You Won’t Read This Story in the News: A Tale of Kindergarten Inclusion

Unless you’re a hermit on a mountain somewhere, cut off from all news, you might be getting the impression that the world could soon end, or will for certain end (possibly Tuesday), or maybe even has already ended. I don’t need to give you the reasons for this impression. Any newspaper does. The stories daily paint a picture of a world in which nothing works as it should and few people are any good.

I’m here to say that there’s a very small corner of this world where things are working precisely as they should. This is a story no reporter is going to tell you, especially not this weekend. But my five-year-old daughter, who has multiple disabilities, is fully included and thriving in a typical kindergarten classroom. And it’s beautiful. And it is working just as it should.

Half the size of her peers, wearing a micro-backpack that can’t fit a folder but covers her entire back, Fiona walks into the kindergarten classroom and, with help, hangs her coat on her hook. She sits with her classmates in a circle on the carpet. She orders her lunch as they do, indicating via iPad or her limited speech that she (usually) wants a ham sandwich.

She is, in many ways, very unlike the rest of her classmates, because she can’t form most consonants and she uses an iPad to communicate and she usually “speaks” in single (often unintelligible) words and she doesn’t yet write letters and she takes longer to process questions and she needs support walking down the steps and she hasn’t yet learned to run, and on and on and on. Yet there she is, learning alongside her peers.

The first day Fiona walked into her kindergarten classroom, I wanted to cry. And not just for the same reasons any mother of a new kindergartener wants to cry, which is usually because Oh my God, she’s getting so big, and Now I am entrusting my precious child with others so please Lord, let them be good and trustworthy folks. Yes, I felt those things. But I also felt the weight of America’s history.

fiona-kindergarten

Fiona, standing in our yard, holding in one hand a piece of paper that says “Kindergarten” against her belly, and her blue-encased iPad mini in the other. She’s wearing pink converse, navy shorts, and a lavender T-shirt with, and a pink backpack, and a straw bolero hat. She’s looking up at the sky, smiling.

According to the U.S. Department of Education, in 1970, only one in five children with disabilities was enrolled in public schools. Pennsylvania, the state in which I was born and raised, once declared that it did not have to educate certain children. Certain kids were seen not to “profit” from public school. Certain kids were called “ineligible.” Among these “ineligibles” was any kid who didn’t reach a “mental age” of five by first grade.

Put another way, in the not-too-distant past, people like Fiona were legally denied an education.

But the Pennsylvania Association for Retarded Citizens (PARC) sued the state, citing the 14th Amendment of the Constitution. And this is where I kind-of want to weep, maybe because it’s election week and maybe because our country has been through hell, but also because at the heart of our nation are some gorgeous, gorgeous promises. Like this clause from the 14th Amendment:

No state shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any state deprive any person of life, liberty, or property….

PARC argued that the Pennsylvania state law robbed the so-called “ineligible” children of their rights. PARC won, and Congress passed national legislation with similar guarantees. My daughter’s (and any citizen’s) right to a public education was officially granted in 1975, with the Education for All Handicapped Children Act. This was the first major legislation passed to ensure that kids with any disabilities—physical, intellectual, or otherwise—could go to school, that they had a right to a free, appropriate, public education. (Today, that right is protected under the Individuals with Disabilities Education Act, or IDEA, which was passed in 1997 and amended in 2004.)

So imagine my tender, hopeful heart as I watched my girl, just thirty-four inches tall, just twenty-one pounds big, first strutting through the door of her kindergarten classroom. Her body is not the norm, and once upon a time, she would have been barred from entering. My husband and I would have had to pony up our own funds to educate our kid. Instead, at the door of our small public school in Vermont, Fiona heard the words, “Good morning,” and “Hello.” Greetings poured from the principal and the kindergarten teacher and the speech therapist. The speech therapist knelt down to Fiona’s level, held an iPad on her knee, and hit a button on it. “Hello,” the iPad said, just like my daughter’s.

I was beyond moved. This was not just an open door. This was a bona fide welcome committee, determined to make “mainstream” kindergarten work for my girl.

Then the principal looked at me with a kind and concerned smile. “How is Mom doing?” she asked.

“Don’t ask me that,” I said gently as pools of water blurred half my line of vision. I wiped my eyes. I was sending my kid simultaneously into great promise, and great risk.

Although the major legal barriers to education have been removed for kids with disabilities, there are still plenty of cultural, logistical, attitudinal, and financial barriers. Recent reports from Texas confirm that kids with disabilities are regularly denied entitled services.

And personal stories abound. Take Amy Silverman, author of My Heart Can’t Even Believe It. She describes her rocky experiences transitioning her daughter, who has Down syndrome, into a public kindergarten. Silverman felt the most appropriate placement for her daughter was full inclusion at her local school, like any other kid in the neighborhood.

“Fine,” the principal said in reply. “But if Sophie wants to go to a typical school, she’ll have to act like a typical kid.”

This sentence was illegal, of course, then (in the late 2000’s) and now. But this sentence is the modern-day version of Pennsylvania’s nasty, exclusionist law. Rather than creating structures that are accessible for diverse bodies, our institutions have historically demanded that those bodies comply or get out. Our laws change; our culture changes more slowly. The ancestral shadow of a legally barred school building is still with us. We see it when a blind boy has his cane confiscated by school officials. We see it when a teacher’s aide gets caught on video shoving an autistic boy with such force that he falls over. The message is: If you do not fit into the norms, you should not walk inside these walls. 

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Fiona, wearing a paper hat that reads “My First Day of Kindergarten.”

There’s no possible way my daughter, Fiona, can “act like a typical kid,” as Silverman’s horrible principal demanded. One of the great liberations of mothering Fiona is that she’s so far outside the so-called “norm” that there’s no point in pretending. I love that about her. But that also means that my girl must rely on people doing their jobs. On special education working as the law intended. She must rely on earnest, hardworking educators and therapists who have high expectations and provide accommodations so that the classroom in which they teach is a place where she can thrive. It’s a tall order. It shouldn’t be, but it is.

And by God, my girl has been given all of this. On day one, Fiona’s elementary school had an assembly. Parents were invited. I sat in the back of a gymnasium and listened to every school professional introduce themselves. When it was Fiona’s speech therapist’s turn, she said hello three ways: first with her mouth, second with American Sign Language, and third, with the same app Fiona uses on her talker. Then she said she’d soon visit every classroom to explain these different modes of communication. In other words, on day one, Fiona’s school began teaching every kid in the building Fiona’s language. This, this is a true welcome. This is a model of “inclusion.” This is a gesture that says, “Not only do I allow you your differences—your cane, your talker, your ASL—but among the entire community, I foster understanding of and facility with them.”

But the good news doesn’t stop there. Not only does Fiona’s speech therapist have a talker (loaded with Fiona’s identical vocabulary), and not only does Fiona’s aide have the same, but so does the class.

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The main screen of Fiona’s communication app. 120 icons are spread across a grid.

Her small classroom of kindergarteners have one extra talker among them so that the kids can use it to communicate—with Fiona and with each other. And this isn’t just a kind gesture in inclusion. It has become a useful literacy tool. In collaboration with the speech therapist, the kindergarten teacher decided to use some of the “core vocabulary” on Fiona’s talker—those 119 frequently used and powerful words—as the targeted “sight words” for her class. Words like “Like” and “Can.” (FYI: Fiona uses an app called Speak For Yourself.) Since the talker not only says those words when a kid touches them, but also features the word’s spelling, the talker can support each child in their literacy.

I could go on, citing all the awesome ways that Fiona’s small public school has helped her thrive, but I’ll leave the above as representative examples. Had Fiona encountered a principal like Amy Silverman’s, a person who insisted a child with a chromosomal syndrome “act like a typical kid” if she wants to “go to a typical school,” then Fiona would have been put in some self-contained classroom somewhere. The expectations for that classroom would have been different, probably far lower, than in Fiona’s typical kindergarten class. The students would probably not be working on sight-reading at age 5. But instead, my girl is expected to learn to sight read. And consequently just today, Fiona got three out of three sight words correct.

Today, just a few days away from America’s election day, there’s a pervasive, despairing sentiment that nothing works. That we live in a broken country. That the government does not serve its citizens, that it’s just a multi-headed beast fuming toxic snot-water in people’s ways.

But I want to say this: in one small pocket of one cold section of this one big country, something is working. A handful of teachers are doing a fantastic job. A kid who would have once been deemed “ineligible” for school, she is learning to read. I raise a glass to that. I even hum the National Anthem to that.

 

 

 

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34 thoughts on “You Won’t Read This Story in the News: A Tale of Kindergarten Inclusion

  1. As a retired kindergarten teacher who began my career before children with special abilities were included in “typical” classrooms, Fiona’s school experience makes me feel so proud of the educators in her building. So many beautiful and important situations occur in our country’s public schools….and most people have no idea the impact that exceptional teachers like your daughter’s have on lives! May you always be blessed with educators who see value in every single child in their care. Fiona’s classmates will also grow immensely from learning along side her. You are courageous parents! I look forward to your wise perspectives in your beautifully written blogs.

  2. My 5 year old daughter, Skylar, is EXTREMELY similar to Fiona… I see “us” EVERY TIME I read your post. My smiling, happy, full of life daughter is “undiagnosed” with a chromosome abnormality that we have not been able to find another match… no name. Our neighbors daughter and her sister say she has Skylar Syndrome… 🙂
    I cannot tell you how refreshing it is to read your words that are always EXACTLY how I feel at almost the EXACT same time about different chapters of our lives, especially when it feels like we do not have a “support group” that we belong to. Your blog is the closest I have found to relate to.

    And … we had her IEP meeting to prove that she belongs in a general education classroom yesterday. We were “given” our request for that…. However, we are still not able to send her to the school we are zoned to be in… with her sister that is in 3rd grade, neighbors… Instead, she will still have to remain at a school 25 minutes away from our home school. I was told our home school does not have the resources and funding to provide the modifications and supports that she needs. Feels like being CRUSHED!!! So, I had to explain last night after the meeting to her and her sister that mama failed…
    Sob story over…
    Wish me luck! We have ANOTHER IEP meeting December 15! It is my understanding from the books about special education law, advocacy… case studies… that this is not legally right. Now, I’ve got to stand up for my “tiny” little girl that has fought and worked hard her entire life to come as far as she has, without losing all emotional control!
    Thank you again for sharing your story. They always come at the times I need them most. And please continue to share! This post gives me HOPE… And it makes me want to be your neighbor!

    • Go Mama! You are right, funding & resources come to the district, not the school! AND they flow to the students NOT buildings! Impress upon them that the natural supports your daughter will rely upon long after she leaves school are in her home school. Also, what experiences are they denying all the other students when they don’t get to participate in an inclusive community? What kind of future leaders, doctors, bankers, Moms & Dads are they creating? Be strong!

  3. The school where I went was one where the special needs kids got their own class room. That didn’t mean that the kids weren’t out doing other activities, though. I remember a girl with Down’s Syndrome who would come join us for marching band class, and she seemed to love it. If I recall correctly, she participated in the football halftime shows, though not the competitions. I grew close with her and her mother, at least as much as a semester of band allowed.
    Inclusionary schooling is, in my opinion, essential for everyone.

    • My elementary school had a program where 6th graders tutored the special needs kids. It was really fun. We created our own games that they could play, and it taught us to really see and focus on their strengths. That’s what we aimed for.

  4. This post makes me so happy. My friend has two kids (now adult) with a variety of disabilities, and she had to fight every, single step of the way for her kids to get the services they needed. It basically became Carolyn’s full-time job to fight for an aide to help her wheelchair-bound daughter with cerebral palsy and to keep her in regular classes because she is a very intelligent person. I’m so happy for YOU that Fiona is in an environment that WANTS her.

    My son is somewhere on the spectrum, and his school (private) has bought “wiggle seats” (inflatable yoga pads for their chair) for ALL the classrooms because they acknowledge that some students learn better when they can move their bodies, and ALL the students have permission to use them. They love him for who he is and appreciate his differences because he is funny and charming and so innocent.

    What makes me so sad is that experiences like Fiona’s SHOULDN’T be news or twisted to be “inspiration porn.” It should be how the entire educational system works. Rant over because I am preaching to the choir.

  5. I am so glad Gideon gets to be in kindergarten with Fiona!! Loved this post and look forward to getting to know you guys.

  6. My Cael has always adored Fiona. We’re so happy they are in the same class again! She is a beautiful young lady and we look forward to continuing to see her thrive. Inclusion is a blessing not only for her but for all the students. Teaching understanding and acceptance, it helps remove the stigma around being different.

    As we mature we struggle with identity and acceptance from peers. My handsome stepson (who happens to be autistic) is struggling with this. Even 10 years ago when he started school it was so different. Autism was a dirty word that he didn’t understand until we talked about it again when he was 13. Even family members couldn’t handle “labeling him THAT”.

    There will be lots of times that feel like an uphill battle. But the most important thing I can say is that when I ask Cael about Fiona he says “I like her, she’s my friend!” You’re doing great and so is she 🙂

  7. Very awesome to read this news about your fabulous girl. Here in PA, my 13 year old is in 7th grade and has been fully-included since pre-school. She has Angleman Syndrome, and needs across-the-board support for everything, and has daily seizures. Yet we have made it work! I cannot IMAGINE segregating her! Yes, times they have changed and Fiona and Eleanor are going to keep that change going!

  8. Beautifully said! Your gift along with Fiona’s, touches the hearts of many. Thanks for sharing your Gifts! God Bless America and our Children!

  9. Hi Heather:

    I am not one to post comments on websites, so I wanted to send a short email to let you know how moved I was by your blog. I have been reading it for some time, and this entry was truly heartwarming. I am so pleased for you, Fiona, and your family.

    Have a great Thanksgiving.

    Wendy Knudsen

  10. A truly heartwarming story that actually evokes heartache that it is reported as an exception rather than the rule even though it is written into legislation as a right. I hope other educators fight for this knowing their establishments can help foster this degree of acceptance everywhere.
    xxx Huge Hugs xxx

  11. Your blog is inspiring to read and gives me hope that we may still be able to find a better (supportive) place for my son to grow up. My son (3.5) also has a rare disorder, known as Angelman Syndrome, and we also live in VT, however have not been having the same experience you have described through many of your stories. I’m not sure if there is any way to contact you, but I would love to chat if there is.

  12. I want to hug her and you and the whole school! This is just the news we all need this morning.
    You may enjoy a new free program called Core First Learning (Launching December 2016 on Boardmaker Online) that supports core word learning in fun-to-read texts that will help her begin to identify and read core words in connected texts. It might be a fun next step for you guys. Either way, GO FIONA!!! GO LITTLE VERMONT PUBLIC SCHOOL! Thank you for sharing.

  13. This raises hope for all, not just in America but across the world. Inclusion is the correct way forward. I love the passion in your story and the smile i feel when you speak of her. 😇

  14. I am in tears. I am the parent of a 15-year-old special-needs daughter. In the state in which we used to live she was included as your beautiful daughter is. Where she is now, they had never heard of an Alpha Smart, which the school provided for her in Louisiana, or of any assistive technologies. They have no Adapted PE for her. She and all the other special-needs students are in the “resource” room all day long, isolated from the rest of the school. You give that beautiful Fiona lots and lots of hugs. I wish I could hug my little girl: I live in another state from her now and miss her terribly, every minute of every day. I love her so much. I wish she could be in a supportive, accepting school like Fiona has. God bless you and God bless sweet little Fiona.

  15. Thanks to the 1973 Rehabilitation Act, IDEA, the ADA and people like Fiona’s teachers that “small pocket” is much bigger than most of us realize. It’s right under our noses. We just need to look for it and advocate for it in order that we maintain it. As a Disability Advocate and a person with a disability, I find what you write so very inspiring and appreciate it so much and I wish and pray all the best for Fiona in her life. There are always times that seem impossible and hard to manage, but with a mother like you I’m sure she’ll do fine.

  16. It was a wonderful story that warms my heart to know that Fiona has just the same rights as any other child that needs to be educated . I am so happy for Fiona and her family. Despite all the negative comments about our country, our country
    Is the best place in the world to live now, and in
    The future. Beautiful story to know threre are still
    Dedicated and committed teachers who want the
    Very best for our children’s education.
    Paul Bombara, PhD
    Arlington Special Education Dept

  17. I hold in my heart the deepest wish that, following the results of the election, even should the country take steps backwards, Fiona never has to. She deserves only ever to keep moving forward from here.

  18. I’m curious how this works at older grades. We adopted our son when he was in 5th grade, and he’s now in 7th grade in a Life Skills Support setting. He has inclusion classes for 3 out of 7 periods per day (lunch, gym, art, health, computer literacy, etc), but his core classes like math, reading, social studies and science are in the life skills room. His verbal skills, math skills and language skills are all 4-6 grade levels below his peers, partly due to his intellectual disabilities, and partly due to his life history.

    I don’t know what benefit attending a pre-algebra class with other 7th graders would give him when he cannot yet multiply and divide, or how a 7th grade world history class would be helpful to him when he cannot yet understand what “a year” is, or name even one continent or country. In his life skills class, he is able to feel like he is gaining mastery of the topics he studies, whereas in a regular education setting he would need so much accommodation that he would constantly feel like the “special kid” and would know that he’s not at the same level as his peers.

    But clearly others feel differently, and I genuinely would be curious to hear positive experiences of people who have done complete inclusion (i.e. no special classrooms at any time, only supports in regular education classes) for middle and high schoolers with severe intellectual disabilities.

    • I have one perspective to share. I have found that EVERY minute children & young adults participate with peers make lasting changes not only for the child with special needs but for the peers. I once believed that inclusion was only about my daughter. I advocated strongly for full inclusion every year of elementary school, went to conferences and participated in task forces. As her years advanced & classes such as calculus & Literature were standards on most kids schedules, our daughter was taking “life skills” to learn how to collect recycles or grocery shop. My honorable efforts seemed to dissolve. Then the Key Club stepped in and advocated to fund raise for our daughter to receive a wish, at graduation she was recognized with a gold cord because her 3.7 GPA meant the same effort as any other kid in her class. Everyone stood & shouted praises when she crossed the stage. Now, she is 27 and not one week goes by without us running into someone who was touched by experiences shared with our daughter while she was in school. A nurse at a doctors office, the new elementary teacher, the barista that makes my coffee and even the new young mom in line at the grocery store, all of them have fond memories of sharing time with our daughter in school. Inclusion isn’t about our kids alone, it’s about creating a brighter, caring generation that believes everyone has a place and can contribute to make the whole stronger than the sum of its parts. Hope this helps.

      • What supports allowed your daughter to succeed in regular education? Once you had her removed from life skills, what did she do during literature or calculus class? Did they provide alternative materials and instruction during class, or modifications to homework? Was she able to do calculus and read Moby Dick with support?

        I don’t think my child would be winning friends and influencing people in positive ways in a mainstream setting without one-on-one coaching of every social interaction. He has mental health and behavioral challenges that tend to make peer interactions go sideways pretty quickly, and receives dual supports for intellectual disability and emotional disturbance.

      • Sorry, I was trying to say throughout elementary she received all her services in the gen Ed classroom, participated in the same content with modifications (when other kids did state reports, Alyssa did a picture report with the flag, flower and map). When she got to HS she DIDN’T take lit & calc but continued maintaining relationships through choir, PE, art. About half of her day was self contained/lifeskills. Because those connections were established the kids were natural supports for Alyssa when she was in GE settings.
        Alyssa can be disruptive to learning of others & she continued to need the accommodation of an aide that could redirect or relocate her when needed but because her peers knew her from years of interaction this was less than if she had not been included in her elementary years.
        Yes, modifications were required for all things. Instead of learning the spelling list in 3rd grade, she worked on matching letters & colors using the same list so peers could “study” with her. In many cases her accommodations provided support to typical peers who needed to have extra practice or see something in a different way. Mostly, having her included promoted kindness & understanding.

  19. That does sound like a great way to build community in younger grades so that she could keep those connections into the older years! Our son came into our lives from foster care in 5th grade, and had been in 12 schools by then. That kind of stability is the kind of thing that would have made so much of a difference for him in the younger grades, but by now it’s not something we can do over. 😦

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