Tuesday, August 27, 2013

A Need-To-Know Basis

On our way home recently, Kyle and I amused each other by coming up with equivalents to the dreaded and discombobulating questions we sometimes get about Collin when we meet new people: "What's wrong with him?" "What does he have?"

"Hi! I see you wear glasses. What's wrong with your eyes?"

"Hello. Have you ever had that mole checked out?"

"Nice to meet you. Do you have any health conditions you'd like to tell me about?"

"Good morning. You look about 40 pounds overweight. Is that because of a thyroid issue or do you just eat too much?"

We laughed at the preposterousness of our examples, but then I felt sobered by the truth of it. I realized why the "Hi, what does he have?" greetings bother me so much. It's not because of any discomfort over Collin or his challenges - it's a bristling at the presumption that it's okay to immediately call attention to Collin's differences and expect an explanation before making any effort to get to know him. That, because he has an obvious disability (or two or three), that's the first thing he (we) wants to talk about.

I read Tina Fey's Bossypants this year and a part that seared itself into my mind was when she talked about her facial scar and how most of her best friends have never asked about it. Maybe even more interesting was the fact that she never felt obligated to tell the story behind the scar just because someone asked, instead deflecting or making something up. It wasn't that she was ashamed. She simply refused to let people make that scar a defining characteristic just because it was visually obvious.

Of course, Kyle and I want to encourage people to ask questions about Collin so they can best understand and interact with him. But maybe not as soon as we meet. Just like in all relationships, some things come later. It's a privilege and not a right to get to that point.

Now let me clarify: I am not talking about kids here. This will be an entirely different post at some point, but with children, questions like these are good. I hate to see parents who are mortified that their child is asking pointed questions about Collin fumbling through some noncommittal answer to get them to shut up. All that does is make things more confusing for the child, which makes it less likely that they will reach out and befriend Collin. But, in my opinion, it is not rude for a child to ask what is on his or her mind. There is no intro-period with kids. They jump straight to the get-to-know-you phase. So when a young child asks me why Collin isn't opening his eyes or why he doesn't talk or walk, I see that as an opportunity. Yes, it's hard for me to watch the uncertainty on their faces as they peer at Collin and ponder my response, but it has never turned out poorly. Usually, they accept my answer, sometimes ask more questions, and then seal the deal by giving Collin a high five when I ask if they'd like to.

Naturally, all of this has made me wonder which things I feel entitled to know about others. What questions do I use to try to figure someone out before taking the time and effort to actually learn about them through observation and interaction? Can I accept someone without an explanation? When the painfully obvious threatens to take over my perception of someone, can I take a deep breath, smile, and just say, "Hi, I'm Annie. It's nice to meet you."?

Thursday, August 22, 2013

On Waiting Until You're Ready

It wasn't that I thought Collin wouldn't need a wheelchair. Because I knew he would. It was just that we weren't ready.

There are so many things in this life with my precious Collin that don't allow the luxury of waiting.  They force us to get ready or go under. A wheelchair is not one of those things.

But it is a thing that demands attention. It has a heaviness - full of all kinds of meaning, but foreign and frightening to most of us. It's not something you take on lightly. Sure, it would improve his positioning and yes, he would need it eventually, but I knew that if we went to that place too soon, it would bring on grief.

So we pushed him in too-small strollers and hefted him around on our hips and dipped our toes in the water with a push chair while we sat with the idea of what was coming and got okay with it.

When it finally came last week, I can honestly say that I was excited. Twinged with heartache, but still excited. And now when I look at him in it, I see its bulk and its knobs, but mostly I see the handsome face and healthy body and radiant spirit it is holding up to the rest of us and out to the world.

I'm glad we waited.

Tuesday, August 20, 2013

Potty Update

We have assembled a potty-on-the-go kit, which includes a small folding stool, a pack of sanitizing wipes, some emergency pull-ups, and this potty seat. After a lot of research, I picked the weePOD because it is soft but still easy to wipe off, fits all toilet shapes, has suction cups for stability, and is all one piece, which makes it much easier to clean than those potty seats with the rigid plastic piece underneath that functions more to collect pee than to keep the seat on the toilet. Also, the hole is big enough for big kids, but not so big that it feels like they are going to fall through. There is a slight rise in the back that gives a bit of support and the splash guard is small but effective.

And the verdict is... SUCCESS. We started out by trying out our system at a relative's house so it wouldn't be a catastrophe if things went south. No need to worry, though. Collin sat right up with minimal support, did his business, and then stood up on the stool and leaned on me when he was done. I was able to prop my knees on the stool so I didn't have to maintain a full squat or touch the bathroom floor.

Next test: public restrooms.

Wednesday, Collin successfully used the potty at the PT center, Whole Foods, and the chiropractor's office. Everything went smoothly except for the time that my back pocket got caught on the front of his push chair and we both almost went sprawling on the bathroom floor. Luckily, I recovered and Collin didn't laugh too hard.

Wednesday, August 14, 2013


iPad partners

Group floor time

Somebody is adored by the big kids.

I love this one because it looks like Kate has both of them
in a choke hold.

Apologies to future-Ila for the panty shot, but this one
was too good to leave out.

Friday, August 9, 2013

When Your Child Can't Play Independently

"Free play" is a term I've heard more as Collin and the children of my friends have gotten older. It refers to unstructured time in which kids are free to choose their own activities and it plays an important role in development, both of skills and of independence.

But there is no free play - at least in the typical sense - at our house. There have been times in the past when therapists have recommended free play for Collin to allow him time to explore his environment. The thing is that he doesn't really do it. If I set Collin up in a seat completely surrounded by toys and leave him alone for a few minutes, at the end of that time, he will be tumped over with his eyes closed. If I leave him on the floor with toys just out of reach to encourage movement, when I come back he will be curled up on his side or possibly kicking, but never paying attention to the toys. Either he can't register the existence of the toys, he isn't motivated by them, or it is too much for him to interact with them on his own.

I've shared before about the mental and emotional challenge of constantly and constructively engaging with a child who does not or cannot initiate - about how it feels to be simultaneously always alone and never alone.

But, over time, I have come up with a few practical strategies that benefit both of us by allowing us each to do our own thing for brief periods during the day.

1. Do Things Together
I try to save most of my tasks until Kyle gets home or for a day Heather is here, but it's not possible to hold off on everything. For example, I value homemade meals, so Collin comes into the kitchen with me and "helps". I tell him what I'm doing and let him feel ingredients. We sing while I'm chopping or have a little dance break in between steps. That way I can attend to something important to our family without leaving Collin bored and unattended.

2. Value Down Time
I grew up in a family that valued true down time, in which you actually do nothing "constructive" at all. But since Collin came along, I've struggled to remember that sometimes "nothing" is the best thing you can do; my tendency is to keep him constantly stimulated in some way in the hopes of goading his development. So when I get swept up in a series of insurance calls or some other task that keeps me from interacting with Collin as I would like, I try to assure myself that even though Collin might not technically play during that time, it's still beneficial for him to have some time when nothing is expected of him.

3. Keep Looking for Something That Works
Most toys and apps are worthless to us without someone to guide Collin in structured play. But there are some wonderful, well designed options and some simple ideas that Collin can do by himself for a few glorious minutes at a time - we just had to keep trying until we found them.  I subscribe to Smart Apps For Kids (and now Smart Apps for Special Needs) who does a great job of monitoring reduced and free apps and sending out recommendations via email. It was through this site that I found the beautiful Kate and Harry apps that are perfectly designed for Collin's limited motor skills, enabling him to build and drive cars, ships, and planes. Another favorite is Sound Shaker, which provides a wide variety of fun sounds and colors with minimal fine motor skills required. In terms of 3-D activities, Collin enjoys sensory boxes and a bag of mardis-gras beads makes a perfect non-messy version for on-the-go.

4. Use Videos (Without Guilt)
I never wanted to be a parent who used TV to entertain her child. But I had lots of ideas about things before Collin came along. And the fact is that he can attend much better to something on a screen than to 'real life' because the defined edge helps him to limit how much he needs to process. Consequently, videos and visual apps end up being some of the best vision therapy for him. They have also built up his attention span to that of a typical four-year-old, if not longer. Videos even provide great incentive for Collin to swallow during feeding practice and make meal times much more pleasant for everyone. Add in the fact that he can enjoy them fully on his own, and you have more than enough reasons to integrate videos into our daily schedule.

This may not all add up to free play in the traditional sense, but as with most things, we're not shooting for typical - we're going for our own normal.

Collin watches the rain and listens to Scout sing while I
write for a few minutes.

Tuesday, August 6, 2013

Honing the Team

There are only a few weeks of summer left, so I'm sitting down to do some brainstorming about Collin's upcoming school year, as he will not be attending preschool again this year (more on that later). Along with planning unit themes and fun activities, I'll be revisiting his NACD program, his PT priorities, his feeding strategies, and a new addition: a binder full of suggestions from his new occupational therapist.

We have been through a lot of OTs in a few short years; many of them were really wonderful but didn't work out for scheduling or other reasons. Our most recent occupational therapy was hippotherapy, and while I loved having that experience for Collin, it just wasn't a good fit for our family overall.

Our therapy team is small and incredible and that's how we like to keep it. I'd rather do without a particular therapy than push on with a poor fit. So we just took a break from OT until our beloved feeding therapist mentioned an OT in the area she thought might be a good match for Collin.

This woman has 27 years of experience and specializes in several areas, including reflex integration. Reflexes - our bodies' built-in mechanisms for survival and stability during our early months - are typically integrated when we no longer need them, but if a brain insult occurs (like, say, catastrophic seizures or near-coma-inducing-anti-seizure-meds) during that time, it can impede that process. If those reflexes stay present, they can actually interfere with development.

At least, that's what some people think. Other people think reflex integration is bunk. And that's okay. I don't care either way. I know there is little or no evidence backing it up (which really just means not enough studies have been done and has nothing to do with whether it works), but when you have a kid like Collin, who doesn't come even close to fitting any mold, you find yourself less concerned with large bodies of evidence.

There are two things I love about this woman aside from her expertise:

1. By the end of the first meeting, she said, "You know, I really think Collin is understanding a lot more than he is able to show us."

2. She uses an educational model. That means she did an evaluation, then a consultation in which she discussed her thoughts with us and sent us home with a binder full of specific suggestions for Collin, along with rationale. It's very similar to NACD and many of her suggestions were NACD-esque as well, which I liked to see. We will go back in six weeks to see how Collin is doing, tweak the "program" and get some additional training.

I'm feeling good about this move. I love to get a new set of capable, insightful eyes on Collin whenever possible and I love to be empowered to help Collin myself in his most comfortable and learning-conducive environment. Hopefully this is the OT match we've been waiting for.

Sunday, August 4, 2013

Potty Man

We're coming up on two years of Collin being potty trained. It's hard to believe. Not only that it's been that long, but that it happened at all. How does a kid who has no method of communication and virtually no control over his body potty train himself at 2 1/2? I still don't know.

Though we're still in awe over it all, in a way it actually complicated things. Most of the time, he can't/doesn't tell us when he has to go, so there is a kind of constant vigilance on our part to watch his very subtle cues and pay attention to the time in relation to meals and water. And since he obviously can't get to the potty himself, it requires lifting his 35 pound self onto and off of the potty many times a day.

On the go, things get even tougher. We have to maneuver him onto and off of a potty seat either in the van or at someone else's house. Sometimes it isn't pretty. There have been many times - at events where we were away from the van and couldn't easily carry the potty seat - when I've wanted to just 'let' him go in his diaper (we still use pull-ups for the occasional accident). But I can't shake the feeling that it's actually making a kid who has an understanding of the concept go in his pants instead of in the potty, as he would prefer. I just can't bring myself to do it. I would rather skip an event or leave early.

We've explored other options, but were always thwarted by the fact that Collin refused to go on any potty other than his own.

Until this week.

I had an incident with my back this spring during which I realized that this life with Collin is a marathon versus a sprint not only mentally and emotionally, but also physically. I had to refrain from lifting him at all for over a week, which was tricky to orchestrate and involved lots of helpers. At that point, we got serious about trying to think through the daily physical demands of Collin's schedule and promptly ordered a new, more age appropriate potty seat.

So last week, I decided to use our fresh start in the new apartment as a chance to try Collin on his new potty. First, we just tried it in his room like he was used to. He thought about it for about 5 seconds and decided it was okay. The next day, I decided to run with it and moved the potty into the bathroom and then raised it and rolled it over the toilet. This eliminated an entire step of the process (the emptying and cleaning of the potty) and allowed me to sit on a stool instead of all the way down on the floor. It's a beautiful thing.

No picture of Collin on the potty, since he says once was enough and he's much too big for that sort of thing now, anyway. But here is a picture of his potty chair, which will eventually (when we have a fancy shower) also be his shower chair.

The most recent development came this week at PT when I tried Collin on the 'big boy potty', which was just a normal toilet that has an extra seat for little kids that you can fold down inside the bigger one. We used the stool from in front of the sink (it's a pediatric practice) and the whole thing went so smoothly I could hardly believe it. 

He looked at me like, "What?"

So we're assembling a potty-on-the-go pack that includes a folding stool and a good potty seat that will fit most toilets. 

It's tough to explain what a big deal this is for us. It not only saves my back and feels like a huge leap toward normalcy, but it opens new options for us in terms of where we can go and what we can do. That's a lot to be thankful for.