May 22, 2019 by Jolene

What kind of year has it been?

A year of kindergarten special education in one photo

I’m in a reflective mood this evening. Tomorrow is my youngest’s last day of kindergarten, and my oldest’s of third grade. I’ll spare you the cliches about time passing, but know I’m thinking them.

I’m not really sure how to feel at the end of this year. I don’t know what lens to choose.

It’s been a hard one in many ways. Lina has struggled with waxing and waning behavior issues over the course of the year. (Hello, old friends “non-compliance” and “social aggression.”) We’ve had to work exceptionally hard – much harder than I expected, after our comparatively breezy preschool experience – to get the communication we needed from Lina’s special ed team. Math has been challenging for her. I’ve spent a lot of time worrying about things I have little control over.

Corin has had his struggles, too. He is a bright student who has spent this year learning about the increased accountability of letter grades and real homework assignments. We’ve worked hard to keep the responsibility of those things with him, rather than taking them on ourselves. That’s meant making peace with B grades for a kid who’s capable of straight As. He’s also still the kid who collapses when he gets home after the strain of meeting expectations all day long at school. He’s the kid who can’t function without 10-11 solid hours of sleep, and the kid who has trouble acknowledging difficult emotions and expresses them with outrageous emotional outbursts.

But… But, but, but. It’s also been a GOOD year. Lina was reading on a first-grade level by mid-way through kindergarten. She has made so many sweet friends in her class, and their families have gone to extra lengths to include her. The room mom this year was extraordinary, hosting more than one social event for all 20+ kids in her own back yard. Lina’s classroom teacher was a living example of the kindergarten teacher every kid deserves: so kind and encouraging, but gently prodding her students to grow and do their very best. Her love for those kids was evident in every interaction. Toward the end of the year, Lina triumphantly read the school’s mission statement (including the phrases “balanced education” and “lifelong learners”) over the P.A. to the entire school during morning announcements. The staff in the room applauded when she was done.

Corin is currently reading Lord of the Rings (which, I here admit, I didn’t manage to finish until college). He has gradually pulled his grades up, entirely of his own accord. He has made new friends, explored new interests, and shown flashes of surprising maturity. His teacher had a tough class this year, with some challenging behaviors, but she handled it with tremendous skill and grace, never lowering her bar for the kindness and respect she required. She cared about her kids and was deeply committed to their learning, both in academics and in the skills they’ll need to become responsible adults. Corin has continued to develop his vivid imagination and his love of writing, and it’s clear he takes after his mama in his love of story and communication. He has built a wide circle of friends, and has bonded further with a couple very close ones.

So how do I summarize all that has come with this school year? I suppose, like so much of real life, it defies easy categorization. It was messy and hard and glorious and necessary. It was beautiful, in that the two children I love the very most successfully navigated another year of learning and growth.

I worked from home today, which meant I didn’t have to run out the door before the kids were awake. I lay beside Lina in her bed at 6 a.m. and read her stories. Corin came and snuggled in. I was tired and needing another hour of sleep. They clambered over and around me to poke and tease each other. It was silly, and chaotic, and exhausting, and beautiful.

Happy summer, friends.

October 25, 2018 by Jolene

PROGRESS

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.

October 4, 2018 by Jolene

A day at the farm

One of the favorite parts of kindergarten (at least for me!) is the fall field trip to Gentry’s Farm. This place is pretty amazing, and they are pros at moving school groups through. They’re able to accommodate huge crowds, so it’s a favorite trip for parents to join. Lina had a blast, and it was so much fun to see her interacting with friends in her class, who were especially pleased to show me they had taught her to dab. (Why didn’t I get a picture of that?!)

August 16, 2018 by Jolene

Lina goes to kindergarten: First half-day

I sent my baby to kindergarten and survived!

Yes, it involved me ugly crying in the car before running my feelings out for four miles at the greenway. And yes, she fell asleep in our bed after she got home. But we made it through, and she seemed to enjoy her day. She was too tired to talk much about it, but at pickup, she was smiling and answered the standard, “Did you have a good day?” with an enthusiastic “Yes!” So, we’ll call that a win and do it all again tomorrow. Then the real fun begins with the first full day on Monday.

There is a lot I could say about the ways this is familiar and ways it’s different than it was with my firstborn. I could talk about my own worries and how hard I am trying to keep them in check so they don’t color Lina’s experience. I could talk about how these milestones often bring a tinge of recurring grief over the ways life is harder for my girl. I could talk about the guilt that threatens to rear its head, whispering that I should have worked harder with her, that there is more I could have done to give her a head start. I could talk about how proud I am of how ready she really is. But we’re all pretty tired around here, so I’m going to let all that lie. I will post cute pictures and finish out this day knowing Lina is remarkably capable and in very good hands, human and – most importantly – divine.

Happy kindergarten, precious girl! We can’t wait to see all you will accomplish this year.

Sassypants didn’t want to smile. Also, the headband didn’t make it past photos.

May 17, 2018 by Jolene

Best laid plans, or, Lina’s last day of EC

Today did not go as planned.

It was Lina’s last day of early childhood preschool. She has spent three years at Pearre Creek Elementary, where the teachers, therapists and staff have loved her and she has loved them. She has thrived. She has asked for school on weekends and holidays. This place has been good to her. It has been good for her.

I was emotional before the day even began. (You’re shocked, I know.) I cried as I thanked the amazing bus driver and aide and watched that preschool bus pull away for the last time.

I got my post-gym shower and headed to Target to pick up a few things. (How many disasters have begun that way?) It wasn’t until I looked down at my phone, well into my meandering, and saw the calendar reminder for Lina’s end-of-year school party, that I remembered I was supposed to be at her school an hour early. I was supposed to bring baby carrots. I was supposed to hear the kids perform the songs they’ve been practicing for weeks, the ones Lina has requested we sing along with on YouTube every day this week. It was five minutes until the 30-minute party started. I was 25 minutes away.

I cried all the way there. The landscaping truck in front of me belched black fumes as we lurched through the worst 3 p.m. traffic I’ve ever seen between Target and Pearre Creek. I’d like to tell you I got it together before walking into the classroom, but nope. I cried again once I got there, as kids were already heading out the door with their parents.

But Lina – that girl, that light of my life – was overjoyed to see me. She was relishing her party snacks like they were the only food she’d have that day. I worked valiantly – really, it was downright heroic – to regain control of myself, and I just managed to avoid ugly crying again as we said our many good-byes.

As I look back tonight at the photos, I can (mostly) let go of my frustration and disappointment. Because, y’all, look at these faces. The pictures are grainy and blurry as I scrambled to catch the moments, but look at the way these women, these super heroes of Pearre Creek EC, have loved our girl.

What more can I add to that? Thank you, Pearre Creek. We will not forget all you have done for Lina.

May 22, 2017 by Jolene

Down syndrome’s biggest gift

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.

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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.

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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.

August 12, 2015 by Jolene

And he’s off…

Today was the day. Corin got up to his alarm and followed his schedule, just like we’ve been practicing, only this time, it was for real.

Monday, he went in for his kindergarten evaluation, and last night at 5:30, he got a recorded call from Miss Davis, letting us know she would be his new teacher.

He listened to the message about 10 times and has radiated excitement ever since. For those of you who know what this summer has been like around here, you’ll know this was good news. Corin has been very apprehensive about the approaching school year. I was pretty sure he’d be fine once school actually started, but his anxiety had me a little worried about how he would navigate the change.

It’s so like him that the summer was high drama, but the actual start of kindergarten was smooth as butter. He dressed himself and ate a little less breakfast than usual while repeating, “I’m ready to go to school. I can’t wait!” He let me take pictures without protest. When we arrived at his classroom, he walked in with almost no hesitation, struck up a conversation with his new teacher (whom he had apparently already chatted up during evaluation), went with her to find his seat, and settled right down to the first project of the day: drawing a picture of himself on his first day of kindergarten. I got a couple of big good-bye hugs, and then he went right back to his work.

What were you worried about, mom? Easy-peasy. I was so proud and relieved, I didn’t shed a single tear. (I might have shed a few as I made his lunch last night, but that’s between me and the peanut butter and banana sandwich.)

He came home from his half-day looking a little tired but reporting a good day. He’s home tomorrow, another half day on Friday, and then Monday begins the full schedule – and his first time riding the bus.

And so my firstborn begins his honest-to-goodness school career. So far, so good.