Happy Halloween

The day after Superstorm Sandy, the Kerstings who did not lose power, had us over for dinner, hot showers, recharging computers and baking cupcakes for Sophie’s school Halloween party.

By candle light at home we decorated the cupcakes and watched Charlie Brown movies on the laptop.

Superstorm Sandy tried but was unable to take our Halloween from us. Our power came back on at 5:46am, 32 hours after we lost it. I know because the cable box made a clicking sound and I woke up immediately.  With it came heat, tv, internet, school, and a happy family.

My little wolf

Kitty cat in her award winning costume with her friends 

Alexander as Herobrine from Minecraft 

Helena headed to preschool in costume and the kids got on the bus.  As Sophie goes to am kindergarten and repeats class by attending pm kindergarten, she had two Halloween parties.  In the afternoon, Helena and I headed back to school for the Halloween parade which was held indoors followed by parties in the classrooms.

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We were so excited to have the Kerstings join us for trick or treating.  As Ras is from Germany, Samuel is 2, and Klara is 1, this was their first year for trick or treating.  That was a lot of fun to witness. Sophie’s hip started bothering her, so we carried her between houses but had her walk to the doors.  The kids made quite the haul. Getting out of the house and socializing with the neighbors was just what we needed.

Thank goodness our generator arrived on Friday. We will be glad to have it during the next power outage. It’s powerful enough to run the fridge, furnace, and a few other items, which is all we really need.  Here’s hoping that won’t be for a long time.  Happy Halloween!

Inclusion and the Dignity of Risk, Belle of the Ball, Part 4

continued from Part 3, HERE
Based on the events of last evening, I decided to skip ahead a bit in the telling of Sophie’s inclusion experience in kindergarten.  This is just too good to wait on a virtual shelf.
As with most aspects of her story, it cannot be told without including the whole family and now, her friends.  Her little circle is growing larger by the day.  In the end, inclusion is not just about how Sophie will be educated in school.  It is about her self identity and sense of belonging in this world.  It is about being the best that she can be and being accepted as a valued member of the community.
In this recent post about Making October, I wrote about the Halloween costumes that I was making for the kids this year.  Helena is a wolf, Sophie is a cat, and Alexander is Herobrine, a character in the computer game Minecraft.  My deadline was 6pm on Friday so I had less than a week to pull them together.  The elementary school PTO hosts a Halloween Spooktacular every year.  It is in addition to the traditional costume parade and classroom parties that take place on Halloween.  They pack the gym with Halloween crafts, games, music, and pizza.  The costume contest is done by grade and there are between 3-4 classes per grade.
Sophie had taken a little nap between school and the party.  When we woke her up, she was very upset.  I had been able to get Alexander and Helena ready with no trouble.  I could barely get her costume on and adding a pink nose and whiskers was not happening.
Everything changed the moment we got to school.  It took us 10 minutes to make it from the hallway to the gym as Sophie’s friends and some of the parents stopped to chat and admire the  kids’ costumes.  Once inside, it was mass chaos.  The kids preferred to mingle with their peers on the stage over doing crafts and games.  It was hot in that gym, especially for those in costume.  Grinning from ear to ear we watched as not only kindergartners but older kids came up to Sophie, excited to see her.  It was a real love fest filled with dozens of hugs.
The time came for the costume contest and Sophie lined up with her best buds.  Alexander was a real ham, posing and showing off the diamond sword his daddy had made for him.  By then his makeup had been sufficiently sweated off, but he worked it.
After each grade had their turn on stage and the judges made their decision, they were ready to announce the winners.  By then we had made our way across the gym to enjoy some cold chocolate milk when they announced that the prize for best costume for kindergarten went to the little gray mouse.  Remember, Sophie was a cat, a little gray cat, not a mouse, so I wasn’t sure they were talking about her.  Still, I lifted her up to my right shoulder over the crowd, as if to say, “this little gray mouse?  Is this who you mean?”  She had won and as it was impossible to maneuver through the crowd on her own, I kept Sophie on my shoulder as we made our way to the stage.  I’m not going to lie, it was a bit of an out of body moment for me.
We got to the stage and they took her name.  I didn’t care to correct them about the mouse/cat thing as I was too busy grinning and snapping pictures.  I just watched as Sophie stood proudly, holding her prize of popcorn, candy, and a movie pass while her friends cheered, “Yay Sophie!”  Alexander quickly got over not winning against the awesome Lego man of the 2nd grade and was truly happy for his baby sister.  We headed home to enjoy Sophie’s prize. 
Her daddy said it best, not only because of the contest, but how fully her peers, their parents, and even the older kids have embraced her, our little Sophie was the belle of the ball.
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, 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, 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!

 

Restless Mind

I can't sleep tonight. Tomorrow morning we will visit a potential preschool for Sophia. Preschool for my baby girl. I've heard good things about this school. It has a mix of kids with IEPs and kids without. She would receive her therapies there. If we like it and it is a good fit, we sign the papers tomorrow.

Kindergarten registration for Alexander is Thursday. Kindergarten for my baby boy. It is a half day session, but I can't choose am or pm as it depends on the class size and makeup. This means that depending on which session he is placed in, one or both of my school kids may be riding a bus. My babies. On a bus. With Alexander, I'm ok. I'm sentimental, but ok. The thought of putting my 3 year old on a bus makes me dizzy. If I could carry her there in my womb, I would do it. I have friends who have already been through this and survived. Her IEP specifies door to door service. It will be ok. She will be ok. I will be driving behind that bus on the first day, even if it means Mark misses work.

Enough of that. Recently our camera was dropped and broke. My camera is like an appendage. I cannot be without one, but fixing old cameras costs as much as buying a new one. Mark was having heart palpitations about spending the money on a new one, but this did not compare to my freak out in not having one. So after a little research we took our birthday cash and picked up a Sony point and shoot. This new tiny camera is light years ahead of my old camera and even films in HD. I'm not even sure exactly what HD is.

I've only snapped a few shots and am just learning all the settings. So far, I'm pretty impressed. I'm also thrilled that it has a rechargeable battery which practically pays for itself in a year or so. This little camera has a feature to shoot panoramic photos. You hold down the button and span to get your shot and it stitches it together. You're supposed to shoot in a straight line. I hate being told what to do so the kids and I messed around a little tonight (even though the light was a bit too dim) and came up with a few mind benders. Instead of shooting straight, I shot in an arc. Instead of having them sit still, I encouraged them to run in circles resulting in multiple images of each kid in the same shot. It's best to click them to enlarge.

Oh my sweet Lainey Lou. You won't leave your momma for school. What are we going to do with ourselves this fall?

School doesn't start for Sophie for four weeks and 5 weeks for Alexander, so I am refocusing on enjoying every last drop of summer. We hope to hit the beach this week, camera in hand.