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! 

Thus begins transition

Jon and I attended Lina’s first school transition meeting yesterday. We drove down to the county administration building and met with Lina’s TEIS (Tennessee Early Intervention Services) coordinator and a school psychologist who took down initial information about Lina’s current progress, goals and needs. There wasn’t much new information at the meeting, since we’ve already talked quite a bit with the TEIS coordinator about the early childhood special education program. We got a few answers to questions, but the meeting mostly served as an official introduction to the school system and the kick-off for the transition process. From here, the wheels turn until her first day of preschool on September 14.

The next steps, as we understand them, are:

1. Soon – probably in the next few weeks – we will know for sure which school Lina will be assigned to. Early childhood preschools are not offered at every elementary school in the district. Our zoned elementary school is in a “swing zone,” meaning we could end up at either of two preschools, both of which are about 20 minutes away. There is also a chance the district will open a third program, which could potentially mean a closer option.

2. Sometime over the summer, Lina will be scheduled for a full evaluation, which will include motor, communication, social and cognitive assessments. These assessments will show where she is in her development and will be the basis for her qualification for special education services.

3. Once the assessments are complete, the school system will schedule our first IEP (Individualized Education Program) meeting. This will be the biggie, where we sit down with school administrators, teachers and therapists and outline very specific goals and strategies for Lina. We will be attending regular IEP meetings for the rest of Lina’s educational experience. The IEP is a critical tool for making sure she is receiving the support and resources she needs to reach her full educational potential.

4. In August, we will schedule a tour to see the preschool in action so we have a better idea exactly what to expect on Lina’s first day.

It was a pretty uneventful meeting. The most involved discussion we had was about cognitive testing, which some parents refuse out of distrust for the accuracy of the testing and a concern that an IQ score will result in limiting expectations. But really, it was pretty simple, and we were out of there in about 30 minutes. It’s funny, though; I still felt a bit like a wrung-out dish rag. Even when the logistics are straight-forward, a meeting like that requires a higher level of emotional energy. I think any parent who has been in a school meeting to discuss a challenge can probably relate. I have been to similar meetings with her current school or therapists, but this was the first one Jon was able to attend. He commented last night on how it was emotionally a little bit hard; I felt relieved to share that experience with him. He won’t be able to go to every school meeting, but we agreed it’s important for him to be involved whenever he can. I am hopeful the educational realm we are entering may make it a little easier for Jon to be involved in setting goals and knowing what we’re all working towards.

On a less serious note, I’ll share a few pictures from the last day of my cousin’s visit. We had such a good time with family we see too rarely, and we miss them now that they’re back home in Michigan.

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Girl was fearless heading down the big slides.

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Dirty and content

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A boy and his dog

School decisions in Reality Land

Things are getting all kinds of real around here.

Today, I pre-registered Corin for kindergarten at our local public school. (He now has a nap mat and official Scales Elementary canvas bag!) I also met with Lina’s TEIS (TN Early Intervention Services) coordinator for her six month review, in which we updated her therapy goals and discussed her transition to the public school system in September. (Kids under three who qualify for special ed receive therapies through the state early intervention system and then transition to the local school district on their third birthdays.)

I’m thankful to still have five months to prepare for the fall; it’s going to be something. In August, I will be putting my firstborn on the bus for his first taste of full-time school (and the first taste of public school for all of us – but that’s a different subject). A few weeks later, I will begin driving Lina nearly 20 minutes one-way for a four day/week, three hour/day preschool. In addition to her highly-qualified teacher, she will have speech, physical and occupational therapists in the classroom all day. Her class will be 50 percent special education preschoolers and 50 percent “peer models” (typically developing kids her age).

This may not sound like a big deal to a lot of parents, but to this “let little kids run free and learn by reading cereal boxes and digging in the dirt” mom, it really is. My instinct for as long as we’ve been thinking about the subject has been that the ideal early education for very young kids happens mostly in an unstructured home environment, with educated and engaged parents. I’ve read some pretty solid research along those lines, particularly related to the key role of play in early learning. I have concerns about increasing academic pressure on kindergartners, who are still at an age when a highly-structured environment can backfire.

But life is life, and we don’t dwell in the ideal. We live in our own complicated reality, as does every other family on the planet. We don’t make decisions based only on research and ideology; we make them based on our unique kids and our specific life circumstances.

That’s why my kids have been in a Mother’s Day Out program. It’s how two church school-educated parents moved to the other end of town, to a painfully expensive housing market, to access the best public schools in the region. It’s how a “less structure is better” mom is enrolling her five-year-old in a public kindergarten and her three-year-old in a four-day-a-week preschool. Jon and I have spent a lot of time wrestling with competing needs and priorities. We’re working to find the right balance of what’s best for the entire family. We’ve prayed a lot, researched a lot, talked a lot to other parents and therapists, and this is where we’ve landed. I am (mostly) at peace.

Just don’t ask me about it as I’m putting Corin on the bus in August or dropping Lina off at her classroom in September.

And, just for kicks, I will leave you with this gem of Corin dressed for Dr. Seuss day at pre-K. (That would be my belt as a tail and a hat I stapled and glued together this morning, between packing his lunch and combing his hair for school pictures.)

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