Field Trip Fun

I tell you, the children in Teddy's kindergarten class are some of the luckiest kindergarten students ever. They have been on a whopping six field trips this year, all with educational value tied to their curriculum, but field trips are field trips. They are fun, exciting and great opportunities to learn and make memories with your friends outside of the classroom. And Teddy has been included on every single field trip. 

The last one I attended was to Culver's, where Teddy loved the ice cream and french fries and did fairly well during the tour. Of course, he loved the bus outside in the parking lot more than sitting still, so much so that my arms were sore the next day from wrangling him. Still, he had a great time and managed really pretty well during the tour itself.

I think his dream field trip would be riding a bus to tour the bus company.

The most recent, though, neither Dave nor I could chaperone because it fell the week we're leaving for vacation. So, we couldn't arrange our work schedules to make it work, and quite honestly, the thought of keeping Teddy in a seat for a play wasn't too appealing. 

The day before the field trip, we got an e-mail from the kindergarten teacher that there were enough staff to accompany Teddy. All we had to do was send in the permission slip and the money for the ticket, and Teddy was able to go, just like every other parent.

First, how awesome that Teddy's teacher and kindergarten teacher didn't just accept that Teddy couldn't go because we couldn't chaperone to support him! Second, Teddy got to go along on this field trip, made it through 20 minutes in the theater before heading to the lobby and had a great time with his para-professional. She got to witness his sheer joy to ride the bus. Seriously, that boy jumps for joy each time he gets to ride the bus.

Look at his happiness to be included!

Second, I love the experiences not only for Teddy but also for his classmates. When we went to Culvers, all the kids were excited to have Teddy join them, with a chorus of, "Hi Teddy!" and "Teddy's coming with us!" There was also one girl who reached for Teddy and held his hands for portions of the tour and patted his arm as they learned all about Culvers. For a parent, that acceptance is priceless. 

We couldn't be happier with how Teddy's been included in the kindergarten class, particularly with the field trips. The dynamics of Teddy's regular classroom changed this spring, so that his teacher and para-professionals have more time to spend with each child. That means more educational opportunities and more inclusion, which benefits everyone.

The Making of Maple Syrup and Memories

This past Saturday we visited my parents' farm to drop AJ off to spend the week there for spring break. It's the time of year when maple trees are tapped to collect sap for maple syrup. I have fond memories from my childhood of heading into the woods with my dad and uncle every spring to help (and play in the woods). My family hasn't tapped trees, though, since I was in grade school. However, a few years ago, their neighbors started tapping my parents' woods.

This gives us the opportunity to "help" if we time our visits right in the spring. I qualify the word help because the first few years when it was just Dave and I, we certainly were helpful. However, as we had children, we became less helpful as we brought them along to share the experience with them.

I wasn't sure how we'd get to the woods this year because my mom was at a quilting retreat, so she couldn't hang out with Teddy as she has the past couple years. I didn't see how we'd manage to be any help with Teddy in the woods. Then my parents said one of their neighbors and her girls would watch Teddy. Since she has a child with a genetic disorder and is close friends with my mom, I was confident in their combined capabilities to keep Teddy alive for a few hours ... and I was so grateful for their unexpected offer.

But their offer wasn't necessary because when Harvey, the Mennonite who taps the woods, showed up, I told him our plan to drop Teddy off and then head to the woods. He immediately said it was no problem to bring Teddy along, that he could ride on the bench and that our family should make memories together. He waited while we got Teddy (and AJ) ready, smiled and waved to Teddy and off to the woods we went.

It's hard to see, but Teddy is on my back here as we chase the boys.

Teddy started out on my back, as we tried to avoid sinking into the deep snow. We chased the 7-year-old boys who spent as much time drinking sap as they did collecting it. Teddy even carried one of the bags back to the tree.

This gives new meaning to the name sapsucker.

When I got tired of sinking into the snow with him, we hopped on the bench for a ride. Teddy loved how bumpy it was! When he got bored with that, he walked around a bit with Dave and me before my dad offered to squeeze Teddy onto the crawler. (Initially, we had discussed how there just wasn't room for Teddy to ride there.) Teddy "helped" my dad drive by pushing and pulling every single lever.

Teddy loves anything that he can help drive.

It was an absolutely fantastic day because the neighbors are so willing to help and so accepting of Teddy for who he is. Collecting sap reminds me of my childhood and stories like Little House in the Big Woods. Our village who helps raise Teddy is even bigger than I realized. It extends to my parents' neighbors and friends. Knowing that is even sweeter than any maple syrup.

The inventiveness of farmers is rather inclusive.

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.

The Power of Words

When we received Teddy's diagnosis, we floundered for a month wondering what we could control with such an unknown (and quite frankly dismal) diagnosis. We felt more optimistic when we decided to start this blog to create more awareness and help other families with this diagnosis connect. It gave us a sense of purpose, an ability to control something and a way to take action.

"I write to discover what I know." —Flannery O'Connor

For me, writing has always been therapeutic. It's a way for me to sort through my thoughts and to feel balanced. This has been true of me as a child with my stories, diaries and journals. There have been times when I haven't written in a while that I feel unsettled and need to let the words flow. I much prefer writing my thoughts than articulating them in spoken word.

"Words are a lens to focus one's mind." —Ayn Rand

As time has progressed, I've discovered another purpose for Teddy's Triumphs. It allows me to look back in time, to remember the positive and past milestones accomplished. Granted, there are certain posts that I avoid reading again unless I'm really braced to relive the terror of the seizure that ended with us in the ICU or the mixed bag of emotions from our NIH stay.

"We write to taste life twice, in the moment and in retrospect."  —Anaïs Nin

More recently, I've seen the impact of posts I've written through conversations with Teddy's principal. They've prompted considerations and action. And that conversation has reminded me to take action through the appropriate channels before coming here to focus my mind.

Also, recently, the true purpose for the blog has come to fruition. I received an e-mail from a parent whose adult child was diagnosed with this CDG-PIGN. She reached out, and we've sent several lengthy e-mails and even spent an hour on the phone discussing our children. If this is the only family with CDG-PIGN that finds hope and a sense of community from Teddy's Triumphs, I'll consider that a success.

"Words have a magical power. They can either bring the greatest happiness or the deepest despair."  —Sigmund Freud

The Pink Scribble

Last weekend AJ decided that he was going to make a book with Teddy. He pulled out markers and paper and encouraged Teddy to draw. When Teddy made a pink scribble first, AJ praised him, telling him that was perfect for their book.

AJ added the arms and smile to complete the cover.

AJ continued to give Teddy papers to draw on, and he added the finishing touches. (He did have a few pages that he didn't let Teddy touch, of course, that were his own creations.) AJ developed a story based on the scribbles, using his imagination and Teddy's colored pages.

AJ saw the possibilities in a scribble.

Both children enjoy coloring, but Teddy typically wants to do exactly what AJ's doing, so AJ's pages get an unwanted scribble or two. This was a morning where AJ encouraged Teddy and didn't withhold papers for himself, so there was no bickering between them.

I got roped into writing most of the story as AJ dictated it. It's quite possibly my favorite book AJ's written because of how he included Teddy ... that, and his story-telling is getting more detailed.

A Typical Sick Day for Teddy

I feel bad saying this, but if I have a child home sick from school, I much prefer it to be AJ. There's two reasons:

1. I don't worry about AJ having seizures when he's sick.
2. AJ will lay on the couch and watch movies, relax and rest.

On the other hand, Teddy home from school alternates between worrying about him and worrying about my sanity. Let's illustrate today in a series of photographs:

Beautiful melted crayon art we created.

Not so beautiful melted towel. Guess who managed to sneakily turn on the stove?

Teddy packed his backpack ... with my winter boot, Dave's shoe and a cowboy boot. 

We played waffle blocks. Clearly, this is a picture of us playing waffle blocks.

Teddy tied up the stairs with my bootlace, while bouncing on a saddle bench. 

Teddy helped me with an hour-long work call. Couldn't have done it without him.

Of course, he was sick, so we had to take a nap. The nap looked a lot like this:

Aside from me wiping his nose approximately 100 times today, I couldn't tell he was sick. 

Spring Into Bronchitis?

Well, we got an extra hour of daylight today and an antibiotic to go along with it.

Teddy started with what appeared to be a cold Thursday with a runny nose, which quickly was accompanied by a cough. By 3 a.m. Friday morning he was up to 102­­°F. However, after 20 minutes for the Tylenol to kick in, he was ready to play for the day. I mean, otherwise, why else would Mom and Dad both be in his bedroom at 3:30 a.m.?

That's how he spent Friday: mostly his happy self with snot constantly dripping out of his nose, until I forced him to try to nap.

One of the biggest challenges with Teddy is to know whether to bring him to the doctor or ride it out at home. What appears to be a cold can quickly escalate to a fever, but how are we to know if it's a simple virus that will run it's course in a day or something more? We have no idea if he has a sore throat aside from his eating habits possibly changing. We have no idea if he has a headache. We have no idea if his chest feels weird or tight.

All we know are what we can see:

• Fever that is mostly contained by Tylenol and Ibuprofin
• Snotty nose
• Dry, irritated cough

Last night his fever didn't spike through the night, but he was slightly warm this morning. But as I watched him sit at the table staring at AJ organizing his art drawer, I determined that we needed to take him to the doctor. You see, AJ pulling out every art supply known to man and stacking it all over the counters is an open invitation for Teddy to run over there, knock down half the stuff, grab what he wants and run away laughing. Yet all he did was watch and wander over twice, not touching a thing and not pushing past AJ to get to all the fun stuff.

A docile, sick Teddy is worth a trip to the doctor. The verdict is likely bronchitis with an antibiotic because with Teddy, we always err on the side of caution. (Trust us, with AJ, we heed all the knowledge regarding antibiotic resistance.)

He's pretty darn happy for a sick kiddo. 

Yet I walked away from the doctor's office and called Dave to tell him I won: simply because Teddy had a treatable diagnosis. I consider that a minor victory as opposed to the times we walk away hearing it's just a cold. 

On a related note, as I'm home with him tomorrow, I wish he would sit, snuggle and watch a movie at least when he is sick. This child does not know how to rest in the least.