Tuesday, March 26, 2019

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.

Saturday, March 23, 2019

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.

Wednesday, March 20, 2019

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

Sunday, March 17, 2019

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.

Monday, March 11, 2019

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. 

Sunday, March 10, 2019

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. 


Thursday, March 7, 2019

Life Lessons and Next Year's IEP

I mentioned last week some frustrations with Teddy's recent IEP but didn't go into much detail. The past week has involved several e-mails and calls to follow-up on those concerns, some of which I initiated and some that I didn't.

Here's my takeaways, which are written as much for your interest as to help me remember a year from now what I need to do:


  1. We talk a lot at work about assuming positive intentions. Odds are really good that no one is setting out to ruin your day or make your life harder. Obviously if someone is on Teddy's team, they care about children who require additional assistance. Granted, it's a lot harder to put this belief into practice in the moment when your focus is what's best for your child.
  2. I need to be better prepared for Teddy's IEP next year. I need to request a draft copy in advance to the meeting, so we can review and make notes. There's so much to fit into a 1-hour meeting when you have a special education teacher, adapted physical education teacher, speech therapist, occupational therapist, physical therapist and nurse who all have sections to cover, much less parental concerns or observations. I know it's more work for the team to get that to us in advance, but it really helps us have a better meeting. Also, honestly, it helps me be better prepared emotionally, which leads me to the next point.
  3. IEPs are hard on me emotionally. They are essentially a meeting that is focused not on your child's successes, of which there are many. The purpose is to really address those areas where your child needs additional supports to be successful. We all know there are many wonderful things about Teddy and what he does in school. Although we get snippets of these, that's not the point of the IEP. And if everything was wonderful, we wouldn't have an IEP in the first place.
  4. I already put a sticky note on the calendar for September to get the names of everyone on Teddy's team. Each of the past three years, his team has been completely different each year with the exception of one consistent person from the school district between early childhood and 4K. It seems like the therapist teams aren't sorted out until the beginning of the school year, so I need to give them a couple weeks to get their ducks in a row. But then I need to insert myself in a positive way into their row of ducklings and open the lines of communication. Teddy might be brand new to them, but I've got years of experience with him.
  5. When situations at school frustrate me, I need to reach out through the appropriate channels for resolution. I made one or two comments on my blog last week, but I also did reach out via Teddy's teacher to each of his therapists to thank them for their time and/or address concerns. That's the right approach. My plans to do an in-depth therapeutic (for me) breakdown blog post of the IEP wouldn't solve anything. I realized I wouldn't be writing that post as soon as Teddy's principal called me this week.
  6. Teddy's principal cares about Teddy and wants to hear our feedback. Apparently this wasn't the first blog post that provided feedback to the school. I hadn't realized the reach of my words, not just who is reading this blog, but also the effect of certain posts.
  7. It may not be pleasant to have those difficult conversations with people with whom you disagree, whether approach, word choice or perceptions. But the conversation I had with Teddy's speech therapist left me feeling much better, and reaffirmed my first lesson to assume positive intent. We never know what someone else has going on in their lives, so despite my belief that you set everything else aside and focus on the issue at present, people need a little grace. Of course, I can say this because I now am confident that Teddy's best interests are at heart. If I feel like someone isn't doing his or her job at the detriment of Teddy, well, that's another story. That's the mom in me, coupled with an HR background. 
  8. I put a lot of pressure on myself for the outcomes of Teddy's IEPs. I feel additional pressure, in part, because Teddy cannot speak for himself. More preparation in advance will at least make me feel like I'm doing all that I can.

This post from Speech and Language Kids should be required reading for me before each IEP.
So in addition to the positive follow up, I have a chance at redemption for preparation and feeling like I'm doing my best for Teddy. As it turns out, he has his first reevaluation yet this school year. Although we've never been through one yet, I already started e-mailing information and questions last night to his team to prepare.

Saturday, March 2, 2019

King of the Party

Teddy crashed a Mardi Gras party at my work today. OK, he was invited because my co-worker wanted me to come take pictures. She offered to help wrangle Teddy (my word choice, not hers) to make it easier for me to say yes. This party was intended for the clients who we support, so Teddy was the only young child there. That didn't stop him from making friends and having a fantastic time. He alternated between wearing the awesome hat my co-worker got for him that was "Teddy proof" and trying to make other people wear it. (The hat was remarkably Teddy proof. He only lost one bell the entire afternoon.)

Such a cool hat!

Teddy though the table of beads was intended for his personal shopping. He walked away with several necklaces, most of which ended up around my neck by the time we left.

He loved that there was music and a designated dance floor. He didn't know whether to dance or just stare in awe, though, when people were blowing the party horns. It's so incredible to see him with his version of dance moves. Trust me, mine aren't much more sophisticated. It's not just the happiness and joy that music and movement bring him, but it's the coordination and all those years of therapy that enable him to do something like this that he likes with other people. He can actively participate instead of hopping around the floor wishing he could do what others are doing.


All in all, it was a fantastic afternoon. I got my bucket filled from seeing the incredible effort our staff put into this party and the enjoyment of all those who attended. Teddy was welcomed with open arms and was such a good listener (although he preferred my co-worker to me because she let him explore more than I would have).

Teddy modeling in the photo booth.
Teddy finished the afternoon by pushing the button to open the doors for people who were leaving. That was a compromise to him pushing the button and running outside away from me, so that's a win-win.

I did make Teddy promise not to tell AJ how much fun the party was since I downplayed it because I only wanted one child maximum to allow me to be somewhat useful. I'm confident Teddy won't say a word, and he brought home tons of beads for AJ.

Friday, March 1, 2019

Rare Disease Day 2019

Well, if it was leap year this year, I'd be on time with my Rare Disease Day post because it's always the last day in February. But, it's not leap year, so I'm a day late.

Some years, I'm on top of things for Rare Disease Day or World CDG Awareness Day (May 16). Some years, I'm not. I did awesome last year for World CDG Awareness Day, so perhaps I'll aim for awesome again this year.

This year, aside from sharing a Facebook post from a past year, I did nothing to celebrate my rare and wonderful Teddy.

I did, however, get him dressed and ready for school. I helped him get on his bus and buckled him safely in and gave him a kiss before he headed to school. I left work early to go to his IEP for which I feel I prepared horribly. I managed to hold it together through the IEP with only a stray tear because I just couldn't stand how irritated and inconvenienced his speech therapist looked to be there, how she dismissed his third goal she's been supposed to be working on all year as not appropriate, so she didn't bother working on it or how she doesn't even know how to use his talker. I made nachos for the family for supper. I played magnets with Teddy after supper. We read stories as a family, and I told Teddy I was so proud of all he's learning.

There's always World CDG Day to be awesome again. Until then, we'll keep trucking along with rare, ordinary days.