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.

Our Experience With Early Intervention Home Visits

This is Part Two on the topic of Service Providers.  Part One is "Orion's Service Providers Resumé".

Back Then: Orion shows off at the Kendall Parent-Infant Program room.
(Sometime during February-April 2011, Orion is  7 to  9 months old.)
Photo thanks to Kendall PIP teachers!

We have experienced a few different early intervention (birth to 3) home visit set-ups here in Texas and back in Maryland: a visit by a single service provider, a visit by two service providers, a visit by three or more service providers.  In my case, because we require an ASL interpreter to communicate, an interpreter will be there at these visits.  A few service providers knew sign language so an interpreter was not necessary.  Occasionally, the state Deafblind project technical assistance person (for birth to 5 years old deaflbind kids) will come to our home or see Orion at school.  They have always brought valuable insight and tips for those who work with Orion!

Single service provider visit: one-on-one with Orion.  My view on this is that it maximizes his time with the service provider for the amount of time documented in his IFSP (example: 30 minutes once a week).

Paired visits (2 providers):  The amount of time with whatever service can get fuzzy here, for example, is it truly 30 minutes from one provider and 30 minutes from the other? However, I feel it is balanced by the teamwork and cross application of skills and knowledge in their specialties that Orion benefitted greatly.  One beautiful example of combined specialties is speech-language teacher ("SLP") and occupational therapist (OT) doing a language and fine motors activity with Orion. The activity was snack time with self-feeding being the OT's bag; offering choices and modeling tactile signs or touch cues being the SLP's bag).

The two providers (4 eyes together) observed and shared their findings, musings and their professional knowledge with one another and bounced ideas off another.  Everyone benefitted here.

Party! 3 or more providers:  This is what Orion had in Maryland, all of the providers would show up together, along with the interpreter for an hour and be gone on their way.  It is very similar to the paired visit that I described above but four was a party.  Yes, everyone benefitted.  We did see teamwork, learning, insight, observations, sharing of professional knowledge.  The downside is if you break down the numbers, four professionals in an hour means 15 minutes each provider.  That doesn't seem to be enough time.  If you're not comfortable with this, you need to bring it up and see about truly following the time documented in your child's IFSP.

Occasionally there would be scheduling challenges for that number of people but I certainly welcomed the visits by those who could make it and those individual make-up visits.

Frequency of Home Visits

Orion started out with a "party" visit every two weeks as an infant; we soon increased that to weekly "party" visits.  I can't recall when. Maybe it was at a 6-month IFSP review or annual review.  I know you can ask anytime to schedule a meeting to discuss changes to your child's IFSP or IEP.  Some service providers may only come out 2-3 times a month (for Orion it was usually the PT/OT who came out 3 times a month), it depends on you and the team's discussion during the IFSP meeting. (This does not include Orion going to Kendall School PIP twice a week.)

During the home stretch of Orion's last year in ECI, (not including Orion going to TSD 3 mornings a week for D/HH or vision services) we would have weekly home visits from the OT/SLP and then the PT, and a home visit once every two weeks by O&M.

This also does not include ER visits, medical appointments and therapy appointments (through insurance) we needed to go to!  Thankfully those medical visits have reduced in number.  We are currently waiting to start OT and PT visits covered by insurance, separate from the school services.

Team Meetings

This was one of my favorite things to do with Orion's "Austin" IFSP team, monthly team meetings!  I'm always with Orion for his home visits.  Well... 99% of the time!  But Orion's service providers can't do that.  This is where team meetings are extremely helpful and insightful.  People can touch base on what each person is doing with Orion; learn something new that Orion has been doing that they were unaware of; the PT can tell the whole group about a technique they can incorporate for Orion's activities to be beneficial in a multi-faceted way.  Think about the input and insight the lone service provider gains and contributes at these meetings!

The vision consultant and O&M has shared with the group the needs of Deafblind children in a way that providers can connect better with Orion, learn what resources and strategies that have been used with other Deafblind children and sort out what is a Deafblind/information gathering issue or what is a physical issue. For an an example: Orion does not walk.  It is not because he is weak but because he hasn't seen people using their legs to walk around, thus he's missing the curiosity and motivation for him to try to walk and develop the strength his legs need.

...and chocolate therapy!
(Sometime during his 2nd of 2 years at Kendall PIP,
photo thanks to PIP teachers!)

Too Much Therapy?

Crazy, huh?  No doubt it caused stress for everyone in our family in different ways.  The other option of dialing it down and Orion having occasional therapy, to me, is unacceptable.

It is work, it is a work of love.  I believe we need to include everyone else in our family with Orion.  Not just "Orion and I" or "Orion and Daddy".  We need to make sure to play with Orion, make him laugh every day because not only it is good for him, it is good for us, too!

If there is a way for you to include family members in therapy (and family play time), everyone wins!  If others see how the OT or PT works with your child, they will be empowered and comfortable doing OT/PT "homework" with your child.  The SLP or D/HH teacher, in her work, models tactile sign language or touch cues that others can pick up on and use comfortably with your child.  Skyler likes to play rough with Orion and since he also has seen some PT visits, he would make Orion stand and sit.

So, with as many family members involved and sharing in the moments and fun, it's all worth it.  (We don't have everyone we want involved. :P There's a couple grandparents, aunts, uncles and cousins who aren't nearby.)  I'm not the only person in the family who celebrates Orion's little accomplishments!

Orion's Service Providers Resume

(Part One on the topic of Service Providers)

When I think of "Team Orion", I'm thinking of family (unfortunately we live far from family), friends (far and near), teachers, consultants, outreach and service providers.  I have yet to follow through on respite care providers.  Service providers have been part of Orion's life since he had his first IFSP intake meeting at 2 months old!

Orion's Service Providers

Here's a little service provider resume of Orion's.  Orion "graduated" from  Austin ECI (Early Childhood Intervention) and IFSP on his 3rd birthday back in July.  He now has an IEP and is one-hundred percent a Texas School for the Deaf student!  With this change, all of Orion's service providers are at TSD.  All of them!  (Audiology, speech-language, physical therapy, occupational therapy, orientation & mobility, Deaf and Hard of Hearing teacher, vision consultant and finally, an intervener!

When he was under Austin ECI (Fall 2012-Summer 2013), his service providers were through ECI (OT, PT, SLP) and TSD (D/HH teacher, O&M, and vision consultant).  I was thrilled that Orion could receive O&M when we moved to Austin because we didn't have that before!  I didn't even think about asking for it back in Maryland, all of this still was new to us then.

From his intake in Maryland in September 2010 through to July 2012, Orion had a wonderful team of caring service providers via Prince George's County. He had a D/HH teacher, TVI (Teacher of the Visually Impaired), PT and OT. All came to our home.

During that time, we also happened to live 25 minutes away from Kendall School (for Deaf/HH children), on Gallaudet University's campus in Washington, DC.  Through Kendall's PIP program he was seen by D/HH teachers, OT, PT, SLP and Audiology.  All the visits were at Kendall.

Service Providers from two sources, only in the Metro DC area!

Getting service providers through two different agencies is what is unique about the Metro DC area, with Gallaudet in Washington, DC and all these county Infants and Toddlers Programs in Maryland and Virginia.  You wouldn't have this perk anywhere else!

What was awesome was that one time Orion's Prince George's County service providers visited him at Kendall School and met their Kendall counterparts.  Also Orion's D/HH teacher came to our home during one of his home visits by Prince George's County service providers.

Random Photo: Orion takes a moment to figure out which way he will eat his Oreo.
August 15, 2012.

Next Blog Post: Different Combinations of Service Provider Home Visits- Pros and Cons

Summer 2013 In Photos

This summer we experienced family; friends here in TX; over there in Washington state while Thomas was at the 2013 Deaflympics in Sofia, Bulgaria; traveling; beaches; sleep deprivation due to fussy Orion; checking off items on the list of places to visit and things to do; etc. Every summer we notice the kids have grown in many ways.

We were not able to see everyone we wanted to see, we got so busy! We'll see you on Facebook and finally, next summer.

These are just some of the sights, friends and family; many were left out as the Internet is not our old-days living room slideshow review. 

Enjoying a fast-melting Ikea cone.

Skyler practices typing on the Perkins Brailler.

I'm glad Skyler insisted on taking Orion down the slide. 

They did at least 20 times together! (Austin, TX)

Orion and I in our precious shade at Silver Lake (WA).

We visited with Christine "Coco" Roschaert, a Deafblind globetrotter 

extraordinaire, motivational speaker and advocate. 

Photo thanks to Christine "Coco" Roschaert.

Orion at Bothell's Blyth Park overlooking the Sammamish River. 

His great-grandpa John Byron Lightfoot was born in a house not far from here. 

Orion got a kick out of the hole Skyler dug part of the way to China. 
(Brackett's Landing, Edmonds.) 

The kids and Uncle Jack at Brackett's Landing, Edmonds. 

My best beach finds! 

One of the usual Brackett's Landing sights: ferry, water and sunset. 

Just 2 hours and 40 minutes' drive north from Bothell, WA takes us to Vancouver, BC.  Skyler and Tasia have passports from when we went to the 2009 Deaflympics in Taipiei, Taiwan; we used Orion's birth certificate for the border crossing.

The kid pile and I get to see dear Jodi!
Photo thanks to Jodi Birley!

Air is coming out the top... You know those floating ball dancing in the air due to sitting on strong air flow? He loves blown air and breezes so this was a hit for him, motivating him to stay standing. It lasted a good 2 minutes! 

(At TELUS World of Science, Vancouver, BC.)

During this moment he alternated between tippy toes and feet flat on the ground.  This photo still amazes me. Orion looks so different standing vertical! I love it.

Yes, museums inspire kids in many ways!

View outside TELUS World of Science. 

We lounged around at Kitsilano Beach. We had very warm and beautiful days every single day we were visiting.

*Eyes inhaling the sweet view of mountains and water*
Behind Anastasia: trees on the left is Stanley Park; the high-rises is downtown Vancouver.

Orion usually enjoys snacking on a red delicious apple. Small and medium sized  apples are excellent for grab-and-go food for anyone.

Skyler awash in blue light from the beluga tank at the Vancouver Aquarium, which is in Stanley Park. 

A Stanley Park sight. Anastasia was in awe, looking up at the horses.

I just had to introduce the kids to the totem poles.  I've always loved Haida artwork and designs.

Hollow Tree, along our Stanley Park perimeter drive. 
Vancouver, BC, we'll be back! 

Orion changes his mind about giving back Skyler's lollipop.

(We're back next door in Washington state by now.)

Cousin Amanda gets married! 
Fun procession, beautiful dress, handsome Brandon.

(August 10, 2013, which is the 10th anniversary of Thomas and my wedding.) In the photo: Orion, Grandpa Dan, Skyler, me (Heather), my brother Jack, Gramma Hildy, Anastasia, Amanda and Brandon.

Skyler and Orion checks out planes at the Museum of Flight. 

Orion LOVED the hurricane simulator! I vaguely recall the speed was up to 60 m.p.h.  I know he would love one permanently installed in our house.

What the video doesn't show is Orion becoming really upset when the fan stopped.  So, trust me, if you want to give him a tricked-out fan, he will enjoy it thoroughly!

Back in Texas, the kids took in a lesson on horsemanship and went on a ride in Wimberley. 

It started raining at the end of the session. (Rain is welcome in Texas!) 

A barn kitty checks out sleeping Orion. 

We played at the Blue Hole with friends in nearby Wimberley. 

Skyler gets ready to go on the swing as Anastasia watches on. 

Last but not the least- Thomas, Orion and I at the Blue Hole. 

Photo by Teri Montgomery Hammen

Next post: Back to School!

Orion's Third Birthday Party: Photos and a Video

We hosted Orion's 3rd birthday party at a pool on his actual birthday, July 19th.  (Many thanks to T.S. for helping with the cake time photos!)

Happy 3rd Birthday, Orion!
 Orion's name is tactile via glued yarn as well as brads punched in as braille cells for each letter.  The "Happy Birthday" banner can be used for anyone's birthday.  The birthday kid has his/her own name banner.

Devil's food cupcakes!

Orion as his latest birthday casualty awaits candle lighting.

We make a point of giving him an extra candle (green one in this video) when it's time to light up his cake! Check out this link to his 1st birthday party photo- he's checking out a candle.

Skyler and Anastasia blow out the candles.

Sugar-loading siblings.

Animated Orion on the pool "beach" with spray features.

Two of Orion's classmates came!

The girl was leading the boy by his hand around the water features.  So cute!

The Withrow boys

I think Orion had an exciting afternoon. Do you agree?