Sunday, January 31, 2010

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?

Thursday, January 21, 2010

I know, I know

I know! I need to find a happy place to post from but for goodness sake it is January! In Michigan! I have even held off from posting because I have too much whining to do :) So to get this off my chest... The front seat of the know, where Ben's adaptive seat is strapped down and he is strapped in? That's the one. Well the extra spot next to Ben SHOULDN'T BE USED AS THE "IN TROUBLE" SEAT! Ben should not tell me that his friend didn't get to sit with him cause "blank" was in trouble and had to sit there. How is the seat my child (that is too strapped down in to get in trouble) is sitting in, THE TROUBLE SEAT??? Come on folks! Think! That's just rude! Just in case you didn't know, it's not nice for your children to get together and yell "Hey Ben! Bet you're too slow to catch us!" then run away. Stop them! It is mean! And I don't give a f&#@ if Ben is smiling. It still sucks! Back to the bus (love the bus) when kids say things ranging from "Ben can't get out of his seeaat" to "Since you can't walk down the steps very well, you should try to fly!" it is not nice. Stop them. Then tell me so I can give him a mental band aid when he gets home. Don't think for a second that it is OK to threaten Ben with taking something away (including therapy! No joke, it happens) if he is having trouble controlling his body and getting things done in a timely manner at the same time. HE HAS A REALLY GOOD REASON FOR NOT KEEPING UP, IT'S CALLED CP! Please keep your ears open for what children are saying to him and give me a heads up. I hate to hear "I'm just too slow to play", "I guess I'm just not strong", "Mom, I don't think I am strong enough to be seven", "Maybe my legs just have to be crooked", and "I want to go to the hospital so they can fix my brain" but I really hate it if it is stemming from school talk and I am the last to know. By all means, look at him, correct his behavior if he is not following directions, love him, expect a lot of him! But please folks, gain control of your behavior and don't make this harder for him. Thank you. I feel a little better.