"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.

Deaf/Deaflblind Communication: Whatever Works!

"If you think about it, the cool thing about two people knowing sign language, regardless of hearing, or tactile signs regardless of sight/hearing, the communication access is 100%."

Dad and Orion touch fingers at home. (12/11/2013)

I know there are many different opinions out there on the topic of communication regarding Deaf and/or Deafblind children.  This is my perspective on communication as a Deaf person who started out learning Sign Exact English and spoken English (with hearing parents who could sign) later learning ASL in middle school, continuing developing my ASL skills through college, being the mother of native ASL signers and wife of a Deaf ASL user.  

I occasionally visit a website called intervener.org because I am fully in support of using interveners for Deafblind children in schools (and beyond).  This year is Orion's first school year with an intervener. Some time ago, I came across a topic on their forum (anyone can set up topics) titled, "Signing vs Speaking".  The person who created this topic was looking for advice on how to respond to caregivers when they're concerned that tactile sign language will impede their family member, or learner, learning how to speak. Good question! 

The short answer for any individual learning a 2nd language: there may be a slight lag in learning either language but never mind that since that individual will be bilingual and bimodal (bimodal if either language is signed). There is research on this topic that I don't have in my hands to share but will when I'm able to do so.  Secondly, speaking is a skill and not by itself a sign of intelligence.  

Now if you talk about this for a pre-lingually* Deafblind individual's communication skills, that's a different game because it is an "information-gathering disability". This is where we go out on a tangent or put an asterisk next to it because groundwork needs to be laid first, ideas (information) precedes the words (communication).

Signing versus speaking is not a new topic to me as a Deaf individual.  I recall when I was around 13 years old (I'm not going to tell you how long ago that was), I realized it was feasible for people to learn sign language since their arms weren't broken, compared to Deaf people trying so hard to speech-read to understand what a hearing person is saying, with or without listening devices.  If you met me recently or have known me all my life and don't know sign language, I love you anyway. I hope you know that. 

I've experienced typing what grows into a blog post from a mere intended few sentences in comment boxes on forums, blogs or Facebook while Twitter was smart to spare themselves from long-winded kids like me.  Below is what I shared on the forum.

"I'm a Deaf mother of 3 children- Deaf, hearing and Deafblind.  On topics that cover communication, I've taken workshops given by Linda Mamer from BC, Canada (communication choices, senses used for communication, tools, iPads, etc); Kat Stremel Thomas (about communication with DB kids who have CI's).  I have woven together things I learned regarding communication I learned from these two presenters, the Internet (nationaldb.org) and my own life experiences. 

The title for this topic caught my eye: "Signing vs Speaking"… how about getting rid of the "versus".  There's no versus. People and parents have felt pressured for a long time to "choose one".  Why do we have to choose one when we can use many available modes of communication?   

There's a whole array of different communication choices (Total Communication), use whatever is available. If you don't know sign language, now is the time to add that to your available abilities.  Start with the most common words you find you need to use. Use whatever is best and most accessible to the child.  What a child uses for expression may be different from what he needs for receptive communication. 

Our communication options need to remain as diverse as Deafblind individuals.  I visualize looking on the top of the heads of individuals standing on a square X-Y chart ranging from usable vision and hearing in one corner and in the kitty corner are totally deaf-blind  people (like my son).  We should be able to dance all over this chart communication-wise.

Simultaneous communication, a.k.a. "sim-com" is signing and speaking at the same time. This is not Total Communication itself but is one of the options along with other communication modes under Total Communication. Be mindful of overloading the child's senses (processing for listening and seeing/feeling at the same time).  One could label the signs by speaking it (or the other way around).  If a child does not want to listen (like my son who has bilateral CIs who doesn't want to wear his processors but we are working on it), you can fall on the safety net of tactile sign language, touch cues, tactile symbols. 

For Deaf/Deafblind people communicating with hearing people, hearing aids help, CIs help.  If a person can lip-read, too, that helps piece together the puzzle depending on how usable their vision is. Pen and paper, Pro-Tacticle, Haptics, spelling in hand, gestures, iPhone/iPad, etc. Those are "tools" you would find on a Deaf/Deafblind person's communication tool belt.  

If you think about it, the cool thing about two people knowing sign language, regardless of hearing, or tactile signs regardless of sight/hearing, the communication access is 100%.   

That doesn't happen in society overall but at Deaf/Deafblind gatherings.  A pipe dream regarding the society part, unfortunately. However, we can do something about it from where each one of us are and start making a difference today."

End of forum post.  

Like my mom says: "Whatever works." 

Whatever works for the child!

Additional Musings

Hearing aids were not available when Helen Keller (1880-1968) was growing up.  Her communication mode was tactile fingerspelling. Yes, she was one of a kind and I think she would've shone even if she weren't deafblind.  Yes, she was born hearing, sighted and able-bodied, lost her hearing around 1 1/2 years old, beyond exposure to spoken language and experiencing the world around her with fully-functional senses.  We can see she was successful communicating through her use of tactile signs and always having Anne Sullivan around (can we say intervener?!).  

If you're new to this topic on my blog and/or itching to leave a comment here (I welcome you to do so),  I encourage you to also read, My Attempt At Cramming Importance of What's "Between the Ears" into a Nutshell, http://hexwit.blogspot.com/2010/11/my-attempt-at-cramming-importance-of.html

*Prelingually Deafblind (4th paragraph): Deafblind at birth or before language learning begins.

The Withrow Kids' School Pictures

Anastasia, 2nd Grade

Skyler, 3rd Grade

Orion

Now we have all of our kids' 2013-2014 school year pictures with the arrival of Orion's prints yesterday!

Skyler and Anastasia got great pictures the first time around and didn't need to go back for a retake.  Orion, however, had different plans!  He was sleeping on the first day and he would not wake up despite my efforts.

The day before retake, I made sure to trim down Orion's snowy white hair but I forgot to put his scleral shell back in his right eye.  I drove to TSD in the morning realizing that and it's still sitting in a baggie at home. Luckily, Thomas found it for me and met me at school.  I did my magic, putting it in at the library where the retake photo shoots were.  Orion was upset but onward we went.  It was my goal for this year's school photo that he sits independently.  I've enjoyed having to have me in the picture, holding him on my lap, during the previous years but this is the year he sits by himself.

We set him down on the stepped sitting block.  He was startled by this new thing he's been put upon, having to sit up by himself, and he might've been very uncertain about his surroundings. His intervener and I tried different things, including using books to create a breeze, to get him to smile.  He was not having any of it.  His head was tilted down and he was fussing professionally.  Thankfully the Lifetouch photographer was understanding and offered to try again if we brought him in later.

At the end of his school morning, Orion, his intervener and I went back to the library to try again.  What's different this time was that Orion was calmer and settled down; he had a nice morning with his intervener (highlight: he walked in the shallow pool water with her!); the shell has been in his eye for 3 hours; and he's sat on this stepped block before (Hello, "experience"!)  He fussed, we got right to work… his intervener created a book breeze, I started massaging his little piggies out of frame.

Soon his stern face was brightened by a smile and that when this precious photo was taken!  Hallelujah! We did it!!  I felt like we won a game show from behind.  If any of you watch Family Feud's Fast Cash, that's the feeling!  Yay, Orion!

Oh, right, and he was sitting by himself, too.  At 3 years of age, Orion Withrow sat alone for his school picture.

My thoughts take me to this: Thank you for doing this for us, Orion!  I'm sure there are situations (that I can't think of) where a photo may be important to a blind person but it's certainly special for family and friends.  I need to figure out how to make posing for pictures special for him, and the special results are for us.  I'm curious if anyone out there has ideas that turned out great for blind/deafblind kids.

I leave you with some throwback school photos...

2011-2012 school year in Maryland: Skyler (2nd grade) and Orion (PIP) at Kendall School (Washington, DC); Anastasia (Kindergarten) at Glenn Dale Elementary.

Two Brothers Ride The Yellow School Bus

This is the 99th post on 'A Mom's Musings'!  Now I can sing, "Ninety-nine posts on my blog, someone hacked it and deleted a post.  Now there's ninety-eight posts on my blog, someone hacked it and…"  

Anyway, back down off the wall I go and in the computer chair I sit!

Orion's first school bus ride to his second day at Texas School for the Deaf along with big brother Skyler.
8/28/2013.

I'll get right to the point here, Orion is doing really well while riding the TSD bus to school from home.  Yes, he's riding the bus!

I didn't even imagine it at this time last year.  Kids who go to PIP (now called TLC, Toddler Learning Center) at TSD can ride the bus.  Some do and some are chauffeured by their parents. Last year, I brought Orion to and from TSD 3 times a week (he started out at TSD 2 times a week).  It got old but Orion is worth it and I got to see his teacher work with him as well as witness the other cute little Deaf toddlers learn.  

Knowing Orion was going to be in school 5 days a week for the 2013-14 school year and that his big brother Skyler would ride along with him, we had to give bus transportation a try!  We also decided that since flexibility with time is important for Orion and his teacher or Intervener at the end of the morning we would come and pick him up from the TLC house every day.

So, in the morning of the second day of school, the bus rolled up our lane and stopped in front of our house.  I put Orion down and buckled him in all snug like you see in the picture above.  We put Orion's stroller in the back of the bus and off they went to TSD.  I don't like to talk about tears here, I rock happiness and positive thoughts. But yeah, OK, I cried.  OK?!  Orion's growing up, my baby's growing up!  It was a relief, too.  It was easy to get it back together since that's five days of a couple free hours in the morning!  Think of the naps I could take to compensate for my messed-up sleep.  (Unfortunately, like my mom knows, I don't do naps. I only crash when I'm absolutely exhausted. :P)

It turned out that Orion cried during the ride.  I think he cried some of the way each morning he rode the bus throughout September. 

Orion's Fun in a Box, made by yours truly. 8/28/2013.
Photos edited in InstaPic Frame.

Meanwhile, I made a "Fun in a Box" for Orion; we enlisted the comfort of his hole-y crocheted blanket from Gramma (he loves holes); and encouraged Skyler to just be there for Orion even if he doesn't calm down with his touch.  I was really concerned for his emotional well-being but better reports were coming in about Orion as the month went along.  We got a nice report from another student on the bus (we worried, we asked!) that even though Orion was crying, he's still improving and Skyler was so good with Orion and was doing a great job comforting him.  So that was a relief and we were proud of Skyler.  It also helped that we were the last stop on the route before they boomeranged back to school.  

There were a couple instances where Orion would hold himself in a rigid plank, refusing to fold and sit in the seat.  If coaxing or trying to tactile sign "SIT" didn't work (it worked sometimes!) we would drive him in.

It took a while for Orion to get used to it.  What an odd experience!  Odd seat!  Not a typical car booster seat but a 5-point harness practically coming out of the bus seat itself, no headrest, sides, etc.  The driver shared with me that Orion only starts crying when the bus is stopped (at the light, in heavy traffic) but is fine while it's moving. 

Whenever we knew Skyler would not be on the bus, we would not put Orion on the bus alone so instead we drove Orion to school.

So like you already knew from the beginning, he's gotten used to the bus rides and is doing so much better.

Orion naps with the hole-y blanket Gramma made for him. 11/2/2013.
Photo edited in PixlrOMatic.