Thursday, October 7, 2010


  Almost everyone I know has a friend that they met in elementary school.  It might be their best friend or it might simply just be an old friend they get together with every once in while.  They see each other and they just pick up where they left off.  When a child has a craniofacial difference and a trach it's extremely hard to make friends.  During the first meet and greets the other kiddos are more interested in asking why s/he looks the way they do and what's on their neck.  Ethan will not tell new kiddos why or what...he gets defensive and usually turns away.  If he says anything he'll shout "NOTHING!"  I believe this is his response to the usual "What's wrong with you"-this is the first thing asked by kiddos and even some adults 99% of the time.  Well Ethan is right to shout NOTHING, there is nothing WRONG with him.  He is simply just different...

  The more I processed what happened during the IEP meeting the sicker to my stomach I'd feel.  I couldn't believe that the very people who work to support their said "Vision" would be doing this to my son!?  To be exact their "Vision" is this;  "Working together to ensure each student becomes a successful and productive citizen in a diverse society."  Great vision, but the way I see it, that's a bunch of bullsh!t!!  How can children within this school district learn diversity?  Seriously, how can they learn about ALL the differences within our society if they are segregating the very children with differences?!!!???!?
  Don't get me wrong every one of these elementary schools we have been with have had a great team of staff members, excluding the 'district folks'. Teachers and staff that I have become very familiar with over the years. In fact I enjoyed listening to what the principal for Marshall had to say during the IEP meeting.  She seems very passionate about what she does and about the students within her school.  I was never against any one of these elementary schools.  What I was against was my boys being shuffled around. 
  A point I stress every chance I get;  If these moves keep happening the child involved might begin to think there is something "wrong" with them.... also an older or younger sibling being moved with that child might possibly resent the sibling or mom/dad over time because they always have to accommodate for their sibling.  This might not happen right away but when they are younger they don't notice everything.....but they do start to recognize why change happens and they understand it a little more and more as they age.  Think teenage years, you know when they start blaming everyone for everything:)  Yeah. Oh joy.  So I tried to stress to everyone that I didn't want Ethan to start wondering why it is always him that has to move...I didn't want him to question "Is there something wrong with me?"  Also to be honest I really dislike explaining to my other kiddos when something is changing or has to be done a certain way because of's a vicious cycle sometimes.  At one point while discussing things with our home care nurse Isaac stated that he did not want to change schools, he said he loves his friends and his teacher.  I felt my heart crack.  I made a promise that day, I promised Isaac that no matter what happens I will keep him where he is.  He seemed to take this and be content, you see I still had not involved the kiddos in any of this.  Ethan especially because he has a serious issue with change.  I don't blame him, he has seen more in his life than most.
We waited, my family and I.  We waited and my attorney kept us updated.  There was nothing.  They still hadn't called to say what the actual plan was.  We waited a month and then sent the school district's attorney this letter...

The following letter is exact minus some names, addresses and numbers:

July 6, 2010

Via first-class mail

Seattle, WA 98101

Re:    Ethan         (DOB 8/13/2003)
Marysville School District    

Dear Mr.       :

    I represent Michelle Short, the mother of Ethan  . Ethan is a student at Kellogg Marsh Elementary in the Marysville School District. We attended an IEP meeting at Ethan’s school on June 1, 2010, and I am writing this letter to follow up on our concerns before the start of the next school year. At the IEP meeting, the IEP team informed us that the district would no longer provide the level of nursing support Ethan has been receiving, and that Ethan would be forced to move to Marshall Elementary. For the reasons that follow, Ms. Short is opposed to these changes and requests that the district reconsider this decision.

    As you may remember, Ethan qualifies for special education under the Other Health Impaired category. Ethan has Goldenhar Syndrome, which is a congenital craniofacial difference that causes marked speech and communication delays. Additionally, Ethan has behavioral challenges related to his syndrome and the difficulty people have understanding his speech.

    Ethan’s syndrome also results in an inability to breathe through his mouth and nostrils, and he therefore has a tracheostomy in place to support his breathing. Because of this, Ethan requires constant vigilance to ensure that his airway is stable. Any nurse responding to an emergency must be able to provide tracheostomy care, including suctioning and replacement of a tracheostomy. Ethan’s medical providers have indicated that he could suffer permanent brain damage within four minutes of any emergency. Thus, he requires a high level of nursing support to ensure he can be safely educated in a general education classroom.

    Ms. Short is opposed to the district’s decision to move Ethan for several reasons. First, it was the district’s decision to have Ethan attend Kellogg Marsh last year. Based on this decision, Ms. Short also asked to have Ethan’s sibling reassigned to Kellogg Marsh. The district’s reversal of this decision has an unfortunate impact on both Ethan and his brother’s stability in school.

    Second, moving Ethan will have an adverse educational impact. Ethan’s speech is generally only 50 percent intelligible to people who have no familiarity working with him. Staff and friends at Kellogg Marsh have learned to understand Ethan, and this has lessened any behavioral disturbances attributed to communication problems. Moving Ethan to an entirely new school can reasonably be expected to interrupt the significant gains Ethan has made in overcoming his behavioral difficulties, and comes at a critical time for Ethan’s progress. There is apparently no transition plan in place for summer ESY services that would help Ethan transition to the new school. Because of the adverse impact, this constitutes a change in placement that Ethan’s parents oppose.

    Finally, the district has decided without appropriate medical support or evidence to terminate Ethan’s private duty nursing. For approximately three months of the last year, up to the final day of school, the district paid for Ethan’s private duty nurse to support him and another student at Kellogg Marsh. Ethan’s IEP includes the related service of having a “school health nurse” at all areas of the building. His most recent evaluation in February 2009 indicates that he requires a “nurse to be with him when at school.” The February 2010 PWN continuing his IEP indicates that he needs a health assistant to address his health needs. There is little evidence that the district has considered Ethan’s actual nursing needs, and this decision appears to be made mostly on the basis that the district became responsible for the cost of the nurse after Ethan’s parents lost access to a nurse through Medicaid around the beginning of the year.

    There is no plan in place that will provide adequate nursing support to Ethan at Marshall. The district indicated at the IEP meeting that it intends to provide one full-time school nurse for the entire Marshall Elementary school. Further, no person on Ethan’s IEP team could state what an appropriate ratio of nursing support for Marshall would be. This is concerning because the IEP team stated that Marshall was where the district placed most of its medically intensive students. Finally, the IEP team did not provide satisfactory assurances that the nurse at Marshall had any tracheostomy care training. The district’s decision to terminate Ethan’s nursing support is wrong, and it will likely put Ethan at risk when he comes to school.

    Ms. Short is requesting that the district reverse its decision to change Ethan’s placement, and reinstate his private nursing duty support. In order to respond in a timely manner to the district’s change of placement, we require your response as soon as possible. We hope that this matter can be resolved through discussion and that litigation will not be necessary. However, because the district has sent a prior written notice making these changes effective September 1, 2010, time is of the essence to ensure that Ethan has the appropriate support in place when he returns to school next year.

Thank you for your attention to this matter, and please contact me at your earliest convenience at              extension    .



Cc: Michelle Short