Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Tuesday, November 18, 2008

Here is the Letter I Wrote

Part of the benefit of writing things down is you get to look back at what you were feeling at a particular moment in time, and ponder any new thoughts on that subject. Reading the letter I wrote to the school regarding my son's need for Home and Hospital let me realize what a mistake it was to even go down the road we took this year. He should have started in H&H from the start. Hindsight again is 20/20.

Here is the letter. Sorry for the length.

Friday, October 31, 2008

To Whom It May Concern:

This letter is to request that ___, student at _____ Middle School, be placed in the Home and Hospital Program. This decision comes after attempts to secure a rewarding and successful 7th grade education for ____ within the school building.

______ has a myriad of diagnoses that hinder his ability to maintain attendance in a regular school day. We requested an aide for _____. We were denied. The reason given was that there was not enough evidence about his condition to support employing a full-time aide. We understand that _____'s condition is not well known or understood, but we were not fully given an explanation of the appeal process in order to increase anyone’s knowledge. When I asked about an appeal process, I did not received sufficient information in order to file one.

Without an aide, ______ must juggle his paperwork, books and manual wheelchair, often pushing himself to each class. This is counterproductive to the requirements of his medical condition. Using energy for this causes him to become more fatigued and less stable. We were in the process of securing an electric wheelchair through our insurance at the time of this letter.

Due to his continued absences, _____ was given an abbreviated school day, which according to what I have been told by Ms. _____, Vice Principal of ____, precluded him from having an aide at all. The reason was stated that the county would not pay for a part-time aide. In this abbreviated schedule, _____ as to have a 15 minute homeroom with Mr. ____. On at least three occasions, Mr. _____ was unavailable for this homeroom and _____ sat alone in a classroom before his 1st period. In fact, on the 29th of October, Mr. ____ was absent and no one was sent to replace him in his role as homeroom teacher for _____.

It has been difficult to secure homework for _____ on the days he is absent. While we have textbooks for three of his classes, we still do not have a viable way for him to access his literature textbook to this date. Also, the usual procedure seems to be to hand _____ the missing work the next day he is in school and say he has to catch up. Even after I offered to come at the end of the day and pick up any missed assignments to avoid this. There have been attempts to use technology (email, fax machine) in order to stay in touch with teachers. This has failed to resolve the problem and has not resulted in successful communication with all his teachers regarding missed assignments, outlines of class work covered or upcoming projects.

Much has been made about ____ remaining in school for the social interaction. On many fronts, this argument has failed.
Since 6th grade, when ____'s rare disorder became diagnosed, we have requested and waited for a time when we could address teachers, staff and students about it. We wanted to dispel rumor, innuendo and insult. We have not been able to secure a time to this date. Consequently, _____ remains the target of insults and unbelief about his condition. This has caused a great deal of emotional hurt to _____. Daily, he must ignore several boys who taunt him in his wheelchair. He must remind teachers openly to request a student push him from class to class, thus having to restate his needs and inabilities. If none can be secured, he “grandfather rolls” himself to his next class.

This week after sustaining a contusion to his ankle, this became quite hazardous to have him using his feet to help propel him along in his wheelchair. Thankfully, Nurse ____ alerted me to the problem (he also did not have a shoe on the injured foot), but this did not change the fact that he had to get from class to class without regular assistance.

Also, regarding the social aspect of school, ____ has not received any information that is given during early morning announcements, so he is completely unaware of any aspect of student life, unless he hears it from his friends or grabs a teacher in passing in the hallway. This situation has had recent devastating emotional results in regards to his social interaction.

_____ Middle School held a 7th grade president race, into which _____ was nominated by 10 classmates. At a conference meeting, the vice principal expressed concern about ____attempting to run for the office. She stated that ____ may not be able to attend meetings for that position as they were held in the morning. I offered to bring him for those meetings once a time was established. Not only did I not receive any such information, _____ was excluded from the speech session with his peers and the voting process altogether. This resulted in ____ feeling that he “did not exist.” Quite upset, we now wonder what is the point of continuing this charade. We were not notified of picture day. On the makeup day, we received no notice as well, only once we arrived at the building for his regular abbreviated schedule, were we rushed to “catch” the photographer before they left.

At this point, the return on using these parameters for ____ education is diminishing. The additional fluids that must be supplied to the school, the lack of interaction with his peers in announced social activities, the lack of meaningful class work continuity on his days out, the added technology (electric wheelchair, reminder tools) that must be used (some of which are supplied at our expense) brings us to the decision that all of this can be avoided by his return and future enrollment in the Home and Hospital Program.