Wednesday, August 31, 2016

Another One of Those Days

Today has been another one of those days ...

5 a.m. I wake to Teddy fussing. I attempt to ignore him, hoping he'll settle back to sleep on his own.

5:15 a.m. I give up and decide to take a quick shower, so I can settle Teddy down while Dave leaves for work.

5:20 a.m. Dave lays down with Teddy.

5:30 a.m. Dave asks me to get the thermometer. Teddy's temperature is over 100ºF.

5:31 a.m. Teddy gets Tylenol, is stripped half naked, gets cold compresses applied, gets his Keppra, gets a stuffed animal from the freezer to snuggle and gets lavender and peppermint essential oils applied.

5:50 a.m. Teddy settles back to sleep in Dave's arms downstairs. Dave insists on staying home at least until Teddy wakes up. I alternate between standing beside them staring worriedly at Teddy and putzing through the house and picking up things.

6:50 a.m. AJ wakes up. (Of course, this is the type of day that he sleeps in this late.) AJ helps me with laundry, picks up a bit of his room and packs his backpack for school. Then he plays Legos.

7:45 a.m. I begin making pancakes for breakfast since AJ loves them and rarely gets them fresh on weekdays.

7:50 a.m. Teddy wakes up. He crawls down to the floor and hops around, which is a positive sign. He seems much cooler.

8 a.m. We eat pancakes for breakfast, AJ is thankful Papa is home yet from work but sad Teddy isn't feeling good.

8:20 a.m. Dave leaves for work.

And after that, let's see ... AJ played really nicely with Teddy for a while. AJ picked out some toys that I traded him money for him to donate to Goodwill. He got $1.10, and I got a box partially filled with items leaving our house. Then AJ headbutted Teddy, and that's where my day went from bad to worse. Removing tablet privileges for the day ... and now rest of the week due to continued whining and fits ... makes for a tough day. AJ drew pictures of him mad and sad to show me how he feels. (Mine would be foaming at the mouth with hair standing on end, just for the record.) Teddy refused to nap despite being miserably tired ... until he finally went down about 20 minutes ago.

As trying as these days are, I'll gladly accept them (and complain about them here) as long as Teddy doesn't have a seizure. That continues to be our prayer for today.

Tuesday, August 30, 2016

What's the worst that could happen?

Teddy's open house went well tonight, and we got to meet his teacher and her assistant and his OT, PT and speech therapist. They all seem very nice and competent, and I'm sure they'll fall in love with Teddy. (And, yes, I gave them all a copy of his letter.)

But with school starting in two days, I feel like I've pushed all my worries and fears about school about as far back as possible. So I thought it might be fun to put together a mostly comprehensive list of all my fears and worries ... and then I can check them off if/when they occur. (I know, I need better hobbies.)

If I could fast forward a week or two, I'm sure things will be fine. But for now, here's my list:
  1. I won't know exactly what happens, both good or bad, because Teddy can't tell me.
  2. Teddy will have injuries of unknown origin. 
  3. There's 6, soon to be 7 children, in his classroom with one teacher and one teacher assistant. One of those children is Teddy. You do the math.
  4. Teddy will disrupt the learning environment for the other children because he'll require more attention than anticipated.
  5. Teddy will be the most challenging child in the class because of his delays.
  6. Teddy will lack skills that all the other children in his class have.
  7. Teddy will sit on the other children ... or tackle them ... and then sit on them.
  8. Teddy will bite the other children (but in his defense, this probably only happens if they put their body part in his mouth).
  9. Teddy will find a way to climb into that little window I saw in the classroom.
  10. Teddy will climb everything else in the classroom.
  11. Teddy will eat the books.
  12. Teddy will fall out of the chairs.
  13. Teddy won't follow the instructions and will not comply with classroom activities.
  14. AJ isn't there to protect Teddy, translate for Teddy or report back to me.
  15. Teddy will escape the 5-point harness on the school bus.
  16. Teddy will be a miserable cuss on the 40-minute bus ride.
  17. Teddy will destroy many things in his classroom. 
  18. Teddy will have a seizure at school.
  19. Teddy will have a seizure on the bus.
  20. I'll be that mom.
Hmm, only 20 things. Why does it feel like so much more to worry about? The reality is in two weeks, this will all be a moot point. Many, hopefully most, of these things will never happen. We'll develop solutions for the few fears that become reality. Now to survive the next two weeks ...

Monday, August 29, 2016

Hey Mister DJ!

Teddy discovered his vocation this weekend at a wedding reception. He is destined to be a DJ. Or to stare and smile at DJs ... repeatedly ... at least 20 times in a night.

We attended a wedding reception for Dave's cousin this weekend, and both our boys loved the "dance party" as AJ called it. AJ danced with mostly with his cousins, including a slow dance with one of his cousins, which was adorable with the slow awkward side shuffle step that his dad (and honestly, I) still use.

Teddy was in his element from the moment he was released from his Kimba Kruze after dinner. He loves being around people, so having 150 people in a room is pretty fun for him. He put on many steps, leading whomever around the dance floor, weaving in and out of people. We tried to get him to dance a bit here and there, but his version of dancing was racing across the floor.

He kept circling back to the DJ booth. He'd stop, stare and smile at the DJ. Then I'd lead him back on the dance floor. He'd go past the front of the DJ booth, turn it at the other side, stop, stare and smile at the DJ. Then I'd lead him back further onto the dance floor, and we'd make a lap or two before visiting the DJ again.

I was slightly worried when the dancing began with the strobe lights and flashing colored lights, even though nothing like that has ever been an issue for Teddy with seizures. Thankfully, my biggest worry ended up keeping up with him as he explored everywhere.

The wedding was way more fun than I anticipated (as I had expected it to be a lot of work to manage Teddy). I knew AJ would have a blast with his cousins, as he'd been practicing his dance moves for a couple weeks. (He also panicked that morning when he couldn't find his clip-on tie because he "wouldn't look snazzy enough." Don't worry, we found it, so he looked the appropriate amount of snazzy.) AJ even ordered his first drink at the bar by himself - water with a sword of cherries. I hadn't realized how much fun I'd have watching Teddy and AJ in their element.

Congrats Tracey and Eric! Thanks for a great evening.

Wednesday, August 24, 2016

Smiles ... Teddy's Secret Revealed

Ironically, I think I discovered the secret to why Teddy has the most amazing smile in an article entitled "Three Secrets of the Most Well-Liked Speakers." According to this article, the first secret is to smile radiantly.

Radiant describes Teddy's smile perfectly (and the smiles of other children with his diagnosis). The article explains a bit more about the type of smile (out of apparently at least 17 varieties that exist) that helps people be most successful when speaking.

"... the one that's most effective at communicating genuine joy is known as the Duchenne smile named after the 19th-century French scientist Duchenne de Boulogne. Duchenne smiles are characterized by raising the corners of your mouth and cheeks in a way that cinches the crow's feet around your eyes. In other words, it isn't just something you do with your mouth—it transforms your entire face. The timing of your smile and its connection to your speech and behavior are also hallmarks of these genuinely radiant smiles."

Teddy's smiles transform his face. They are radiant. They communicate genuine joy. And I would make the argument, because I'm his mother, that his smiles are timed and connected to others as his way of communicating and connecting with them. Even though he's by definition still non-verbal, he's mastered one of the secrets of most well-liked speakers.

And I've found the name for Teddy's smiles. That makes me smile.

Monday, August 22, 2016

3 Year Pictures

It only took us a month or so to take Teddy's 3-year-old pictures. He didn't mind waiting ... and the pictures were well worth the wait. It's amazing how much of his personality and zest for life you can capture on camera in 10 seconds. Realistically, that's about how long he held still before he'd make a beeline for the stairs to climb them and see where else he could go explore outside. Here's the incredible adorable boy who is responsible for my increasingly buff arms, a good dash of worry, plenty of prayers, a full heart, and most days, a better perspective on life.

This is pure Teddy. Smiling and slightly on the move, given the artistically blurred foot.

Smiling yet almost serious for Teddy.

What in the world are you doing Mama?

His smile reflects his pure joy.

Let's just say AJ was helping edit this picture: 3-eyed Teddy Monster.

Tuesday, August 16, 2016

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 15th 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 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.

Monday, August 8, 2016

Birth to Three

Before Teddy turned one, we were referred to our county's Birth to Three program, which is the early intervention program in Wisconsin. I distinctly recall the first assessment where Teddy was his happy Teddy self to be assessed by three pretty ladies but supported himself similar to Jello without a mold. We were happy to have some supports in place for Teddy and to receive direction on how to best help him, but we were also nervous because this was our first foray into any type of supports beyond medical visits.

For me, it served as a reality check that my child qualified for supports. (Let's just say he didn't barely squeak through the screening requirements ... there was no doubt he qualified.) It was hard to read the first reports that showed how significant his delays were in each and every area, barely registering at all on at least one of the scales. As heartbreaking as those reports were, we were also excited to see what Birth to Three would do for Teddy.

As it turns out, Birth to Three became perhaps one of my favorite therapy visits, if for no other reason than these appointments were the easiest. Teddy's team came to our house. At first, I worried about having a clean house and eventually settled on a house with the toys mostly picked up in the room where we'd play ... most of the time ... then some of the time. These appointments carried the least amount of stress because the team always asked if there was anything else we needed and often pointed us to resources we didn't know existed.

My absolute favorite part, though, was how excited they were for each and every one of Teddy's accomplishments. It felt like his outpatient therapists were pleased when he hit a goal but immediately set a new one. I understand that's what funding requires, but I just wanted to enjoy the moment. Birth to Three was where it was pure celebration for that day instead of "Here's his next goal."

When I look back at his first Individual Family Support Plan, I read his first goals we set for him: to support himself while hiking in a backback carrier, highchair or sled with AJ's assistance. Teddy got himself into a sitting position independently the first time on his first birthday, and how far he's come since then. I remember him slumping to the side in his highchair and re-positioning him multiple times each meal to an upright position. Now, this same little boy is walking nearly across a room by himself.

When Teddy's Birth to Three team asked if we had any questions on his last meeting before his birthday, my reply was, "Can't we pretend he's not turning three?" They laughed, but we all felt the same way. They've been some of Teddy's biggest supporters, but in a month he's off to school to see what other amazing things he can do.

Thursday, August 4, 2016

Fine Motor Mess

Yesterday I was putting away laundry upstairs, and Teddy was upstairs with me. I know there's a few more things he can get into upstairs, such as eating books if he gets hungry while reading them or opening cupboards to find interesting things. I heard him playing in AJ's room, and then he went into the bathroom and shut the door. (He doesn't shut the door for privacy. It's just that he likes playing with doors.)

As I opened the door to check on him a few minutes later, I was really hoping he wasn't splashing in the toilet. Thankfully, he wasn't. Instead, he was working on his fine motor skills, and I really applaud his initiative to do therapy exercises all by himself.

He unscrewed the lid from the red bath soap (that resembles finger paint) all by himself. Then he squeezed soap out of the tube with enough force to splatter it several feet away on the wall. He also applied a good amount to the counter and was using his hand, and isolating his thumb, to swipe through the paint.

Check out that thumb swiping!

What a tremendous amount of fine motor skills he used! I was equally impressed that although he had plenty of soap on his face, he didn't appear to have intentionally eaten any of it.

He was mighty pleased with himself, rightfully so.

With a few minutes of wiping up with a bath towel, all the red soap was removed from the bathroom. I didn't wash Teddy off because we were 10 minutes from leaving for his annual checkup, so I just wiped the visible soap on him. He played in his swimming pool yesterday afternoon. Soap in the morning plus water in the afternoon ... sounds like we can count that as a bath.