Find Us On Facebook
Follow Us On Twitter
"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

Read more about us and this blog...

Here's our summary of our best and most important posts of 2012.

Life With Harlequin Ichthyosis: School Daze

Our guest post today is by Shannon, mom to Lauren. Lauren is 8 years old and a Brownie Girl Scout.
————–
“If there were no schools to take the children away from home part of the time, the insane asylums would be filled with mothers.” -
Edgar W. Howe

After three years of Early Intervention and the parades of professional coming and going at will from our house, John, Lauren and I prepared ourselves for yet another transition.  Of course unlike most families in our neighborhood, who mark this particular occasion as entry to Kindergarten, we were about to commit our three year old daughter into the hands of public education.

Project Support, the district’s integrated public preschool program, was and still is housed in a very old section of the town’s High School, which at the time I referred to affectionately as the “bowels” of the High School.  I remember the day we were asked to tour.  My first thought as we entered the building was “Hell, no.”

Then we met Carol, the person I still credit today, for my 180-degree attitude re-adjustment.  She was the program’s full time school nurse.  In advance of our visit and completely on her own, she researched Harlequin Ichthyosis and developed what remains today Lauren’s Healthcare Plan.  This was the document (even more than the IEP) that provided the assurance that every step was going to be taken to ensure Lauren’s safety and well being while at school.  Carol got it.  Everything from the obvious skin care, hydration and temperature issues, to lesser thought of issues like transitioning during a fire drill (Lauren was not yet walking) or should she be allowed to use certain finger paints/foams because of the higher alcohol content and dyes.  She was and remains one of my key “go to” people as we continue our relationship with the school district.

Lauren thrived at Project Support and had mastered skills in advance of many preschoolers.  We loved the program director, her teachers and the entire staff.  Alas, all good things must come to some end and in the Spring of 2009 as we celebrated Lauren’s preschool graduation, the stress of yet another transition seeped in.  In just three short months, Lauren would be entering into a fully integrated Kindergarten classroom at our neighborhood elementary school.  The training wheels were coming off and we were now entering, along with the rest of those neighborhood children, our elementary school community.  Someone please pass the Ativan!

Kindergarten orientation occurred a few days before the start of school and was our first opportunity to meet her teacher, as well as her fellow classmates and their families.  The class size alone was an adjustment.  Remember we were coming from a very small and structured class of maybe 8 kids, to a rowdy group of 20 plus all of whom towered over our Lauren.  Thank the stars and those behind the scene school elves working in administration we were assigned a 1:1 paraprofessional to ensure Lauren’s safe transition within and outside the classroom.  Someone to prevent her from being accidently knocked into in the hallways or run over on the playground.  We immediately loved the teacher and Lauren’s 1:1 but remained concerned about her building long and lasting friendships with the other kids, few known to us before that first day of Kindergarten.

While I did share with the classroom teacher and principal, the written resources and video available from FIRST, our greatest regret in retrospect, is that we did not formally or even informally attempt to introduce Ichthyosis to the larger school community and beyond.  Even now, 3 years later I am met with an occasional parent concern or question regarding Lauren’s appearance and what “happened” to her.  My do over, would be to send a letter or some communication home with each classmate at the start of the school year, introducing our family and letting parents know that we welcome and encourage questions in every effort to educate and limit any misunderstanding or assumption.

Lauren’s principal and educational team have been amazing at predicting her environmental and educational needs.  Air conditioning units are provided and now extend to all of her learning environments, including art and computer lab.  She can opt out of outdoor recess on the particularly hot or cold days, and instead can choose a friend(s) to play with inside.  Shaded areas have been added to the playground and blacktops to limit exposure.  Lauren is sent to school with a sunhat, sunglasses and protective clothing as needed.  She has participated fully, with some accommodation and attention, in gym and in her school’s field day, a largely outdoor event.  For practical purpose, we have provided the classroom teacher with a small “dust buster” for spot cleaning around her desk and chair so that she is not embarrassed when a little bit of her is left behind.  She makes a daily visit to the school nurse for a mid day skin treatment and eye care.

We couldn’t be happier with our school’s response and support.  Lauren is a very successful third grader.  She is excited every morning to get up and go to school.  She loves homework (I know.  Weird, huh).  She is quite popular, especially with the older girls who like to “take care” of her.  She enjoys her friendships with her classmates, many from those first days of Kindergarten.  She is regularly invited to birthday parties and play dates.  She tends to be a little boy crazy, but so far those charming boys have been quite tolerant of her repeated hugs and adorations.

It is my nature to worry and I still worry just before a school planning meeting.  Admittedly, the thought of middle school terrifies me.  I remain hopeful that as with all of our previous transitions, we will rise to that occasion as well with Lauren’s tenacity, with the continued support and encouragement of our public school family and with lessons learned from those who have traveled this road ahead of us.

Thank you Rachel and Jennifer for letting me share a part of our story.

——————

We are not doctors or medical professionals. A doctor or nurse looking to confirm or consult on a diagnosis of harlequin ichthyosis should immediately contact FIRST, the Foundation for Ichthyosis and Related Skin Types because time is of the essence and specialized expertise is critical in caring for a newborn with harlequin ichthyosis.

Part 1: Life with harlequin ichthyosis: The basic science behind harlequin ichthyosis
Part 2: Life with harlequin ichthyosis: Newborn Surprise
Part 3: Life with harlequin ichthoysis: In the NICU
Part 4: Life with harlequin ichthoysis: Going Home
Part 5: Life with harlequin ichthoysis: Ups and Downs in the First Year
Part 6: Life with harlequin ichthoysis: Toddler years
Part 7: Life with harlequin ichthoysis: Starting Elementary School <–You Are Here
Part 8: Life with harlequin ichthoysis: The Downs of Middle School
Part 9: Life with harlequin ichthoysis: The Ups of High School
Part 10: Life with harlequin ichthyosis: Moving Past School
Part 11: Life with harlequin ichthyosis: A Harlequin Pregnancy

1 comment to Life With Harlequin Ichthyosis: School Daze

  • Pauline

    Hi Shannon, I have really enjoyed your journey with Lauren. it is wonderful to see how much she is socially thriving and how accommodating the school is.

    Just wonderful news.

    Take care
    Love Pauline

Leave a Reply

  

  

  

You can use these HTML tags

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>