It came and went

I just looked at the calendar this morning and realized that Polly's stroke date, October 17th, came and went this year. It's been two years since she had a stroke and was diagnosed with Moyamoya disease and underwent two brain surgeries to combat Moyamoya's nasty artery thinning abilities.

 Polly after her first brain surgery for Moyamoya in December of '09

Last year, my body sensed the date coming. All that week I walked around the house with my shoulders pressed upwards towards my ears from stress. This year, instead, I've been thinking about querying agents for the book I wrote about Polly, and about Evie's birthday coming up, and about buying candy for the weekend and catching up on laundry.

I didn't think about the stroke day. Not once.

Moyamoya will always be a part of our lives. Another stroke could pop up at any time.

But I am so thankful that Polly is here, today, stroke free, probably raising cane right now in her mainstreamed kindergarten class.

I'm thankful for her health and that at least this year, October 17th was just another date on the calendar.

Polly this year on her first day of Kindergarten

Great email from aid about Polly's first week!

The following email is from Polly's aid. I am so thankful for such a great update about Polly's first week mainstreamed in Kindergarten!

Good evening,

I wanted to contact you just to give you an overview of the amazing week I had with Polly. I know you have probably been in close contact with Ms. ***** but as someone who worked with Polly quite often, I wanted to give you a little overview from my perspective. I took your email information from the information sheet that you provided for the parents. I hope this is ok.

From the moment I met her, I knew she was going to a great student to work with. I was extremely excited. The first day was good. Definitely a time of adjusting and observation. A little challenging but I don't think she purposely sought to challenge me. It was simply my first day ever working in a position as an individual assistant so it took time for me to adjust as well. Wednesday was a day of great improvement with Polly being very cooperative and obedient. I believe that was the day you came and she did continuously ask where her mom was but she was still very cooperative. I don't think it hindered her focus.

Thursday was amazing. In the morning, we wrote numbers. I would call out the number and she would repeat. I would then write the number down and she would try to trace it. I had a really proud "teacher" moment when we opened up her green notebook to keep going after running out of space and she wrote the number 14 and said it without any help from me. I actually wrote a note in the notebook after she did it. She is really great at counting and went ahead of me when I tried to count slowly just to let me now that she could do it. Since Wednesday, she has been great at using the restroom as well. I'm only with her for 30minutes in the morning and an hour in the afternoon so I only do bathroom break with her once a day but when there she is great. She really likes being independent with using the restroom, even trying to lock the door when she hears her classmates slamming and locking the doors.

I have lunch with her as well and she is great with that. As I told you, the first day, she did have a challenge with seeing her sister but now when her sister speaks, Polly speaks back and is fine after. No attempts to run after her. Today she whispered to me and told me that her sister was coming soon as if she knows the moment that her sister comes to speak each day. She tends to try to eat all her food but with a short lunch time, its a little hard for her to finish. I've realized that she likes to do things that she sees/hears others doing. In some instances this has worked such as the bathroom and sitting and standing when asked but sometimes when her classmates do things that they shouldn't, she repeats but she will be fine. Today was great. I didn't have to help her much at all. She stayed in line, walking on her own, and followed all directions.

I do hope for more updates as encouraging as this! Go Polly! And a huge thanks to Polly's aid. You made this Mama's week! I hope to update on Evie's school later this week.

My Friend Isabelle take home sheet for Polly's mainstream class

(The following info. is part of the take home sheet I prepared for Polly's class. Her teacher invited me to come and read a book and talk to the children about Down syndrome. What a fabulous idea!)

Hey Room 108 parents!

Meet Polly!

This is Polly. She is five years old and thrilled to be an Audubon Hawk this year, just like her two older sisters (Elaina- 5th grade and Zoya -4th grade).

Ms. Stack graciously invited me to read a book to the students. I chose “My Friend Isabelle” by Eliza Woloson. It’s a fun book about a typical friendship between a little boy named Charlie and his friend Isabelle. Throughout their play-date, Charlie talks about how he and Isabelle are both alike and different.

“I run fast. Isabelle takes her time.”

“We drink apple juice and eat Cheerios at the little red table and chairs.”

Isabelle and Polly have something in common, too. They both have Down syndrome.

Today at school, I attempted to provide a kindergarten appropriate definition of Down syndrome for Polly’s classmates:

"Down syndrome is something that causes differences in the way a child looks and learns. Babies with Down syndrome are born with an extra chromosome in some or all of their cells. Chromosomes are tiny, thread-shaped things inside your body. They contain the directions that tell your body how to grow. These directions tell your body what color your eyes and hair will be, how big your nose will be, whether you will be a good singer, and many other things. When a kid has an extra chromosome, it mixes up his body’s directions a little. That is why kids with Down syndrome look a little different from others sometimes and have to try harder to learn."(adapted from "We'll Pain the Octopus Red" discussion points at the back of the book)

I would love to see all our kids in Rm. 108 have a fabulous year. In that vein, I’d like to ask you to talk to your child about “My Friend Isabelle.” You can talk about:

- The definition of Down syndrome

-Differences and similarities between your child and other classmates

-How different doesn’t mean bad

-How to be a good friend to everyone at school

-How Polly may need a little more time to learn things, but that she will learn.

If you or your child has questions for me or Polly, we’re happy to try to answer them. And just like Charlie and Isabelle, we love play-dates!

Warmly,

Gillian Marchenko, Polly’s Mom

First day of school! Yeehaw!

School is now in session. Hooray!!

Polly is in kindergarten. Say a prayer for her. She's in a mainstream kindergarten class
with an aid.

Elaina is in fifth grade.

Zoya's in fourth.

Evangeline is doing half day preschool one more year. She's the only kiddo on the bus this year. Say a prayer that her year kicks off to a great start.

Here's a pic of all the kids going to the neighborhood school. (Evangeline already left for her school on the bus). Our friends Riley, Kadin and Layla started at our school this year too. Fun!

More than taken care of

Polly at her preschool awards ceremony last year

Worries about inclusion

I have to admit, when Sergei, the IEP team, and I decided to try Polly out this year in mainstream kindergarten, I was nervous. On one hand, I thought it would be great for her. I could see her thriving with her typically developing peers, sitting well at circle time, working on printing her name, playing with a friend at recess.

But on the other hand, especially as the school year approached, I started to worry. What if she runs away from line while the kids are taking a bathroom break? What if she disrupts the whole class too much? Will other kids make fun of her when they notice she still wears pull ups for the the occassional accident?

What if her school simply accomodates her without putting together a great program that meets her needs? I don't want inclusion to mean she gets to be with the other kids, but on the fringe.

A couple weeks ago I started to have trouble sleeping. I kept finding a heavy stone of worry in the pit of my stomach. This placement isn't going to work. This placement isn't going to work. I'd pray, or roll over, or wake Sergei up so he could assure me that Polly would be fine.

Our neighborhood school where Elaina and Zoya go is wonderful. We've had fantastic teachers for both girls every year. And the administration is striving for excellence and approachable. But I haven't seen that many kids with special needs there. Would we need to blaze a trail and if so, did I have enough fire in me to light the match?

Assurance from her school

Just when my consuption of worry was starting to equal a meal, I got a phone call from Polly's school.

"Hi, this is Polly's kindergarten teacher Ms. *****. We'd like to have Polly come in next week so I can meet her and do an assessment."

Polly and I walked to school two days later. She met her new teacher, sat up to the child-size work desk, and proceeded to show me and her teacher that she knew nearly all the letters of the alphabet. She knew several shapes. She answered questions and with gentle reminders, stayed on task. I nearly bubbled with pride. Her teacher seemed pleased, too.

During the assesment, another teacher came into the room.

"Hello, Mrs. Marchenko, I'm a learning specialist here at the school. And hello Polly!" The teacher turned to Polly and gave her a big hug and a high five. "Polly, I know you! I came to your other school and watched you in pre-school several times. I am so glad you are here with us. We've been waiting for you."

They've been waiting for Polly.

The learning specialist explained to me that she works with kids who have IEPS. She spends most of her time at our neighborhood school, but has also worked at Polly's pre-school. "I've been working with kids with special needs since 1992, and I only do inclusion. Polly's going to do great here. We are setting up a wonderful schedule for her."

Since that day, I've corresponded a bit more with the learning specialist. Although Polly will have an aid working with her, this teacher will oversee Polly's days. When Polly is pulled out of class to work on IEP appropriate subjects (probably math and writing), she'll be with this teacher.

"Mrs. Marchenko, we'd like you to come to Polly's class the first week and read a book about Down syndrome, too."

This teacher combed through Polly's IEP and made an appropriate schedule for her. She met with the aid and with Polly's kindergarten teacher and walked them through the schedule and prepped them a bit on ways to include Polly in the classroom as well.

I am blown away.

When you have a child with special needs, there is always a concern that your kid will simply be tolerated. In my book, being tolerated is only a slight step up from being made fun of or ignored.

School starts next Tuesday, September 6th. I'm still not sure how Polly will do fully included. But I am confident her school is ready for her. She has a great team of professionals to help her thrive. And they are thrilled to have her.

Polly will be more than taken care of, which does a Mama's heart good.

So come on, mainstream kindergarten! Let's do this thing!

Friday Feature: A word picture of acceptance, by Marlene

Big thanks to my friend Marlene for being this week's Friday Feature guest blogger!

Hi, I’m Marlene. I’m not a blogger. I AM a fan of Gillian. And I love to share my life with my daughter with others, hoping to show, little by little, that life with Down syndrome is better than you might think!

My 7 year old daughter, Aleena, is our one and only, born to us 2 months before our 15^th wedding anniversary after years of infertility. I found out at her birth that she had Ds. I struggled. A LOT with that diagnosis - especially after so many years of infertility. But, I was so blessed to find a community of parents online who all have a child/children with Down syndrome. They showed me the beauty, hope and promise of this new world. That has made all the difference and now I share the beauty, hope and promise of my world with others.

Aleena is going into 2^nd grade this fall. She goes to our local elementary and is in the regular ed class with a one/one aide. Inclusion is very important to me. I worried, though, how she would be accepted by her classmates. During a visit to school this past June, I was out on the playground chatting with the teachers. I just happened to catch this beautiful moment – unfortunately I did not get a picture, but I’ll paint the picture for you with words.

Two little girls, walking arm in arm across an empty portion of the playground.

Two little girls, somehow dressed exactly alike, wearing bright pink t-shirts and denim shorts to the knees.

Two little girls, arm in arm.

One with black hair, one with blonde.

One black arm, one white arm.

One typical little girl, one little girl with disabilities.

Walking arm in arm to the jungle gym.

What a beautiful Moment.

A picture of Friendship.

A picture of Acceptance.

Beautiful in so many ways.

Polly Update, is full inclusion of kids with special needs always the best choice?

Polly's most recent big news is that she no longer requires glasses. We saw her Ophthalmologist at Children's Memorial Hospital a few weeks ago, and he said her lazy eye has strengthened and her far sightedness is minimal for now. She does still have Nystagmus, a condition where the eye ball shakes, but that has died way down too. We will visit him again in three months. Polly looked adorable in glasses, but she was always losing them and breaking them. One less thing to worry about makes a Mama happy!

Polly is healthy. She had her annual Moyamoya brain scan and the blood was flowing well! We have not detected any other incidences of strokes or seizures. Thank you, God!

We are working on finalizing her potty training so that she will be accident free and ready for class in the fall, she still is head over heels for Evie and includes her in her activities at home all day long. She jokes, she follows conversations, she contributes. And when one of us are hurt or sad, she is right there with us, hugging, talking, making us laugh.

She continues to amaze me every day.

Full Inclusion? Is it always best?

In June, Polly graduated from preschool. She had a great year and we were sad to say goodbye to her beloved teacher Ms. Barbara. After much worry and prayer, and touring other schools, and weighing the pros and cons, it has been decided that Polly will attend our neighborhood school and be fully included for kindergarten next year. She will have a one on one aid.

This decision scares the crap out of me, even though the growing trend is for kids with special needs to be fully included in school. I am nervous because she is coming out of a blended pre-k where she got the best of both worlds; both typically developing and kids with IEPS in one classroom, and two teachers, one of whom was focused primarily on kids with IEPS.

Polly did well in that classroom setting but it was still a challenge. She struggled with transitions. Her fine motor skills (pre-writing, etc...) were slow coming. She was behind her peers both socially and academically and gave the teacher she loved so much a run for her money several times a week.

When making this decision, Sergei and I tried to find a blended classroom for kindergarten, but Chicago has done away with it for that grade level. We toured a school that kept kids in the typical program as much as possible, but also had a self contained classroom that would include other students for math, and writing and reading. We tried to get Polly placed there, the rest of her IEP team agreed that was the best option for her, but the school denied our access. Our awesome neighborhood school (where Elaina and Zoya both go) stepped up and agreed to meet Polly's needs at home.

My question is this: Is full inclusion always best?

My concern for Polly fully included is that she will actually experience even more exclusion. When she'll need help with academics in kindergarten (and she will) she will be pulled out of class with her aid. I'm worried she will be working alone, a lot, in another room away from her classmates. Also, Polly is a smart cookie. Will she notice the difference and feel the pressure as she struggles to hold a pencil and write the letter "P." Will she notice her peers fly through their names and move on to another assignment?

She'll probably do fine. Polly is smart and confident and has taken on every challenge in life with grace and determination. (And if it is too much for her, I can always call another IEP meeting and we can work on another placement.)

I see her placement as an experiment. If she is not doing well fully included, we will re-evaluate and if need be, we will find a better fit for her. I believe in full inclusion, but I do not believe that it is always the best choice for every child. I love to see kids with special needs in typical classrooms. I want full inclusion for both Polly and Evie. But I don't want it at their expense, to either stroke my pride or to impress other people. I think that there are many instances where a self contained or blended classroom could be more appropriate for a child. Evie is a great example. She would not flourish in a typical classroom, at least for this next year.

As much as I believe in inclusion in school for kids with special needs, I even more so believe in seeing each child as an individual. Therefore, a decision regarding school that fits the child and family and situation best is individual. Sometimes it will be full inclusion, sometimes blended, sometimes self-contained.

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Do you have a child with special needs? What's your take on inclusion? I know this is a hot topic, but courteous, respectful dialogue is always welcome here at Pocket Lint.