Blog

Collin's Room

We use a lot of equipment in this house. It could be even more, but we try to keep things as simple as possible without sacrificing functionality. Collin's bedroom is a good example of how we try to stick with the essential equipment and then choose accessible items from mainstream sources to fill in the gaps.

Any guesses on what Collin is into right now?

Any guesses on what Collin is into right now?

Note: I wanted to do this post a long time ago, but Collin wouldn't give me the okay until I finally took down the flowery wallpaper border and painted over the pastel pink that was there when we moved in.

1. Bed. We could have a special medical bed. It wouldn't be hard to get insurance to cover it. But we just don't feel a strong need for it right now. Collin isn't mobile enough to need to be contained in his bed and he helps enough that we don't need a bed that raises and lowers. So, it's a plain old twin bed for Collin. There is a collapsible bedrail under there that we use at both naps and overnight.

2. BiPAP. Nonnegotiable. Collin needs to be able to breathe at night. So we keep it there on his bedside table with the tubing running behind his bed and the mask waiting under his pillow.

3. Monitor. That white thing behind Collin's favorite dinosaur toy is a video monitor. Because Collin doesn't express himself with any words, we really need to be able to see him at all times to determine whether or not he's okay.

4. Closet storage. The closet is where we stash oxygen tanks, orthotics, extra medical supplies, backup g-tubes, and the oxygen concentrator. Oh, and clothes.

5. Tent. Collin got this tent for Christmas three years ago and it's been so great for him (many of our favorites over the years have been from B. Toys). Not only is it fun to play and read in, but Collin really appreciates alone time and this gives him a place to have it when he is overstimulated.

6. Open space. Between Collin's wheelchair, gait trainer, and stander, it's important that we have plenty of open floor space in every room, including his bedroom. He also needs to and enjoys spending time stretched out on the floor and he's super long now. It is good motivation to keep things somewhat tidy. That green chair folds up flat with one switch if we need more room.

This is what works for us. It has changed over time and probably will again, but for right now, this is our sweet spot between special equipment and run-of-the-mill kid stuff.

 

The Essentials: Part 2

Collin chasing his cousin, backpack in tow.

Collin chasing his cousin, backpack in tow.

Collin has a backpack. It is red and black with wide straps and lots of compartments. He carries it on the back of his wheelchair; or, if we're going somewhere without the wheelchair, on the back of one of his parents. 

The contents are nothing like what I imagined my six year-old packing up and lugging around. 

The backpack carries our second tier essentials - items that are half a step away from being nonnegotiable.

- Noise canceling headphones. Collin's uncle picked these out as a Christmas gift one year and they are one of our best and most-used tools. Because he can slip into sensory overload depending on the size/acoustics/vibe of a public place, these provide the perfect way for Collin to continue enjoying himself in a place that would otherwise bother him. And he looks really good in them.

- Extras. Extra g-tube. Extra syringe and extension. Extra gauze.

- Venting syringe. Everybody burps. Even people whose esophagus has been turned into a one-way valve via Nissen wrap. Collin burps by hooking a short extension with a smallish syringe minus its plunger to his g-tube and letting the air out. Just opening the tube port doesn't work because it is also a one way valve. Let too much air accumulate in that tummy, and you have a problem on your hands.

- Pullups and wipes. Collin is potty trained, but accidents do happen.

- iPad. Our portal to all things good. The iPad is a life saver in so many situations. It is the workhorse of our daily life. It is in use probably ten hours a day, whether for videos, audiobooks, music, vision exercises, or hand use practice. Paired with the noise canceling headphones, it can fix virtually any problem.

- Food and meds. Because of Collin's diet, we can't pick up food for him while we're out. So we need to know how long we will be gone - or more specifically, how many mealtimes that will span - and bring that many jars of precisely calculated and measured food, along with accompanying supplements.

- Norwex cloth. Collin's drooling (or 'drizzling', as his cousin calls it) has gotten SO MUCH BETTER over recent years, but some positions still make it hard to control. These cloths are super absorbent and anti-microbial, which is good considering how rarely I remember to put them in the laundry.

- Some normal things. Lotion. Glasses cleaner and case. A deer or duck call. (What?! You don't carry animal noisemakers in your bag?!)

When we were little, my sister and cousins and I always packed bags for our adventures. Toys, books, snacks, a picnic blanket that could double as a cape or a tent in a pinch. There is part of me that aches at how different Collin's bag is from ours. 

But there is another, steadily growing part of me that sees that Collin's backpack IS packed for adventure. Because of what's in that bag, we can go to the park, to restaurants, to the zoo and the orchestra. Because of that bag of items, we are free to venture out our door and into the world.