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.

Day 12: Growing Pains

Last week we experienced a first.  A painful first.  A first that I knew we would one day see, but that I was hoping would be far in the future, or maybe, just maybe, in a perfect world, never happen.

Ah, but the world is never perfect.

At school with Cora while parent teaching in her classroom, I sat eating snack with a group of four-year-olds, when Cora asked for more bagel.  What she actually said was, "Dut, dut, dut... More bagel, please!"  She often uses this little repetitive sound when starting a phrase. Her speech therapist thinks it's partly habit and partly her mind and body trying to get things out too quickly. It's actually been really exciting because recently her speech at school has exploded. Whereas before she was shy about speaking, now she seems to want to talk to everyone. This is huge.  But it also means that more kids are actually hearing her talk, and realizing that her speech sounds different and can be hard to understand. Suddenly their quiet friend Cora, who as I've been told by several kids on multiple occasions, "doesn't really talk," is now talking, but in a new and maybe surprising way.

Immediately after Cora's request for bagel, one of her newer classmates imitated her speech, then proceeded to exclaim, "She sounds like a baby," and exploded into peals of laughter, which were echoed by the rest of the table.  Everyone laughed except for Cora, who sat quietly eating her bagel. I tried to interject a variation of what I often say when a classmate asks me if Cora is a baby or comments on a difference, "Even though it takes her longer to learn to talk, that doesn't mean she is a baby." Of course, my effort was lost in the laughter, and I sat there stunned and sad as the kids' conversation went from how they talked when they were babies, to potty humor and babies and many variations of four-year-old hilarity.  At that point I really didn't know how to respond.

I was so upset, but felt it couldn't really be addressed at the moment, with several kids all following their own tangents of silliness at that point. And I didn't feel equipped to handle it neutrally, since the feelings that had been hurt were mine.

I managed to get through the rest of the school day and brought up the incident at the daily debrief with the teacher and the other parent teachers. Coincidentally, Cora's teacher has just been reading My Friend Isabelle, (a book about two young friends, one of whom has Ds) the week before, and was in the process of helping the kids compile books on their individual talents and their struggles.  This lesson on appreciating and recognizing differences and similarities among peers had been actively going on. We ended our debrief conversation with a couple more ideas.

But it just didn't feel settled to me.  I went home and cried off and on through the afternoon as Cora and Ruby played together.  That night, I wrote more about my concerns to her teacher: concerns that the uproarious reaction it produced could lead to more of the same types of comments, concerns that even if Cora may not have been hurt by it at the moment that that could change at any time, and concerns that jokes of that kind could instill a climate where she is seen as "other" and separate from the other kids.

So we talked about solutions.  And honestly, there have been wonderful ideas that are being implemented. Her teacher is sharing social stories with several relevant messages. Parents have been emailed with ideas about how to talk to their children.  I have written suggestions on how to talk to kids about Cora and about Down syndrome, specifically.  Last year Down syndrome was never mentioned to the kids. It didn't seem necessary. The kids accepted the simple response that "She is not a baby, she is three like you, and she just takes longer to learn how to do some things."  That response was enough.  But it seems like now it is perhaps not enough. Now they want to know why, and what, and talking about Down syndrome seems like it should be part of that.  We are not ashamed of Down syndrome or afraid of the questions.  Cora knows she has Down syndrome. We are afraid of the laughter, the hurt feelings, and the making fun.  I am afraid of the potential for this safe and beloved space to become somewhere our family doesn't feel comfortable.

I am really hoping that won't happen.  For now it's being handled well, largely thanks to Cora's incredible, creative and nurturing teacher, and to the families in our school. Yes, there have been a couple of hiccups and some more painful comments, which shows me that addressing it now is important. But we are moving forward and using the opportunity to educate classmates and parents alike, and hopefully, to encourage more appreciation of differences for all involved.

There is no doubt that it has been painful for me. I've been solemn and a little sad. I don't love the role of the squeaky wheel, but I know how important it is for me to advocate for Cora to belong. And I know that out of the hurt there is a real possibility for so much growth.

How to Know?

Parents of young children with Ds these days are likely to hear just how much better the opportunities, expectations, and quality of life are for their children, as opposed to even 10 or 20 years ago.

This is attributed to better medical care, Early Intervention services, and largely, in my view, to inclusion.

Being counted in as a member of society is critical.  Being a student in a classroom with other typically-developing peers, participating in community events, being seen and heard... all these factors help to raise expectations for our children.  And our children are rising to meet many of these expectations all the time.

But like other parents, I often find myself wondering just how much to push and just how much to expect.  There is such a push to prepare for school, to make sure our children are in age-appropriate typical classroom settings.

I am starting to look at preschools.  I know she won't start for another year, but it suddenly feels like it'll be here before we know it.  Her Early Intervention team feels that she won't benefit much from the school district's special education preschool and that we should start looking for a typical preschool classroom for her.  The daunting prospect of putting her in school is already giving me butterflies in my stomach.

And the whole thing has gotten me thinking...

I'm looking at taking her back to the library story time events, since her naps are finally shifting enough to permit this.  And I wonder if I should take her to the 2-year old class or the 1 year-old class.  She just turned 2.  She's small.  She doesn't really talk.  She doesn't walk.  Heck, the last time we were in the 1-year old class (about a year ago), she was one of the very few non-walkers and the 1 year olds were doing some pretty impressive things (like following instructions and participating in activities.) Thinking of what the expectations for the big 2-year olds makes me nervous.  Would she be ready?

I guess the question I've been asking myself is whether I want to constantly push her beyond where she is developmentally and expect her to be with her same-age peers.

If we push her so much will there be room for her to be where she is?   

I want to value where she is now.  My perfect moments now are when I am on the floor with Cora, delighting in the things that she finds hilarious, watching her interact with her surroundings, seeing the sparkle in her eye as she discovers something new.  Sometimes I find myself losing sight of that beauty when I am too focused on her next steps.  I want to give us both time to enjoy where she is now, happy to move forward when she is ready.

If I am constantly looking to push her, does that mean that I am not accepting of where she is?  Does that mean that I don't think that where she is is good enough?  

Not long ago while playing with blocks she'd toss them around, maybe halfheartedly trying to stack one or two before knocking them over.  And I would wonder whether I should push her harder, knowing that one day soon she will be measured by her whether she can stack blocks.

But today I watched her meticulously try to stack her blocks for almost half an hour.  For the first time, she really tried.  She hasn't mastered the interlocking pieces quite yet, so she just tried balancing them on top of one another.  And then the little smartie tried some problem solving: she pushed them over to the couch so her tower could lean against it, allowing her to stack a little higher.  I looked on with such pride.  I felt such accomplishment for her, even though she hadn't quite mastered the skill.  And I realized that I really just needed to wait for her to be ready.

I don't know what it is that makes her ready.  Somehow turning 2 has been a bit of a turning point for her.  She is eating more, nursing less, self-feeding with utensils more easily, and suddenly willing to drink from a cup.  She finally seems interested in moving her body.  These steps that I have been worriedly waiting for her to take are now happening before my eyes.  I don't know why she is now ready for them, but she is.

So I will keep questioning myself I'm sure, hoping that I can make good choices.  I'll keep watching her, keep playing with her, and keep providing her opportunities to learn.  I will try to step back and let her try, even though I want to scoop her up and make everything easier.  I will continue to work on being patient, waiting for her to show me what makes her shine.