Inclusion and the Dignity of Risk, My Big Tiny Kindergartner at Last! Part 3

continued from Part 2 HERE

The weather teased that summer would surely stretch on, yet it slipped through our fingers with the outgoing tide.  Labor Day passed and Helena began preschool three mornings a week.  This leaves us childless for the first time since we had kids and I have to say, it’s pretty amazing.  On that first morning Mark and I sat in the quiet house and just stared at each other, relishing the silence, doing nothing.  Helena officially weighs three pounds more than her wispy older sister, yet they are same height.  The girls both wear a size 5, which makes stocking their wardrobe that much easier.  Helena (Lainey-Lou) has the long slender fingers of an artist or musician, the ruthlessness and skills of a seasoned interrogator, and a scream that makes the neighborhood dogs howl.  We love the social interaction and structure preschool provides to our most willful, loud and wild child who starts each morning talking before she opens her eyes.  The promise of preschool was a big motivator for potty training as we told her all summer that she couldn’t go to school with diapers and she hasn’t. 

Sophie and Alexander’s school is much larger than the Devonshire Elementary of my childhood.  There, we had only one class per grade.  My kids will have between 3 and 4.  At Open House I nosed around the classrooms where Alexander and Sophie would spend the year.  As my finger traced the letters of Sophie’s name distinguishing her cubby, my heart caught in my throat as it would off and on with regularity for the next week or so.  This was real.  My baby was going to Kindergarten.  

Parents mingled, teachers gave (sometimes nervous) presentations, and the first of many volunteer sheets were hung on the doors.  I took pictures of the classrooms to show Mark as the event was adults only and he stayed home with the kids.  It would be fair to say that most kindergarten parents that night were brimming with mixed emotions, but I was inwardly confident that no one could possibly understand the enormity we were experiencing.  Then Sophie’s Speech Therapist introduced me to a new family who has a son is in Alexander’s class.  Their daughter is 3 and happens to have Down syndrome and just like that I snapped back to reality and off of my self-imposed, imaginary island.

That night I delivered a letter that would go home with each of Sophie’s classmates on their first day.  This letter was plagiarized with permission from my dear friend and amazing woman Gillian Marchenko.  Sophie’s teacher Mrs. W. and her Principal supported the letter and the book that Mrs. W. would read which introduced her peers to the concept of differences and Down syndrome on an age appropriate level.  Our decision to put Sophie’s disability out there came down to this.  We opted for full disclosure, not just for her peers, but for their parents too.  At this age kids notice differences and naturally ask questions.  They have a built-in curiosity without judgment that we tend to lose as we age.  We wanted them to know Sophie, to know she may have differences, but to understand that different is not bad.  The letter opened the door to answering questions.   The plan was to get it out there so we could move forward.  We included the parents and hoped that they would embrace us.  They have, in droves. 

Sophie’s first day of Kindergarten was on a Friday which meant that Helena did not have preschool.  As a tribe, we walked to the bus stop, Sophie rolling her backpack which was half as big as she is.  I reminded Alexander 5 thousand times to sit with his sister on her first day.  I rattled on about having a great day, or was quiet and it was all in my head.  I can’t be sure which.  The bus arrived, the kids hoped on the bus, we buckled Sophie in her seat and my two oldest children rode off to school together.

Of course I hopped in the van and drove straight to school.  I beat the bus there and found her Personal Care Assistant (PCA) Miss A.  We waited together and I have no idea what we talked about.  It seemed as if an hour passed.  It had not.  When the bus arrived I fought with every fiber of my being to stay on the sidelines.  I snapped pictures, but let her and Miss A. get in line with her peers.  I cannot stress how desperately I wanted to hop in line with her.  I schemed a plan to sneak into her classroom and hide in the corner to observe.  Somehow, I stayed put and let her take her next steps towards her independence.

About that backpack?  Oh yes.  It had to go back in the closet for another day.  I’m not really sure what I was thinking.  She may be ready for it in the 4^th grade.

continued HERE

Inclusion and the Dignity of Risk, Summer Lovin,' Part 2

continued from Part 1

Over the summer I put the 5” binder in the closet.  We celebrated Sophie’s 5^th birthday on the 4^th of July with our 2^nd annual parade watching party.  (see 2011 party HERE) Friends joined us on a sweltering morning to enjoy a sangria fountain, a punch fountain for the kids, good old fashioned American patriotism, and enormous rented bounce house.  That afternoon Mark left on British Airways with a layover in London, (a treasonous way to celebrate Independence Day) on his way to teach a summer abroad course in Prague.  I joined him for 10 days where we also visited Budapest and found a diamond ring on the ground, seriously.  I arrived on our 11^th wedding anniversary (Bastille Day) with a layover in Paris, which I thought was quite fitting.  The kids stayed home with Grandma Paula and soaked up her love. 

This summer we camped in the back yard, went to the beach, worked on potty training and slowly began prepping for the big K.  Sophie would ride the same bus to and from school as her big brother and all of the other kids in the neighborhood.  She would have a seat similar to a car seat but designed for a bus for her safety, but no bus aid would be present.  I talked with Alexander about being a good big brother, sitting with her and keeping her company.  When the Director of Transportation Services called to offer her an alternative bus with all of the other kids with disabilities, I thanked him and gently gave him his first lesson on inclusion.  I bought school supplies, including an enormous wheeled back pack with her initials.  I spoke with the principal a few times and was a reference for the PCA that Sophie had in preschool.  Miss A is an over qualified kind, wonderful gift. Sophie’s new school agreed with me because they hired her.  Knowing that Sophie would have Miss A as she joined the ranks of the big kids in elementary school was a source of strength and relief for us.

Our school year starts after Labor Day and goes through mid-June, which we really enjoy.  Summer stretched on as I tried to prepare my heart for letting go a little more.  The IEP, placement, and staff were lined up and it was time for me to allow her the dignity of taking a risk on inclusion.  This thrilled and scared me at the same time.

to be continued

October Down syndrome

Weekend Blog Hop

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness! 

 

Inclusion and the Dignity of Risk, Kindergarten Prep, Part 1

Our family relocated to the East Coast just as Sophia turned 3 and was set to start preschool.  Within the first couple of weeks I fell into a small group of tough, smart as Hell mamas.  We were parents in the beginning stages of our advocacy journeys as our children with disabilities were all under the age of 4.  Together we completed a leadership program through Temple University – Institute on Disabilities called C2P2-EI.   We got schooled on inclusion and the laws that support it.  We met other smart as Hell mamas and papas and got connected to big players in our state.  I met some of my dearest friends through this program.  We may have been dangerous before C2P2-EI, but with it we became armed as well.  My job with PEAC came about as a result of connections made, but most importantly Sophie’s educational trajectory was forever altered.

A year before I was born the revolutionary Education for All Handicapped Children Act, Public Law 94-142 was signed into place. Currently enacted as Individuals with Disabilities Education Act (IDEA), this law guarantees my daughter, born 32 year later, a right to education in this country.  I will be forever in debt to the great ones who came before us who worked tirelessly to get us where we are today and to my peers who have not given up the fight.  (Learn about some of them HERE)  Before having Sophie, I had heard in passing of IDEA but it certainly didn’t pertain to my life.  Least Restrictive Environment (LRE) and Free and Appropriate Public Education (FAPE) were unfamiliar terms.  Now, as a proud member of the disability community and parent to a child receiving special education services, these laws have become my armor.

Now, IDEA does not use the term inclusion, which means that the Department of Education has not defined it.  However, IDEA requires that school districts must place students in their Least Restrictive Environment (LRE).  So, what is that?

 

“LRE means that, to the maximum extent appropriate, school districts must educate students with disabilities in the regular classroom with appropriate aids and supports, referred to ‘supplementary aides and services,’ along with their nondisabled peers in the school they would attend if not disabled, unless a student’s Individual Education Plan (IEP) requires some other arrangement.  This requires an individualized inquiry into the unique educational needs of each disabled student in determining the possible range of aids and supports that are needed to facilitate the student’splacement in the regular education environment before a more restrictive placement is considered.”
 

These are pretty powerful words that protect Sophie’s right to an inclusive education.  The definition of LRE is the key.  Sophie’s placement must be based on her individual needs.  Placement in a regular education classroom must be the first choice unless her needs dictate otherwise, and that’s where it can get tricky. 
 

Sophie has a team of experts who have created her lawfully biding IEP.  The team consists of the school principal, her therapists (speech, occupational, and physical), a psychologist, special education teacher, her Personal Care Assistant (PCA), and her parents.  Preparing for her transition to kindergarten meeting took months of work on my behalf but also from her dedicated team who conducted evaluations to assess her needs.  Some people use music, such as the theme from Rocky to pump themselves up before a big event.  I watched Including Samuel for the umpteenth time.

At the IEP transition meeting last spring, Mark and I arrived with my 5” thick double ringed binder.  On one side of the binder is paperwork filled with past and current evaluation reports, Sophie’s IEP, the invitation to the IEP meeting from the school which listed who needed to be present and the purpose of the meeting.  This was especially important as they originally did not invite a general education teacher (which is required in this case) until I made a gentle but firm stink about it. There are progress reports from preschool (called the Intermediate Unit), our communication log, and certificates of achievement and other notes from preschool teachers and her peers.  Most importantly, I have her Vision Statement, which is how we began the meeting. 

On the other side of the binder I brought the law.  I have print outs from the Department of Education, Office of Special Education and Rehabilitative Services (OSERS) about IDEA, LRE, and FAPE.  Documents include information about determining placement from Wrightslaw.  I have an entire annotated IEP to refer to, which is a template for what needs to be in the IEP.  I have a copy of a message from our Director of the Bureau of Special Education who discusses LRE. I have highlighted pages from our school district’s own website about their mission and curriculum for students receiving special education services.  I have resources from PaTTAN on supplementary aides and services and articles written by greats such as Cheryl Jorgenson (The Least Dangerous Assumption), and Kathie Snow (of “Disability is Natural” and Revolutionary Common Sense).  Lastly I have a copy of the Procedural Safeguards Notice, which as its name suggests describes our rights and the procedures that safeguard our rights under state and federal special education law. 

It was a morning meeting that would last hours, so we also brought breakfast.  Treating your IEP team is by no means required but I highly recommend it.  As placement technically cannot be determined before writing the IEP, we didn’t discuss this until the end of the meeting, despite this being my most pressing concern.  Although the school district does not offer a full day for kindergarten, the team felt that she would benefit from going all day.  She would have the social interaction and opportunities to repeat what she learned by being in the same class for am and pm kindergarten.  She would be in a regular education classroom with her supports and services in the class room as much as possible, which for Sophie is 85% of her day.  Full inclusion is generally 80% or more.  This is called push-in, or having her services pushed into the everyday class.

During evaluations, they witnessed that she still has a tendency to elope (escape).  As safety is a main concern, they decided she would have a full-time Personal Care Assistant (PCA), which will decrease as her needs evolve.  The goals and supports written in her IEP are exactly what she needs.  When they announced their placement recommendation, I threatened to kiss the special education teacher.  Everyone roared and the principal dared me as she had not witnessed that before.  I gathered myself together, but didn’t come down from Cloud 9 for weeks.  I had walked in a ball of nerves, ready to fight if I needed to.  IDEA was my armor, the binder my sword, Mark my strength, and Sophie my inspiration.  The principal looked me right in the eyes and said softly, "We believe in inclusion here." 

continued HERE

If you have the time, I highly recommend viewing Cheryl Jorgenson giving a presentation about the Least Dangerous Assumption. It starts about 42 seconds into the embedded video below.

"The Least Dangerous Assumption", Cheryl Jorgenson, Ph.D., Presenter from Institute on Disability on Vimeo.

October Down syndrome

Weekend Blog Hop

 

 

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness!

 

Fighting for People with Disabilities

Villanova Buddy Walk 2012

Please join Team Sophie on Sunday, October 7, 2012, at Villanova University Stadium for The Children’s Hospital of Philadelphia 11th Annual Buddy Walk^® and Family Fun Day. In addition to the Walk^®, the day will be filled with great activities for the whole family. We would really like to see as many of our friends as possible walk with Team Sophie!

In just ten years, this Buddy Walk^®has raised over $2.1 million for the (Down syndrome) Trisomy 21 Program at The Children's Hospital of Philadelphia. By working together we can make this wonderful event even more successful.

To Register to Walk with Team Sophie, visit our page at: http://giving.chop.edu/goto/Team_Sophie

Scroll down to Team Sophie and click Join Team and follow the instructions.

To Donate without Walking, visit our page at: http://giving.chop.edu/goto/Team_Sophie
Scroll down under the photo of Sophie and click, Donate to Team Sophie! 
 

On behalf of our family and Team Sophie, we thank you for your support.

Gratefully,

Mark, Jen, Alexander, Sophie, & Helena

Seeking Input, Prenatal Diagnosis of Down Syndrome Pamphlet

Calling all family members, self advocates, friends, and supporters in the Down syndrome community!!! Please, please, please take the time to review this draft pamphlet to be given to families with a prenatal diagnosis or likelihood of having a child with Down syndrome. Let's help make this the best it can possibly be. Our input is important.  The window for providing feedback is short.  Please follow the link & share widely: http://www.downsyndrometest.org/

Welcome Home PAWS

Alexander's 1st grade class participated in a special project this year called PAWS.  PAWS is a little blue puppy that stands for Pet's Amazing World Study.  Each PAWS has his own journal and his mission was to travel and report back about the climate, customs, and other interesting facts that he learned on his journey.  

The class really enjoyed receiving postcards from PAWS, but the journal didn't arrive until the end of the project.  As each postcard was delivered, Ms. P would read it aloud and then it would be hung on the wall.  You can see that PAWS made some exciting stops in these journal pages.

Look closely and you can see PAWS near the trains.

In addition to the trips PAWS documented in his journal, he also managed to travel to many other states and countries thanks to the generosity and kindness of family, friends, and even strangers.  I posted on fb about the project and asked if anyone would be willing to send him a postcard on behalf of PAWS.  The response was overwhelming.

PAWS had a welcome back party and the kids were allowed to bring him home along with their journal and postcards.  As I read through the stack of postcards last night, I was so stunned by the kindness shown to my son.  Friends and family came through for him but I also had a few friends who asked if they could pass the idea along to their friends living in different states and countries.  As a result, Alexander received postcards from:

Portland, OR, Champaign, IL, Myrtle Beach, SC, Minnesota, Staumton, VA, Costa Rica, Paris, France, Denver, CO, Copenhagen, Denmark, Cedar Falls, Iowa, Molkom, Sweden, Zurich, Switzerland, Berlin, Germany, Multnomah Falls, OR, lighthouses of OR, Des Moines, IA, Durham, NH, Ascona, Switzerland, Minneapolis, MN, Indianapolis, IN, Belfast, Ireland, NY, NY, Mt. Hood, Oregon, Ohio, Springfield, IL, Florida, Kilcreggan, Scotland, Ontario, Canada, Baraboo, WI, and Santa Fe, NM.

This is just unreal and we appreciate each and every one of you who participated in PAWS journey which truly took him around the world.  Thank you so much!