Our Kindergartner

We have celebrated so many of Cora's milestones.

Finally bringing her home from the NICU.

Having heart surgery.

Learning to nurse.

Learning to eat.

Learning to sign.

Learning to walk.

Becoming a big sister.

Going to preschool.

We have celebrated a myriad of big and small accomplishments that have each seemed to be momentous, many of them because she worked so very hard to get there.  Like learning to ride a tricycle, jumping with both feet off the ground, getting to be a great climber, starting to speak in small sentences, making lots of friends, and giving herself a haircut with my crafting scissors.

And now we are celebrating a step that through it all seemed to loom and intimidate, that seemed so daunting and exciting and terrifying:  starting kindergarten.

Cora started kindergarten last week.

She took it in a stride, walking proudly and confidently into the classroom, saying hello to everyone in sight and offering luminous smiles and high-fives. She hung up her sweater and backpack, took her seat and yelled, "Bye Mama! Bye Ruby! Bye Daddy!" as she settled in and didn't look back.  She took that school by storm.

Already everyone seems to know who she is.  The adults at school all greet her when she walks past. When we're out on walks, kids from doorsteps shout out hellos as we go past.  While tired, she seems to be transitioning so smoothly.  She is overjoyed to go to school each day.

It's me that has been nervous and anxious and alternately terrified. It's me that spent hours, days, weeks, months and even years preparing to be her advocate and to support her in an inclusive placement in our neighborhood school. It's me that felt like there was no way I could be enough; that the struggle would be too much.  It's me that followed the stories of so many friends that have come before, many who also fought to have their children included in school, and many who didn't win the fight. I've watched as so many kids went to segregated classrooms designed only for children with disabilities or significant needs.

The number of children with disabilities who actually get to go to school in general education classrooms with the rest of their same-age peers is painfully low in most states in the U.S. The laws may support educating children in the least-restrictive environments, but it is not always what districts are willing to accommodate. It is one of the many ways that people with disabilities continue to be marginalized today.

So as we walked into school with our amazing little five-year-old daughter with Down syndrome and greeted her new school, we were all very proud. Proud of our daughter, our family and of all that we've learned. We are lucky to be in a school district that welcomes her. And we are proud to be starting this journey we've prepared for for so long.

And I am learning to set aside my anxiousness and protectiveness and am learning to trust her to go forward into the world. It is hard and it is bittersweet. But I am so, so proud.

She is here.  And she is making waves.

Bittersweet Endings. Bright New Beginnings

Tomorrow is Cora's final day of preschool.

This simple fact has been causing my breath to catch in my chest for the past several days.  This little girl, this piece of my heart, has somehow gotten to this moment, and it feels sudden and shocking and bittersweet.

I was so terrified when she began school.  She was so tiny.



She didn't speak.  She was starting at a community cooperative preschool that expected kids to be able to use the bathroom independently, serve and clean up after themselves and negotiate a new, exciting and scary world.  She would be going outside to an enormous playground with adults watching from the sidelines, when all summer I had been one step behind, spotting her all the way.

She had only started walking a few months before.  She hadn't begun to potty train.  She could sign fairly proficiently, yet nobody at her new school knew sign language. Her new teacher had no experience with children with intellectual disabilities. There were so many worries to add to my list.

Yet look how far she has come. 

Today, when I dropped her off at school, a crowd of four boys started yelling from the playground and running toward us, yelling "Cora's here!"  As the kids walked in a line, hopping into the building, I witnessed a small skirmish between two young boys. One of them bitterly responded that the other boy wasn't his friend, to which the other child said, "Yeah, well I love Cora."  "No, I love Cora!" came the counter-attack.

After Cora gave me a final hug goodbye, I walked away, trying not to let the other parents see me holding back my tears.

So yes this week feels awfully bittersweet.

Don't get me wrong. We are so excited for next year.  We are thrilled that Cora will be going to her neighborhood school alongside peers of all abilities in the general education classroom.  We are delighted that the kindergarten teacher that attended her IEP meeting specifically requested that Cora be in her classroom, and called me on my phone a couple weeks ago to tell me that she was excited that Cora would get to be in her classroom and also in her Early Kindergarten Transition program for a few weeks this summer.  We are excited and terrified.  And we are so so hopeful.  For we know that this is one more step in Cora's process of learning to navigate this world on her own two feet. Yes, she will have a lot of help.  Help from us, from her teachers and therapists, from her friends and family.

But it is she that is leading this path.

It is she that is sharing her soul and her joy, and her marvelous and uncanny ability to get and give so much love.  She is the one who shines, who surprises people and who makes connections wherever she goes.  It is her path.  And we are here to follow her and support her as she goes.

As the school year has been winding up, I've found myself getting frustrated with the work involved and eager to leave this phase behind.  But now I am seeing what we are leaving and looking at it through new and sentimental eyes. And I'm thankful for these moments, when I'm given the chance to have this clarity to appreciate just how important an experience this has been.  Cora has community. Cora has friends. Cora has adults and children who care about her and want to see her do well and be happy.

Cora has made a mark, as we always knew she would.

And so we will leave this phase behind, acknowledging the marks she's leaving behind her and looking forward to the many yet to come.

Day 23- Kindergarten and Inclusion

"Awareness is the first step. Acceptance is the next. Practicing active inclusion, as an organic, messy, trial and error, imperfect journey is the work. When it's done with full knowledge that it will be a forever process and require vigilant practice, a type of omnipresent commitment to valuing and inviting the full personhood of each participant, we have arrived somewhere. When that is realized, we have not only achieved something, we have become better by doing so." 
- Heather Kamia

These are words that a friend of mine recently shared.  And they are resonating with me so much right now.

We are currently in the process of gearing up for Cora to begin kindergarten next fall. This time that I've been both fearing and looking forward to since Cora's birth is actually going to be here very soon.

I am very lucky to live in a place with vast and incredible resources for families like ours who are embarking on this process with the goal of ensuring our children an inclusive education. From Cora's very early days, I began attending meetings and trainings about special education process in our educational system. Before I even knew what any of the acronyms meant, (IEP, IFSP, IDEA, FAPE, LRE, UDL, ECSE) I held my small nursing baby in my arms, as I listened to parents and lawyers speak in what sounded like a foreign language and discuss resources that seemed so complicated and so alien.

Our local organization, The Northwest Down Syndrome Association, holds a 9 month-long training seminar for families whose children with intellectual disabilities are entering kindergarten the following fall..  I have been waiting for our turn to participate in the Kindergarten Inclusion Cohort for the last four years and now I am finally here. I can't tell you how excited I am to take in the information that has been thoughtfully and meticulously prepared over the last six years. Or how inspiring it feels to sit in a room with other parents who have similar goals for their children as we hear the advice and words of families who have done all this before us.

I know how important it is for me to be educated in Cora's rights. How important it is for me to represent Cora in the meetings we will soon have to discuss and decide her educational future.  How crucial it is for me to be her advocate and make sure that she will have the opportunities to learn and grow as part of her community along with her peers of all abilities. I know that her placement, her documented goals and legally-mandated supports are going to be critical in setting the tone for the start of her school years and in turn, the rest of her life.

And I also know that it is just the beginning.  We've been practicing for years now just by being her parents. We've been practicing by being a part of our community. We've been practicing in our wonderful preschool and with her doctors and therapists. And now it's time to pull together what we've learned as we broach this next step. A step that will continue to consist of lots of practice. I know that her IEP won't be able to write her experiences, and that many of her strengths and challenges are still unknown.  And I know that in this next phase there will be many rewards and many more struggles, just as there are right now.

I am trying to gear up for it as best as I can, knowing that it will be an ongoing process that will never end, as long as I am her parent and her advocate. And that I intend to be.

For more information about the goals of the Kindergarten Inclusion Cohort, and to see a wonderful documentary on the importance of inclusion, take the time to watch this video by the Northwest Down Syndrome Association.