me hold her, didn't even want to get dressed -she went in her pjs. She sat listlessly on the couch, at a slant and not even tried to help herself. This time, it was a nurse practitioner, and she said it was an ear infection.
Today Kath finally got up and played some. She also ate. And seems to be on an upswing. Whew. Alex went to school today, but her eyes still look glassy. Hoping she doesn't get it. They said it could have been strep too...but that they were giving Kath the same meds they would give her for the ear infection....
Kath is back to doing hippotherapy. We are on Saturdays. So, after Alex's ballet class, we head out and have a yoga/healing touch session...then riding time. It is amazing how different Kath is with just the time switch. We used to have it on Monday's at 4PM, now we have it Saturdays at 2. Kath says goodbye at the door, gets on the horse 'by herself' and has a great time...much different from the girl I hadd to stay with for the whole therapy session, holding her leg. Alex takes sibling lessons and loves it too! As always.
Kath is in a ballet class at our local arts center. I was going to sign her up at Alex's dance studio but her teacher made a big deal about Kath not being potty trained...despite one other mother telling me that her daughter wasn't trained. I think I ran into my first unprovable case of discrimination, I don't think she wanted to deal with Kath's disabilities. It turned out to be a blessing in disguise--as that usually happens--and we found the local place's teacher used to work as a special education teacher and she loves Kath. Kath will be in her first show in April or May-"A Cinderella Story" and she will a castle mouse. She is tickled. Kath giggles the whole class, the movement and the ability to move and dance brings her so much joy.
I have continued to work on my writing and I am really enjoying it and I think it's halfway decent, but unfortunately, by the time I take care of every body else for the day...I don't even have energy to take care of dishes, I go onto Facebook and see how my hemimoms are doing and try to have some time with other people/moms, sharing stories. I also find myself so drained I sometimes just sit and watch NCIS stories...crazy.
We lost power for several hours this week--Monday. No one else on our block did and when it came on it was in a brown out type situation...the pump wouldn't work--so no water or flushing for about 10 hours. When it finally came back on after 10PM one casualty was the phone. It seems something was fried in the surges, so the answering machine in inoperable, so call my cell if you need to reach us.
We are at yet another crossroads though since we found out this week that our sitter will be totally unavailable for next year. So we went from toying with the idea again of homeschooling~~~(Alex has gone from loving school to telling me she is 'lonely' in school and wants to be homeschooled, her teacher says she's great and wonderful, has friends and all...)and keeping Kath in a spot where she gets more out of one on one...her special ed teacher told me this week that she's worried because she doesn't see that Kath has the stamina for a full time program yet,~~~ to looking at full time programs/day care for Kath and putting Alex in before school care before her full day of school. She doesn't even want to take the bus anymore...she keeps seeing the kids being mean to other kids. But as we have noticed before...something will happen. Something will pick up and a solution will be had...would be nice if it was in the form of a lotto ticket...doesn't even have to be billions...or millions, just enough to catch up on bills so I could take a year or so off...it's good to dream! :)
Well, Alex came down looking for me and I set her up on the couch. Going to bring her back up and snuggle. Time is too fleeting....Enjoy!
PS I'm going to send this out after only a light editing, so please excuse, since I'm sure there will errors and although I go back often to fix the errors, I think you would only see that if you looked at the blog itself afterward. :)
Enjoy!
Hopefully tomorrow I will get to writing about some of the funny stuff....
We are in a bitter cold spell right now. It was 5 degrees when I woke up today and it only got to about 12 degrees during the day. Yesterday we had a strange snow squall come through and within 20-30 minutes we got 2-3 inches of snow and more cold and incredible wind.
Kath has been sick this week. She was pretty scary. I took her to the doctor's on Tuesday because she had a couple of nights of this harsh sounding cough that made it so she couldn't catch her breath...it was a long sucking in sound as she tried to fill her lungs. Very unsettling. Took her into the bathroom and made it sauna-like...that didn't seem to help. Wrapped a blanket around her, and took her outside, that didn't seem to help. It turned out it was croup. Again.
The doctor (not her regular pediatrician)said she wasn't worried since Kath was eating okay. Of course that egg sandwich she was chomping on in the doctor's office was the last thing she ate until today. That night she ran a fever and continued to cough. Then on Wednesday night she not only was running a fever, having trouble catching her breath, coughing, runny nose and not eating, but her hands began to have tremors. Alex was also home Wednesday and then Thursday because she was coughing with a runny nose...and glassy eyes. I was afraid that whatever Kath had, Alex would get and pass along.
Back to the doctor's we went on Thursday. On Tuesday Kath had been a pretty peepy chickie, Thursday she made me hold her, didn't even want to get dressed -she went in her pjs. She sat listlessly on the couch, at a slant and not even tried to help herself. This time, it was a nurse practitioner, and she said it was an ear infection.
Today Kath finally got up and played some. She also ate. And seems to be on an upswing. Whew. Alex went to school today, but her eyes still look glassy. Hoping she doesn't get it. They said it could have been strep too...but that they were giving Kath the same meds they would give her for the ear infection....
Kath is back to doing hippotherapy. We are on Saturdays. So, after Alex's ballet class, we head out and have a yoga/healing touch session...then riding time. It is amazing how different Kath is with just the time switch. We used to have it on Monday's at 4PM, now we have it Saturdays at 2. Kath says goodbye at the door, gets on the horse 'by herself' and has a great time...much different from the girl I hadd to stay with for the whole therapy session, holding her leg. Alex takes sibling lessons and loves it too! As always.
Kath is in a ballet class at our local arts center. I was going to sign her up at Alex's dance studio but her teacher made a big deal about Kath not being potty trained...despite one other mother telling me that her daughter wasn't trained. I think I ran into my first unprovable case of discrimination, I don't think she wanted to deal with Kath's disabilities. It turned out to be a blessing in disguise--as that usually happens--and we found the local place's teacher used to work as a special education teacher and she loves Kath. Kath will be in her first show in April or May-"A Cinderella Story" and she will a castle mouse. She is tickled. Kath giggles the whole class, the movement and the ability to move and dance brings her so much joy.
I have continued to work on my writing and I am really enjoying it and I think it's halfway decent, but unfortunately, by the time I take care of every body else for the day...I don't even have energy to take care of dishes, I go onto Facebook and see how my hemimoms are doing and try to have some time with other people/moms, sharing stories. I also find myself so drained I sometimes just sit and watch NCIS stories...crazy.
We lost power for several hours this week--Monday. No one else on our block did and when it came on it was in a brown out type situation...the pump wouldn't work--so no water or flushing for about 10 hours. When it finally came back on after 10PM one casualty was the phone. It seems something was fried in the surges, so the answering machine in inoperable, so call my cell if you need to reach us.
We are at yet another crossroads though since we found out this week that our sitter will be totally unavailable for next year. So we went from toying with the idea again of homeschooling~~~(Alex has gone from loving school to telling me she is 'lonely' in school and wants to be homeschooled, her teacher says she's great and wonderful, has friends and all...)and keeping Kath in a spot where she gets more out of one on one...her special ed teacher told me this week that she's worried because she doesn't see that Kath has the stamina for a full time program yet,~~~ to looking at full time programs/day care for Kath and putting Alex in before school care before her full day of school. She doesn't even want to take the bus anymore...she keeps seeing the kids being mean to other kids. But as we have noticed before...something will happen. Something will pick up and a solution will be had...would be nice if it was in the form of a lotto ticket...doesn't even have to be billions...or millions, just enough to catch up on bills so I could take a year or so off...it's good to dream! :)
Well, Alex came down looking for me and I set her up on the couch. Going to bring her back up and snuggle. Time is too fleeting....Enjoy!
PS I'm going to send this out after only a light editing, so please excuse, since I'm sure there will errors and although I go back often to fix the errors, I think you would only see that if you looked at the blog itself afterward. :)
Enjoy!
Hopefully tomorrow I will get to writing about some of the funny stuff....
Tuesday, December 29, 2009
Yea, more good!
Yesterday was the pediatric dentist appointment for both girls. Alex was great--as always. Kath started to act up, but she watched her sister then sat in my lap and let the dentist count, scrape and brush her teeth. The grey tooth is still hanging in there, little lose but okay. Alex has two 6 year molars coming in as well as two loose bottom teeth.
Today we met with our new neurologist. (Remember our old one moved to Texas.) Kath had just dozed off when we arrived at the hospital--sad that my kids know hospitals so well, but we are so fortunate that Albany Med has so many great doctors. When we went in to see the doctor, she wanted to be held, so I held her. Then she needed to be measured and weighed. She stood by herself and let the nurse do it. She even held out her arm and let her test her blood pressure! No issues. At all. We usually have to grapple with her! When Dr Powers came into the room she was fantastic, she let the doctor test her, she played while we talked and was just amazing. Dr. Powers was impressed with her and said that cognitively she thought she was great, she could see the physical parts could slow her down, but that she was compensating and doing amazing. She even said that she seemed mature for her age and otherwise age appropriate! It was great.
Tomorrow Roger's sister's family is coming for a couple of days. We are very excited to spend some time with them. Looks like Saturday will be our trip to Long Island. We need another vacation. :D
Happy New Year's all!
Edited from original.
Today we met with our new neurologist. (Remember our old one moved to Texas.) Kath had just dozed off when we arrived at the hospital--sad that my kids know hospitals so well, but we are so fortunate that Albany Med has so many great doctors. When we went in to see the doctor, she wanted to be held, so I held her. Then she needed to be measured and weighed. She stood by herself and let the nurse do it. She even held out her arm and let her test her blood pressure! No issues. At all. We usually have to grapple with her! When Dr Powers came into the room she was fantastic, she let the doctor test her, she played while we talked and was just amazing. Dr. Powers was impressed with her and said that cognitively she thought she was great, she could see the physical parts could slow her down, but that she was compensating and doing amazing. She even said that she seemed mature for her age and otherwise age appropriate! It was great.
Tomorrow Roger's sister's family is coming for a couple of days. We are very excited to spend some time with them. Looks like Saturday will be our trip to Long Island. We need another vacation. :D
Happy New Year's all!
Edited from original.
Sunday, December 27, 2009
Top Stuff
So I don't slam you with catch-up stuff...I will do this in list format
1) In November I participated for the second year with NaNoWriMo (National Novel Writing Month). The goal is to write a novel (50,000 words) in one month. I reached my goal...kinda. I did hit 50000 words but it was not very good and with a lot of filler and fluff. But I did stay focused for a month (mostly) on writing and on my story. Yea me.
2) Chris got a job. He is moving to NYC next week, most likely sleeping on couches until he finds a place, but very excited to be finally employed. He is working for Amnesty International, their Planned Parenthood department. He will be moving in with his cousin and a friend once they do find a place, they will be apartment shopping this week (he tried last week when he was down for training, but so far the two places he set up to see canceled on him right beforehand--very professional. Considering what it takes for him to get down there, for them to cancel an hour beforehand is really quite rude. He is starting to see a different side to his romanticized view of New Yorkers, I think.)
3) Alex went to a pulmonary doctor at Albany Med Hospital. She has asthma and allergies. We now have an air purifier going in her room. Hoping that now that we are on break...she might recoup and heal. She is still the same amazingly happy and upbeat girl though.
4) Christmas was great. The girls were so excited. We tracked Santa on a NORAD site and got to learn a little about different parts of the world while doing it. They were thrilled when they came downstairs in the morning and Santa left a note; ate the cookies and drank the milk; his reindeer ate the special food (oatmeal with some kind of glitter to sparkle in the moonlight); and they saw the piles of gifts. Some fun gifts were the dolls that look like them and had matching outfits (from Avon--not American Dolls!), assorted games and books and other dolls. The boys got things they requested books, games etc. Roger and I were thrilled with our gifts too, books, the new John Adams movie,music, etc. and with just having everyone home for the day!!! The family gift was a Wii Fit. (Nick gave us his Wii system and we just had to buy the Fit component.) It has been a blast to see everyone doing the activities on it, I'm still trying to figure it out. :D We had a big meal of turkey, stuffing, mashed potatoes, turnips, gravy, green been casserole, corn, and biscuits. Homemade apple pie and cookies for dessert. Then the day after the boys went to visit family on LI and we headed out to MA to spend time with family there. It was great to see everyone but a little bittersweet since it was a year ago that Grand Pepe died, on Christmas Day. We both still miss our grandfathers on the holidays.
5) Kath's transition meeting, officially ending Early Intervention and beginning Special Ed services through the school district was last Monday. Now Kath's therapies will decrease in time to 30 minute increments but increase in frequency. So instead of the 8-9 therapies a week we will now be just about doubling them. We have also started Kath in a ballet class in town after school on Thursday's. So on Thursdays she has school from 9-11:30. She comes home and eats lunch, then we head to dance at 1. Physical therapy was at the same time but that will shift slightly now. We end at 1:45 and we have speech at 2. This girls is loving dance class and being a big girl. Loves her tutu and ballet slippers. For the winter the regular hippotherapy has ended but we obtained a much coveted Saturday opening. Yea!!! That will be after Alex's ballet classes.
6) Last night when I mentioned we were going to take a ride to the craft store to get some things for when the cousins come on Wed...Kath said, "Al stay home. Momma and Kath have time (have Momma and Kath time). Al stay home with dada." Haha.
7) Nick is home and we are loving our time with him home.
8) For the second year we didn't send out cards...yet. I might do something for New Years. So Merry Christmas all. It's not that we don't love you...it's just that with grades due, sick children and assorted other thrown-in issues, time was a struggle and that is what we decided had to give...but we have a great photo!!!:D So maybe I will work on New Year's cards! :D
9) Continuing on with the positive thinking...power of intentions and The Secret. I made a list of things for The Secret...thanking for the items I wanted to happen. Already I've seen a couple of the things come to pass. It is a powerful tool to alter how you perceive things so you can attract the good.... I continue to be thankful and I hope you are all well.
10)I have no 10. :D
Have a great day. Peace. Enjoy. Love.
1) In November I participated for the second year with NaNoWriMo (National Novel Writing Month). The goal is to write a novel (50,000 words) in one month. I reached my goal...kinda. I did hit 50000 words but it was not very good and with a lot of filler and fluff. But I did stay focused for a month (mostly) on writing and on my story. Yea me.
2) Chris got a job. He is moving to NYC next week, most likely sleeping on couches until he finds a place, but very excited to be finally employed. He is working for Amnesty International, their Planned Parenthood department. He will be moving in with his cousin and a friend once they do find a place, they will be apartment shopping this week (he tried last week when he was down for training, but so far the two places he set up to see canceled on him right beforehand--very professional. Considering what it takes for him to get down there, for them to cancel an hour beforehand is really quite rude. He is starting to see a different side to his romanticized view of New Yorkers, I think.)
3) Alex went to a pulmonary doctor at Albany Med Hospital. She has asthma and allergies. We now have an air purifier going in her room. Hoping that now that we are on break...she might recoup and heal. She is still the same amazingly happy and upbeat girl though.
4) Christmas was great. The girls were so excited. We tracked Santa on a NORAD site and got to learn a little about different parts of the world while doing it. They were thrilled when they came downstairs in the morning and Santa left a note; ate the cookies and drank the milk; his reindeer ate the special food (oatmeal with some kind of glitter to sparkle in the moonlight); and they saw the piles of gifts. Some fun gifts were the dolls that look like them and had matching outfits (from Avon--not American Dolls!), assorted games and books and other dolls. The boys got things they requested books, games etc. Roger and I were thrilled with our gifts too, books, the new John Adams movie,music, etc. and with just having everyone home for the day!!! The family gift was a Wii Fit. (Nick gave us his Wii system and we just had to buy the Fit component.) It has been a blast to see everyone doing the activities on it, I'm still trying to figure it out. :D We had a big meal of turkey, stuffing, mashed potatoes, turnips, gravy, green been casserole, corn, and biscuits. Homemade apple pie and cookies for dessert. Then the day after the boys went to visit family on LI and we headed out to MA to spend time with family there. It was great to see everyone but a little bittersweet since it was a year ago that Grand Pepe died, on Christmas Day. We both still miss our grandfathers on the holidays.
5) Kath's transition meeting, officially ending Early Intervention and beginning Special Ed services through the school district was last Monday. Now Kath's therapies will decrease in time to 30 minute increments but increase in frequency. So instead of the 8-9 therapies a week we will now be just about doubling them. We have also started Kath in a ballet class in town after school on Thursday's. So on Thursdays she has school from 9-11:30. She comes home and eats lunch, then we head to dance at 1. Physical therapy was at the same time but that will shift slightly now. We end at 1:45 and we have speech at 2. This girls is loving dance class and being a big girl. Loves her tutu and ballet slippers. For the winter the regular hippotherapy has ended but we obtained a much coveted Saturday opening. Yea!!! That will be after Alex's ballet classes.
6) Last night when I mentioned we were going to take a ride to the craft store to get some things for when the cousins come on Wed...Kath said, "Al stay home. Momma and Kath have time (have Momma and Kath time). Al stay home with dada." Haha.
7) Nick is home and we are loving our time with him home.
8) For the second year we didn't send out cards...yet. I might do something for New Years. So Merry Christmas all. It's not that we don't love you...it's just that with grades due, sick children and assorted other thrown-in issues, time was a struggle and that is what we decided had to give...but we have a great photo!!!:D So maybe I will work on New Year's cards! :D
9) Continuing on with the positive thinking...power of intentions and The Secret. I made a list of things for The Secret...thanking for the items I wanted to happen. Already I've seen a couple of the things come to pass. It is a powerful tool to alter how you perceive things so you can attract the good.... I continue to be thankful and I hope you are all well.
10)I have no 10. :D
Have a great day. Peace. Enjoy. Love.
Friday, November 20, 2009
So much has happened, let’s see if I can catch you up. Alex has been sick since the second week of school. She has been to the doctors all but two weeks since the second week of Sept. She went from an upper respiratory infection, to pneumonia, to asthma, to throwing up, to another bout with pneumonia, to more with allergies, to some white spots (viral) on her throat. She is tired from fighting off all these things, so when she looks tired, I keep her home. During this time she also ran fevers twice---on Wed nights—go figure! She will see a pulmonary doctor the first week of December. So glad she is my healthy kid. We finally got them dose one of the H1N1 vaccine this past Monday.
Nick was so sick that he missed close to two weeks of school and had to drop out of one of his classes because the teacher said he couldn’t make up all the work since much of it was in-class work.
Chris and Kath—usually my two sickies have actually been better than the other two! Although battling odd things here and there, they are good.
We had a visit by Nana Linda and Grandpa Bob from Florida and we all enjoyed our reconnect time. We hope to see them soon.
We had some really great days intermixed with some challenging times. Kath has been going to preschool and doing really well. Some days she does better than others but she is mixing with in the kids, getting used to the transitions and getting along with other kids. She looks forward to going to school, getting library books and painting. We have clothesline across the doorway of the playroom and the entrance to the living room so that we can hang the artwork and projects for the girls. It’s like an art gallery.
Kath runs around the playground at school—the whole playground—and has fun climbing the jungle gym, but since she has the vision issues she has a little problem with kids running past her and running almost through her and almost knocking her down.
For the past two weeks Robin (our ‘nanny’ for the days I am working) or I stay outside the room while Kath navigates her school day without too much outside assistance. She is amazing. We had been behaving as her one-on-one aide until I began to see that we really seemed to be stifling her ability to have friendships and a connection with her teachers. She was also not able to work on becoming her own advocate and this chickie NEEDS to know how to ask for help, like none of my other children have. So in my desire to keep her the closest…I have to let her go sometimes, the most. This mom-job sucks sometimes in the most heartbreaking ways.
We still go out on the playground with her though because she needs a lot of help.
She had a great birthday and party with lots of love surrounding her. Can't believe she's three. We invited people who have helped us truly keep our heads on straight for the past year, we are fortunate to have such good friends/family. It was disappointing, but understandable that not everyone could come.
Kath had a sleep-deprived EEG on Wednesday. So on Tuesday we had to keep her awake for three hours later and wake her up 2 hours earlier. So we watched ‘Up’ and went to bed at 10. Then we got up at 5 ( I cheated here--since she usually does get up that early--but...). Our morning was so tight we didn’t have ANY wiggle room. Chris was on LI so I couldn’t even ask him to help out. I needed to have Alex catch the bus, then run straight to Albany Med. Of course she missed the bus and we had to wait for 25 minutes for the bus to loop back around (couldn’t drop her off because I never signed up for before-school-care and she would have gotten there too early). The bus came 5 minutes before I was expected to be at Albany Med—which is about 40 minutes away. Hit traffic—or at least people who drove the speed limit. Then I also couldn’t find a parking spot until we reached the roof. Ran in and apologized to everyone I saw. Still got yelled at by the lady behind the desk “You were supposed to be at check in at 8:45!’ ‘I am so sorry. They called up when I got here.” Then even the technician was annoyed and I thought stay calm, this won’t help Kath if everybody is excited. So I apologized another three times—to each of the women in that office. Tried to stay calm so Kath wouldn’t get riled and she might have the ability to fall asleep. Haha.
I really worked on my positive intentions and breathing techniques. And even though it was not a smooth experience I felt so much more in control and therefore it wasn’t upsetting for Kath. This was such a powerful feeling because so much of our lives are out of control, so it was a great lesson. Especially since this AM Roger's car broke down at 4AM and we had to scramble to get Chris (thank god he was home!) to pick him up, grab my car and head back out to finish his papers, he called into work so he could deal with the car issues and he had to drive me to school). (He then had to take care of the girls--I left him quite the elaborate list...:D Bring Alex to stop at...be sure to have Kath's backpack...he was exhausted and said work was easier--he'll forget that by tomorrow! :D).
Still…when we first got in the room, Kath folded her arms, wouldn’t sit in the chair, said no and in general showed her stubborn side. The tech thought we would not be able to use the ‘easier and softer’ method of positioning the probes on Kath’s head, but I asked her to give it a chance, but she said she didn’t have a lot of time.
But she tried and Kath proved to her how great she could be. She sat still, watched Snow White, whimpered a bit during a few parts of the process but otherwise was good—I also rubbed some lavender on her beforehand to calm her. The tech was able to put a soft adhesive on the 20 something probes on Kath’s head then wrap a cloth around her head to keep them positioned. When we had to shut off the TV for the actual test though...I thought if Albany Med was smart they'd fix it so the kids could drift off to sleep while watching TV...not give the smallest rooms so you couldn't have the TV plugged in and still turn the chair so it faces....Anyway.
No results yet. We don’t actually have a neurologist yet—we see her new one at the end of December (her old one moved to Texas).
Afterward I picked up some lunch and drove to the airport where I sipped some coffee and wrote while she snoozed a bit. When she woke up she was very happy to be at the airport and was asking where the planes were. “Where planes go?” (palms uplifted with a shoulder shrug). We sat and enjoyed the time. Then went to Barnes and Nobles to get her the sticker book I promised her, but since they didn’t have it she got magnetic dolls and a book with birthday money. Alex, Kath and I had stopped at the airport after the doctor's appointment Monday night and enjoyed our dinner there. Fun stuff. They love planes as much as I do.
Kath also saw her orthopedic doctor in October and he was impressed with her progress.
She was in a Halloween Parade for school. It was really tough for me because we had to walk around town and go trick or treating at a few local businesses. She was delighted. She was dressed at Thumbalina. Wings and all. But many people lower the bowl of candy and allow the kids to chose their own candy, and although that may have seemed nice and generous, for kids with cerebral palsy and a lack of fine motor skills…my heart was in my throat each time. The odd steps and pavement were so scary to watch her try to maneuver. But she did it. When she reached for the candy her hand would hover over the basket and circle around. The candy-offerers would say, “Oh you don’t know what one to chose, honey?” And my heart was breaking because I knew that she trying to force her hand to close in on one. Her OT, Laurie, though said to me, “Isn’t that great?? They can’t tell she has a disability? They just think she can’t decide.” That was a great switch in perspective. But it still hurt to watch how she couldn’t open the roped to the bag they made in school for this (but I knew that I needed a bag for her that stayed open at the top (thanks to Aunt Eileen for providing that)for the big Trick-or Treating with her sister.
Alex was Dorothy from The Wizard of Oz. She used the basket she carried Toto around in to be her Trick-Or-Treat bag. Alex had a Halloween party at her school and Chris got to go in and help out (he held the string high up for the kids to do the donut bopping. He also went on a field trip to the farm to get pumpkins. I’ve had to work both those days and Alex has LOVED having her big bro there! Chris and Abbi also walked around with us--in what turned out to be the rain on Halloween. Good sports.
Alex, Chris and I also finished a good soccer season. Alex scored in her first game and her last game…the only two games she wasn’t sick for. Chris and I received great parent evaluations. It was a lot of fun! Great experience and I met great people.
After that I helped out at Alex’s school book fair one night and listened to some mothers talk about how ‘none of the kindergarten moms’ have stepped up to take on a Daisy troop (youngest level of Girls Scouts). I spoke up and said, “I don’t think any know about it…I know I don’t!” No one really said anything helpful so I went home and started looking into it online. I decided I wanted to do it. So I am going for the training and starting my own troop. Alex’s old speech therapist, soon-to-be-Kath’s new speech therapist volunteered to do it with me. So we are pretty excited.
I decided to do it because I have several really good students who are involved in girls scouts, they do good things. I also don’t like too many other people having more influence on my children when they are so young (I taught Nick’s religion class for 8 years, etc). And I have a lot of things that revolve around Kath (therapy-wise) so I want to make sure that Alex doesn’t get lost in the shuffle.
A couple of cool things. Roger got to go on a weekend retreat with the writer’s group he belongs to. It was good for him to get away for a couple of days in the Adirondacks.
I presented about blogging in front of all teachers and staff in my district…and was even on the news (for two seconds and from really far way! But I was there!!!)
We had our first teacher conference with Alex’s kindergarten teacher and Alex is doing amazingly well. We are working on sight words, writing, reading and numbers. She also receives speech therapy with a wonderful teacher twice a week and loves it.
Things are always cooking here. I’m leaving out some things but basically things are good. Of course it would be easier if we won some money—wouldn’t have to second guess Kath’s therapies and bills would be easier, including paying for Nick's remaining school year. Ahhh. Of course if I never had to carry around Diastat just-in-case Kath ever had a seizure, life would be easier. If I didn’t have to worry about how Kath is processing and seeing and speaking and manipulating her fingers and feet, life would be easier.
But we are good. Life is good…but if you want to buy a Lotto ticket …we wouldn’t say no to any sharing!! :D
Saturday, October 3, 2009
This week at home
And it truly has been a week at home. Kath stayed home from school Thursday and Alex Friday. Roger and I have been fighting off the sickness...still. Chris is sick, but at Bennington this weekend for Trustee's Weekend. He was chosen in June to be the newest trustee member. Unfortunately he's fighting off the ick too.
I kept Alex home on Friday because her cough still hasn't gone away...and actually sounded worse. And because she sounded wheezy Thursday night. No fever though. Not since last week anyway. But when we went back to the doctor...and Kath was fantastic this time...she knew SHE wasn't going to checked...Dr Schottler-Thal could hear that her lungs didn't sound right, could hear the wheeze. She didn't bother to do the x-ray since indicators pointed to what she thought and she would treat it the same....It's Walking Pneumonia treated with antibiotics, fluids, rest and love. Of course I keep putting eucalyptus and peppermint on her too....
Kath's nose is still running too. She is looking better though.
Nick is fighting off a cold at school too, but sloughing through.
Let's see...a couple of fun spots this week:
Before I go to school some days, Kath likes to slow things down and snuggle. She wanted to have a bottle and have me hold her. We sat on the couch as we do many times and just talked or sat quietly. Suddenly she pointed to the wood sign above the sliding doors and said, "Wasat say?" This is impressive on a couple of levels. For one, it meant she was scanning with eyes beyond her comfortable peripheral vision. For two, it showed curiosity. For three, she knew that letters meant something...said something. She wanted to know what the sign meant ...said. The sign was a wedding gift from a friend from school. The sign ironically enough says "And they lived happily everafter." :-D
At night when we read I try to have the girls participate in the reading. We found a Dora book "Animal Parade" (yes, titles should be underlined, but my computer here won't allow me). This book has the characters surrounded by the words/verbs they are doing. So Boots has "Swing, Swing, Swing" Dora has "March, March, March" a frog has "Hop, Hop, Hop" around them and so on. When we read that book, each girl takes a turn 'reading' the words. Alex is thrilled to really recognize some of her sight words in our books. Kath is thrilled to 'read' and will often wake poor dadda up (he lays at the end of the bed while we read, with little feet often requesting foot rubs in between his dozing :-D), "Dadda, look I reading...Mach, Mach...." And she has worked hard on saying the ending sounds, need some work on the middle r-sound, but wow, is she impressive or what?? Lots of speech improvements. This week we are going on a field trip--apple picking with her class (Kath's).
Alex has her second Tiger Jam, first one the parents can go to on Tuesday. The very same day and time as Kath's field trip! Of course. I think I will be requesting help to be in two places at once....Really wish our grandparents lived closer sometimes. :-)
As for my writing...I don't really talk too much about it...as much as I thought I would, considering that was my original reason for starting this blog, until the world turned upside down with Kath anyway...I actually have been writing this week. About 3000 words. I printed off all I have so far, 30 pages, with the hope of editing and finding a steady thread to continue with, I feel like I'm all over the place. I'm very excited. I'm finding that I think about my characters and story setting and such as I drive around town and just at odd times during the day--it's almost like they're leaking through into my real life. Or as if they are living friends and/or part of a story I have read by someone else. Sounds strange, but hard to explain. It is as though I'm living this quote :The story I am writing exists, written in absolutely perfect fashion, some place, in the air. All I must do is find it, and copy it. ~Jules Renard, "Diary," February 1895.
Enjoy!
I kept Alex home on Friday because her cough still hasn't gone away...and actually sounded worse. And because she sounded wheezy Thursday night. No fever though. Not since last week anyway. But when we went back to the doctor...and Kath was fantastic this time...she knew SHE wasn't going to checked...Dr Schottler-Thal could hear that her lungs didn't sound right, could hear the wheeze. She didn't bother to do the x-ray since indicators pointed to what she thought and she would treat it the same....It's Walking Pneumonia treated with antibiotics, fluids, rest and love. Of course I keep putting eucalyptus and peppermint on her too....
Kath's nose is still running too. She is looking better though.
Nick is fighting off a cold at school too, but sloughing through.
Let's see...a couple of fun spots this week:
Before I go to school some days, Kath likes to slow things down and snuggle. She wanted to have a bottle and have me hold her. We sat on the couch as we do many times and just talked or sat quietly. Suddenly she pointed to the wood sign above the sliding doors and said, "Wasat say?" This is impressive on a couple of levels. For one, it meant she was scanning with eyes beyond her comfortable peripheral vision. For two, it showed curiosity. For three, she knew that letters meant something...said something. She wanted to know what the sign meant ...said. The sign was a wedding gift from a friend from school. The sign ironically enough says "And they lived happily everafter." :-D
At night when we read I try to have the girls participate in the reading. We found a Dora book "Animal Parade" (yes, titles should be underlined, but my computer here won't allow me). This book has the characters surrounded by the words/verbs they are doing. So Boots has "Swing, Swing, Swing" Dora has "March, March, March" a frog has "Hop, Hop, Hop" around them and so on. When we read that book, each girl takes a turn 'reading' the words. Alex is thrilled to really recognize some of her sight words in our books. Kath is thrilled to 'read' and will often wake poor dadda up (he lays at the end of the bed while we read, with little feet often requesting foot rubs in between his dozing :-D), "Dadda, look I reading...Mach, Mach...." And she has worked hard on saying the ending sounds, need some work on the middle r-sound, but wow, is she impressive or what?? Lots of speech improvements. This week we are going on a field trip--apple picking with her class (Kath's).
Alex has her second Tiger Jam, first one the parents can go to on Tuesday. The very same day and time as Kath's field trip! Of course. I think I will be requesting help to be in two places at once....Really wish our grandparents lived closer sometimes. :-)
As for my writing...I don't really talk too much about it...as much as I thought I would, considering that was my original reason for starting this blog, until the world turned upside down with Kath anyway...I actually have been writing this week. About 3000 words. I printed off all I have so far, 30 pages, with the hope of editing and finding a steady thread to continue with, I feel like I'm all over the place. I'm very excited. I'm finding that I think about my characters and story setting and such as I drive around town and just at odd times during the day--it's almost like they're leaking through into my real life. Or as if they are living friends and/or part of a story I have read by someone else. Sounds strange, but hard to explain. It is as though I'm living this quote :The story I am writing exists, written in absolutely perfect fashion, some place, in the air. All I must do is find it, and copy it. ~Jules Renard, "Diary," February 1895.
Enjoy!
Subscribe to:
Posts (Atom)