Report Card Time

It's that time of the school year where report cards are distributed. As a child, I loved getting my report card and seeing my effort and accomplishments given letter grades. I liked to learn, and it came fairly easy for me, although I certainly had to put forth effort to earn my grades.

Ironically, I had fears when I became a parent that I would struggle with a child who didn't do well academically. And now I'm the proud parent of Teddy.

Report cards look a bit different now, using a scale of 1-4, with that mythical 4 being the highest. I've yet to see a 4 on a report card through second grade, despite having a child who can read all the words on the 5th grade reading test. I've seen plenty of 1s, though, as that's nearly all that Teddy's report card contains.

When I was a child, I was graded on both achievement and effort. Even when a child struggled with the material, a A could be given for effort if that child was trying to do the best work possible. There's no grades for efforts now, and Teddy's graded on the exact same metrics as every other first grader.

His report card wants to make me laugh and cry at the same time. I chuckle because how can he actually get anything more than a 1 for social studies? But I want to cry because it just seems mean that a child who cannot talk gets a 1 for his ability to sing. That isn't a fair category for a non-verbal child.

Report cards sting only for a day or two, the day we get them and the day of parent-teacher conferences. Because they're just numbers. They don't reflect the effort, work and true progress that Teddy puts forth and makes each day. I know that, and so does his team.

His music teacher clearly wanted to share some positive regarding Teddy, despite him receiving 1s for nearly everything. (He got a well-deserved 3 for interacting appropriately with music. It's a hoot to see that boy dance.) She said:

Teddy loves to participate in music class. He loves to participate by playing instruments and moving to the music. Teddy is always eager to take his turn. I never need to ask him twice to take his turn for any activity. He can hold all instruments with a strong grip from large drums to skinny mallet sticks. Teddy can play a steady pattern on percussion instruments, as long as it is a tempo he chooses. Teddy will continue to practice moving to music appropriately. He can perform all actions (pat legs, jump, touch toes, clap hands, etc..) with assistance at the start, but Teddy struggles to walk or march in a circle for more than a few seconds. 

I love how she focused on the fact that he's eager to take his turn, not the reality that he probably struggles when his turn ends sometimes. I also laughed out loud when she gave him credit for playing a steady pattern ... as long as he chooses how fast or slow he wants to play.

I reached out to thank his music teacher for her comments because it is clear that she wanted to share positive feedback for Teddy, and I recognize that it must be hard for his team to give him 1s when they clearly see how hard Teddy tries in so many ways. (They also see when he's stubborn and has no interest in following their agenda, so don't think I don't realize that.) She's a first-year teacher who's doing an amazing job (remember how Teddy was included in the holiday concert) and appreciated hearing from me.

We've often said that although we want Teddy to reach his full potential academically, we're far more concerned with him being loved, accepted and valued for the awesome child he is. He has that at his school, and we're extremely grateful.

Winter Wonderland

My favorite snowstorms are the ones that happen on a weekend when we have no plans. We get to take our time to shovel and remove the snow and play along the way. (Oh yeah, let me add in there weekends when the temps are reasonable.) We had one of those weekends.

Teddy loves to play with shovels and brooms, so he wanders around when them in tow. He also loves to help snowblow with Dave, which is safer than him wandering in front of it unpredictably. As long as our neighbors' garage doors aren't open, we're usually pretty good about Teddy staying in the driveway ... or at least a neighbor's driveway or the cul de sac, which is perfectly fine in my book. Line of sight and closest enough to chase him when needed.

We spent about an hour outside shoveling in the morning, headed inside for lunch and a few projects. Then we went out to enjoy the snow with sledding and tubing. We have just enough of a hill to sled nothing too exciting but enough for the boys. As an added bonus, it's not that tough to walk back up the hill. Heck, even once Teddy walked all the way back up carrying his own tube!

The neighbor boys sledded with us a bit and then brought out their snowboard. I got to try it out, successfully making a few runs. Then Teddy indicated he wanted to try it, so I helped to get his feet in place and ran down the hill alongside him. He balanced really well until we got going too fast and tripped before he biffed it. He loved it, and we did it one more time where Dave got a video.

This made him happy, and it made me so darn happy. I was able to help give him an opportunity that normally wouldn't happen, something he wouldn't be able to do otherwise. 

And, this, my friends, is why I live in Wisconsin. 

I Spy ...

Two years ago at NIH we had Teddy's eyesight evaluated during our intensive studies at the National Institutes of Health. We were perplexed as to how they'd evaluate his eyesight, given that he's non-verbal and not inclined to follow instructions, whether that's because he doesn't understand them or doesn't care to do others' bidding. They used a few tests that involved where he directed his attention, but much of the testing they did under sedation.

To be honest, testing Teddy's vision wasn't high on our list of priorities. But during AJ's last checkup, I asked a few questions about whether it was worth having Teddy evaluated. The thought of coercing Teddy to wear glasses makes me cringe, but there's so much more than sight that they evaluate. Our eye doctor, Dr. Ames, made me feel comfortable enough that he'd be able to get valuable information from evaluating Teddy, even if Teddy didn't want to cooperate for the tests. I set the appointment for nearly two months in the future, enough time that I didn't need to worry about it. (And I justified it by saying that it would be two years from his last evaluation.)

Well, those two months passed, and the four of us went to the eye doctor with Teddy last week. We felt it was best to have both Dave and I there to help coerce him to cooperate and get the best results. Pretty quickly, the first person evaluating him for the initial tests determined that it was best to bypass all those optional tests and head straight back to a room ... after only about 2 minutes of attempting the first test. The second we walked into the exam room, Teddy melted into the floor and began whimpering. That wasn't surprising, given that he's skittish about medical things ever since NIH. 

When we tried to sit in the exam chair, it required me to physically hold him on my lap against his will. So I let him go and said we could get him back in the chair when needed. He settled once he got in the furthest chair away and then proceeded to rotate chairs, including his wheelchair. We said we could get him back in the exam chair, and Dr. Ames reassured us that he's done exams under chairs. He'd do the exam wherever Teddy was comfortable, and he just continued to allow Teddy to move from seat to seat and continue the exam.

To test his sight, since he can't tell us whether A or B is better, much less sit still for A or B, they use this contraption they hold that has flashing lights and music to get his attention. When he looks into the device, they measure his eyesight to gauge prescription. Then the doctor confirms that prescription by holding different lenses to Teddy's eyes and peer into his eyeballs. 

Teddy cooperated really well for the bright lights to look into the back of his eyeball at his optic nerve. So we got some gauge on his overall eye health and an actual prescription to boot. He's apparently 3.0 for farsightedness and 3.0 for astigmatism, so that balances out to a 1.5 for a prescription. The doctor tried some space-looking spectacles on Teddy to see if he'd focus better on a video when he could see better, but he immediately took them off and had no interest to wear them.

So, our plan is to evaluate Teddy again in 6 months to see if his vision is the same. That'll allow us to verify that the original readings are accurate, that he's not outgrowing his farsightedness (which often can happen in younger children) and that he's not worse. I imagine we'll likely try the spectacles again and be encouraged to get glasses for him. 

I know several other PIGN kids have glasses and learn to tolerate them remarkably well. We've been told that if it makes enough of a difference that people tend to tolerate glasses, even those who wouldn't normally. We'll worry about that and cross that bridge when it comes. (My friend had a mini breakdown on my behalf at the thought of making Teddy wearing glasses. She calmed down once her husband reassured her that Teddy will take any advantage to continue making as much mischief as possible.) 

It's amazing that they can test vision without a person saying a word or really even following instructions. It's even more amazing that we found an eye doctor who is so caring, compassionate and flexible in doing his job that he made something we were dreading into an experience where we all left with smiles. 

Wunderbar

There are so many blessings that come in life with Teddy, and one of those is the friendships and support from our PIGN community. We're a small group of perhaps 50 families at most, so several of us know many by name. We root for each other, we pray for each other, we celebrate successes and shed tears for losses. 

This week we got a package from Germany. A mom there found my blog not even a year ago, but it feels like we've been friends for much longer. We connected instantly and have been "pen pals" via e-mail, sharing updates, pictures and videos. 

As excited as we were about everything in the package, including even the newspaper because it's written in German, of course, what's inside didn't matter as much as the thought, love and friendship behind the package. It was a hug in a box that thankfully the German postal service managed not lose forever, although they misplaced it for a while. 

Teddy was excited to get the package. 

Now, as we're sampling German Christmas cookies, we're feeling the love from Germany. AJ already built his LEGO set, and we have delicate ornaments that we'll always remember how we got them. Our favorite item is Teddy's little V-tech train that goes perfectly with the rest of his collection. Except this one speaks in German and has feuerwehrauto written on it instead of firetruck.

Of course he licked his feuerwehrauto.

The excitement of the German package led AJ to bring home a new library book from school the following day: My First German Words. Gosh, I love that kid's desire to learn.

AJ was a bit disappointed there was no German writing on his LEGOS.

So much good has come of Teddy's diagnosis, although sometimes it's tough to appreciate that in the tough moments. But this is a clear reminder that our world is not that small, and we're not in it alone. 

What a Week!

I know I shared a post about a morning in my life the other year. I'm not going to lie. I'm mildly exhausted just re-reading that. I thought I'd share the highlights of last week, simply because it was a doozy.

Monday
Monday was a Monday in the truest sense of the word. Dave said, though, that Monday morning put his entire week into perspective because, well, it couldn't be as bad as Monday morning. I was just about to take a shower when Dave informed me that he needed "a little help."

Let's say Dave and I have different ideas of what "a little help" means. In this case, it meant Teddy had removed his diaper, discovered homemade brown play-dough (as someone else said almost making me spit out my food laughing) and smeared poop into his carpet, all around his door handle and on his body. Even better was when I stepped in the room, and Dave warned me to be careful because there was poop everywhere including the door knob I had just touched. Just a bit late with that warning.

I'm grateful Dave was there to discover the mess. He showered again ... with Teddy ... while I scrubbed and sanitized the room. And then I showered, but a shower doesn't quite fix that.

Oh, and Monday was also the day we learned we didn't have staff, so I had to leave work early to be home when Teddy arrived home. On the bright side, that gave me time to work on multiple loads of laundry that I had to do for some reason.

Tuesday
I feel like Tuesday was uneventful. Maybe I'm blocking what happened from my memories, but I'm pretty sure I'd repress Monday instead of Tuesday.

Wednesday
We learned that Teddy will be featured in a research paper/presentation at a genetics conference in March! Someone had reached out several months ago, inquired if we'd be interested, and we supplied a bunch of information. Her proposal was accepted, so she informed us and requested photos to use.

We're super excited that there will be updated information on CDG-PIGN because there's so much more positive than what the original research shows. Any research can help to raise awareness, and we've only been waiting since Teddy was diagnosed in 2015 to get him into research. Our genetics team went through some changes and is incredibly backlogged ... as in I'm not sure it'll ever happen.

Thursday
Remember how Teddy's doorknob got covered in crap earlier in the week? That meant I threw out the child safety lock because it was packed with poop. On Thursday night, AJ ran downstairs to grab something for me right before bed. I locked Teddy's door from the outside to keep Teddy from following AJ, knowing that AJ would be right back to unlock the door. AJ returned, we read stories and then AJ discovered he locked us all inside Teddy's bedroom accidentally when he returned.

Some of the first words out of my mouth, "You better make yourself comfortable. We're going to be here a while."

I am not good with door knobs. I can manage, but I don't like to take them apart, fix them, etc. I had no phone to call for help. Dave was gone for several hours yet. I didn't even have a phone to Google guidance. But I did have a screwdriver and sheer determination to get out of that room and get those kids to sleep. I succeeded with only minor tears from AJ and almost me.

Friday
Kids are at school. I have the chance to catch up on a few things, including finishing a sewing project. I made a weighted blanket for one of the other families whose son has CDG-PIGN. Actually, both their sons have the disorder. But one of the boys struggles to settle to sleep, similar to Teddy. (I joke with this mom that she's living my future life, so she can win the lottery any day now, so my day would be coming in 10 years.) She had mentioned wanting to try a weighted blanket for him, so I made one since I have the supplies on hand. I can't do everything for our PIGN families, but it fills my bucket to help any of them in any way I can. It's not an easy path we're on, but it's so much easier to have others who walk the path with us, ahead of us and behind us.

Saturday
It was a long 6 hours in a car to get to and from our niece and nephew's fun birthday party ... plus chasing Teddy there. So to relax we settled down to paint our entire kitchen and living room ceilings. Wait, that's not relaxing, but it's a project that's been years in the making, so it was on the docket for the weekend. When Dave went to the store to get better supplies (as in a ladder instead of a rickety chair that would be the death of one of us, leaving only one of us to finish all the work and raise the children), I determined the thumping sound upstairs was Teddy still awake. I discovered this when checking on him:

His room wasn't possessed by ghosts, but he had wiggled under his fitted sheet. He hadn't ripped off a corner to crawl under, just wiggled inside. I determined I should pull him out to avoid suffocation through the night, which then necessitated laying by him until he fell asleep. I might have told him that was way better than painting the #$%# ceiling.

Sunday
We finished the ceiling. All rested, relaxed and ready to start another week. Well, let's just say another week is starting even if that's the only true part of that sentence.

The Best Brother

I know I've said it many times, but we're so blessed to have AJ as Teddy's older brother. Now, some of AJ's awesomeness comes from 6 years of living with Teddy, so certain aspects of helping and interacting with Teddy are second nature. But AJ still has a huge heart, tremendous passion and a desire to plan things to perfection.

Tonight AJ spontaneously started helping Teddy write the letters of his name, doing hand-over-hand with Teddy. This started while I was making supper and they were in the other room. AJ told me what he was doing (although I could figure it out from AJ's prompts to Teddy), so I captured a video without AJ realizing it. (I almost got busted when Teddy noticed, but AJ was able to redirect Teddy's attention ... sort of.)

This was only the start.

As soon as Dave walked in the door after work, AJ was at his side to show him what they had been doing, proud of both his and Teddy's efforts. Then AJ concocted a plan for working with Teddy on a regular basis to help him learn his letters, spending a few weeks to master Teddy and then moving on to Theodore. (We suggested perhaps we focus on Teddy and not worry about Theodore yet.)

He asked to use the computer to create worksheets for Teddy to trace letters. Now he has three week's worth of worksheets that he plans to do with Teddy, a bit at a time, to help him learn.

Perhaps the best part was that Teddy was so receptive to AJ helping him that he actually stayed and focused and didn't wiggle his hand away. We'll see how long it lasts, but I love AJ's spirit and kind heart.

It's a New Year

New Year's has never been my favorite holiday. Years ago it was because I was an old soul who'd rather be in bed and didn't understand the fuss of staying up eating and drinking until a certain time. The new year would still be there when I woke up the next morning anyways.

Then six years ago our lives changed forever on New Year's Day when Teddy had his first seizures. It's hard to go through the holiday season without reliving at least some of those memories. I remember the terrifying moments, but I also remember the love and support from family and friends. That's the fortunate thing is that every bad is accompanied by some good, the silver lining in every cloud, so to speak.

Still, the holiday season puts us on edge a bit, Dave more than me, but we're both on edge by this point in the holiday season. Then when you throw in a night away from home where Teddy screams himself to sleep eventually (after sucking out any desire to do anything but sleep yourself for whatever time you get), a deflated air mattress (because we have horrible luck with air mattresses) and Teddy awake for the day at 4 a.m. ... I'm not even sure how to finish that sentence. Dave and I have a system, though, that involves Dave fighting through the bedtime struggle and taking early morning scenic drives through the Northwoods in the pitch dark for a couple hours. I tackled the night, wrangling Teddy on a deflated air mattress and then morning duty while Dave caught a good nap.

As I trailed Teddy outside in the winter wonderland, I struggled though. I kept repeating in my mind, "Comparison is the thief of joy," which is a favorite Theodore Roosevelt quote of mine. I enjoyed my time with Teddy, both of us bundled up appropriately, laying under snow-covered trees, chasing cousins and going for rides on the sled. I struggled, though, because we're the only ones who have to be outside for our child to play safely outside. All the other cousins, including those younger than Teddy, can play outside on their own. That means their parents can relax inside, go for walks on their own, hang out at their own cabin without a real worry about their children. And we can't. One of us always has to be on.

Now, don't get me wrong. Our families are great that they will indeed watch Teddy, and Dave's mom will frequently watch him up north so we can go for a walk or his dad will take Teddy for a 4-wheeler ride (when it's not 0). The aunts and uncles all pitch in and look out for Teddy. But it's still always our responsibility without an ask and we never want to be an imposition.

That, and sometimes the cousins are absolutely great with Teddy, including him in their play, asking him to come play with them and showing him their snow forts. And then other times the cousins end up in tears when Teddy opens their gifts or there's a chorus of "No, Teddy!" or "I don't want Teddy to follow me!" Sometimes the "No" is deserved, and sometimes Teddy's doing absolutely nothing wrong or not even in the near vicinity. There's also the "Teddy is a baby." And all the adults do their best to explain and redirect, be it Teddy or the others. I understand completely that interactions with Teddy are challenging at times because he doesn't understand all the social norms. It still is hard for me at least. 

So, this isn't very much of a happy New Year's post, but it's real. And I know this is much harder for me than it is for Teddy. In his mind, he got to see his cousins and family and two dogs and eat a lot of good food and go for an extra Tahoe ride with his dad. Not a bad two days, right?

Teddy loved the fireworks, especially the loud ones that startled all the other kids!