Final Days of Fifth Grade

Franklin Elementary School has been home to Teddy for the past 6 years. After spending his 3K and 4K years at two different schools, we were excited to settle into Franklin Elementary School for the foreseeable future. Though I was disappointed at the time (OK, I recall sobbing hysterically) to learn that Teddy wouldn't be at the same school as his older brother, Teddy was meant for Franklin.

This little guy started kindergarten wrapped in love and support.

As I searched back in time to find pictures of the early years, I was reminded of so many memories and milestones. Though I'm sure I'll miss some important events or notes, here's some of the highlights:

1. Teddy's first field trip (and all the subsequent ones). His kindergarten teacher set the bar high for inclusion, and I loved witnessing Teddy with his friends. (I also loved when I realized the school would send paraprofessionals with Teddy, so I didn't have to chaperone every field trip. Sorry not sorry for letting them attend plays with Teddy instead of me!)
2. Birthday party invitations and the chance to hang out with friends outside of school. Teddy made his first close friend on the bus, followed by others. Now Teddy's friend Brad is his only friend who will be at his new middle school. The two of them are wonderful friends, and it's so fun to see them hang out together.
3. The power of advocacy. I witnessed that in his kindergarten year when I shared my feelings on this blog, only to have them read by others in the school and then I heard from the principal. I learned valuable lessons about channeling my advocacy first to the appropriate channels and then determining how much I shared here. But I did learn that asking and advocating will open doors like the next one.
4. Teddy's first concert. He wasn't included his kindergarten year, so we engaged his team to make sure he was included every other year. In fact, he even played the ukelele at his final concert this year!
5. Elopement. This experience was surreal (particularly the circumstances unfolding when I heard firsthand what happened the next day) and is irrefutable proof that Teddy has a whole team of guardian angels (who apparently all took a break at the same moment). We got darn lucky this day, and I don't think it's something his team will ever forget. While it still didn't get 1:1 support for Teddy, it did put in place 1:1 support when outside of the school building in a safety plan. Though that safety plan never got tested fully right away because ...
6. A global pandemic shut down all schools for the remainder of the school year. And then we did a modified school year for two entire school years. (Holy cow ... I can't believe we lasted 2 years with that child in a bubble to protect him.) His teacher wore full PPE for that first year (mask, gown, gloves and face shield ... which is just insane to consider now but was so appreciated at the time.
7. A paraprofessional who asked in January or February 2020 whether we ever would be interested in childcare for Teddy, and I answered yes before she finished her question. Because of the global pandemic, she actually stepped in sooner than intended for childcare, moved in with us for a period of time, spent holidays in quarantine with us and became a part of our family. It's weird to know that this wouldn't be the case if Teddy went to any other school.
8. Beautiful art projects, including some of my favorite Christmas ornaments and homemade gifts. It's so wonderful that his team helps him to create these little masterpieces because he is truly proud of the work he brings home. 
9. Fantastic bus drivers and aides. We've made a lifelong friend who commandeered a bus to bring to Teddy during the COVID years to give him his bus fix. These ladies have always watched out for Teddy, and I've always rested easy when Teddy was in their care.
10. A DARE and 5th grade graduation ceremony where he scampered up to get his DARE certificate ... and then tried to run away in the opposite direction. After a break from sitting (riding on his chariot of a bike), he came back for the 5th grade promotion. Yet he was very particular about the magnetic toys and organizing them back in the box, so his teacher had to physically redirect him to get his certificate. Yet afterward, his teacher commented twice on how good Teddy did. Not only did that make me chuckle, it also makes me wonder what most school days look like.

Now he's a big 5th grader celebrating graduation with his amazing teacher.

This school has been home to Teddy for 6 years. While we're so excited for the opportunities in middle school and think it'll be amazing for him, it's bittersweet to say goodbye to Franklin Elementary. As I mentioned above, only one of his classmates will be joining him at his new middle school (the downfall of not being placed at our home school that feeds into our home middle school). This is one of the bitter parts because all the kids at Franklin, every grade, know Teddy by name, and most are excited to see him. I watched the kids at graduation cheer extra loud and give extra high fives to the kids like Teddy and the ones who need a bit more love (like the little boy who immigrated this year from Africa knowing no English ... funny story, Teddy's universal language of gestures and smiles convinced this kid to join him on the carpet when everyone was supposed to be sitting at their desks ... still makes me chuckle.)

This week will be a hard one for me, as mom, to let go of the elementary years. Right now it's less about the uncertainty of middle school and more about the sadness of leaving behind the friends, teachers and support staff who have embraced Teddy fully for who he is, helped him be his best and loved him (most moments at least when he wasn't testing those boundaries). 

I Heart CDG

No, I really don't love CDG, but that's the button I wore the other week to AJ's school. AJ designed buttons for us to wear while we shared with his class about CDG and Teddy, so I proudly wore mine.

Every year since kindergarten, AJ and I have presented to his class to share a bit about Teddy and his diagnosis. I view it as a great opportunity to help his classmates understand not only a bit more about Teddy in particular, but also how to interact with people with disabilities. (It's easy. Like they're people.)

AJ talked about adapted equipment Teddy uses. 

AJ put so much effort into this presentation, with obvious love for his brother and a desire to help others understand Teddy. This was the first year where he did the majority of the talking with me adding a few things and guiding a few questions. He put together a Power Point presentation and did a very nice job with that. I showed a few pieces of Teddy's equipment, such as his chair and demonstrated the backpack carrier with AJ. We talked about how these things allow Teddy to do the things we enjoy as a family.

The kids listened so well.

Then we played charades with his class. AJ used his list for Valentine's to divide his class ahead of time into three groups, and he even created the charade ideas this year. They were definitely really tough, such as "No bullying" or "I love Oreos." We use the game of charades to help the kids think of what it's like to communicate without talking ... how frustrating it can be to not be able to talk and be understood but also how hard it is to guess what someone wants or means from a few gestures. One boy nailed it on the head when he said, "You can't just give up because Teddy can't tell you."

I have spent time in AJ's classroom on a regular basis, and I can say without any exaggeration that I have never seen his classmates sit or listen as well as they did for his presentation ... at least until he passed around the pictures after about 20 or 30 minutes of talking.

As long as AJ's teacher is willing, I hope to continue this tradition every year. I think it's nice for AJ to be able to share about Teddy with his classmates to build some empathy and understanding. I also think it's absolutely critical that children get exposure to others who are different to demystify things and help them understand that children with disabilities are still children who want to play and have fun in their own ways.

Kindergarten Graduation

Today's the big day. Teddy celebrates his last day of kindergarten with his peers. Next year, he'll be in the same classroom with a new teacher as well as brand new first grade teacher and mix of first grade peers with whom he'll integrate and spend portions of his day.

This year Teddy has grown so much, both physically and developmentally. He's been welcomed into his school with open arms, and it's his version of Cheers. (Remember, the old TV sitcom?) Everyone knows his name.

He's had so much fun on his bus rides this year, with his beloved Ms. Lori taking him safely to school and bringing him home. She makes his bus rides so much fun that he usually pushes me away each morning, so he can get to the fun part instead of mom talking. She gave us a family fun pack for summer memories with spray chalk and squirt guns, along with the sweetest note. I think we might have to work out a park or ice cream date with her this summer because both boys adore her, and quite frankly, so do I.

I think I'll cry when Ms. Lori is no longer our bus driver for Teddy.

Teddy had a graduation ceremony this afternoon with all the rest of his kindergarten friends. I think my heart was so full it eeked tears out my eyes. It's been an absolutely amazing school year, and I'll leave you with these photos. The best is the video, though, showing off his skills, moves, his amazing para and the moment when he found me in the audience.

Teddy's teacher could barely manage a picture through her tears ... not of joy!

Teddy rocked his graduation with his kindergarten teacher!

All smiles for graduation! So much pride in those three smiles. 

Penultimate Day of Kindergarten

Since penultimate is one of my favorite words, I had to use it for this post. Teddy's in his final days of kindergarten, and this year has been filled with so much good. We've been extremely fortunate to have a team of people who adore Teddy for who he is and want nothing but the best for him. 

This was one of the e-mails I sent this week to his primary teacher, the one who voluntarily works with Teddy and others who have equally challenging needs day after day. She chooses to do this as her profession. Well, at least she chose it, but she's retiring this year. I swear it has nothing to do with Teddy.

Hi Sarah,

I know this is your last year at Franklin, and Teddy will definitely miss you next year. Transitions are always a challenge, and we're so glad you were Teddy's teacher for his first year at Franklin and technically first year fully in the school system as opposed to the early childhood program. We have appreciated so much your communication throughout the year, which has been constant and given us insight into at least a portion of his days. That helps put us at ease and facilitate conversations at home about what he's learned and done at school.

You've worked so hard with Ms. Thoma this year to have Teddy included and integrated with his kindergarten peers. That was such a challenge for us in the past, so this year has been wonderful to have that happen regularly without us constantly needing to push for it. Teddy is such a social little dude who loves to be around others and learns so much from them, even if he still does try to sit on them or plow right through them at times. Watching Teddy interact with his peers is truly a joy when I've been on the field trips or at school to see how much they enjoy having Teddy a part of their day. It's incredible to see their excitement to have Teddy included match Teddy's excitement to be included.

We appreciate the effort put forth on academics, but what truly matters most to us is that Teddy is accepted, loved and celebrated for the amazing person he is and encouraged to be his best self. You've absolutely done that through the year. Even when Teddy had a rough day, you always focused on the positive aspects of his day while acknowledging the challenges. It's clear that you've seen potential in Teddy from the first meeting and have worked to help him flourish. We have never doubted your absolute care and commitment to Teddy.

There's so much more I could say, but I wanted to make sure you know how much our family appreciated you this school year. We wish you the best of luck with your next endeavors and hope your daughter is able to get the support and stabilization that she needs.

With so much gratitude,

Kerry

Do you know how good it feels to be able to write something like that and mean every word? This teacher approached even Teddy's most challenging days, where he was a tired, miserable cuss, with empathy and positivity. 

The other letter I wrote was to Teddy's kindergarten teacher. She's the one who didn't necessarily commit her career to teaching children like Teddy, but she embraced him into her classroom with open arms.

Hi Beth,

The letter today made us smile and will go in Teddy's memory box for sure. I'm not sure if Sarah has gotten it to you yet, but there's a Dr. Suess book Oh the Places You'll Go! floating around school for Teddy's team to sign for him. We started this when he started school to capture the memories and thoughts of his team along the way.

But I wanted to take a few minutes to thank you for all that you've done for Teddy and our family through the year. Last year it was a constant struggle for us to get Teddy included with his typical peers, and this year you embraced Teddy right from the start. I remember meeting with you the first day of school and walking away ready to cry because of how it was clear that Teddy belonged in your class from his spot at the table, to his poster to create to the extra supplies you had for him.

I know that including Teddy in your classroom presents additional challenges and that it didn't always go as planned. I know there were times that Teddy created a bit of that chaos that follows him when he sits on his friends or plows through his friends or doesn't share appropriately. But giving him the opportunities to be included, to work on learning from his mistakes and to learn from all his friends has been wonderful.

I can't imagine a kindergarten teacher who plans more fun field trips than you, and you made sure Teddy was included on every one. Again, his behavior isn't always appropriate for the entire duration, but I know that he absolutely loved being included on every single trip. 

Teddy is such a social little dude who loves to be around others and learns so much from them, even if he still does try to sit on them or plow right through them at times. Watching Teddy interact with his peers is truly a joy when I've been on the field trips or at school to see how much they enjoy having Teddy a part of their day. It's incredible to see their excitement to have Teddy included match Teddy's excitement to be included.  

Your efforts to educate his friends about Teddy will go a long way as they grow older. They're at such an accepting age that having Teddy included now will pave the way for their interactions with others who are different from them in the future. I know Teddy learns from his friends, but I believe they learn from Teddy as well. 

You've set the bar high for his first grade teacher next year. We truly appreciate all you've done for Teddy and us as his parents.

Thank you,

Kerry

These ladies have set the bar high for his future teachers, including the one I met this afternoon who's replacing his regular teacher next year. I know that as we get closer to the start of school, that back-to-school anxiety will creep in because of the unknowns. But for now I'll treasure the blessing that has been this year and look forward to Mr. Theodore's kindergarten celebration tomorrow. 

Teddy's Homework

This past week, Teddy has brought home a plethora of papers. He's brought home worksheets nearly every day, with obvious hand-over-hand efforts at identifying letter sounds, color and object identification and other academic skills. 

I think the staff to student ratio in his class changed because although he's brought home projects or papers in the past, it's been nothing of this magnitude both in skills or amount in any given day. I also think that he's further into the academic year that his class has gained ground on understanding acceptable school behavior and the basics of being in a classroom, which helps. Granted, Teddy was laying on his classmates today and generally a dink. His teacher phrases it so much nicer in her notes to us, of course. (And can I just say how much I appreciate the daily note from his teacher or para-professional? Sometimes it's just a sentence, and sometimes it's much longer and more detailed, depending on how the day ends in the classroom. Still, anything is more than what we'd know otherwise.)

An array of educational materials. Even those scribbles are hand-over-hand.

Anyways, it's been really cool to see these worksheets and scissor-practicing activities and workbooks come home. I know they've been working on academics all year, but it's neat to see what that looks like coming home, beyond the things his teacher shows us when we visit. 

I don't know what Teddy's academic potential is, but I do know that this type of repetitive, hand-over-hand effort is one of the things that will make the magic happen.

Celebrating Successes

Naturally, as Teddy's parents, we celebrate his successes and accomplishments with hugs, smiles, praise and sometimes arm flapping when I'm really excited (like the first time he pulled himself to a stand!). It's such a heartwarming experience to see others do the same.

This was the e-mail we got from Teddy's teacher today as soon as class ended:

"I just wanted to email you today to let you know that we were so proud of Teddy. Typically, he crawls or "bunny hops" from place to place, but today he walked around during play time to get from one area to another at least 3 times! We were so excited!"

I'm happy to hear Teddy chose to walk around the classroom today, especially because I know he's capable of that. (I'll admit I still do double takes when I see a child walking in our house because my brain automatically assumes it's AJ. Granted, I should know the difference because AJ doesn't walk like a drunken sailor, but it still sometimes surprises me to see Teddy walking.)

But what makes me really happy are the words "so proud" and so excited!". The fact that his teachers are proud of his accomplishments and excited for his progress makes my day. And Dave agrees.

Unfortunately, he also agrees with me that it's likely Teddy will try to eat his part of the classroom puzzle they're working on this week ... but today we're celebrating successes!

A Letter to His Teachers

I firmly believe God's been doing his best to prepare me for the honor and challenges of being Teddy's mom well before Teddy was born. In the early months after I had AJ, I stumbled across a blog called Noah's Dad, which details a family's unexpected journey with Down Syndrome. I found so many of the posts insightful and thought how beneficial this information would be to another family in a similar situation. Although Teddy does not share the same diagnosis, there's enough parallels to give me hope, inspiration and a few ideas.

One thing Noah's parents did before Noah entered a traditional classroom was to send a letter to his teachers to help them better understand him. I thought this was an excellent idea. It's something more personal (and concise) than the lengthy IEP. So with school starting in a couple weeks, here's the letter Teddy's teachers will receive:



We wanted to introduce you to our son Teddy. We know you have his ISP, but there’s more to him than what’s documented there.

Teddy has a rare genetic disorder called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1. We finally learned his diagnosis in November 2015 after nearly 2 years of searching for answer after his first seizures. At the time, we were told Teddy was the 15^th child known in the entire world with this disorder, which was only discovered by the medical field in 2011. Our joke became that Teddy wasn’t one in a million. He’s more like one in a half billion.

Essentially, Teddy’s genetic mutations affect his body’s ability to send messages and connect information because the pathways and processes don’t function typically. Part of his diagnosis includes hypotonia. This doesn’t mean he is weak, but it means his muscles are more relaxed and he has to work harder than you or I to support his own body. You will notice he is a bit floppy, for lack of a better word, and tends to choose positions that help him support himself. 

Teddy is curious about the world around him and likes to explore, although his methods are not always appropriate. Teddy enjoys the feel of items in his mouth, so we try to redirect him to something appropriate like chewelry if he has that need. Teddy likes to climb, so you may want to watch your bookcases, tables and anything else you may not realize he will believe is a mountain for him to scale. He’s at the point where he believes the word “no” means that he should laugh and continue whatever action prompted the word. 

One of the things that makes Teddy unique is he has an extremely high pain threshold. He may cry when his feelings are hurt or when he’s tired, but he rarely cries when he’s hurt (or he will cry for only a brief time where most other children would cry for much longer). This sometimes means we find bruises or scrapes without knowing exactly when they occurred because Teddy never cried to let us know something hurt. 

The most important thing about our son is that he is a child first just like any other child. He wants to play and learn. If you have any questions about Teddy or his genetic disorder, we hope you feel comfortable enough to ask us. We have created a blog about Teddy’s journey, which you can find at www.teddystriumphs.blogspot.com if you’re interested. 

We are very proud of our son and love him more than we could ever express. Thanks for the role you are playing in his life, and thank you for all you do to invest in our children. We appreciate you, and we’re so excited for the possibilities for Teddy as you work with him this year.