Hiking with Teddy

We hiked before kids, even backpacking our way across Isle Royale National Park, covering 50+ miles carrying all we needed. We continued hiking when we had AJ, excitedly purchasing a backpack carrier and taking him to our favorite camping spot at Pictured Rocks National Lakeshore. When we had Teddy, we added a second carrier to our collection. As AJ grew older and more capable, he began hiking on his own. 

That's a good thing because Teddy continued to get larger and heavier to carry. He also outgrew the initial carrier we had, so we switched to soft-sided carriers and continued to upgrade to the largest size we could find as outgrew each one. We would rotate hikes, where I'd carry him one hike and my husband would carry him the next. Then we started rotating during the course of a hike, switching out to ease the workload. 

Then a pandemic hit and greatly limited the hiking and exploring we did. And Teddy continued to grow. Each time I loaded him onto my back, my husband expressed concern that I'd permanently hurt myself. When I carried Teddy for 2 miles last spring, up and down the side of a pretty steep hill, I begrudgingly accepted that was likely the last time I'd carry him that distance. 

Teddy is absolutely capable of walking on his own. There's a couple challenges in hiking with Teddy:

1. He doesn't have the stamina to walk long distances.
2. His balance is still wonky, so he stumbles and falls frequently. This doesn't phase him, but sometimes he does get bumps and bruises from these falls.
3. He's a strong-willed boy who doesn't listen well. Often he wants to go the opposite direction, or off trail completely, and just takes off running. This isn't safe, nor does it help us reach the destination.
4. When Teddy doesn't want to walk, he will simply collapse and melt to become one with the ground. He's 70+ pounds of dead weight. Unlike AJ, who could be motivated to continue hiking bribing him with M & Ms, we haven't found anything that can consistently convince Teddy to resume. 

When Teddy wants to hike, he does amazing. He is surprisingly good about balancing with rocks and roots, although I think it's just his momentum propelling him forward. It's fantastic physical therapy for him. Although he falls, he falls far less often than I'd expect. The challenge is that when he doesn't want to hike, we don't have a lot of good options.

On vacation, we did a 2-mile hike. We were able to push Teddy in his adapted chair for the first half mile (and then the last half mile on the way back) before the terrain became impossible to navigate his chair. Trust me, I'm willing to push him over rocks and roots and can cover more terrain than you might expect. But this was large rocks with steep inclines and a bridge far too narrow for his chair. 

He hiked fairly well on his own for about a quarter mile or so and then did #3 and #4 from the above list. Our nanny and Dave tried to cajole him along while I checked on AJ who had hiked ahead. Then they carried him with piggybacks, fireman carry and some really questionable techniques. So on the way back, I simply loaded Teddy onto my back rather than all the struggle. We look ridiculous, but it's not challenging to carry him short distances (less than a half mile) over relatively level terrain. And it's much easier than the non-stop struggle to get him to move on his own.

He still loves going up. Honestly, so do I.

Our hikes will have to continue to adapt. His chair will cover quite a bit of terrain, so I'm excited that we can explore using that. I've also told him he needs to learn to listen before he grows so large that I can no longer carry him ... sure hope he listens to that request. 

A Talker Named Tobii

It's no secret that communication is one of the most challenging aspects for Teddy. He's non-verbal, meaning he cannot communicate verbally. His communication skills have evolved through the years from simply crying, to looking at items he wanted and then to pointing, which was a huge milestone. He's used PECs (picture exchange communication), talker buttons and Proloquo on an iPad. He's also developed a handful of signs, which are honestly the most effective way for him to communicate beyond him physically directing us to do what he wants. 

His speech therapist, who's worked with him since he was one, suggested we demo a different device that is strictly used for AAC (augmentative and alternative communication). We have no been successful with Proloquo, which is a speech program, partially because Teddy is so interested in technology that he manages to unlock the settings, change things and swipe his way to other parts of the iPad. The other part I'll own for a lack of consistency and modeling on our part. (Modeling is teaching by doing, consistently reinforcing the use of a device and using it yourself to demonstrate how it works. It's an everyday all day thing, which is why we've failed in that area.)

She also pointed out that although Teddy is doing great with his handful of signs that a universal language will be helpful to him to communicate with everyone, including those who don't understand his version of sign. We also had conversations with some who have older children who acknowledged that as kids transition that it's critically important for their voice to be understood. Those conversations reinvigorated my desire to do the hard work required of us as a family. Also, we still have several months of COVID ahead of us where we can truly focus with our childcare providers to model consistency and help him learn the program.

So today we demoed Tobii Dynavox during speech therapy. AJ came along to learn the device, as he will serve as tech support if we are approved. That will be critical to us being successful that I won't have to spend the time configuring it and can assign that responsibility to AJ. We looked at two different models, walked through how they worked and played while using them to get an idea of how to integrate them into play. 

His speech therapist thinks he can handle this ... I trust her. 

This system feels like a huge leap because it focuses on core language (think sight words in common terms) that we use in language, in addition to objects and more concrete things. Thus far, we've only worked with more concrete language with Teddy, although he's worked on sight words some at school. This would have complete sentences, not just single words like "playground." Don't get me wrong, Proloque can have complete sentences as well, but we didn't have it set up that way. 

His speech therapist has such confidence in Teddy and sees more potential in him than others may. With her support, and our amazing childcare providers, we're going to demo this system and see if we think it will work for Teddy. The demo will either be 4 weeks or possibly 12 weeks as some insurance plans require that long of a demo before they will approve the device. From there, it's working through insurance, grants and/or his county waiver program for approval and funding. Given that we're likely at least 6 weeks out before we get a demo device, we still have a while to wait. I also imagine that it would be demo device and then a lag of a couple months to order the device and get it approved since approval always takes time. 

Here's to hoping that Tobii will become a talkative member of our family. 

Mickey Mouse

 Apparently, Teddy's ambition in life is to be Mickey Mouse. A couple weeks ago, I found his Mickey ears lying on his floor. I thought it was odd, perhaps Dave and him had played with them, and put them back up on his shelf. They stay up there since they're a lovely embroidered pair from his running buddy that would be trashed if Teddy had his way with them for any amount of time.

Then, about a week later, I was trying to juggle work calls, AJ's school, housework and keep Teddy out of trouble. Let's just say that after Teddy thought we should turn the kitchen into a water park that I determined he needed a bit of a time out. I put him in his room to finish the dishes and decided I'd tackle a bit of school with AJ afterward when Teddy was quietly playing in his room. As AJ and I were reviewing his assignment, a clatter arose from Teddy's room. I flew in there, swear words perhaps a bit uncensored, to discover him standing on top of his 4-foot tall dresser holding onto his shelf that he had just ripped out of the wall ... right next to the shelf with the Mickey ears.

AJ helped me clean up the immediate mess since Teddy had disassembled a tractor figurine, and I had a shelf holding on barely with two screws. That incident made it clear that Teddy could scale his dresser, but we were perplexed how it happened because his dresser is out of view from his camera. I presumed he was hooking his leg on his window ledge to boost himself up, similar to how he scales the back of the Tahoe using the rear windshield wiper. (It's a miracle that hasn't broken yet.)

We determined we needed to figure out how to reconfigure his room because the dresser is important not only to hold his clothes but also to keep the wires to the camera and night light secure from his grasp. But before we could figure that out, I found him with Mickey ears on his floor again. Dave adjusted his camera, so the dresser was in full view. And a few days later, Dave saw him in the early morning hours amble to his dresser and do this:

I still can't believe he was using the tiny handles, that stick out less than an inch, to scale his dresser. That kid needs to try rock climbing when he's safely hooked into a harness. I bet he'd have a blast.

And Dave created a wooden box that is secured to his dresser, preventing him from getting a solid grip on the top ... at least for another year or two. In the one day that box didn't have a top on it, Teddy filled it with every toy in his room and was playing with an empty toy tote when I went in his room.

Never a dull moment with him. Ever.

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. 

Just Imagine

Imagine, if you can, going through an entire day without being able to say a word. You can communicate anything you want, as long as you do it through staring at objects, physically directing others to do what is desired, clapping to show that you want something and pointing at objects.

How would you fare?

That's the thought that popped into my mind this weekend, and it's been lingering. I'd probably end up in tears within the first hour of the day. I'd likely give up attempting any communication, at least with certain people, once I'd exhausted their patience with me and my patience with them.

I can't imagine honestly making it a single day, even if I took out the challenge of a work day. Yet this is each and every day for Teddy. He handles what would drive me over the edge with remarkable grace, patience and forgiveness. Yes, those aren't often words I use with Teddy, but when I think of the challenges in expressing basic needs, much less wants, dreams and desires, he exhibits all those qualities.

At times, I lament how challenging it is for us as parents. Life is a constant game of charades, and we don't even know the category most of the time. But no matter the frustration we feel, Teddy by far has the shorter end of the stick.

The other week he was eating a grilled cheese sandwich and got up from the table and stood at the counter next to the fridge. I was about to redirect him to go sit down and finish his food when it suddenly clicked that he probably wanted another grilled cheese sandwich. So we showed him AJ's sandwich and asked if he wanted more. He clapped and pointed at the sandwich, which is a clear request. So we made him another grilled cheese and celebrated the victory of understanding his desire for seconds. I felt so proud of that minor victory, yet how many other moments have I completely missed?

It's amazing how much he can communicate with his limited means, and we'll continue to work with his talker and with sign language to expand his abilities. It takes time for others to get to know his methods, yet sometimes there's no doubt what Teddy wants you to do. Other things, like a second grilled cheese, require us to pay much closer attention to all the little clues. It's exhausting for all of us, yet exhilarating when we make progress in either communication or understanding.

Tractor Repairs Needed

Know a good tractor repair place? I have an 1850 Oliver that needs quite a few repairs. It's in 4 pieces, not counting the steering wheel and random screw I found.

You see, Teddy had an 1850 Oliver tractor on a shelf that's about 6 feet off the ground in his room where it should be perfectly safe from Teddy's curious hands. Should be.

Except Teddy likes to climb. He tries to climb the boxes in his closet to see what he can reach, so we spread them all in a single layer. He doesn't have the dexterity to stack the boxes on his own ... yet. But he has figured out that if he pulls out the drawers of his dresser, he can magically become taller. Sometimes he's tall enough to pull his lamp near the edge, remove the light bulb and place it in his top drawer along with 5 pacifiers. Dave and I each caught him on top of his dresser on two separate occasions, laying flat on top, quite proud of his accomplishment.

Let's just say that this week he scaled all 4 feet of his dresser for (at least that I know) the third time. Except this time, he moved beyond laying on it to the tall kneeling or most likely standing position. Then he reached out and got two items from his shelf, which is about a foot or so away from the dresser. I'm guessing he might have grabbed the compass first and that the tractor might have fallen when he attempted to grab that since it was (at least before becoming 4 separate pieces) rather heavy. It's intended to be a model tractor for display as opposed to a toy tractor, although Teddy was indeed playing with it when I entered his room.

I reckon this is why these are model tractors, not intended for play or falling 4+ feet.

So, now his bedroom dresser has child safety locks on the three bottom drawers. I'm guessing that Teddy can't use the 4th drawer to scale to the top, but you never know. If so, we'll add that safety lock. Until then, he has the freedom to empty and re-arrange his t-shirts, along with his swim wear and sock drawers that are the top row. I can't take away all his fun at once.

What Would Be Your Super Power?

This week at work we were discussing the question of which super power you would pick if you could have any one super power? My response was selective mind reading. 

Now, my boss gave me crap about my response, saying things like that's creepy, perverted, twisted and the like until I stopped him in his tracks with my response:

"I have a 5-year-old son who has never spoken a word. I would pay a tremendous amount of money to know what's going on inside his mind."

As I continued to ponder this question I think I probably need more than one super power to be Teddy's mom:

Selective mind reading: With a non-verbal child, it's so challenging to know even his basic wants and needs. I have no way of knowing how much he understands. Sometimes I don't know if he doesn't understand or simply doesn't want to fulfill my requests. I have no idea of knowing what he's thinking, and I'd give most anything for that ability. Now, I say selective because I really don't want to know what most people are thinking.

Superhuman energy: To keep up with Teddy. He never stops. 

Superhuman strength: To wrestle Teddy, pick him up when he flops and drops and maneuver him where he needs to be, particularly when it's not where he wants to go.

What would be your super power?

Acceptance Comes with Time

While the adage that time heals all wounds may not be perfectly true, time helps tremendously in terms of acceptance of your child's diagnosis and needs.

I remember the first time that Teddy needed a piece of adapted equipment: his orthotic braces to help stabilize his ankles. I shed a few tears after the therapist left the house for the fitting. There was something about a physical object, a piece of adaptive equipment, that I couldn't deny my son needed. Teddy needing adaptive equipment, first in the form of ankle braces and then in the form of a gait trainer, was a hard pill to swallow despite the fact that I knew he benefited greatly from them.

Now, a couple years later, Teddy has been approved for three pieces of adaptive equipment in the past few months (five if you count his most recent braces and SPIOs (think Spanx for toddlers to help stabilize his core)). I couldn't be more excited about Teddy getting his own adapted bike, and neither could he. Today I got the response from his case worker that he would be eligible for an adapted booster seat to help at meal times since a traditional booster seat really isn't functional for him.
Instead of feeling depressed that he needs yet another support, I'm excited about the possibilities of meals going smoother with the right equipment. And, quite honestly, I'm amazed at how easy the process was with his county funding. I might have told his case worker that she's like Santa Claus. (Hey, I give her my wish list, and she makes it happen.)

This is the booster seat we're hoping to order for Teddy.

This isn't to say that there aren't new challenges that occur that require additional time to process or that things like birthdays and holidays are tough at times because of milestones not reached. (Shopping for presents really emphasizes that fact.) But these last pieces of adapted equipment I've been able to view as assets that benefit Teddy with no strings attached, which is so nice.

And that third piece I mentioned? That's another post for another day. But it's exciting.

How to Create an Integrated Tumbling Class ... as Described by a 4-Year-Old

AJ is taking a tumbling/gymnastics class this summer through the rec department in Oshkosh. It's one of those things where he cries and throws a fit that he doesn't want to go and then has a splendid time. (I signed him up solely for the socialization to help him develop those skills.)

After his first class, he asked about Teddy taking gymnastics. I explained that Teddy is too young this year because you have to be at least 3 to take this class. I said Teddy would be old enough next year. AJ informed me there were some things they did in class that Teddy already knows how to do, like bear crawling. AJ said there were some things that Teddy would need help with, like the activities that involve jumping. "It's OK, Mama. I will tell the teacher, 'You can help Teddy with this.'"

There you have how to integrate a child with different abilities into a gymnastics class through the rec department. Do what you can how you can and ask for help when you need it. That's truly how simple it can be for a child like Teddy. I hope the Oshkosh rec department feels the same way next summer. If not, I guess I'll just have AJ explain it to them. (Because, by golly, Teddy sees all those mats and wants to join the fun!)