Easily one of my favorite days of the year:
The Buddy Walk is this Saturday (yay!!), so we’re busy preparing for an awesome day with our Team Lina people. I also have beach vacation pictures to process and share from last week. But all of that can wait for a minute, because I want to talk about a word that’s on my mind this week: PROGRESS.
Lina’s kindergarten start had some bumps. Not surprisingly for her, they were mostly her pet behavior challenges of social aggression and noncompliance. These are the behaviors Lina falls back on when she feel overwhelmed or out of control. It seems to be her way of exerting control over her environment. As her classroom teacher pointed out recently, they are also pretty directly linked to her level of tiredness. These long days are a lot for any kindergartner, and she understandably runs out of juice for focused, structured activities as her energy drains. It’s easy to forget that even routine activities require extra effort for our girl.
Anyway, to make a long story short, I requested a formal process called a functional behavioral assessment (FBA). This is a process outlined in the 1997 reauthorization of the IDEA (Individuals with Disabilities Education Act), the federal law governing special education. This document provides great information for parents about FBAs.
Confession: I have spent more than a little time worrying about Lina’s behavior at school and how it will impact her ability to be successful there. How can she form real friendships if the kids are afraid of being pinched or kicked or having their hair pulled any time she comes near? How can she keep up academically if she won’t participate in school exercises and activities? Will her teachers be able to see past her behavior to understand how bright and capable she is? I realized over these past weeks that even while I believed and preached about our kids’ abilities to learn and succeed in inclusive classrooms, I had to wrestle the voice of doubt that threatened to shake my confidence in my own kid.
Fast forward to this Tuesday, when I met with Lina’s IEP team and the school’s behavior consultant to kick off the FBA process. As we talked about where Lina is and the behavior we’re needing to address with the FBA, I began to realize that the team was painting a picture of major progress over the past days and weeks. The social aggression has almost disappeared. Compliance is still a challenge, but Lina suddenly fully participated without hesitation in PE class this week, which has previously been a no-go. She has begun engaging during the daily social skills group. Her gen ed classroom teacher said she’s formed friendships with her classmates and plays happily with them on the playground. A picture began to emerge of a kid who has found her footing.
As I reflected on her progress, I knew the lesson was one I may be relearning throughout Lina’s life: Have patience and confidence. She can and will succeed.
The challenges haven’t all evaporated. I am hopeful the FBA process will help identify the key drivers for times Lina resists participation and help redirect that resistance so she can get the most from school. Once the FBA is completed, every person who works with Lina – teachers, aides, therapists – will receive student-specific training on the behavior intervention plan. The focus is on prevention and positive reinforcement, helping Lina find better ways to maintain a sense of control and communicate her needs and desires.
But whatever challenges remain, watching Lina fall in love with her new school and new friends and find her footing in the wider world – that’s the point. This is her growing and learning. It takes more time, effort and resources. It may not look like a typical kid’s process. But she will get there, in her own time and in her own way.
I was at GiGi’s Playhouse yesterday morning for the Busy Bodies group I co-lead. It’s a group for the very littlest ones with Down syndrome and their families. A mama with a darling baby girl was talking to us about her little one’s milestones, and I found myself sharing with her something someone told me when Lina was still very little: In the big picture, the fact that it took our kiddos longer to learn and meet their milestones won’t matter. Lina is six, and it’s irrelevant now that she didn’t walk until she was more than two-and-a-half. As an adult, it won’t matter a bit that she didn’t talk until she was at least three and took longer to potty train or do any of the other tasks she will be learning in the years ahead.
As parents of any child, we’re too often comparing our kids. How does my child stack up on smarts, athleticism, fine motor skills, reading ability, social skills? But that’s rarely constructive, and it’s especially hard on parents of kids with a learning difference or disability. That stuff isn’t going to matter all that much in the end. It’s a lot harder to measure and compare the skills that actually build long-term success. The key is that our kids are growing and learning and making steady PROGRESS. They are becoming, in their own ways and at their own pace. Remembering that requires patience, grace and faith, for ourselves and for our kids.
Today, as we’re nearing Thanksgiving season, I am thankful for progress – my kids’, and mine.
You know what made today’s kindergarten sneak-a-peek event especially jarring? Remembering going with Corin yesterday. Seriously. I cannot account for the time.
Lina was by turns overwhelmed and excited as she got her first real tour of her new school. Her favorite parts were the bus ride, trying out the play kitchens in the classrooms, discovering the stage in the cafeteria and the Scales Mustang cookie (because that girl never met a dessert she didn’t like). She didn’t much want to talk to anyone, though she did engage in a giggly round of under-the-table peek-a-boo with the little girl across from her. She didn’t much want me to take pictures. There was some finger sucking and a meltdown or two when she didn’t want to stick with the tour program, but overall, she did pretty well.
I’m not sure how I’d rank my own performance. Events like this can be tough, mostly because they throw into sharper relief the differences between Lina and her typically developing peers. There are things she can’t or won’t tell me, and I am left to guess. Does she really understand that she is going to this school next year? What does that mean to her? How does she feel about it? Old worries resurface. How will the other kids respond to her when she doesn’t behave quite like they expect? Will they be patient with her less-clear speech? Will they make the effort to include her in their play? Will she be left behind as they race along at their carefree pace? How will she respond to the greater academic challenges?
I don’t like admitting those fears. I want you to believe that I always see Lina’s strengths and never waiver in my faith that she will conquer every obstacle and prove wrong every doubt. But that’s not real life. I have my struggles with worry and fear. These changes will never not be scary. I will never not feel the ache of the extra challenges my youngest child faces.
But deep down, in the place where it matters, I remain confident in Lina’s ability to navigate this transition. I believe that God has walked with us every step of our path so far, and that He will go beside my girl as I send her into her elementary school experience. I have a tendency – passed down like a treasured heirloom through long generations of worriers – to get ahead of myself. I want to solve problems ten years out. But that’s not how God works, and it’s not a very effective way to live. Instead, our family is learning to take our path one step at a time. God has never failed to provide just what we need for today.
So today, our girl walked through the halls of a fantastic school, where she will have access to excellent teachers, therapists and resources. She connected with a little girl across the table. She discovered favorite books and toys. She found the stage. She ate every morsel of her cookie. It was a good day.
Today – 3.21 for three copies of the 21st chromosome – is World Down Syndrome Awareness Day. I love this day. Our family likes to wear mismatched socks to celebrate the differences that color our world. Friends and family send pictures of their crazy socks. My Facebook feed fills with celebrations and photos of kids and adults with that something extra. It is beautiful.
Jon and I kicked off the day by attending Lina’s kindergarten transition meeting at the school she’ll be attending in August. This was the first time we met the new team that will be taking over her therapies and support services as she leaves early childhood preschool and begins her elementary experience at our school of zone. It felt like a pretty big deal, which is why you could have found me at our local FedEx at 9:30 last night, having a one-page flyer printed.
If you’ve followed along these past three years, you know that Lina’s preschool experience has been phenomenal. She has attended four half-days a week in an early childhood blended classroom of peer models and students with special education needs. There are four adults in the room of about 12 students: either the occupational or speech therapist (each two days a week), a special education teacher and two aides. The kids receive a tremendous amount of individualized attention and support.
We are very lucky to live in a district that believes in inclusive education for students with disabilities. In fact, the elementary schools in our county don’t have self-contained special education classrooms. Lina will be pulled out for brief periods for special ed instruction in reading and math and small group speech therapy but will do the vast majority of her learning in a general education classroom. She will receive support from a paraprofessional who stays with the class full-time.
All of this is awesome. It’s why we moved to this district. It’s also overwhelming. This is a whole new world for our girl. The change from four half-days to five full days is big enough. But now, Lina will also be one kid in a class of at least 20, needing to keep up with generalized instruction, transitions to other parts of the school for specials (like art, music and P.E.), navigating the lunch room, the bigger playground… It’s a lot, and this mama’s heart contracts every time I think about it.
But, this is what we’ve been working towards for the past three years. This is the process of parenting, that gradual letting go, of sending our kids out into an ever broadening world. Lina’s current preschool educational team has spent long hours updating her evaluations, preparing her IEP (which prescribes her special ed goals and supports), communicating with the new team and ensuring the right supports will be in place. Jon and I have spent three different meetings over the past two weeks going over those goals, providing feedback, suggesting changes, developing a behavioral plan, helping the new team get to know our girl and her strengths and challenges. Months before she begins kindergarten, an entire village is pouring effort into providing everything Lina needs to learn. I get weepy when I think about the dedication of these teachers and staff, who are paid a fraction of what they deserve. Together, we and these remarkable teams are laying the foundation for Lina’s future. The dreams we have for her of college, meaningful employment, independent living: they start here.
So, on this 3.21, I am grateful, and yes, a little heartsore. My baby is growing up, but I know that’s the job. Sending her into the world is never going to not be scary, but I am moved yet again by the size and heart of our village. From friends and family who put on their crazy socks (literally and metaphorically) to the teachers and therapists who work day after day to equip her for success, Lina has an army at her back. That may be the greatest gift of all in this journey.
We couldn’t have asked for a nicer day for this year’s Buddy Walk. The morning fog cleared mid-day, the sun came out, and temperatures reached the unseasonably warm upper-70s. The event was held this year at Andrew Jackson’s Hermitage home just east of Nashville, and the setting was gorgeous as the fall leaves in Tennessee reach peak colors.
But the truth is that whatever the weather, the Buddy Walk is one of my favorite days of the year. I have written before about how much this day means to us and why. There is just no way to fully explain the experience of walking through a crowd of thousands of people who all share the joy of loving someone with Down syndrome and knowing that we are in this together. This is a group that can move mountains – and will.
Lina was thrilled this year to have a couple sweet classmates from school attend with their families. We are so grateful to all the friends and family who came out to be a part of the walk with us, and to every person who donated. The money raised through this event funds an entire year’s worth of programs for the Down Syndrome Association of Middle Tennessee, including critical education and advocacy work. Every donation, every person who comes out to walk is a part of making this community a better place for people with Down syndrome, and ultimately, for all of us. So thank you, thank you, Team Lina. You showed up, and it means the world.
A recent CBS news report on the near eradication of Down syndrome in Iceland has caused quite a stir in the Down syndrome community, for good reason. (Please, please, if you haven’t yet, watch the full segment before reading this or any other commentary.) I have thought about this story a lot over the past couple days.
First, I’d like to address the unfortunate backlash against CBS. Within hours of the story’s initial airing, several political figures posted sensationalized commentary accusing CBS of “celebrating” Iceland’s near-elimination of Down syndrome. I understand that mistrust of mainstream news media is at an all-time high, but it needs to be said: The CBS report did exactly what journalism is supposed to do, which is examine an important and complex issue as objectively as possible. CBS allowed people of various perspectives to present their views and experiences without judgement. Certainly, there is more I wish could have been said about the issue, but CBS did not take sides in its coverage. While we can all think of many examples of journalistic failures, I don’t believe this is one of them.
So, let’s agree to set aside the misplaced outrage. This piece was an important examination of a trend that has been growing across Europe. In Iceland, the rate of termination for pregnancies that test positive for Down syndrome is 100 percent; in many other European nations, it is nearly as high. This is information we need to know, and it needs to be the starting point for some soul searching and difficult conversation here in the U.S. Let’s focus on the actual issue at stake, which is: how do we as a society view and value people with Down syndrome?
This is a hard conversation for people in the Down syndrome community, because it is so intensely personal. When we hear that 100 percent of people in Iceland choose not to give birth to babies with Down syndrome, we hear them telling us that our children are not worthy of life. How can any parent not react to that? Of course it makes us angry and terribly sad. We feel the tremendous loss of the lives those children could have lived and the contributions they could have made to their families and country.
My mind also went to the two or three children who are born with Down syndrome each year in Iceland due to missed prenatal diagnoses, and what it must be like for them and their families. They will navigate their experiences without the support of a local network of other families like theirs. If Down syndrome has mostly disappeared, what type of public services will be available to support these kids’ development and independence as they grow? Who will pressure schools and other public and private organizations to make sure kids with Down syndrome are fully included with their peers?
The situation becomes self-perpetuating. With so few children with Down syndrome growing up in Iceland (and across Europe), the lack of visibility will foster further ignorance and fear. The few children who are born with Down syndrome will face shrinking opportunities. All of this makes it even harder for families to choose differently when presented with a prenatal diagnosis.
This is relevant to those of us in the U.S. because we have to grapple in our own society with the values we hold. Do we believe the lives of people with Down syndrome are worthwhile? Do we believe people with Down syndrome contribute to our society and are worthy of the medical care and supports they need? Do we believe in the innate value and dignity of every person, or do we believe that value is tied to ability and achievement?
I have always wondered what would happen if parents expecting typically developing children were faced with a scenario like the one parents of children with prenatal diagnoses face. What if early in their pregnancies, all families were met by a solemn-faced doctor informing them of all the risks and hardships their child could face and all the ways the parents’ lives would become more difficult? We often act as if the lack of a diagnosis is a guarantee of a “normal” life. The truth is far more complicated.
Most typical newborns are wrapped in an invisible cloak of infinite possibility. Parents dream of the wide-open potential futures for their tiny child. As time progresses, those possibilities by necessity narrow. There is loss along the way. We make choices for our children, and as they grow, they make choices for themselves. Circumstances shape reality. Messy uncertainty and complication is a fundamental part of the human experience. When we begin our path as parents, we take on the near certainty of heartache along the way. We do our best to protect, guide and shape our children and then hope and trust they will come out right in the end. We pray they find purpose and happiness. Through it all, love makes the times of pain more than worthwhile.
For parents of a child with Down syndrome, their precious newborn is missing the invisible cloak. At the moment of diagnosis, infinite possibilities suddenly contract. Those wide-open dreams, rather than narrowing gradually with time, are shattered in a moment. The loss is sudden and jarring. There is a grieving process. But the beauty of that experience is that as those parents hold their new child and watch that baby grow and learn and become, love heals the grief. Often, dreams we thought were broken are rebuilt. They may look different in their new form, but they are beautiful in their own right. New possibilities open, and new paths present themselves. And in the process, we find that while there will always be heartache in this process, there are other griefs we are spared. And always, always, love makes the times of pain more than worthwhile.
This is what I wish I could tell every frightened mother sitting in an office across from a solemn doctor, barely hearing the words “Down syndrome.” I want to tell her, “There will always be heartache in parenting. There are risks and hardships with every child. Your heartache comes now, but joy comes in the morning, if you let it. Love will make the times of pain more than worthwhile.”
This is the message I know so many organizations are attempting to spread. There are global groups working worldwide to educate medical providers, genetic counselors and families and to help them have a more balanced understanding of Down syndrome and what it means for families. U.S organizations are doing similar work here at home. There are no regulations in the U.S. around prenatal testing and the information given to parents. Many providers are operating on woefully outdated and inaccurate information. Here are a few facts from the Global Down Syndrome Foundation that I found interesting:
So, what does all this mean? It means that I will continue to share our family’s story with the world, because the world needs to see people rather than an abstract diagnosis. It means that our family will continue to help raise funds for organizations that are doing the vital work of changing public perceptions of Down syndrome and educating providers so that families grappling with a diagnosis have accurate and balanced information.²
It also means that I expect politicians who score political points by condemning the Iceland story to back that up with policies that increase opportunities for people with Down syndrome here in the U.S. That means fully funding critical Medicaid programs and supporting and fully funding inclusive education. It means increasing access to postsecondary education and broadening employment options for people with intellectual disabilities. It means fostering an environment of respect, where every person is valued.
In the meantime, I plead for compassion. Families struggling with the decision of how to cope with a prenatal diagnosis are not setting out to establish a national eugenics program. Most are frightened and vulnerable, under pressure to make a decision quickly with limited information. Many of them truly are considering the best interests of their child as best they can. Compassion and slowness to judgement are not only best, they are required for those of us who follow Christ.
The response in the Down syndrome community to the Iceland story has emphasized an important truth: people who know, know how important the contributions of people with Down syndrome are to our families and the world. Help us celebrate Down syndrome, and you are helping us make the world a better place.
¹Skotko, B.G., Levine, S.P., & Goldstein, R. (2011). Self-perception from people with Down syndrome. American Journal of Medical Genetics. Part A, 0(10), 2360-2369. http://doi.org/10.1002/ajmg.a.34235
²If you are interested in joining us in supporting organizations working to make the world a more welcoming place for people with Down syndrome, here are some links:
Down Syndrome Association of Middle Tennessee (our fantastic local organization)
GiGi’s Playhouse Nashville (our local Down syndrome achievement center)
GiGi’s Playhouse, Inc. (global headquarters for Down syndrome achievement centers)
It’s completely outrageous, but somehow, the school year is over. Today was Lina’s last day, and a half day tomorrow is Corin’s wrap-up. My oldest is only finishing first grade, and already I can tell you, every year seems to go faster than the one before. I am not prepared for what this means for the future.
As Lina’s end-of-year party wrapped up and we headed home, I found myself again reflecting on the remarkable people she has brought into our lives. I’d like you to meet a few of them.
That’s Ms. Meri. This was Lina’s second year in her early childhood preschool class. Ms. Meri has a graduate degree in early childhood special education from Vanderbilt, and she is certified in behavioral analysis. I’m not sure I can really convey the remarkable work she does and the tremendous difference she has made for Lina and our family. Her blend of warmth and no-nonsense high expectations was exactly what Lina needed as she began her school experience. Ms. Meri’s professionalism and expertise have been clearly demonstrated at every turn over the past two years.
That’s Ms. Courtney. She was Lina’s occupational therapist this year. As the year began, Lina was resistant to fine motor activities like cutting with scissors or working on pre-writing skills. This morning, Courtney told me that writing her name on the chalk board is now one of Lina’s most preferred activities. That is no accident. So much patience and persistence has gone into finding the right strategies to motivate our girl to practice the fine motor skills so essential to her future academic success. Ms. Courtney also happens to volunteer as a leader for the GiGi’s Playhouse EPIC program for young adults, so she is doing big things in our Down syndrome community.
I didn’t get pictures with several other key members of Lina’s educational team: Arianna and Elizabeth, the fantastic full-time aids who did so much of the work necessary for the kids to learn and navigate the school day; Jodie, Lina’s beloved speech therapist, who often got a full-body, wrap-around legs hug at drop-off in the mornings; and Amy, the lovely and patient physical therapist, who made sure the physical environment in the classroom was suited to Lina’s needs and worked with her on the gross motor skills needed to safely navigate the school environment.
No one could have prepared me for how important these people have been to us. They work together as a team, helping to lay the foundation for Lina’s future success and thereby lifting so much of the weight that settled on my shoulders with her diagnosis. But beyond what they do for Lina, they are beautiful people, and my life is richer for knowing them.
What I am really trying to say is that besides the blessings of her individual presence in our family, Lina has brought us the gift of a network of truly remarkable people. In fact, that network extends well beyond her school. The early intervention therapists and staff who were our introduction to special education in Lina’s infant years, GiGi’s Playhouse volunteers and families, the lovely people we’ve met through the Down Syndrome Association of Middle Tennessee, random strangers who have shared their personal connections to Down syndrome… I regularly find myself counting as blessings people I have met in our foray along this unexpected path.
There are also good-byes that come with the package. Next year is Lina’s last in preschool, and it will bring changes. She will switch to the afternoon schedule, and after two years in Ms. Meri’s classroom, she will be required to change teachers. It’s always a little sad for a kid to say good-bye to a beloved teacher, but it’s especially poignant after two years of working with Ms. Meri and developing a solid trust in her ability to provide exactly what Lina needs in the classroom. We will miss her greatly.
There have been good-byes before, including to Lina’s entire team of therapists when early intervention ended at age three. Because these relationships are by nature more involved than in the average educational setting, the good-byes are hard. That will undoubtedly continue to be true. But it will also continue to be true that our lives are so much better for the role these remarkable people have played in Lina’s life.
It turns out, the biggest gift of Down syndrome is something we all hope for: meaningful connections with the very best kind of people.
I don’t want to let this post go without noting that our educational experience is unfortunately not the norm. We’re still early in our experience, and I am sure we will face challenges in the future. But in many school systems across the nation, families struggle to get even the most basic educational and support services for their children with special needs. Under funded and under resourced schools often see those needs as a burden and try to get away with as little as possible, requiring parents to gird themselves for constant battle and strain family budgets and schedules to fill the gaps with outside resources. Even school systems with good intentions often fall short due to a severe lack of resources and training and the push and pull of constantly changing regulations and competing priorities. I am incredibly grateful that our experience thus far has been exceptional, but I also hurt for families whose educational experience has added to rather than subtracted from their burden. Better is clearly possible, and it shouldn’t take a wealthy county to make that happen. We must do right by our public schools, where most children with special needs have to receive their education and therapy services.