Little Gifts as Precious as Diamonds

(My Facebook status, 4/10/2014)- 

Orion has given me gifts tonight. It was a looooong day and I don't mind that but it turned out to be a special day after all. He's been generally happy and pleasant at home and school for the last couple of weeks than he has been in a long while. It has been balanced by him having to have someone with him practically all the time (which is perfectly understandable and a great sign). Tonight, I tactile signed "eat" and he immediately copied me (with the back of his hand on his mouth) grinned and got all excited, flapping his hands, wiggling his legs. He was so proud of himself, I signed "yes" on his body to affirm his sign. (Then I fed him.) At bedtime, I tapped underneath his elbows (our touch cue for 'get up'), he cooperated and pushed with his legs to stand up as I held his hands. Now wait for it….. he took steps (forward and sideways) as I held/guided him at his armpits to our bedroom. He touched the door frame and strike plate, stepped into the room and tried to climb our footboard once he felt it. Fast forward to me settling him down on his mat and blanket which was covering the mat. He scooted over enough to get his legs underneath the blanket and practically just got himself "in bed". Little, yet, profound accomplishments by our Orion…

(Let me emphasize this: The word "little" in my vocabulary is not conventional, except for those of us in the "special needs" community. Another face of a little diamond: Think of a chihuahua who doesn't know he's little.---H)

I've Fallen Down the Deafblind Rabbit Hole: Tactile Sign Language

Orion put his occupational therapist's hands on his face after school one day.

I've fallen into the rabbit hole of various communication forms for Deafblind kids and did not leave a stone unturned since my son, Orion, was born 3 1/2 years ago.  Well, maybe not the rocks of Deafblind Communicator (he could use this one day) and speech output devices (not tactually accessible, therefore he will not use it).  So, the one communication mode for the sake of discussion here I picked is tactile sign language.   I am especially interested in this because Orion's family members are visual sign language users.  

When Orion was a wee baby, I wondered just how does a Deafblind baby grow up into a tactile signing Deafblind adult?  He's not going to put his hands on my signing hands as a little baby.  Because of that, my husband and I just followed our intuition and signed onto his body.  Go to him.  It turned out that "signing on the body" actually under the umbrella of tactile communication along with very similar mode of touch cues.

Orion currently uses (receptively) touch cues/signs on his body; object cues; tactile symbols; and tactile sign language. Expressively he is signing gibberish, although they're the same familiar-to-us movements and intentional, but some signs come out pretty clear in intent.  

Some examples are: food/eat, bread, more, want.  He will press his open hands down on his chest if he wants something.  What works is that I know he wants something without him going as far as crying; the next thing is to find out what it is he wants. When he puts his hands together, as if in prayer, he's asking for several possible things: sandwich, cracker, or more (of whatever he was just having).

The more we try to tactile sign with Orion, the more interested he seemed.  He would put his hands on ours, or around a finger more than he has done in the past.  Concepts are one thing to wonder about but he is fascinated by our hand movements.  He would sign-babble a few signs that we don't understand but has distinct handshapes.  For example, he would form his hands into "one" and pat the sides of his face with this handshape.  We are still using touch cues but whenever we can, we will try tactile signs first to give him more experience staying with our hands and to watch his responses to see if he understood our signs.

One interesting challenge with using tactile sign language with Orion is his tendency to lay on his back, on the ground. Anyone who knows Orion knows it's not easy to get him to sit up in a stroller or chair for a long time. You'd need to get down on your knees and hover over him.  When I want to sign "Mom" to him, I:

1. Get down my knees.
2. Bring my face/chest within an Orion's-arm-length.
3. Either tap his shoulder or bottom of his elbow and tactually move my hand from there to underneath his hand.
4. Sign as you would to a visual signer (if your hand touches an area on your face or chest, let his hand travel with your hand to that area).
1. Do not grab his wrist or hand with your free hand or signing hand.
2. Sign slowly so he can hold on and stay in constant touch with you.

I feel that using Hand Under Hand strategy showed Orion that we can get so much information through touch.  Instead of only objects, he's also checking out our hands and what they were doing.

Maybe I am my worst critic, I do have this feeling he's been ready for a while to explore tactile signs.  I'm saved by also being an eternal optimist, too, since I know the right time to start is right now.

Today, Orion and I were in the produce department of our local HEB grocery store.  He was amused with me signing "grapes" (tactile sign) with him feeling my top hand.  He also had his hand in the bag of grapes and eating a couple, too. What a nice mix of tactile signs and concept building!  I also showed him a cantaloupe and apples and he lost interest in touching fruits by the time I got to lemon and limes.  I know I'm bringing him back to the produce department wonderland!  It is so much more tactually and aromatically interesting than the aisles full of cans, jars and boxes.

At home, Orion does not have object cues or tactile symbols ready by him for him to use expressively.  Would he have used the other options if they were readily available? Who knows?  

I also came across this great document on Project SALUTE's website that reviews various tactile learning strategies: http://www.projectsalute.net/Learned/Learnedhtml/TactileLearningStrategies.html

Non-24 is a Pain-In-The… Energy!

Orion, with his scleral shells back in after a few-month hiatus.   Here in this Instaphoto collage, he covers his face with a favorite blankie, pulls it off with eyes closed, and finally opens his beautiful white eyelashes. He definitely can be Storm's little cousin (Marvel comics). (3/15/2014)

Last year, the 2012-2013 school year, I was with Orion every morning he was at Texas School for the Deaf's Parent-Infant Program house (PIP is now called Toddler Learning Center, TLC)  In the beginning we went twice a week and that evolved to three times a week.

This school year, Orion has been going every day from the arrival of his bus* at TSD at 8 a.m. to parent pick-up at 11:30 a.m.  He spends his mornings with his intervener and teacher.  We are in the middle of transitioning him to staying full days just like the other kids his age.  So with the time extension he starts his morning with the same teacher he had last year ("A") and then his experienced Deafblind intervener  ("L") arrives at 11:30 a.m.  Presently he is staying until 1 or 1:30 p.m., depending on the day of the week.  And there's his naps...

Orion is notorious for surprise naps, taking naps earlier, or later, not at all or really long naps after a night of waking up.  With Orion's near-total blindness (he has a little light perception in his right eye), it brings Non-24 Hour Sleep-Wake Syndrome.  It is a circadian rhythm disorder and there's a campaign going on to spread awareness about this syndrome that approximately 70% of totally blind people experience.  My mother shared this website with me after hearing it on the radio one day:

http://www.non-24.com

My knowledge of Non-24 has been superficial all these years.  I know it explains why Orion's sleeping (thus ours, too) is out of whack.  I've always thought Orion had a 25-hour body clock.  We've noticed he'd go to bed around an hour later and later each night to the point where he's awake all night and sleeping all day.  His clock keeps going forward until it returns full circle with our 24-hour clock.  When the daytime sleeping happens, melatonin has no effect at night.  That period is rough for him and his parents.

I was reminded what it felt like having nights of uninterrupted sleep during a recent 4-night stay in Phoenix, AZ with fellow OHOA module creators.  Three nights of uninterrupted sleep in a row!  It was awesome!  I haven't had this in a looooooong time!  I'm sure the pillow-top mattress contributed to the miracle, too.

Thankfully, Orion's big siblings are not affected by his crying.  We recently stayed in a Galveston area hotel for two nights, for the kids to go to Schlitterbahn's indoor water park and Kemah Boardwalk. Two nights in a row Orion was crying and arching/dropping his back, bouncing on the very same bed Anastasia was sleeping on.  She… did… not… wake up!

Thomas stayed with Orion at the hotel, we could not imagine him writhing and complaining at Schlitterbahn, too.  Imagine paying $26.99 to get into Schlitterbahn to hold an angry 3-year old the whole time there!  (It did happen to me before, paying admission for myself and Orion at Imagine Children's Museum in Everett, WA.  I held a fussing, wiggling Orion the whole time while Skyler and Anastasia explored and had fun.)  Hopefully everything will work out next time for anywhere there's paid admission for "entertainment"!

We feel Orion knew he was not at home.  He was cranky most of the time in the hotel room.  He was happy when he was in his usual car seat. Even during the 3 hour drive to and from!

Anyway, back to the point.  I already knew what Non-24 is but what I'm learning is how it affects individuals.  According to the website, those who have it experience unexpectedly falling asleep, difficulty concentrating, mood is affected, decreased productivity in school or work, and the like.  One line stood out to me: "You're frustrated because no one seems to understand what you're going through."

Frustrated because no one seems to understand… Beyond that is the fact Orion is not yet able to tell us what is bothering him.  Does he have a headache? Does he just want to hang out on the floor at a home?  Is he feeling tired beyond belief?  Does he want some of the cappuccino he's been smelling?  I may actually just give him some!  My oldest boy, Skyler,  steals sips of my caramel Frappuccinos when he can.

Heck, if you think about it, if you don't get your caffeine, how do you function on botched sleep?  Or if you're wasted from a night of unconventional sleep and don't do coffee, espresso or energy drinks, how do you get through the day?

An all-teeth, caffeine-free smile from Orion!

We have been giving Orion a 3mg melatonin pill every night, grounded and mixed into yogurt or applesauce.  It does wonders getting him to fall asleep at bedtime.  That's it.  Falling asleep is it's job.  Full nights of sleep is another thing.  Orion does have nights of full sleep from time to time, 6 or so hours of sleep, or so we think…

Last night Orion slept at 10:30 p.m. (thank you, melatonin!) but woke up at 3 a.m.  Oh, joy!

Non-24 is real.  Non-24 is a real pain in the… energy!

Until the next blog post, wish us all deep, rejuvenating sleep!

*bus: Not all roses for Orion.  He doesn't cry at all when we drive him to school ourselves.  Car seat preferences? Smoothness of ride?  Big brother Skyler can only do so much.  We're going to sort this out so Orion is happier on his bus rides to school.
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Curious about OHOA?  A brief description of Open Hands, Open Access on nationaldb.org.  Feel free to poke around nationaldb.org and the link to check out the content that is already available via OHOA.  I am so excited about the development of OHOA and see that the future in education is bright for Deafblind youth as well as interveners across the USA!

"Be Thankful He Can See"

Orion's in the sky!

We need to be ambassadors/public relations person for our loved ones. Especially when not everyone understands a kid who is Deafblind is still a kid.  Life always finds a way.  Our son laughs, plays, gets stubborn, makes silly faces, feeds himself by hand, gets mad, upsets trash bins, cries, stays up late playing, makes a happy mess regardless of the unconventional number of senses he has.

I love reading blogs.  I naturally come across individuals and family members sharing the positives, the downs, and their insight on their experiences.  Through these blogs the individual comes out into the foreground with the disability pushed into the background, perhaps since our individual has overcome them!

What spurred this post was reading what a fellow mom wrote on her blog, "Mommy Has Issues", about hearing her son repeat what his classmate said to him about his blind sister, Oli, who has autism, too.  It was so ignorant and insensitive.  Our job is not going to ever be over.  We are going to have to keep on teaching and teaching, finding the unreached depths in our community about our loved one(s), that they're people with the same rights, too.

A couple years ago I'd said this was our new normal.  It feels normal now, yep.  I don't know when and where we broke into our comfy running shoes of accepting challenges that is normal for our family.  I used to notice the stares during our family outings but now I just smile and put on my movie star sunglasses and go along my way.  It's probably Orion's amazing white hair that snaps heads his way and they notice his eyes (whether he's wearing his scleral shells, a.k.a. eye prosthetics, or not) on their double-take.  We rarely notice rude expressions, very rarely!

I love to explain to ASL signers (Deaf or hearing and all in between) about the needs and challenges of congenitally Deafblind kids.  It's spreading enlightenment and educating our supporters in our community around Orion.  It enables them to feel comfortable around him and know more about his communication ability and needs.

I wish I could do the same whenever  I am caught in an elevator or waiting in line when I notice hearing people checking Orion out.  I can't understand what they're speaking to me when they're obviously talking about Orion.  I do get some lines such as, "He's so cute", "I love his hair".  Thanks, I do agree with you on that!  Some of my replies are, "He's deaf and blind but still knows how to have fun", "He didn't hear you.  He's Deaf, too.  But you can rub his arm to say 'Hi'" (and most are still unsure what to do), or jokingly say, "I swear I didn't bleach his hair!"

Going off on a tangent away from Deafblind son public relations now….

It's a blessing to be Deaf, yep!  I mentioned in a past post it's heavenly to be able to pluck my hearing aid out of my ear and enter complete silence amid unsortable audible madness.  It's probably a good thing that I wouldn't hear or understand ignorant comments or questions regarding my son.  I do leave a huge benefit of the doubt that the speakers mean well, are admiring Orion and perhaps contemplating the obstacles Deafblind individuals face and circumvent.

When I do understand what a hearing individual has said, that is uncalled for, I do not lash back.  First  of all, it took a lot of energy to speech-read, figure out and understand.  All that computation took place, then I am shocked and the moment has passed and I've got "If you can't say anything nice, don't say anything at all" grounded onto my brain.  What's left is… I don't know.  I know I should've said something, but, ugh!

One grandmother was observing Orion and I playing at a children's museum one weekend back in January.  She approached me and was in awe of our interaction.  Something indicated to me that she did not understand Deafblind kids so I opened up a little on the topic of communication, real objects, tactile signs, and that he does understand what I'm communicating with him.  She eventually gets her grandson to come over.  Grandson doesn't know what's up, looks at his grandmother and at Orion on the floor next to me.  She speaks something to him then she turns to me and says in a happyish tone, "I want him to know he should be thankful he [grandson] can see."  What?!  Using Orion to teach an apparently ungrateful grandson? "Oh, I see."

Orion and I slipped over to a different exhibition where I explain to my dear hubby what was going on.  His reaction, I thought was appropriate and we were in a different area by then. ;)

You can't help how others think, how they chew on their thoughts.  It's personal.  If it's unfavorable it's a good thing it's staying in between their ears.  However, when it's said to your face, that's another thing. Ugh.  Digest it and do what you know with it (associated with the final step of digestion).

So, with all that challenge to communicate that's why I love to slip on my movie star sunglasses/horse blinders and whisk our family off onto the next fun family activity.

Object and Touch Cue… and Crying (Video)

Hi- It's happy-go-lucky me! I know, I know, my eternal optimism may rub the wrong way on some folks.  But today I have something a little different for you that's not so rah-rah: crying!  It's on video!  It's not something I'm proud of but something we all accept as part of raising kids (up to a point!)  The purpose of the video is share with you examples of us using an object cue and touch cue to communicate with Orion what's going on.

Whether it is Orion in this video or my other kids bickering in the back seat of our van, I have the luxury as a Deaf individual to thwock my lone hearing aid out of my ear and set it down.  (Yes, I lost the other one some time ago.)  And enjoy that blissful silence… perhaps with some caffeine, vanilla syrup and milk froth.

And the crying ensues:



You can learn more about object cues an touch cues at Project Salute's website:

Object Cue: http://www.projectsalute.net/Learned/Learnedhtml/ObjectCue.html

Touch Cue: http://www.projectsalute.net/Learned/Learnedhtml/TouchCue.html

No, My Dog Didn't Eat My Keyboard: My Excuse For Not Blogging Lately

Orion and Dad swings away at the Lady Bird Johnson Wildflower Center, Austin, TX.

My mind has been brimming with continuous feed of newfound knowledge, realizations, discoveries, developments that's been keeping me away from blogging lately.

What's the inspiration?  Deafblind Intervener information!  I was invited to test some Open Hands, Open Access (OHOA) online modules that were developed for intervener training (not available nationwide yet, still in development). From the modules I've been a "student" in, I picked up increased awareness and skills I can use with Orion.

I can tell you right now Orion LOVES affirmation. Affirmation is letting him know I see what he's doing, I recognize his actions, basically by copying what he does.  He laughs, he smiles in response… we're having experiences together. I could go on and on about the other things I've been enlightened with. Another day!

In addition to testing, I am also so honored to be a contributor in one of the upcoming modules as a parent of a deafblind child.  The contributors are teachers (of the Deaf/HH and/or Vision), interveners, state outreach specialists, parents and so on.  I am learning so much from my module buddies!

You can read a little more about the OHOA modules at: https://nationaldb.org/library/page/2269

You can watch an upcoming webinar, "Looking to the Future of Deaf-Blind Services and the Role of Interveners", (February 12, 2014 at 3 pm).  You don't need to register to participate.  It will be captioned and recorded.  To link to the webinar, visit https://nationaldb.org/events/detail/0/187

Life isn't all rosy, yes, I'll take life with the pits and stray bones… I am so thankful for things to be motivated about.  Orion is growing up, his communication is developing slowly but truly, I'm tuned-in better on his movements.  I'm puzzled more because I recognize meaningful movements and need to figure them out.  I know what to watch for now and how to respond to Orion when he makes certain movements.  I feel empowered and able to elaborate interactions with Orion and his environment.  (It takes a village to raise a Deafblind child.  His teacher and intervener at school are doing their part, too.)

Milestar: 'Tactile Turn-Taking (Video)

One of the milestones we've been looking forward to with Orion is turn-taking.  This is another step in communication.  This communication is not about words, it is about action and play.  When you have a conversation with someone you both take turns sharing your thoughts.  This video shows the action of the little green plant shoot of interactive communication emerging out of fertile soil.

In this video you can see Orion and Dad are using the fingers on the same hand to tap, similar to playing the piano keys.  At first they were tapping each other at the same time.  We knew Orion liked it because he was smiling.  We kept doing this anywhere.

One day, when I arrived at Orion's school at pick-up time, he was fussing.  I touched him and then when I started tapping him we could see he recognized the tapping and he stopped fussing.

Then on December 11th, the coolest thing happened- Orion responded to Dad's taps and they took turns tapping!  The clip I included in the video was the later part of the moment.  You can imagine Thomas' excitement and hurriedly signing, "Get the camera, get the camera!"  As we all know now, we did get something to record the moment… barely!

Since Orion doesn't do tricks when prompted, we're thankful for videos of when he does them naturally- when he wants to do it himself.