Playing Through Touch (VIDEO)

This video is about playing through touch and using anticipation, with Mom's fingers crawling up his chest to tickle his neck. This gives Orion positive experiences with tickle and anticipation games. (Text is in the video description at its original YouTube location.)

Sighted children are able to see the tickle monster or The Hand diving in to tickle-bomb them.  If you used the same sneaky technique on your DeafBlind child, you're going to scare them.  Thomas and I wanted Orion to experience the same thing but in a DeafBlind way- what's similar in both situations is anticipation in a fun way.  Orion has no sight or sound* so he's learning mainly through the senses he does have, most commonly known as touch, taste, smell.  (There are more senses beyond the 5 senses, too, by the way!) In order for Orion to know we're about to come in, we go ahead and gently touch him on his abdomen, crawl up his chest in a slow-to-quick motion (slow most of the time) to where we ultimately tickle him.

We have accidentally frightened him, even when we mean well.  I recall one time I was so excited, I mean, so emotionally overtaken when he accomplished something, I tickled him right away in celebration. He was startled. I hoped I did not scare him to the point he avoids doing that skill again.  (He did it again anyway and I knew better to be gentle.)

*Orion has bilateral cochlear implants. He currently wears just the left processor for brief periods of time in school, especially during music class if he leaves it on.

Orion's Beautiful Boy Blues (Eyes)

Realistic blue eyes by Randy
Image description: A close-up photo of a DeafBlind 5 year-old boy with fair skin and white hair seemingly gazes off into the distance while resting the right side of his face onto his favorite plush red blanket.

The time we spent "trying on" the new scleral shells paid off on Monday, it told us that the one in his right eye was too small. Orion had both "eyes" in the whole time I was out strolling in the area but by the time I got back into the waiting room, the right eye was GONE! No matter, Randy knew this would happen as it's happened for years with his pediatric patients.

The plan: Randy is going to make both shells bigger, the left eye a little bigger, and the right one even bigger and mail them to me this week. Sure enough, they arrived Thursday night while I was out coaching at a track meet! That was only because I confirmed I was comfortable putting them in Orion's eyes. I'm only guessing that if I weren't comfortable, he would just have us stay until the end of the day when he is finished with the eyes.
Y'all asked fascinating questions! No, no, they weren't rude and I'm happy to answer them.

Microphthalmia

Yes, Orion has his own eyes and they're really small, it's called microphthalmia. I tell kids they're the size of peanut M&Ms. Just like peanut M&Ms are different sizes and shapes, so are Orion's eyes because they're not identical sizes either. Ironically his smaller right eye has some light perception while his bigger left eye is totally blind.

Normal eyes still grow a little after birth but I am not sure about those who have microphthalmia. According to a Q & A the American Academy of Ophthalmology website: "The eyes undergo considerable growth especially during the first two years of life, with a second growth spurt occurring around puberty. The length of the eye of a newborn is about 16.5 mm, while that of a full grown adult is about 24 mm."

I remember learning that the front of our eyes are already developed when we were born, but it's the back part of the eye that is still growing. (I'll look for the source of that information and post it here.)

One of Orion's old scleral shells, which was made while we lived in Maryland, sits next to a dime for size reference in a 2 framed image. The shell is wider than the dime.  In the top image, the shell is resting on the table and in the bottom image the shell is flipped over showing the "smooth, scooped out" back part of it that goes over the real eye.

The Scleral Shells

The "eyes" that go on top of his micro eyes are really called scleral shells or conformers. The clear ones look like contact lenses on steroids and aren't really clear anyway. I can confirm that because took a peek through them myself.

These conformers do not improve vision even though they look so realistic. Their purpose is for supporting his eyelids, to allow them to blink, to stimulate the bone in the eye socket and sinus region to continue to develop normally, and last but not the least, it improves human connection, too, when they are painted to look realistic.  Randy explained that one of his clients noticed that more people talked with her when she had the realistic eyes than when she didn't have them in. 

It is my understanding, as I've only 5 Orion years of experience on this topic, that you increase the size of the shells during the early childhood years and when your growth slows down, so does the need of changing the size of the shells.

Blue, it is!

It's a no-brainer that Orion's painted eyes would have blue irises.  The rest of the family all have blue eyes, too.  Orion's real eyes are blue, too.  The pupil of Orion's shells will be clear just like our own pupils are clear.  It just looks black because it is dark inside our eyeballs.

Blinking

Back to the topic of blinking- if you look at your eyes using a mirror and you blink. Do you notice only the upper lid actually does all the blinking work while the lower lid lounges around? Maybe it's just me but go ahead and try that yourself and see what you find. In Orion's case, when he does not have conformers in, his upper lid is unable to blink. It just hangs there and often it gets behind the lower lid. That often caused him irritation. Leaving in the conformers 24/7 is recommended.

I bet you would throw off people who aren't lifting their own weight when you say, "Don't be such a lower eyelid!" 

I just used that line on Thomas and successfully confused him! (To his credit, it was a test and not an actual nagging moment.)

It's Never Too Early

Orion wore his first scleral shell at 5 months old (December 2010). He cried for a while when it was first put in but then that was it. No more crying.  You can read more about the path that led us to this moment in The Second Opinion: The Ocularist.  If his shell fits snugly, he leaves them alone and seems to prefer they stay in because when they're taken out, he rubs his eyes a lot.  If they're too small, Orion will pop them out and immediately loses them somewhere or plays with it in his mouth.  

"I'm Looking For My Son's Eye"

I know many people can relate to this line whether it's their child's, friend's or their own eye!  It's funnier later rather than in the moment.

I recall looking at Orion and suddenly realizing a shell was missing and after looking around in his crib I'd find it in his happy mouth.  So as of this recent Monday, there's an eye looking up from the ground somewhere in Dallas, Texas and a clear "eye" was lost on the world's "busiest" carpet in the world in a bowling alley/roller rink establishment in Lynnwood, Washington. And yeah, I've actually had to answer when asked what I was looking for, "I'm looking for my son's eye."  

Much to my delight, they helped us look for it.  So practical and straight-foward. No-fuss good samaritans. 

The Shells Don't Hurt/We Fear What We Don't Understand

The shells do not hurt Orion.  The most fuss he would make is if we don't get them cleaned when they should be cleaned (when he has a cold and gunk builds up on it) or if 6 months has passed since his last polishing.  The other times his other 6 tentacles would come out is when we need to take out or put in his scleral shells.  Orion is understandably defensive of his face, over his eyes, ears, mouth and nose.  It gets better when he understands what is going on and because of this he doesn't go Kraken on the medical professionals. 

What we do is tap on or near where the doctor will look or do something on.  We would offer him the stethoscope, otoscope, tongue depressor, toothbrush or any tool that is to be used.  Real things, experiences and routines teach Orion concepts quicker than anything else.

Insurance Coverage

The cost of the scleral shells all depends on your health insurance.  Our policy with our previous insurer, Kaiser Permanente, had 100% DME coverage.  DME means durable medical equipment and that includes wheelchairs, walkers, diapers, and yeah, prostheses! Unfortunately some insurance companies have lower coverage percentages like our current private insurance covers only 75% of the cost of DMEs.  If a special needs stroller costs $2,000, we'd have to pay the other 25% which would be $500.  Any help we could get was much appreciated, it's just a bummer to step down to that from 100% coverage from when we lived in Maryland.  

However, in October 2015, Orion was finally approved after 10 months (the epic struggle is another story to be shared) for Medicaid in Texas through the DeafBlind with Multiple Disabilities (DBMD) Waiver.  To be eligible you have to be legally deafblind and have at least one additional disability.

There is no age minimum to apply! (Many thanks to the parents of deafblind Texans before us who fought for this.) So, yes, Medicaid covered the cost of these scleral shells.






So that's how the eyes roll. ;)

An Orion Favorite: The HOPSA dress

I enjoyed attending Active Learning workshops here in Austin so much I went twice and I would go again. There's always something I overlooked or a new perspective on play for kids with additional needs that I realize. All our kids' job from birth to 5 years old is to PLAY! In Orion's case, we'll encourage him to keep on playing no matter what. We can see he tries new things physically and he enjoys it immensely. His glee is contagious!

“When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life.” -John Lennon

Here's a 5-minute snippet of the hours and hours over days that Orion spends playing in the HOPSA dress.

Disclaimer: It is very important to note, you really shouldn't let your kid play in equipment without the security harnesses it provides.  Don't try this at home, folks!

Our H-E-B Happenings

I'm still in awe of moments when I realize something isn't what it seems with Orion.

Tonight I was at HEB grocery store at the corner of Oltorf and South Congress with Orion and Anastasia looking for last minute dinner ingredients. I wheeled my lil wizard around the store picking food and putting it anywhere there was space on his "stroller". I put a huge bag of tortilla chips on his lap, Orion proceeded to hug it like it were a teddy bear. Hmm, who needs a teddy bear when you got a fabulous bag of chips. Stroll, pause, pick, stroll. Repeat.

In line at the cashier, I reached down to touch the bag of chips, Orion found my arm and brought my hand to the top of the bag. That's his way of asking me to open the bag! It dawned upon me that I didn't take him to the store often because of tough trips in the past. That's going to change anyway due to our local store having its own "Caroline's Cart" now. Anytime he's able to touch a bag of chips or pretzels, it was at HOME! The cool signing cashier dude recognized Orion's intense interest in the bag and handed it right back to me after scanning it. Orion held on to the bag all the way to the van, up into his seat, and... yeah, of course I opened it for him!

One day he will sign "open", like I did model it for him tonight but for now, grabbing wrists and hands will do! Clear communication intent happens every day when it comes to food (no surprise!) and anything he can get our hands to touch.

Here's a post from my Facebook wall on September 9, 2015-

"Orion in the new "Caroline's Cart" at our local HEB grocery store [not the HEB mentioned earlier in this post]. Its a cart made with a seat for kids who need more support than the typical cart kiddie seat. He had a GREAT time, so did I with this newfound ease of shopping. I was stopping and going, making fast u-turns in aisles. He tried to eat a potato while feeling me putting/dropping them in the plastic bag. He WILL know how french fries are made. Fun!"

My suave son modeling in the cart.