A Note About Pet Toys…

March 13, 2019February 28, 2019Leave a comment

My kiddo loves to chew. He loves to beat on toys. He loves anything that has bells in it, squeaks or otherwise makes any sort of noise. And don’t judge me for this but I’ve turned to the pet aisle a few times for toys. I make sure nothing is scented or flavored or otherwise hazardous (find toys labeled as nontoxic). Stringy cat toys are a hit. A motorized bumble ball is a nice change of pace from other toys. A heavy duty chew toy should last us a few years. And as an added bonus, these toys are often cheaper than kid’s toys and they are ALWAYS cheaper than “special needs” toys. Happy hunting!

Squeaky Mr Fox is great for chewing $8

Spiky Squeaker Ball $5

Chewy Rubber Octopus $8

Bumble Ball bounces around to entertain and encourages reaching $13

DIY Light Jar

March 6, 2019February 27, 2019Leave a comment

Old Peanut Butter Jar – Check
$3 strand of battery-operated Christmas lights from drug store after Christmas – Check
A few bells I had laying around (I always save bells for Ryan crafts) to make noise – Check

If your child is able to open a jar, be sure to super glue or tape the cap shut, or otherwise secure it!

Necessary Objects = Our Rifton Wave Bath Chair

February 27, 2019March 1, 2019Leave a comment

After infancy, I can probably count on one hand how many baths Ryan has taken in his life. I found it too hard to hold him up while leaning over the tub and clean him at the same time. He was too chubby or too weak for some normal bath seats. I thought about using a laundry basket (and still think that’s a good idea) and putting pool noodles on the edges to fashion a homemade “container” of sorts for Ryan in the bath as I do think he’d enjoy the water play and sensory experience of a bath. But we’ve taken swim lessons and done water therapy to let him play in the water.

The shower is easiest. Or it was until he hit about 25 pounds and got a little more wriggly. When we were in the process of buying Ryan’s medical stroller for school, our DME (durable medical equipment) sales rep told us about shower chairs. So we got the Rifton Wave Chair (thank goodness for Medicaid coverage) and it has been AMAZING. We strap Ryan in for safety, and can shower him without our arms tiring or worrying about him slipping out of our grip. The top part of this chair can also come off of the base to be used in the bathtub if that’s your preference.

Our Rifton Wave Shower Chair

And to make the shower even more fun, we bought this LED color-changing showerhead. It makes it very easy to shower Ryan and he loves looking at the lights. Plus, the lights tell us how hot the water is (green is warm, whereas blue is cold and red is hot) since Ryan can’t warn us if it gets too hot without our realizing.

PVC Pipe Toy Hanger (and a note about CVI)

January 28, 2019March 1, 2019Leave a comment

When our first vision therapist came to us from the wonderful Visually Impaired Preschool Services of Indianapolis, she brought with her this amazing DIY hanging rack so Ryan could sit or lay under it and look at the objects. And one day he finally started reaching for the things! Anyone can make this cheaply out of PVC pipe. Ours is 1/2″ diameter and 24″ long on top and 26″ long on each side. We added the foam around the edges for when he would fall over onto the frame, though now he sits in a chair in front of the frame.

We switch out the toys as he gets sick of them but consistent favorites have always been a water bottle filled with popcorn and covered with the green mop slippers and the bell bracelet. Jar lid rings are also a hit given their shininess and auditory feedback and Ryan really loves to grab the gold cat toy as well. Slinkies are also a great thing to hang. We’ve added more items as his vision has grown stronger.

Hanging Toy Frame (against Ryan’s play corner with black sheet/garland, etc)

When Ryan first received this, he would sit and look at the toys. Then eventually he started reaching for them. Now he plays with them voraciously.

Once Ryan got a little bigger, we got this little chair for him to sit in and reach forward to play with his hanging toys. We put shelf liner on the bottom of it so he doesn’t scoot down and slip out of the chair, and we tie a swaddle blanket around his waist and the chair as a seat belt of sorts to keep him there safely.

You may also notice the black sheet up in Ryan’s play area, and the black blanket on the ground, plus the high contract patterns and shiny garland. We try to cut down on the visual clutter as much as possible to help his brain focus as well as give him strong points of interest to focus on (garland/shiny stars, etc; Party City is the best for this stuff). Looking at objects against a black background is also thought to be helpful, hence the blanket. Cutting down visual clutter is incredibly important for kids with Cortical Visual Impairment which affects many kids with ATR-X. If you think your kiddo might have CVI, I’ve found these sites to be helpful for tips on improving Ryan’s ability to focus visually:

Perkins School for the Blind (the gold standard, so to speak, of CVI)
Little Bear Sees
Wonder Baby
American Foundation for the Blind

The box of toys has been moved and other toys are hidden behind the sheet now to make his play area as de-cluttered as possible.

Adapting Books and Puzzles for CVI

January 28, 2019January 28, 2019Leave a comment

There are lots of great suggestions online for adapting things in your home for your child with cortical visual impairment or CVI, to help the brain better be able to focus on an object or environment. Here are some of my favorite ideas, both involving a Sharpie:

1. Black out the background on busy pages in books to reduce the complexity of what your child is looking at and help your child “see” the main objects on these pages. I’ve had luck with some books but not with others that have super shiny/slick pages as the market doesn’t stick.

See how hard the purple bicycle or green pear are to see below, when against their like-colored backgrounds? That’s tough for a kid with CVI. The slick finish of these pages wasn’t the best for my Sharpie but would be easy to cover with black construction or contact paper, if you’re somewhat crafty (which, to be honest, I am not).

Colors

Here’s another example from another CVI mom:

screen shot 2019-01-28 at 9.39.03 am

2. Trace the objects on the pages so they have a black frame around them, which will help your child “see” them. (I also think many of these Jellycat books are great for CVI kids, given the simplicity of the pages).

3. Black out the background on wooden puzzles to help your child “see”the pieces to grab. You can use a Sharpie if the material allows or get fancy and use black shelf paper and an exacto knife, as shown in this blog post from Making Our Way In a Typical World.

Picture from Making Our Way in a Typical World

4. Color in the pages with the colors that interest your child. Black & White books are great, and are the first books that ever grabbed my kiddo’s attention. Take colored Sharpies and color in the white parts of these pages with the color that appeals most to your child.

Coloring books