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.

IMG_4692

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.

IMG_4814If 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.

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.

IMG_2876

IMG_2855

IMG_2859

IMG_2863

IMG_2867

IMG_2868

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

IMG_2871

IMG_4705

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.

IMG_2842

IMG_2844

IMG_2846

IMG_2848

IMG_2849

IMG_2852

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.

 

 

 

IMG_2324

IMG_2325

 

IMG_2336

IMG_2337

 

 

IMG_2357

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

 

 

IMG_2394

 

 

 

 

 

IMG_2432

 

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).

 

 

 

 

IMG_2502

 

 

 

 

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.

Guest post: Today’s fight for democracy

This Memorial Day, I bring you a guest post from an author very dear to my heart: my dad, Michael Harrell. He had some thoughts weighing heavy on his mind today, and when he sent them to me, I felt they were worth sharing. He agreed to having them posted here. Whether you fully agree or not, I hope you appreciate the perspective of someone who has spent a few more years than I observing this great American experiment.

It has been a very long time since World War II. That is the last war that clearly saved the world from despotism and hatred. In that war there was a clear “right” and a clear “wrong.” The individuals who served in that war are now few, and aging. It is far too easy to forget that very many men and women sacrificed lives, health, finances and comfort to defeat a very evil enemy, and maintain the freedom and democracy we now enjoy.

We are now used to wars of questionable purpose and value. Wars fought with increasing technology that removes death and suffering ever further from our own homes; wars that seem too significantly motivated by financial gain or political advantage.

It is, I believe, important to remember that many gave up much that we can live as we live. I fear we have grown fat and lazy, and are unappreciative of the blessings we have and live with from moment to moment. Memorial Day is a time set aside that can serve to help us remember and appreciate what others have sacrificed.

We are now in serious danger of losing much of what those men and women gave to save. What a powerful enemy could not take away by violence, we are day by day giving up voluntarily. The man, elected by citizens of this free nation, who places the wreath on the Tomb of the Unknown Soldier today, is bit by bit eroding the foundations of our democracy. Nor does he bear this responsibility alone; he is the leader with many who follow for their own purposes.

Truth may be the most significant and lamentable casualty. Reshaping facts and misleading statements have always been a part of our democratic process. Our current leadership, however, now seems to have no attachment to honesty and factual evidence, with resources for verifying truth being assiduously undermined.

A free and unbiased source of information, on which we can make evidence based judgments, is another fallen trooper. Mistrust and scorn for any evidence that disagrees with a strongly held construct seems determined to put to death all but collaborative “evidence.”

Respect for one another, regardless of ethnicity, country of origin, age, sex or any other imagined difference is perhaps an equally remorseful loss. The seeds of hatred, division and disrespect are being sewn widely and deeply.

Certainly we have never been a perfect society, honest, faithful and respectful in all situations and at all times. We have had tremendous failings. But until truth can be resurrected, evidence restored and respect regained, can we expect to continue in the freedom and democracy we so underappreciate?

God’s Kingdom is our true country, and citizenship in that country is the only true security. I pray that God will soon put all concerns to rest, and establish His forever true, faithful and respectful government on this earth, as it is throughout the rest of Creation.

Michael Harrell is a respiratory therapist, an exceptional husband, father of two and grandfather of four, a deeply devoted Christian, an avid reader, a talented vocalist, excellent chef and baker, and disability advocate. He lives in Ooltewah, Tenn. with his wife of more than 40 years and his faithful guide dog, Honor. 

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 CreekIMG_2262. 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.

Lina goes to Kindergarten: Sneak-a-Peek

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.