In addition to Emmett’s more health-threatening symptoms, he also has Cortical Visual Impairment (CVI). CVI is a little different from other visual impairments because the issues aren’t really caused by physical problems. Instead, there’s an issue with how the brain communicates with the eyes. So as Little Bear Sees explains, the eyes can physically see, but the brain is not interpreting what is being seen.
Luckily, there are people who specialize in CVI, and we’ve learned some strategies on how to “help” Emmett better see. For example, he prefers bright, solid colors, ideally against a dark solid background. Many baby toys come multi-colored and very loud. But Emmett seems to prefer a single solid color (like bright pink or bright yellow), and he doesn’t like super loud things. It takes so much focus and energy for him to look at something that it’s usually better if we allow him to focus on that piece. (One of his vision teachers described it like this… imagine standing and overlooking the Grand Canyon. Everything is in the background and feels vast and blurry… nothing comes into focus for you.) Our job is to bring objects into focus for Emmett, and by doing that, it will help him, over time, learn to reach and grasp. So the keys to do that, for Emmett and many kids with CVI, are bright colors, movement and light. He also prefers using his peripheral vision (we think) and has a delayed response when looking at objects.
Anyway, I wanted to give a brief background since I haven’t really talked about this aspect of his disorder much. The big(ish) development over the past couple weeks is that I finally got my act together enough to make him a “little room,” which is a small defined space to allow Emmett to play and explore independently. He would be more in control of his environment, and able to better anticipate what might happen.
There are lots and lots of versions of little rooms if you google it, so there isn’t really a “standard.” But, in hopes of helping other parents with kids with CVI, I wanted to do a quick tutorial on how I built ours. [I decided to make our little room 3’(W)x2’(L)x2’(H) so that’s what these instructions are for.]
Materials and where I bought them:
(Please note: I’m not endorsing these products in any way. Just wanted to share what I bought in case it’d make it easier for people.)
- 6 5-feet PVC Pipes –> I went with white but there are also black ones
- 2 PVC 90-degree Elbows –> They only had an 8-pack, so that’s what I got, but you only need 2
- 6 PVC 3-way Elbows –> Also got the 8-pack here, but only needed 6
I chose a 3/4″ diameter for all the PVC stuff, but they also sell different sizes. Whatever you choose just make sure you buy the same size for all the pieces.
- 2 24”x24” black plastic pegboards –> This product comes with three panels. They also sell packs of two or one.
- PVC pipe cutter –> I think you can have Home Depot cut your pipes for you, but I wasn’t sure at the time what size I wanted to make his little room, so I bought a cutter
- Titanium Step Drill Bits
- Black 25”x40” curtain for the back –> Note: I couldn’t find a pegboard that fit a 36”x24” space, so instead, I covered the entire back with a blackout curtain.
- Plexiglass for the roof of the little room (bought this in person) –> I had to buy a 36”x30” piece since they didn’t have a 36”x24” piece. Lowes was able to cut it for me, but I had to figure out how to drill the holes. (I used the drill bits mentioned above to drill the holes… important thing is to go SLOWLY so the glass doesn’t crack.) It took me 1.5 hours to drill the holes (stopping in the middle to charge my drill)… hopefully you can do it in less time if you’re a pro.
- Cut your 5-ft PVC pipes. For three of them, I cut them into 3 feet and 2 feet pieces. For three of them, I cut 2 2-feet pieces. You’ll have some left over pieces.
- Connect the PVC pipes with the elbows into the frame you need.
- Take the pegboads and 8 pieces of cable ties, and “tie” them to the two sides. There will be about half an inch between the pegboard and PVC pipe.
- Cut five some holes into the long side of the curtain, spaced evenly. Thread a cable tie in each hole, connecting each cable tie to the top PVC pipe at the back as you go.
- Cut your plexiglass to size (if needed).
- Drill holes in your plexiglass. I started by drilling holes in each corner (but far enough away from the edge so it didn’t crack). I then drilled holes (1 or 2) in between the corner holes so that there was enough support to hold up the entire piece of plexiglass. The number and location of holes is entirely up to you, depending on what you anticipate putting there.
- “Tie” the plexiglass to the PVC pipes with cable ties.
- Decorate! Bright colors, different textures, etc. Really depends on what your child responds to.
OMG… okay, I think that’s it. It sounds more complicated than it actually is. Happy to answer any questions if you’re attempting this! 😊
(The pictures above don’t show the last 3-feet PVC pipe I added to the fourth side of the plexiglass. I found that it was bowing on the side without support, so added the last PVC pipe for support.)
Here is a website that shows how to make your own “pins” to hold your PVC parts together securely but still make it easy to disassemble later: http://www.instructables.com/id/Glueless-PVC-joints-that-stay-stuck-together-but-c/
I want to make a little room that I can fold up against the wall when not in use, so that might help.