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.

IMG_2859Lina’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 behaviorIMG_3446 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 IMG_3420darling 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.

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?!)

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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.

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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: 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.

And kindergarten – check!

Corin’s end-of-school party was today, and in a few hours, he’ll be headed out on his final bus ride as a kindergartner. We weathered all that anxiety last summer, and now he finished the year thriving and confident, a kid in his element with his friends and a teacher he has loved. I’m going to miss kindergarten. Even with the modern change to more academics, it definitely still has that introductory feel. First grade suddenly sounds like real school. Corin is excited about it, but, as usual, I am wishing we could slow things down, just a little.

And so our summer begins, on a cloudy, 67-degree day. We have plenty planned – a week of day camp for Corin in June, swim lessons for both kids, a week of family camp for all of us in July – but there will be some down time, too. I’ve penciled in the building of blanket forts, catching of fireflies, reading of books, watching of movies and roasting of marshmallows over bonfires. I’ll keep you posted.

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The kids played some fun relay games out on the blacktop, but we’ll limit the pictures to this one, since I don’t have permission to share the other kids’ photos. I did meet the much-discussed little girl Corin has identified as his future wife. 

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When Jon asked Corin last night what he would miss most about kindergarten, the answer was immediate: “Miss Davis.”

 

100 days of school

This is apparently quite the thing in schools across the nation, judging by the photos in my news feed. I’m pretty sure it wasn’t when I was a kid, which led me to a bit of cynicism about the increasing hoopla over everything. I admit it, though: this was fun. We mostly hodge-podged it with stuff on hand, and Corin was so excited that he was up well before his alarm. The class all dressed as 100-year-olds, including the fantastic Miss Davis, and the plans were to spend the day on all kinds of counting activities.

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Pretty cute old man, right? Of course, that crazy, too-big wig he wanted so badly didn’t even make it to group photos…