Been A While

So...

It's been a while. A long while.

Like so many things in my life, blogging has been pushed aside. It may have been the easiest to let go even. No one (well a couple folks but you know) dumping undo guilt or disappointment at the lack of posts. No stern reminders that my work is late. No GPA slipping into the red. You know what? No glaring stains pop up on the carpet if you don't blog. It was easy to step back when I realized that I had come to a point that my blogging wasn't doing me, or anyone else for that matter, any good. I actually got tired of bitching in print. So I stepped away and turns out, I still bitch, but to people that I can touch. Seems that bitching may be where I am in my life, or it could be the Keppra but that is a whole other ball of wax.

We had such a fantastic summer...

We went to Illinois for the high school graduation of our niece and college graduation of our nephew.

Ben and Kiera got their first ice cream from an ice cream truck.

We said goodbye to Ben's fantastic teacher of two years.

We went strawberry picking.

We saw my niece graduate from Middle School.

We camped on Lake Michigan.

We played in the parks.

We rode bikes. Kiera learned to ride without training wheels (thank you PEAC).

We spent the 4th in Tennessee with Dave's family

We went to Red River Gorge and Ben hiked the trail to Natural Bridge. He hiked it.

We visited The Big House.

We played with our neighbors.

We pub crawled (OK, that we just me).

We went to a beer fest (OK, that was me and a few much loved grownups).

We camped again.

We swam with the neighbors.

We celebrated two weddings.

We went to a cheeseburger fest and camped again.

Ben went to camp.

We camped on Lake Huron.

We went to Children's Museums.

We went to Zoo's.

Ben rode horses. Lots of horses.

We started school. Kiera left my side for the first time.

Dave and I went to Key West.

Ben joined cub scouts.

Kiera went back to ballet.

We camped again.

Ben climbed trees

We went to Wisconsin.

We went to orchards, pumpkin patches and corn mazes.

The most important part of all this rambling is "we". We found amazing, fun and wonderful things to do WITH amazing, fun and wonderful people. These people in our lives, these wonderful, thoughtful, fun and funky people that are our family and friends are part of the glue that makes us work.

I miss this though. I miss knowing what is happening with your families and I miss having the record and outlet that this provides. I miss being able to say "Ben's school environment sucks! I wish I had the cash to bury the district in lawyers until they actually did what is right for children with different needs! Who makes a freaking NEW playground inaccessible and takes away handicapped parking!" because you just can't say that stuff on facebook :)

I guess we'll just see how it goes.

sigh...

so much to tell, so little time...

if only I could blog from my phone...

(HINT,HINT)

February

Ewww! What a funky time of year it is for me. There are things missing from this time of year for me and things that are being accomplished as well. It seems that I am simply not as good at covering my bases during the winter. For example; I can get the ball rolling on improving Ben's current school situation BUT can't plan swim lessons at the same time or I can initiate cool activities BUT can't remember to take pictures to capture the evens or I can talk on Ben's behalf BUT can't keep up with my friends. The list may or may not be longer (I don't know because I keep losing it :)) but it sure seems to require singular focus. Is multitasking easier for me when the sun is shining or is my winter list just that much more complex? Don't know, but it was 39 degrees yesterday, so I have hope! Some cool things: Ben and I sat down with the Kindergartners at his school and talked to them about CP. We were invited to do so when it became clear that a number of children thought that Ben had broken legs that were not being fixed. ("Mom, can we just bring in an x-ray machine and then fix Ben's legs for him?") I read a letter to the groups, then Ben fielded questions. It was pretty cool to hear the questions they had (How old were you when your brain got hurt?, Will CP get worse for you?, Can you run without your walker?, Does it hurt?, What do you like to play outside?, Can you play tag with me?) and even more cool to hear how Ben answered these questions. After the first group Ben said "Thanks so much for coming mom. I did it!" Yay! Another cool thing is that I was able to meet with some folks at school (speech path, social worker, psychologist and teacher) to talk about the teasing and unhealthy interactions that are happening in and out of school with school kids. Good news is that I have been there a lot lately (happy side effect of my work hours feeling the financial crisis) and shared my observations with folks so they came to the meeting with some observations of there own. We all agree that the dynamic in the room needs a boost so we are working together on a school wide positive school program that will address these issues AND they are bringing folks into the room for large and small group activities to work on a positive environment for everyone. You can already feel the attitude shift. Fantastic! (I am leaving out a really ugly side of this 'cause it is not meant to be that kind of post :)) Among the greater things to come out of the hubbub with school building move (we are moving, it is not good), is that I have connected with a mom who is fighting for her little guy too. We are dealing with some different issues but we have each others back on the issues and she is not afraid to squeak, as loud as she needs to and she is all about squeaking for both of our boys. Nice to have her next to me when the pressure is on. There are all sorts of good things that are happening that have nothing to do with changing school climate but that will have to wait for another post. I will leave you with the letter that we read to the children (not sure how this hasn't made it here yet). This letter was passed to me (with some modification of course) from a CP mom who got it from a CP mom who...you get the picture. The child that this "Kindergarten letter" originated from is in high school now. If you can use it, please do. Hi! I’m Ben **** and so far I’m really enjoying being in Mr. ******* Kindergarten/First Grade class with you. Sometimes when I first meet people they wonder why I use a walker to get around, so I wanted to see if I could answer some questions that you or your parents might have. I’m a kid living with cerebral palsy, or “CP” for short. I was born with cerebral palsy. When I was born part of my brain got hurt. The part that was hurt is connected to my muscles. So the muscles in my legs and arms don’t get the right messages or get mixed-up messages and it makes it hard for me to control my muscles the way that you can when you walk and play. CP isn’t a disease. I’m not sick, and you can’t catch CP from playing with me or being my friend. CP is something that “happened” to me when I was born. I hope that you’ll feel comfortable asking me or my parents questions if you have them. Here are some things that kids have asked before: Will you always have CP? Right now, there isn’t a cure for cerebral palsy. This means my doctors and nurses can’t “make it go away”. But my whole family, together with my doctors, nurses, physical and occupational therapists help me to learn as much as I can to manage it. I’m learning how to control my muscles better and better every day. What does a physical and occupational therapist do? A physical therapist helps me to use my muscles better. They help me do exercises to make my muscles get stronger. The physical therapist I see at school is named Mrs. *****. I also see Ms. ******, an occupational therapist, who helps me learn to use the muscles in my arms and hands. I feel really lucky to have them help me! What else do you use to help you? You’ve probably noticed my foot braces. They help keep my feet in a good position for walking and moving. My walker helps me to get from place to place when I have far to walk. Sometimes I even use crutches. Sometimes I use special devices to help me do things, like different scissors or a chair during circle time. People help me sometimes, too. Mrs. ****** helps me a lot. Everyone is learning really fast when I need help and when I can do things myself. I really appreciate it when people help me, but sometimes it’s frustrating when people do things for me that I know how to do myself. Usually I just ask when I need help. Do you want to be treated any differently because you live with CP? No! If you’ll just try to be patient and understanding with me, that will be great. Living with cerebral palsy is really just a very small part of who I am. On the inside, I’m a lot like everyone else. Thanks for taking some time to learn about CP! Your friend, Ben

Where My Time Goes...

When I should be focusing on Birthday's, preschool choices and spring sports, I am instead touring the building that Ben's school is proposed to move to. I was a lucky one, I actually got a tour and with the Director of Special Ed and the current principal no less. I even had a moment to chat with our Superintendent. This is the letter I just sent to our Board of Ed.-

I am writing to you today as a mother. Specifically, Ben's mom. Ben is a little guy that you probably have not met, but can’t miss in the halls of (our school). He is the one tearing through the halls with his walker, flashing wheels and all.

Ben has Cerebral Palsy (CP) resulting from a significant brain injury some time around his birth. He has low muscle tone, impaired balance and impaired coordination. Ben uses his walker for long walks through the school and any other time that he is fatigued (which happens often to children with CP).

Children living with CP work on a different schedule than their peers. In Ben’s case, it takes months to gain stamina, learn and maintain motor patterns and recover from muscle fatigue. This is just one of the reasons that I am concerned with the move of the Multi-Age Program to a multi-floor building. Walking distance is not the same as stair distance when is comes to physical endurance. I have heard comments like “children adapt”, “he is a strong kid” and “he is so determined”. This is all true. What is difficult for people who don’t live with a person with CP to understand, is while this may be a transition that takes a few weeks for the majority of the transferring students, this will take months for Ben. Months in which he will have to concentrate his energy on his mobility instead of second grade. Months in which he will stand out from his peers because he can not keep up due to waiting for an elevator, struggling with stairs or simply because the walk is so far he is exhausted.

It was suggested to me (I truly believe with no ill intent) that children that needed to utilize the elevators in the past have loved the novelty, have felt special because they had a key and loved that they got to leave class early to transition in time. These children referred to were dealing with a temporary situation (broken leg was an example). This is Ben’s situation for the rest of his life. If there is one thing Ben is aware of, it is that no matter how much he wants it to, his body doesn’t work like everyone else’s. Ben is in first grade and he knows that he is missing things in his class because he has to leave three minutes early currently. What happens when he has to leave twelve minutes early to get to music at (the proposed school)? It was suggested to me that possibly a more direct route to music would be to take the elevator or stairs to the first floor, walk through the first floor then WALK OUTSIDE, AROUND THE SENIOR CENTER, INTO THE BUSINESS OFFICE to the elevator closer to the music room. Shame on you for suggesting that my seven year old take his walker outside in the middle of winter to better access a class. When I expressed my concern about feeling the need to choose between this fabulous program that allows for his strengths and weaknesses and his physical well being, I was told that “it would really be too bad if I felt that I had to send him somewhere else.” It felt like, take it or leave it.

Ben has found great success, freedom and independence in navigating the halls in our current building. He can come in from the playground, put away his things, use the bathroom and head off to chapter book reading, all fairly independently with his peers. His parapro can currently aid others and keep a watchful eye on Ben while allowing him independence and the opportunity to take responsibility for his education. At (the proposed school) this will not be possible. He will need one-on-one assistance any time he needs to leave the floor. If his class is on the second floor, he will need assistance to go to the bathroom. Will the district support a one-on-one parapro when this is not district policy?

As you can see, I am not as worried as you might think about the “accessibility” of the building. I do have concerns. How do we get Ben out in an emergency, or even a fire drill? The doorways are old, so they are more narrow, but I don’t know how they meet standards yet. The rooms are smaller, this poses a logistical problem on how to fit 25 children and allow space to maneuver a walker. Few of the bathrooms have rails. The second floor bathroom has stairs. The Auditorium stairs have no rail. Between every addition there are major slopes in the floor. This is, for Ben’s purposes, a five story building in that there are stairs between old second floor and new second floor areas. I believe accommodations will be made to the building to “meet” standards. These are areas of concern but the over all logistics and the social/emotional/physical impact on my son are all my concern.

I know that we are working in a budget crisis. I am not against a move to main campus to alleviate some of the shortfall. I also know that there are big plans if the bond passes and big future plans for (the proposed school) as an academy of sorts. Even if the bond passes, being on separate floors adversely impacts the method of the Multi-Age Program by hindering peer-to-peer mentoring. And, what if the bond doesn’t pass? I do not have a demand on where I would like our program to move. I simply know moving to (the proposed school) presents physical challenges for Ben that are not present in single story buildings.

This letter is meant to give you an idea of the challenges this move may present to Ben. I know that Ben is not the majority here, but I believe that most of us chose this program, in part, on the accessibility to a supportive education addressing the needs of every child. These issues should be addressed, not only for Ben’s sake but for all children with a limitation currently in our building, as well as those who may need to turn away from this wonderful program because the physical space is limiting to their child.

I want you, all of you; to be sure that the entire picture is being looked at.

Is this THE BEST possible solution?