Thursday, February 18, 2010


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 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 is a bit more in line since I want to follow myself as a writer too. :)

I thought and worried that I might have 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 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 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 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 cutting, scissors, writing. Her brain can 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 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 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.