Neuropsychological Testing ... Yet Another Thing I Never Knew Existed

I've always thought of myself as a person who is fairly well read with a solid vocabulary, but I quickly learned there's a whole lot of words I've never fathomed that I now know well enough to use accurately. Take neuropsychological for example. It sounds like a made-up word, like someone smashed two familiar words like neurology and psychology together.

But it's a real word, and today I used it in the context of Teddy having several hours of neuropsychological testing done at Children's Hospital in Milwaukee. Essentially, it's testing to evaluate where he is from a skills standpoint done through parent questionnaires, teacher questionnaires, specific activities to complete in person under the guise of play and then evaluation of  unstructured play with familiar faces. The purpose is to help us best understand Teddy, how to support him and to advocate for additional resources at school as appropriate. If I'm being honest, the last is probably my biggest hope, although there's some behaviors and the non-existent toilet training that were also discussed.

The testing went perfectly well today, as in Teddy was agreeable, in a good mood and typical Teddy. So his scoring should be accurate and give a good snapshot of who he is. He traveled well for the 3 hours of car rides for the appointment, handled the several hours of testing like a champ and even managed to get through the waiting room without making a spectacle of us. (Trust me, my level of acceptable social behavior for Teddy is much different than that standard for AJ, so we still get looks everywhere we go.)

But it was tough. I cried as I filled out the questionnaire I had to do today because it just sucks to see in black and white all that your child cannot do that others his age can do. I know it because it's our reality every day, but we get used to our reality and ignore the stark contrast. Filling out a form and checking only 3 boxes on a list of 25 or more items that Teddy can do is demoralizing ... and that wasn't even the communication page, which is usually the area Teddy lacks the most.

This is one of the many pages of fun forms. 

Hearing that he's made progress since he was tested almost two years ago is great ... except that progress still puts him at less than a 2-year-old average across the board. My goddaughter who turns two in February will pass Teddy in every skill by her next birthday, and that just sucks. It sucks because I know how damn hard he works for every bit of that progress, the 5 years of therapy it's taken us to get to that functioning level, the things we do every day to help develop those skills and how much I wish I could make life easier for him.

I don't want it to sound as though I'm in denial because we know who Teddy is and how severely affected he is with his CDG-PIGN. At the same time, though, hearing the words intellectual disability is like a solid kick to the stomach. It takes all my willpower to keep the tears in my eyes from rolling down my cheeks .... not because it's a surprise, not because I don't know that already, not because the doctor is mean, but because that just hurts to hear as a parent.

As parents, we want the best for our children, and sometimes it's so hard to understand how this can be the best for Teddy. That's why there's others who help us see the light on these tough days without them necessarily realizing it. My aunt came to visit as we were scheduled for several hours of testing. We got a brief visit, and she entertained Teddy while the doctor and I debriefed. And when I got home, still feeling down, I read her Facebook post (and stole her photo):

"A funtastic play date with Teddy this morning when he was here for his annual evaluation. I can’t describe the joy I feel to see his face light up when I walk into the room. He is a blessing."

The smile that lights up a room.

Without a Word

When I picked Teddy up from school on Friday for music therapy, the administrative assistant in the office told me, "Teddy is just the sweetest boy." She proceeded to explain that sometimes she helps get Teddy into the building in the morning if no one else is available. She said that when she opens the door and informs Teddy he's stuck with her that he lights up with his smile every time. Then she said that every time it makes her feel special and brightens her day.

This kid brings so much joy (along with all the stress).

That's the type of enthusiasm and joy Teddy has for life. When I came home late one evening this week and walked in the door, Teddy literally started jumping up and down because he was so excited to see me. Who else jumps for joy just to see you on a Thursday when they saw you 12 hours earlier? (I'm not going to lie. I still love that he can jump.)

The school nurse was also in the office, and I commented that I heard she had Teddy's kindergarten teacher visit while Teddy was at her office for his lunchtime medicine. She chuckled and said Teddy was pointing at her office chair that day, so she realized he wanted to sit in her chair. She not only let him sit in her chair, but then she pushed him out of the office and down the hall to his class. What other child could convince an adult to give them a ride down the hall like that ... without saying a word?

Before I left the office, Teddy's principal introduced herself since we've been chatting about the support and inclusion opportunities at Teddy's school and whether they have enough resources. She echoed their sentiments about how much she enjoys Teddy.

What was part of my routine every Friday was made special by others sharing how much they enjoy Teddy. And that is my ultimate goal for Teddy at school: I want him to be loved and accepted for who he is and what he can do. And it's clear that he is.

Happy Dance

Today we got this e-mail from Teddy's case worker:

Hello Kerry,   Great News. The Family Support Team approved long term support funding for the Axiom Race Chair!   Everyone wants to see a picture of you and Teddy in action after you receive the chair  J  I will talk with Adaptive Star next week. 

And then I proceeded to do my happy dance. This means that we'll have a way to go biking next summer as a family because there's no way that Teddy would still fit in our pull-behind carrier because it was a squish to get him in there this year. This means that Teddy and I can go for a run on the weekend together or join the local running groups who do evening runs. We tried a few times this summer, but the running stroller I have is not meant for a large 6-year-old. It barely worked until the last run we did, which was our last run with the stroller, because Teddy learned that it makes a cool sound when he drags his foot on the ground. It also feels neat ... until he breaks his foot or ankle.

The Axiom Race Chair is essentially the same chair Teddy uses when he races with myTEAM Triumph. We can (and will) order a chair large enough that it should last Teddy for years to come because he's ridden in all different sized race chairs. The same chair can be used for racing as well as being pulled behind a regular bicycle.

This is such a blessing for our family!

Win-Win-Win

This weekend Teddy and I spent a day together while Dave and AJ took care of a few things down at the land.We had quite a bit of fun snuggling, playing waffle blocks and generally goofing around, but it's nearly impossible to have a good day and a productive day with Teddy. A good day isn't productive. A productive day isn't good.

So, one of our friends' daughters came to hang out with Teddy for a few hours to give me a chance to get some fall projects done. My exciting alone time was pruning bushes, bagging yard waste, mowing the lawn with a hat and mittens, cleaning out the garden for fall, digging up flower bulbs, etc.

Meanwhile, Teddy was having the time of his life with his friend, who we'll call Alexa since that's what our Amazon Echo thinks we say each time we say her name anyways. Teddy adores Alexa because she plays with him. It's that simple, yet that hard. She spends the time playing with him each time she's at our house, following his lead and letting him direct their play. She does his bidding, and he thinks she walks on water. She's phenomenally patient with him, helpful when he needs it and even got him to lay nicely to get his diaper changed instead of squirreling away like he usually does.

Even on the car ride to take Alexa home, Teddy couldn't stop giggling and smiling at her because he loves her that darn much. He convinced her when we stopped at the grocery store to move right next to him instead of leaving the middle seat open between them.

I told Alexa that if she ever questions her self worth, which she shouldn't, that she just needs to remember to think of Teddy and how he sees her. It's hard sometimes in those teenage years to remember your worth and value ... but there's no doubting that if you've seen how Teddy looks at her.

It ended up being a great day. I got a couple hours of much-needed yard work done. Alexa got a self-esteem boost. And Teddy had the greatest time hanging out with his friend. 

One of the Tough Things ...

Scrolling through Facebook today reminded me of the same thing an e-mail did yesterday ... I can tear up for people whom I've never met simply because our children share the same diagnosis. The pain they feel, whether it's 9 years after losing their child, I feel. The emotions that go into whether to have another child, I feel as well.

Since there's so few of these CDG-PIGN kiddos, it's both easy and hard to carry a piece of each of them in my heart. It's easy because I can tell you the names and states or countries of most of the children in our group from memory, although I admit that's gotten more tough as we've added so many more families (comparatively) in the past year. But when you add one family a year, you get to know them. It's hard, though, because I feel a sliver of the pain they feel with their losses ... whether it's the things their child will never experience, the fear in hospitalizations and seizures that put life on hold, the turmoil of whether and how to have more children who may also be affected or the ultimate loss in the death of a child. And I know I feel just a sliver of their pain, not the entirety, but it's so real because it could just as easily be us. It could just as easily be Teddy.

It's been a tough week for some of our CDG families. I've cried two days in a row for families I've never met (although one I desperately hope to because of the friendship already built on shared experiences, hopes and fears).

I know we're not alone in this. Our CDG family is small, but it's the same for families touched by cancer or any other horrible childhood illness that robs children of their innocence and/or lives. It's joining a community that's incredibly tough in the face of challenges, so strong in advocating for their children, overwhelmingly supportive in times of need and understanding without explanations needed ... yet a part of you wishes you didn't need that community.

But we do because that's our life. I'm so grateful for our group of CDG-PIGN families. I'll shed my tears for them and snuggle my child a little longer because I can. 

Speed Demons

Last week we ran our final myTEAM Triumph (MTT) race of the year, Run with the Cops. It's a fantastic event that supports both Special Olympics and our local law enforcement. There's tons of police vehicles to explore, plenty of lights and sirens, oodles of glow-in-the dark stuff along the way and a rather incredible finish line food spread. Teddy's participated the past three years and enjoyed himself thoroughly each year.

This year we had the kink that Dave was out of town for work, there's no way AJ can run 3 miles and both Teddy and I were committed to running. Thankfully, one of the other Captain's moms hung out with AJ while we raced, so he had a great time with her.

Speed demons with their little devil ... and big brother.

Teddy loved his devil pitchfork that my friend Rachell gave him, as we all sported devil horns to be speed demons with him. His chair was lit up like Christmas (literally with green lights), and we finally made good use of the incredibly annoying police light/siren that he got for his bike a few years ago for his birthday. (Thanks Uncle John and Aunt Lindsay.)

It's a really fun run because it goes through the college campus, so there's oodles of college students cheering and handing out glowing items. Teddy loved his glowing antennae headband and actually did a really good job keeping it on for quite a while.

It's hard to say whether his favorite part was exploring the prisoner transport bus (because he loves buses), getting all the glow items or managing to eat two full-size donuts at the end of the race. It was a good night to be Teddy.  It was also a great night to be his mom and appreciate our village that makes these magical moments happen.

This was his first donut. Imagine his happiness at getting a second.

Super Swim Sessions

Teddy has done adapted swim classes through the local YMCA for several years now, and I know I've talked a few times about how wonderful they are. For a very reasonable price, Teddy gets matched with volunteers who spend an hour in the pool with him while I get to watch how much fun they're having and be glad it's not me wrestling Teddy.

These classes serve a few purposes:

1. There's always the possibility that Teddy will learn to swim independently one day, and this is how that magic would happen.
2. Even if he's not independently swimming, these classes are fantastic therapy sessions for him that incorporate his speech, fine motor and gross motor. 
3. Teddy loves being in water, so it's an activity that he enjoys.
4. We get a break for an hour where we get to see the joy on Teddy's face when we're not putting in all the effort, so we can truly enjoy it. (Or we can just get an hour of work done that wouldn't happen otherwise.)

We usually skip the summer sessions because we head to other pools, so we just do the fall and spring sessions. Hands down, our favorite are the fall sessions when the YMCA partners with class at the local university and has the students teach the swim lessons as the main part of their adapted physical education class. It's fantastic because there's usually two students matched to each participant, and everyone has such a great time once the students get past their initial nerves. 

He is such a lucky kiddo to have these amazing ladies as his teachers!

I heard tonight that another local college is looking at the possibility of doing the same program in the spring semester. That would be awesome because otherwise the program is largely supported by volunteers, so there's less help to go around. That's when I feel a bit bad about someone older than me having Teddy to manage for an hour by herself because, quite frankly, he's a workout. He's adorable, but he's a workout.

So, we'll see what spring brings, but for now we'll be so grateful that Teddy is matched with two young ladies who ask good questions, try different things and are already wrapped around Teddy's finger. 

The Little Things

Last night Teddy and I attempted a run while AJ was at his Minecraft coding class. There's a 45-minute window for us to run that lines up perfectly with a local running group's run, so last week we joined them, broke off early to be back in time and had a splendid time. This week, though, it was cool with gray skies and rain looming. I had checked the radar, and it looked clear for the next hour, so I thought we'd be fine.

The raindrops started before we even began running, followed by the the first lightening flashes within a couple blocks. Within 5 minutes, the rain was picking up speed with lightening and thunder quite plentiful. Teddy and I bailed as quickly as we could into a building just as the skies unleashed their full fury. Whoops.

Fortunately we were only a half mile away from where we started, and we still had 40 minutes to wait out the storm. Once the rain let up, we continued our run back to the vehicle. The streets were soaked from the downpour, and so were my feet as I ran through ankle-deep water.

I threw Teddy into the car as the rain picked up, and he was full of giggles at our adventure. See, Teddy likes the feeling of raindrops. And lightening and thunder don't faze him in the least. This was his idea of a good, fun time.

He doesn't fear the storm. He is the storm. 

After a bit of playing in the car, as Teddy kept opening the door because it was funny to have it rain inside, we headed inside looking ridiculous trying to carry Teddy and an umbrella. Then he discovered the giant gym with built-in bleachers at the rec department and thoroughly enjoyed the rest of our wait running around, giggling and exploring.

He finds so much joy in the little things. Sometimes he's remarkably chill and goes with the flow as our plans unravel and isn't disturbed by things that would concern others like rain storms or waiting for his brother to be done with class. Then again, other times, waiting is incredibly hard for him as was evidenced by the swim class that followed coding class. I get that, though, because it's hard when there's a pool right there that you can't enjoy.

So, we really didn't get much of a run, but at least Teddy enjoyed our soggy adventures.