December 31, 2018 by Jolene

New year, growing me

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I tend to be in the “a new year is just a date on the calendar and doesn’t represent an actual break with the previous 365 days” camp. I am more a trajectory kind of girl. It won’t surprise you, then, that I don’t write resolutions or set major new goals this time of year.

This is admittedly a good time to reflect, and there is nothing wrong with taking stock and marking the places we want to see change. It never hurts to focus on positive goals. I wonder, though, how often new year’s goals look like measuring ourselves against unrealistic standards, setting us up for inevitable failure. Are we really so dissatisfied with the current version of ourselves that we feel like we need to be a new person as the calendar rolls over?

Tomorrow is a new year, but here’s reality: I’ll be taking into it the same me, with all my accumulated experiences, triumphs and failures, strengths and flaws. And you know, I’m okay with that. I am thankful for the life I’ve been given and the days that have come before and that lie ahead.

I suppose when we talk about a “new me,” we’re really talking about growth. Goodness knows, I make a lot of mistakes, and there have been plenty of moments, big and small, that were painful and even regrettable. My walk with God is a process of constant grace and renewal. He gives me access to His power for transformation. I don’t have to rely on myself to make the future what I want it to be. This is where I find my peace.

We like to think, especially this time of year, that our lives are within our own control. If we set the right goals and make the right choices, if we do better, our lives will look like we want them to. My experiences have taught me that I have much less control over my life than I might wish. Stuff happens. We inevitably screw up, and even when we do the right things, life can still go wrong. If you’ve spent time with people who are truly struggling, if you know of the desperate places in the world, if you yourself have experienced heartbreak and loss, you know that sometimes, there are no good answers. We do not always have the power to fix things. My hope rests in a God who promises healing and hope, not because everything will always work out perfectly, but because He gives us what we need for today and will eventually make things right in a world where suffering is no longer part of the equation.

For today, I am deeply grateful that God promises that my life matters, and that He takes from my shoulders the weight of making that happen on my own. This is how I walk into the new year. My 40th birthday (what?!!) is just a few weeks away. There are changes ahead for our family. The biggest is that mama (that’s me) will be starting a full-time job after eight years away from the professional world. I’m going to be doing some pretty awesome stuff for an amazing organization, and I am stoked. I’d be lying if I said I wasn’t also nervous about the huge adjustment this will be for all of us. But growth happens in change, and I walk forward with confidence because I trust the One who guides my steps.

Happy new year, friends. May you know how much you are loved, how much you matter, and that all your days are safe with Him.

October 27, 2018 by Jolene

Buddy Walk 2018

Easily one of my favorite days of the year:

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?!)

September 19, 2018 by Jolene

Lina’s Bakery & Sweet Shoppe

We celebrated Lina’s 6th birthday on Sunday. The theme came naturally for a girl who never met a sweet she didn’t like. In fact, when I asked her what she wanted to eat at her party, she rattled off “cake and pie and ice cream…” So, we threw dietary caution to the wind and fulfilled her wish.

This was the first year I could see her really anticipating the party and presents. She knew what was coming, and the day of the party, she was ready. She was thrilled to see her family and friends, dug into the cake (literally, on a mission to excavate every morsel of frosting), tore into the packages and loved her gifts. She had a blast, and so did we.

September 13, 2018 by Jolene

Now We Are Six

When I was One,
I had just begun.
When I was Two,
I was nearly new.
When I was Three,
I was hardly me.
When I was Four,
I was not much more.
When I was Five, I was just alive.
But now I am Six, I’m as clever as clever,
So I think I’ll be six now for ever and ever.

-A. A. Milne

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She is six today.

The poem is from A. A. Milne’s Now We Are Six. It made me cry. A lot of things make me cry lately.

There are times when I wish I could grab Lina, take her home and never leave again. Here in the safety of our cocoon, I can delight in my affectionate, smart, funny, sassy girl. She can be fully herself, and we can ignore the pressures of the world outside our door.

Last night as a five-year-old

I cried over that poem, because for a moment, I wanted it to be possible and knew it wasn’t. My girl is growing. She is six today, but even if we both wished, she would not stay six for ever and ever. She will grow, and I cannot keep her here with me.

And I am glad. Through my little bit of heartbreak, I am glad she is growing. The dreams we have for her are much bigger than our cocoon. Soon, she will dream bigger dreams for herself. She will own more and more of this precious life she has been given. She is a kindergartner now, and that larger sphere can feel pretty scary. But an ever expanding world is where she belongs. She is making her place there. Of course there are bumps and challenges, and yes, there is hard work every step of this journey, for all of us. But we are not alone.

Every morning, God gives me courage and wisdom for the day. Every morning, He walks with both my children as they enter those big elementary school doors. He has provided us with a village of epic proportions. The teachers and aides guiding Lina, the parents and advocates paving the way, the friends listening to my fears and talking me back to reason, the extended family walking with us… They make it all possible, one step at a time.

Lina is six today. She is a gift, to me and to the wider world that awaits her. There are big things ahead. Maybe that’s A. A. Milne’s point. Six is more than five, and five more than four. Every year, she is bigger, more clever, more herself.

Happy birthday, Eline Katherine. Six is just a start. Go, make the world your own. We’ll be here, a little tearful, but so very proud.

September 10, 2018 by Jolene

Learning as we go

Lina is a few weeks into kindergarten, and a lot of friends are asking how she’s doing. The answer is… pretty well? I think? It’s actually harder for me to answer than you might expect.

I don’t get a lot of information from Lina about her days. (To be fair, I didn’t get much from Corin at this age, either.) If you ask her if she had a good day, she usually will give an enthusiastic, “Yes!” But she generally doesn’t want to talk details, and sometimes she says no when people ask if she likes school. Which seems to be more about contrariness than an actual barometer, because she seems really happy to go to school and is in a good mood when she gets home.

We’ve had some definite transition challenges. Lina was anxious and overwhelmed with all the change, and she fell back on her standard control mechanisms: noncompliance and social aggression. The first few days saw a lot of worksheets coming home with no name at the top and scribbles rather than any attempt at completing the assignment. Then I started getting messages about hair pulling, pinching, pushing, kicking… I met with her general ed and special ed teachers the second full week of school to talk things through.

Tangent: I want to say how very, very grateful I am that we are in a school system that is committed to inclusive education. I don’t have to defend Lina’s right to be in a general education classroom, learning alongside her peers. Our county does not have segregated special education classrooms at the elementary level. Everyone in the system is committed to providing the right supports to help Lina be successful as a full-fledged member of her kindergarten class – as they should be. This is not the case for the majority of kids with disabilities, despite decades of law mandating a “free, appropriate public education” in the “least restrictive environment.” This needs to be said (shouted) as often as possible. My daughter is lucky because her parents were able to make the sacrifices we need to make to live here. I get angry every time I think about kids whose families can’t afford to live in districts like this one, and thus wrestle and fight just to give their kids the opportunity to prove they can learn in a general education classroom.

(If you have questions about why it’s best for kids with disabilities to be included in a general education classroom, PBS provides a great, simple overview. But if you’re interested in learning more, I would encourage you to dig deeper. There are decades of research showing that inclusive education benefits BOTH children with disabilities and their classmates. In fact, no study has ever shown any negative effects of correctly provided inclusive education.) /End tangent

So, I had a great meeting with Lina’s teachers. We worked together on plans to support positive behavior and to help Lina engage with learning. I came away with a lot more information about the hands-on learning opportunities Lina is getting every day and the tools they’re using to help her succeed. Her teachers are fantastic, and the passion they have for helping Lina reach her potential is obvious. The right supports are in place, and we know what the next steps are. I came away feeling much better. The work coming home has improved pretty dramatically in the last week, and we’re seeing a jump in speech development, too.

Honestly, I may be having a harder time with this transition than Lina is. Kindergarten is a whole new world. Lina’s early childhood public preschool was wonderful, and it was a blended classroom, meaning about half the kids were typically developing “peer models.” But it was still a special education class. We are both learning to navigate a much broader world this year, and I am keenly aware of how much higher the stakes are. Decisions we make in kindergarten can impact the trajectory of Lina’s educational path – no exaggeration. I am finding there is a lot I didn’t know. (For example, what’s the difference between an accommodation and a modification? If my child is getting dotted lines to trace her numbers rather than writing them freehand, which is that? How does the distinction matter?)

I am struggling to find the right balance in my level of communication with Lina’s teachers. I feel disconnected, because I have fewer opportunities to speak casually with her teachers at pick-up, and really, it’s just new and I haven’t reached my comfort level yet. How do I stay engaged without driving them crazy? How often should I expect updates?

I find my insecurity and guilt flare up in these transition times. Knowing the stakes have gone up means I’m constantly questioning whether I’m doing enough. I don’t drill Lina a lot at home. She’s tired from her long days, and frankly, I’ve got my hands full making sure everyone gets snacks and goes to the bathroom and there is something resembling a healthy dinner on the table at a reasonable hour. In my head, I know she needs time to play, just like every kid. She needs to unwind and be able to decide how to spend a little of her own time. That’s as important to her development as drilling sight words and practicing counting. I know this. Head knowledge never quite silences the fearful whisper, though; it’s the one that suggests she might fall behind because I’m not working hard enough.

If that all sounds gloomy, it’s really not. There is a lot of great news here. I have an awesome community of parents at my back who have been right where I am. Our Down syndrome family is remarkable. I ask, and they give me specifics about how they have learned to manage communication with their kids’ teachers and how they stay on top of daily progress. They can talk to me about accommodations and modifications and how they matter. They connect me to resources and help me find my way to what I need to know. They remind me I’m not alone.

Just like with every new step of Lina’s nearly six years (or the past 8 1/2 years of parenting, for that matter), we learn as we go. I don’t have to solve every problem right now. Today, I am learning about daily communication logs and accommodations versus modifications. Next week, it will be something else, and I’ll learn that, too. I take a deep breath, and I remember that Lina has already proven many times over how capable she is and how much she can accomplish.

And now I’ve looked at the clock and realized I’m late to go sit in the pick-up line for an hour. (See my eyes rolling.) I think today, I’ll use my time to send that update email to Lina’s teachers, and then I’ll close my eyes, breath deeply and thank God I get to do this job. Because even on the hardest days, it’s the absolute best gig there is.

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.

August 10, 2018 by Jolene

Corin begins third grade

There is nothing quiet like the bittersweet ache of these first days… Looking through the lens of my camera this morning nearly took my breath away. I could swear he just started kindergarten.

This is what the older folks mean when they say, “Enjoy every minute. It goes so fast.” It sounds crazy to a frazzled parent just trying to make it through the eternity of an afternoon with little ones. But I get it now. The details we sweat, they matter so little. The hard stuff fades. And suddenly, that baby who wouldn’t feed, the toddler who threw stuff out of the cart at the grocery story: he’s a third grader, still anxious and sleepless the night before his first day, still willing to hold his mama’s hand on the way to his new classroom, but so tall, and every day a little more confident, a little more independent, a little more himself.

I have prayed with him and for him, and I will whisper countless more prayers through this day, and every day. He is my heart, and he is growing into the young man he was designed to be. Thank you, God, for this dimpled, freckled boy of mine.

Happy third grade, Corin.

May 28, 2018 by Jolene

Memorial Day weekend, huzzah!

Our holiday weekend was full of some of my favorite things: outdoor adventures, memory-making and family.

We started with a picnic Saturday along the Natchez Trace, followed by a hike that quickly turned into a hard-rain dousing, to the enormous entertainment of the youngest members of our crew.

We came home, took showers, had a spaghetti supper and closed the day with a few holiday weekend fireworks, courtesy of Uncle Ryan.

We spent Sunday at the Tennessee Renaissance Festival, held at a real-life castle in Arrington, just a short drive from here. We ended the day hot and tired, but everyone had such a good time. We toured the castle, and the kids really enjoyed the junk food, the games and shops and the shows – pirates and Robin Hood, a knighting ceremony, birds of prey and jousting (the clear favorite).

Lina wasn’t loving waiting in line for the bus for the castle tour, so she sidled right up to a sympathetic-looking fellow tour goer, whose name, we learned, was Ella.

She started the outing a little overwhelmed and crabby, but a pile of french fries and a smoothie did wonders for her outlook.

Lina loved the interactive Robin Hood show. She started out three rows back with us and moved up a row at a time until she got the unimpeded view she wanted.

Corin was thrilled to slay the dragon by snaring the ring with the sword, thus being proclaimed an honorary knight for the day, to rousing “huzzahs.”

Memorial Day was lower-key, with biking and walking at the local arboretum, a little driveway basketball and squeezing in as much play as possible before my brother and the family headed home. I am reminded, as I sort through photos and look back over the weekend, that these simple pleasures, of family bonding and hiking in the rain, of cousins building Legos, riding bikes, rolling down grassy hills and waving sparklers in the dusk, of outings and memory-making, are all possible thanks to a very steep price. Others have paid for this life we live, and I am grateful. Those who have lost someone to service – including my mom, who remembers her brother today – deserve our remembrance and respect. It’s easy for me to type those words, but living it out, through a bone-deep commitment to the highest ideals and values that make us American – that is where the meaning lies.

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