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: 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.

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

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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.

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.

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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. 

Year one of preschool – check!

Today was Lina’s last day of preschool for the summer. I have been surprisingly emotional about this. She has come such a long way since she started in September, and I have so much love and gratitude for her teacher, aides and therapists who have helped that happen. It’s also one more of the endless reminders of how quickly time is passing.

We had Lina’s IEP meeting last week to set goals for next year, and I came away so encouraged. The people who gathered in that room love Lina dearly, and the IEP goals they drafted tell us they have the same high expectations for her that we do. When I said it was my personal goal to have Lina reading before she starts kindergarten, heads nodded all around the table. I know she can do it, and even better, so do they. Lina has a team of six consummate professionals – her teacher, two aides, and speech, occupational and physical therapists – all working together to make sure she is able to reach her full potential. Her school is in a county that believes and invests in high-quality, inclusive education for all students. No school system is perfect, and I know IEP meetings will get harder as Lina enters the more challenging general education setting in elementary school. They’ll probably get harder again with each new stage of her education. But I am so thankful that she is getting this start, with these people at her side.

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Party snacks!

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Her beloved speech therapist, Ms. Jody

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Our favorite preschool teacher, the fabulous Ms. Meri

 

 

Preschool!

In just a few minutes, I will leave to pick up my baby girl from her first day of preschool. It’s here, and I still can hardly wrap my head around the fact that Lina’s in school.

My tiny girl weathered drop-off pretty well. The kids gather in the cafeteria before class starts, and the chaos and noise had her pretty overwhelmed. There was one major hair-pulling incident there, but she eventually walked willingly down the hall to the classroom holding her teacher’s hand and mine. (It was the first time she’s wanted to hold my hand when she didn’t need help!) Once she got into the classroom, the teacher gave her time to do a bit of exploring, and within minutes, she was happy and interested. When I said good-bye, she gave me one of her sweet hugs and kisses and went right back to playing: no tears, no drama. I got an email from the teacher saying she was doing great and LOVED the songs.

A new stage begins. I only cried a little on the way home.

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Man, I really hate that backpack. I’ve got to find a better one. Anyone have suggestions for backpacks that will hold a folder and other necessities but not prevent my tiny child from being able to, you know, walk and stuff?

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Welcome to Early Childhood

In a season of firsts, we can add another: We attended our first IEP meeting for Lina today.

IEP stands for Individualized Education Program and is the required legal document that has to be in place in order for a student to receive special eduction services through the public school system.

This is our first IEP meeting, because Lina is turning three in less than a month. On that day, her therapies and other services will transition from Tennessee Early Intervention (a division of the department of education for qualifying babies and toddlers) to the local school system.

We met with Lina’s IEP team, which consisted of:

  • the assistant principal, who oversees the early childhood program for our designated school,
  • two early childhood teachers (one representing special ed, the other representing regular ed),
  • physical, occupational and speech therapists,
  • the school psychologist
  • and one additional new teacher there to observe.

It was a full room.

The meeting was long and detailed, but it was fantastic. We were so impressed with the warmth and professionalism of every person there. I had typed up a document listing Lina’s areas of strength and goals we wanted to work on, and it was remarkable how in line that was with the assessments and goals the IEP team had prepared. We came away with a signed IEP we are very happy with, listing specific goals and services.

So now we know:

  • As soon as Lina turns three, she will begin the Early Childhood preschool.
  • She will attend 8:30-11:30 a.m. Monday, Tuesday, Thursday and Friday.
  • A speech therapist will be in the classroom all day two days/week and an occupational therapist will be there the other two days.
  • In addition, Lina will be pulled out for 30 mins. twice/week for individual or small group speech therapy and the same for occupational therapy.
  • She will also receive 20 mins. each week of individual or small group physical therapy.
  • Her class will be around 12 kids (between 10-14); six of those kids are typically developing, and the others will have a range of special needs.
  • There will be four adults in the classroom all day: one teacher, two assistants and a speech or occupational therapist.
  • Lina’s teacher is wonderful and has a master’s degree in early childhood special education. She also has worked with the KidTalk research program at Vanderbilt (which Lina has been participating in this summer).
  • The Early Childhood program for our area is at an elementary school about 20 minutes away. The building is six years old, open, brightly-lit and very clean.

I am so grateful. I get a little teary thinking about the difference this program will make for Lina. I think often of kids with challenges like hers who live in places without access to these kinds of resources, and it about breaks my heart. I know how lucky we are.

And then, there’s this: in less than a month, I won’t be driving Lina all over creation for therapy appointments!