Ode to Kinderfrogs

Ode to Kinderfrogs

Some context…the Kinderfrogs KTPA Fundraiser – 2016

I have a little bit of a crush.  Actually, it’s a bit more than just a crush.  Back in the summer of 2013, I fell in love.  I was head over heels for a little newborn baby named Everett Michael, but as a new mama with a new baby, with a new diagnosis, I was very worried about his future.  And then, I fell in love again.  But this time I fell in love with a huge group of people – the Kinderfrogs community.  At first, I fell in love with the director (in case you didn’t know, Marilyn, lol!).  Then I fell in love with the faculty and staff. And shortly after that, I fell in love with every kid enrolled at Kinderfrogs and their families.  I guess it’s safe to say, by virtue of the introductory language in this blog post, that I have a deep and unyielding love for my child’s preschool and everyone involved in shaping that preschool into what it is today.  In fact, this love is so pure that when asked to give a speech about “What Kinderfrogs Means to Me” last spring….I gushed.  So, since my second-born began his first day in the Toddler class today (Everett is now in the Pre-K class…he big boy), I feel compelled to profess my unending and undying love for Kinderfrogs in today’s blog post.  The following is the speech I delivered last year at the KTPA Fundraiser (2016), where parents, faculty, and staff hosted an annual event that raised monies for Kinderfrogs!  A great deal of the money we raised provided instructional resources and scholarships for our kiddos with DS. So, there is a “call to action” at the end of this speech/blog entry.  If you are so inclined to give, I’ve included a link at the end.  And if you are interested in this year’s fundrasier, the above graphic is our 2017 save-the-date!

Clearly my love for Kinderfrogs is deep and involved, so this is a long post…but well worth the read in my opinion.  The speech is verbatim with a few edits that I’ve included in brackets.  Enjoy!

What Kinderfrogs Means to Me

This is the second time I’ve been asked to speak at a Kinderfrogs event and address what Kinderfrogs means to me personally, and what it means to my family. The last time I spoke about this topic, I shared a very personal narrative about Everett’s birth story and postnatal diagnosis. I’ll touch on that story a bit today as well, but I think today is the perfect occasion to speak about another moment that has punctuated my history with the Kinderfrogs organization – our first day at Kinderfrogs. And by “our,” I mean, my first day, Vic’s first day, AND Everett’s first day. Let me provide a little background first.

Our son, Everett, was born on Memorial Day, Monday, May 27th, 2013. And he is a true “Monday’s child” — fair of face. Throughout my entire pregnancy, I had no clue Everett was packin’ an extra chromosome. There were no early markers or signs detected in the few ultrasounds we were privy to. And the early prenatal testing we opted to do resulted in a false negative. So when we learned there was a suspicion of Down syndrome, moments after Everett was born, the news hit us like a freight train. I often tell people that a line was drawn in the sand that morning. There’s me before Everett was born, and there’s me now. I’m a fairly articulate, descriptive person but even I cannot even begin to explain the pain and darkness associated with finding out your first and only child has a permanent, irreversible, genetic condition, that will make him markedly different from his peers….moments after he enters this world. It’s a darkness that is self-imposed to a certain degree because there are so many unanswered questions in those crucial moments after receiving a postnatal diagnosis. But I think it’s also very easy to be nudged into that dark place, as many health care professionals don’t seem to know how to ethically or appropriately handle a postnatal diagnosis. The physician who delivered Everett was very compassionate as she delivered the news to us, but I distinctly recall the L&D nurse saying things like “you probably shouldn’t even try to breastfeed him, he won’t be able to” and suggesting that I chose the name Everett because I was “saving my favorite name for my next baby.” And shortly after that, I noticed nurses, specialists and doctors referring to my baby as a “Downs baby.” And of course, I was labeled the mom of a “Downs baby.” And if all of that that weren’t enough, on the day we were discharged a special “social worker” paid me a visit. She had a very downtrodden demeanor and kept asking me questions like “How are you going to cope with this after you leave?” Because, you know, my baby and Down syndrome are so awful, that I need a mental health professional to check on me and ask me a battery of psychological questions before I enter the “real world.”

I personally found these reactions to be highly unprofessional, insensitive and inappropriate. But these reactions didn’t end in there. Victor and I couldn’t wait to get out of that darn hospital, but when we finally got home and settled in, we realized the inevitable – How were we going to break this news to the rest of the world? And if health care professionals, people trained to deal with and deliver tough news, reacted the way they did…how was everyone else going to react? I told a few people in person and experienced enough “I’m sorry hugs” and pained looks of concern to cease doing that. So I then moved to telling a few friends and acquaintances via email. I was met with statements like, “I could tell by the pictures you posted on Facebook,” “God gives special children to special parents,” “Maybe he’ll be high-functioning” and a few comparisons between “Downs” children and “normal” children. So the healthcare system isn’t unique when they usher you into that dark place after your child is born with something different. Society wants you to go there too. And it took me a really long time to move past the bitterness, and begin to see it all in a different light. The first step in that journey occurred on Monday, June 24th, 2013. That was the day our family of three visited Kinderfrogs for the first time.

I could stand up here and tell you that walking into Kinderfrogs that day with my four-week-old baby and a fresh diagnosis of Down syndrome, was the easiest thing I’ve ever done….but that would be a lie. I was in a bad place that day. I was probably in that dark place the world wanted me to be in, dealing with the “Downs” label, the reactions, the questions…and all that came with having a newborn, especially a newborn diagnosed with DS. Specialist after specialist, doctor after doctor, insensitive remark after insensitive remark….and a constant, nagging worry and fear for my new baby. But I got up that morning, and like any good mom, put on my big girl attire and pasted a smile on my face. That smile didn’t last long, though. I remember Marilyn [the director of Kinderfrogs] taking us into her office, gushing over Everett, and then asking us how we found out he had T21. I don’t remember exactly what I said, but I know I blubbered like a broken basket case sitting across from her desk. I’m sure I wasn’t the first blubbering [mama] to break down in her office, but it felt like it in that moment. Marilyn was so sweet, though, and kept a stiff upper lip as she bragged on Kinderfrogs, its history, and its accomplishments. She then gave us a tour of the Toddler class, who happened to be having a dance party in the gym that morning. And I think that [was a key moment], where I finally stopped blubbering.

I remember walking into that gym, Everett in one of those little snap-in baby carriers, and seeing some things I never thought I’d see that day. First of all, many of you may not know this…but Miss Libby [the lead Toddler class teacher]…has some serious dance moves. And her dance moves involve some brute strength. Not only is she able to bust a hard-core move to some toddler-appropriate jams…but she can do so with a kiddo in each arm. Impressive…I know. Secondly, I’m not sure what I expected from the toddlers in that classroom, but given my state of mind, probably not much. But to my surprise, I recall a little girl named Greenlee, running…..not walking…..but running at a pretty fast rate across the gym. Grown people were having a hard time catching her. As a matter of fact, she was darting so fast from corner to corner…she appeared to be a tiny little flash of brunette pigtails. And I’ll never forget a little boy named Charlie, approaching me, Victor and baby Everett. He strolled right up to me, stretched his arms out, and gave me a huge hug. And wow…that hug was an emotional game-changer for me. Charlie then walked over to Victor and did the exact same thing….wrapped his arms around Victor’s legs and gave him a great big hug. I think he wanted to hug Everett too, but Everett was all bundled up and strapped into his baby carrier….so instead he began to sign the word “baby.” And as soon as he signed the word “baby” several other toddlers, toddled over to see what was going on. And of course, more hugs commenced, and the dance party seemed to take a pause as Miss Libby shielded baby Everett from all the groping, face-touching and attempted hugs. Before we left, I remember cracking one of my first real smiles and asking the teacher, “So, I’m guessing you get a lot of hugs in an average day?” I’m pretty sure she laughed and agreed…as she chased down another stray kiddo or two.

The last thing I recall from that day stands out vividly in my mind. It happened as our tour wrapped up on that hot summer morning. It was the last week of school at Kinderfrogs, which I now know is a week filled with festivities including, the ever-attractive petting zoo. As our tour wrapped up and we began to exit Kinderfrogs, I saw Marilyn out of the corner of my eye, overseeing the logistics of the petting zoo. Then I heard a ruckus and noticed the toddler class had been “released” into the petting zoo area. I saw Charlie again, running from animal to animal and petting each one in rapid succession, as though if he didn’t….he’d never pet another animal again. And as all of this was going on (and I’m observing it all), and we’re now approaching our parked vehicle….we happened to run into one of Victor’s old TCU friends who was jogging around campus. His friend hadn’t seen our new baby and leaned in to take a peak. And that’s when I heard Marilyn, shouting from the petting zoo….”And he’s beautiful, isn’t he? Just beautiful!!!” Apparently, Marilyn is capable of overseeing an entire preschool, a petting zoo filled with toddlers and various animals, and fielding comments from afar about a new baby who happens to have Down syndrome. Impressive….I know. I think that was a defining moment for me and our family. I think in that moment, with Marilyn shouting in the background, we all realized that in a world that wants to take you to a dark place about Down syndrome, there exists a little slice of heaven…filled with petting zoos, adorable, smart kids, and allies and advocates who don’t say insensitive things about our children with Down syndrome, but rather refer to them as “our friends.”

It’s also a place that gives our children a chance. I asked the parents, teachers, and staff of Kinderfrogs to talk about what Kinderfrogs means to them and overwhelmingly this was the response….it gives our kids a chance. A “chance” may not seem like a big deal to you, A photo of Everett at KinderFrogs that reads "Ode to Kinderfrogs" and the url link www.mamability.combut in a world that wants to measure every minute behavior and action our children exhibit, and then tell us what they “can’t do”…a world that wants to label our children, and we all know that labels come with limits….a world that wants to take us by the hand and go to that dark place filled with question marks….a chance at happiness, independence, fulfillment, and as one teacher at Kinderfrogs phrased it, a chance to “nourish our spirits,” means a great deal to all of us in the Kinderfrogs community. Kinderfrogs doesn’t offer a “chance” exclusively to our children with DS, however. Again, it is light-filled space, that offers anyone who is willing to walk through those glass doors a “chance” to be something better. Undoubtedly, the model of education that Kinderfrogs adopts offers opportunities or “chances” for growth and change to those so moved to accept it, including student volunteers, staff members, teachers, the typical peers and siblings of our children, Starpoint students, parents, and even a grandparent or two. You see, Kinderfrogs touches the lives of so many and directly impacts the development of our children, and the development of the “developed.” Speaking of grandparents, my mother [Everett’s grandmother] is currently a diagnostician for Cleburne ISD. She cut her teeth as a diag working with pre-K children enrolled at McCall Elementary in Aledo ISD for seven years. At that time, she frequently worked with children with Down syndrome, many of whom came from Kinderfrogs. She is a genius, I love her very much, and she is the main reason why Everett is currently enrolled at Kinderferogs. This past weekend, I asked her one simple question…”Mom, what does Kinderfrogs mean to you?” Her response…

What Kinderfrogs means to me:

Professionally, I came to appreciate and respect Kinderfrogs in September, 2007, when I first became aware of its existence. I had taken my first job as an Educational Diagnostician in Aledo ISD and the difference I saw firsthand between the students with Down Syndrome who came to us from Kinderfrogs, as opposed to those who had attended other schools, was absolutely astounding. I was impressed not just at the students’ abilities, but also at the level of support they received. Marilyn Tolbert attended ARD meetings to help with the adjustment to public school, and each student arrived with a detailed notebook describing that student’s individual strengths and weaknesses, likes and dislikes, abilities, and personality. Those notebooks helped me help the teachers develop appropriate, individualized programs. Adjustment to public school for these students was a breeze.

Personally, I came to deeply love Kinderfrogs on May 27, 2013, when my precious grandson was diagnosed with Down Syndrome at birth. From minute one, once medical issues were ruled out, I had a peace about Everett and his future. That peace was largely due to my knowledge of Kinderfrogs. What a blessing that my grandson has access to this rare gem – this research-based facility with its amazing staff. Kinderfrogs was an answer to a prayer I had never even uttered.

I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

I’m sure she’s not the only grandparent that feels that way. I’m certain that there are many others in our audience today, who are grateful to see their children, grandchildren and loved ones benefit from the Kinderfrogs environment where rigor, compassion and “acceptance” provide the foundation for success for so many constituents: parents, grandparents, teachers, staff, students, children with Down syndrome, typically developing children and children with other developmental delays. I could keep going….Kinderfrogs touches the lives of so many people. And on this final note, I’d like to add, the impact that Kinderfrogs has on this large community comes with a price tag. The therapies that our children need and the resources that staff and teachers rely on to provide these therapies and a high-impact learning environment…are not free. So as you enjoy the remainder of the evening, please reflect on these stories and please know, every dollar spend on live auction items, silent auction items, chance tickets, grab bags, etc. gives our children, our families, and those affiliated with the Kinderfrogs community, what everyone deserves….a simple chance. Thank you and enjoy the rest of the evening’s events.

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