The Non-Verbal Child and Presuming Competence

Presume competence.

That’s what we as parents and educators were told to do at the Peak Parent Conference in Denver when I attended in 2008. Just because a child cannot speak or communicate in a universal way doesn’t mean he or she cannot understand what you’re saying—that you’re talking about or around him.

I know Zane has way more happening in his mind than most people give him credit for. He understands a lot. If you know him, you know that. He simply doesn’t have the means to communicate in a way many of us understand. I believe it’s the reason he yells at inappropriate times: It’s the only way to garner attention.

That said, I encourage you to watch this video. It speaks volumes about what we may be missing with our non-verbal kiddos. It is absolutely amazing. Maybe you’ve already seen it. "Never give up." I love this dad's comment. It rings so true for me. 

On a separate note, Zane’s Zeizure activity continues. According to the neurologist’s instructions, I’ve kept him on both medications. The Zeizures have tapered off to some degree, yet Zane still has at least one every day. We have a new neurologist we plan to see once some things get sorted out with his insurance.

Do you presume competence with people who are cognitively different? Some people in the world are absolute naturals when it comes to interacting with kids and people with differences. I am amazed by them. I wasn’t like that until I had Zane. I was always afraid of saying the wrong thing to a person who was differently-abled. Now I am drawn to them.

RIP Kelty

Kelty (May 2004-July 2013)

I really like my Kelty kid carrier. My fellow teachers gave it to me as a baby shower gift before Justin was born. It was perfect for hikes with him, and did a whole lot of overtime on our yearlong road trip. We’ve even used it with Zaner, even though it wasn’t ideal for him.

Several years back, we went to one of my most favorite hiking places: Lizard Head Pass near Telluride. I was really looking forward to the whole adventure: the meadows, being in the trees, the fresh mountain air. We had taken Justin there when he was a toddler. I envisioned the same outcome with Zane. We had situated him in the Kelty, and Justin hiked on his own. There were already complaints from Zane during the loading process. Then, ten minutes into the hike, Zaner cried. And cried some more. Wailed is probably a better word. He definitely interrupted the Zen on the trail; the peace within myself. And he didn’t stop. I loaded him on my back and headed back to the trailhead while Jeff and Justin continued onward. Zane was too upright. Too uncomfortable. He immediately quieted down when he was back in the car (the boy CAN communicate). But despite those setbacks with the Kelty, we often made it work.

Now, however, Zane is too tall for the thing. His ankles get caught in the metal bars at the bottom (see picture above). He is also reaching the maximum weight allowance for it. So what to do about hiking? Give it up? Go without him? And, if so, who will watch him? And what about rock climbing? Heading out to the crag? I’d really like for him to go.

I’ve researched other carriers. I even tried one out that a friend loaned to me. It was an ErgoBaby. It didn’t work.

There has to be something out there. Right? There has to be a way to tote a non-ambulatory child on a hike. Right? If ANYONE has suggestions, I would LOVE to hear them. I don’t want to give up hiking. Or rock climbing. I want to include Zane in any adventure he wants to be a part of. But the Kelty has done its time with us. In fact, it’s going to be sold during the next garage sale. And yes…there will be tears from sentimental me.

If you have ideas or suggestions, feel free to contact me via email, comments below, or through FB. I seriously need some help with this one. Thanks!

Zeizures

I had planned to post video of Zane, but things have been pretty erratic with what Justin and I have dubbed Zeizures (Zane seizures).

After almost-weekly changes to his medications, things have not improved. At times, the Zeizures seem less extreme; at others more dramatic. Justin and I witnessed one of Zane’s worst seizures to date a couple of nights ago.

I talked to one of my friends who has epilepsy, describing to her what I had observed with Zane: upset, rapid breathing, and (at times) terror on his sweet face. She thinks that Zane most likely feels the seizures coming on now and knows what’s going to happen, which causes panic to set in for him.

I called and left a message for neurology yesterday, but they didn’t call back (which is not typical of them). I hesitate to call again because they want to add a second medication to his regimen, and I am still so in the dark about seizures and the human brain. Will I lose my Zaner to medication side effects? Will he want to sleep all the time? Or will he be completely wakeful (like he was all of last night)? I don’t know what to expect, which makes me feel out of control. And I like control J

I am going to gauge Zane’s seizure activity today before calling again. It is probably me simply procrastinating, but you never know. Maybe the Zeizures will improve.

Water Therapy and an Update

Today we met Zane’s PT at the rec center pool for therapy. I don’t know why we’ve never done this before. Being in the water is the perfect way for Zane to feel movement throughout his body, as well as to get the much-needed extension his body craves. Zane spends a lot of his time in flexion (sitting in a chair, doing abdominal crunches, sleeping curled on his side). In the water, he doesn’t have to fight gravity so hard, so he’s able to straighten out quite a lot.

I was so impressed by the exercises Cindy showed us (and by how much Zane absolutely LOVED them). She and I are certain that swimming is his sport and that if it’s made a regular part of his routine, we’ll see tremendous progress with him in movement. We’re hoping he’ll even learn some swim skills along the way.

As far as Zane’s seizures go—there is no improvement yet. Of course, the neurologist only upped his dosage a day or two ago. I’ll monitor him for the next ten days, then call back for another check-in. Normally, he has one seizure here or there during the day. This morning he had three in a row. I’m absolutely surprised he accomplished an hour of therapy at the pool afterward…with a smile on his face  no less. Normally the seizures tire him out, and all he wants to do is sleep for a while after having them.

On a separate, non-Zaner note: Justin’s baseball team (the underdogs in the league) won the team tournament this past week 14-12. Because Justin's team has the rep as being the "losing" team, the other team showed up pretty arrogant and overly confident, so it was beyond awesome to watch them win and have fun. Since they won, they get the honor of playing in the town championship tomorrow! I am so super proud of Justin—and the whole team. They so needed the taste of success to feel good about themselves and their baseball playing (something I, too, am hoping to know with my writing after so many rejections).  If they win tomorrow (despite having a ‘non-winning’ record), they are the champions! Fingers and toes are crossed. I would love to see them make a comeback and show that even the defeated can achieve success!

You know, I'm supposed to be an example to my boys. And I am. But so often, they show me the way to be; they teach me what it means to be alive in this challenging world. Through Zane, I know smiling through trials can make the difference. Through Justin, I've learned that Jelly Bellies can turn a bad mood into a not-so-bad one, especially if you hand pick them from Fuzzywigs!

Chaos and Seizures and Taking a Breath

Life has been chaotic. There is a great deal of change happening in our lives, which has me exceptionally overwhelmed and sad and—really—running a whole gamut of emotions. But those things are outside of Zane, who has his difficulties, too.

The seizures are on the increase. A couple of weeks ago, I noticed that they began making their appearance at least once a day, where as before they were happening maybe once a week. I called the neurologist who upped Zane’s dosage of Keppra. “Give it 10-14 days,” I was told. We’re on day eight right now, but there is no improvement. Not only have the seizures refused to stop, but they have become different. More concerning. Before, they were myoclonic jerks. Now they seem to involve his whole body, and Zane becomes noticeably disturbed by them—puckering up as if he’s going to cry, a look of utter panic splaying itself on his beautiful face. By Thursday, I will call the neurologist again. What I don’t want to hear is the need for an MRI—particularly because of the change in seizures.

So, in the midst of all the stress we’re under, I’ve been trying to find quiet times for the three of us. This weekend—and again today—we went up to the college and flew our new kite. We had little success keeping it up the first time we were out. But today, it soared. Zane camped out in his wheelchair under a tree, while Justin and I took turns guiding the kite through a sky of cumulous clouds. It was a great way to check out—if only for a short time.