Sit, Sit, Señor, Sit!

As of December 20, 2012

(Scroll all the way down to the bottom of this post for progress as of December 25.  It's a physical therapists/service providers/parents/family/friends' Christmas present from Orion, too.)

More, milk, finish are words he has expressed sparsely yet in increasing intervals.  The latest communication connection as discovered by Thomas is "pick me up".  Orion would create the handshape "5", stick his thumbs in his armpits and move his now folded arms to his side.

He can sit up independently although I think it is out of fear of falling over.  He has cried and seem to be stuck.  We are working on teaching him to hold his arms out front while rotating his trunk and hip to either side to end up in an all-four, knees and hands position.  From this, he could figure out how to crawl.

Orion has not been feeling well this week and has been crying whenever he is left alone.  He is calm when he is in contact with someone.

Anastasia made gingerbread dough as Orion explored kitchen gadgets.

Orion loves holes!

Two brothers share a chair and a moment together.

Look, Ma, I'm sitting by myself!  No chairs, hands, jumbo "L" braces (joking here)!

As of December 25, 2012

An all-time Orion sitting record took place today!  He sat alone for approximately 25-30 minutes despite us attempting to make him get himself down around the 20 minute mark.  He was happy the whole time, giggling, feeling Skyler move around and later feeling a radio play loudly on the loaner resonance board from TSBVI Deafblind Outreach.  The video clip here is just short of 2 minutes of the very same sitting event.  He's just going to do it again and again and one day he will figure out how to get himself down.  

He has been sitting solo from time to time but I just didn't have the presence of mind to record it until today.  I was very happy to let Orion demonstrate his skill to his grandparents (my parents) via videophone yesterday.  He showed the rest of the family today, including his visiting Grandna. What a delight all around and anytime!



Oh, yes, he's feeling much better.  Still prefers to be in touch with someone at all times.  I don't blame him one bit.

Joyeux Noel from the Withrows!

We visited a signing Santa at Barton Creek Square earlier this month.  I love how Orion is checking out Santa's big belt buckle.  Also, Orion loves breezes.  There was a fan pointed at Santa, keeping him cool and it amused Orion, too.

Joyous Inches

We almost gave away this desk when we were moving!
You can also see the improvised footrest.

Orion eats from these sectioned plates 95% of the time at home.
I found them at MOM (My Organic Market) in Maryland during our last visit with friends in September.

Wednesday, December 5, 2012- What an exciting morning at TSD for Orion!  Orion's ECI physical therapist met us at the PIP house to observe what Orion does all morning.  She gave great tips to get more out of Orion, such as encouraging him to cross his legs, making him sit up and not lean against his teacher when exploring his 'nature' scratch board (acorns, leaves, twigs, rocks), etc.  When we set him down on his bottom to eventually let him lay back, he worked to sit upright with both hands off his sides and on the floor.  We let him sit there, then when it seemed like he was stuck, his PT showed Orion how to get himself down, he resisted and continued to sit up!  Fast forward to us in the occupational therapy room, Orion showed us he could sit by himself once again, even at different heights (bench, 4-wheel scooter board, floor).

Some time ago and I can't recall who said it- Orion seems to be interested in sitting anywhere except for the floor.

Monday, December 10, 2012-  Orion's teacher informed me Orion signed "MORE" when I walked away from the dining table to get Orion's milk ready.  (Orion also has been sitting in this dining chair for 30 or more minutes without tiring out.  Record: 60 minutes!) Later after finishing his early lunch and washing his hands, Orion was laying down on the carpet when he seemed to want to get up (raised his arms), his teacher picked him up, he fussed, she put him down.  This happened a couple more times and he finally signed "MILK", perhaps a little frantically.  "MILK".  I ran over to the table where his unfinished bottle was and he quickly finished it off!

My thoughts- thanks to his PT suggesting Orion sit in our older kids' play schooldesk.  It was something we've had for a while and I didn't think to even use it as it seemed too big for him.  Nope, with another box on the floor in front of the desk for Orion's feet, he does great sitting in it!  (Has been sitting without any form of footrest all this time at home, school, here and Maryland.)  We now use the desk for snack time, home visits, exploring objects including braille books.  

The PT and Orion's teacher have improvised a footrest for Orion's dining chair at the PIP house, too.

In this desk and dining chair (of opportunity!) with his feet supported he has sat forward, rested back and held himself upright independently.  

He's been moving along inch by inch, but joyous inches, they are!

On Friday, December 7th, Orion, Anastasia and I went with 

friends to a Ballet Austin performance of The Nutcracker. 

Orion sits patiently here, while his sister and friend checked 

out the colorful lights outside after the show.

View of downtown Austin from the Long Center for the Performing Arts.

Fall 2012 in Pictures

A moment of reflection at the TSD PIP house.
Deafblind children need these moments during their day
to process their recent experiences.

Orion enjoyed the buggy ride from the PIP house to the pool at TSD.
(His classmates' faces are concealed to protect their privacy.)

"PLAY"
One of my attempts to get Orion to put his hand over mine.

A sweet wind chime for Orion to check out.
I picked this one based on it's simplicity and lower chime sounds.
Deaf individuals usually have a harder time hearing the higher frequencies,
even while wearing hearing aids.

Actor Ryan Gosling checked things out at TSD-Foundation's
Spooky Skedaddle 5K Run and Festival.  He saw the kids looking for candy in
TSD PTA's hay bale ring setup.

Kids scrounging around for candy in the hay at the Spooky Skedaddle.
Made possible through TSD PTA funding and volunteer parents.

Orion as Casper on Halloween Day with his Dad/Thomas.

Casper-Orion sits at the table for snacks on Halloween Day.
Next to him is his D/HH teacher.
(Classmates' faces are concealed for protection of privacy.
I wish I could show you how cute they are!)

On November 5 and 6, Thomas and I went to an Active Learning workshop along with Orion's D/HH teacher and TSD's Deafblind specialist.   This is an authentic Little Room as designed by Active Learning creator Lilli Nielsen.  She has researched to the point she has identified the specific dimensions and materials for optimal active learning experiences for children who are Deafblind and/or have multiple disabilities.

Lots of fun stuff on display!  These would be fun for any little kid to play with and they're not from ToysRUs!   Note  the buttons and balls on a picture of a field in the foreground- those have velcro attaching them to the board.  A scratch board is on the right, leaning against the wall (looks like a quilt).  It has different materials for kids to tactually explore.  Off the top of my head (those of you who know, don't bite my head off if I'm wrong) our hands develop in order... starting with 1) Scratch,  2) Grasp, 3) Pull... and so on.  Active Learning workshop, November 5 & 6.

After the last game of the WAYA flag football season.

Nov. 16, 2012.  Orion is 2 years, 4 months old.  Anastasia is 6 1/2.
First time sitting calmly in front of the piano.  He had the opportunity to sit
and then explore with his hand when he was good and ready.  He enjoyed touching the keys!
Prior to this, he was always laying on the floor and putting his hand up to touch the keys.

New: Hand-washing routine after meals, both at home and at PIP.
It is so recent we're still working on the object symbol for this routine.
Right now it is his favorite pump bottle of soap or a wet paper towel.
We follow the object symbol with the sign for WASH-HANDS (rubbing both hands together).
We also like how this routine shows Orion why he ought to stand up.
Photos taken by Anastasia.

1-2-3, JUMP!  However, Skyler had other plans.
November 2012.

Many kids came out of this foam pit soaking wet.
Even if they got a little wet they were definitely dripping after a clean water rinse!
Anastasia's school carnival. November 3, 2012.

Human hamster ball at the school carnival.
Anastasia's school carnival. November 3, 2012.

Ninja Skyler and Wendy Wu Anastasia on Halloween night.
The weather was perfect!

Being Pro-Tactile at dinnertime!
(Contact between Orion and I.)
He knows I'm there, even if I'm not touching him with my hands.
He's always found a way to put a foot on somebody when laying down with
company at home or in school since his infancy.  October 2012.

Orion enjoyed a bumpy tractor train ride at Elgin Christmas Tree Farm.
They also do hayrides and pumpkins for little kids before Halloween.
TSD PIP field trip.  Oct. 23, 2012.

Anastasia and a friend worked out their issues at the school carnival.
November 3, 2012.

Skyler in the sky.
Anastasia's school carnival, Nov. 3, 2012.

What was in the cup? A mixture of yogurt and milk.
Just right somewhere in the middle, not stiff like yogurt or runny like milk.

We visited Sweet Berry Farm in Granite Falls, TX
 to get more of that Halloween/autumn harvest experience.
October 28, 2012.

DBMAT Family Weekend at Camp John Marc

October 12-14, 2012

We went on a special trip up to Camp John Marc just east of Meridian, Texas.  It was the 39th Annual DBMAT Family Conference. (DBMAT: Deaf-Blind Multihandicapped Association of Texas) We were originally on the wait-list since the number of children was at maximum... surprisingly room opened up for more children.  Since our kids could go, we all went as a family. Once we got off I-35 near Waco onto the 70 m.p.h. two-lane roads, it was a gorgeous drive all the way to Camp John Marc. The landscape reminded me so much of eastern Washington. The campground and facilities were so nice, expansive, the designs and details were delightfully well thought-out. It offered a lot of space for activities including workshop spaces and some of Skyler's weekend favorites- fishing, rock climbing and riding a zip line.  Camp John Marc is designed for children with chronic illnesses and/or physical disabilities and is named after a young boy who passed away years ago from cancer.  What is also impressive is the number of people and the time they invested to bring this camp to life and continue to develop it over the years.

The Story of Camp John Marc, inside the Silo building.

The new faces we met were parents of Deafblind children and their siblings and there was a sprinkling of familiar faces with the presence of Orion's D/HH teacher, Orion's brand new O&M specialist and Linda Mamer from BC, Canada.  Thomas and I had the pleasure of meeting Linda when she came to CBSS at U of Maryland in June 2011 for an inspiring week-long DB workshop. 

Where the workshops were held, the Silo building.

We heard presentations from other parents of Deafblind children who have a lot of mileage under their belt on the road ahead of us.  Just like we read on the Internet or learned elsewhere, at the workshop we continued to hear parent testimonies of the positive outcomes of interveners working with their children. You can read about the experience of one family continuing to raise funds to pay for interveners to come and work with their daughter Lauren again.  

(Yes, in Deafblind-saavy educational programs, interveners are an expected sight.  There is still a very expensive need to have interveners in the home.) You will see on Lauren's family website that interveners cost one thousand dollars a week!  Also, there is no age too young to have an intervener benefit the Deafblind child and his/her family.  Yes, that means Orion would benefit from one already.

The silo itself has rock climbing features.

A typical door at Camp John Marc.

The small building on the left is for the kiln.

The Dining Hall and the fascinating cacti chandeliers.

Professionals presented on very interesting topics: Linda Mamer presented about community involvement, keeping an eye open for employment opportunities for our DB children and using iPad apps for Deafblind children.  With the iPad apps, I can think of many children who would benefit from the list Linda created.  Her "Early Learning Apps for iPad" list can be found and downloaded from iPad apps for Deafblind children on Paths to Literacy's website.  I have also added Paths to Literacy website link on the sidebar of my blog. --->

Linda also pointed out that there is no magical time to start learning and using sign language with our Deafblind children.  It's hard to start,  yes, but once you've started it seems less challenging.  She recommended starting with ten signs; they have to be the right signs [perhaps practical signs that are used often]. Thomas and I are in an unique situation since it is widespread that parents of Deafblind children are hearing, the language of the convention was spoken English.  We had interpreters present.  Skyler had a couple signing staff in his 'cabin' group.  As the hours went by through the weekend, we were able to observe parents signing, whether it was with us or others.  Signing is not the only mode of communication available but it is one of the many options that should readily be available to your child, Deaf, Hard of Hearing or Deafblind.  My point in sharing this is it's not too late and you don't need to know hundreds of signs when you start tactile signing with your Deafblind child. 

Hide covered chairs!

The Dining Hall exterior, toward the cabins and pool.

Our cabin on the left is Comanche.  Apache is on the right.

Fran LaWare and David Wiley from Texas Deafblind Outreach presented on Helping Students With Deafblindness and Challenging Behavior.  One of my favorite new lens (perspective) is "Are we asking the wrong question?" from their presentation regarding preventing problems is better than reacting to them.  An example from their presentation (perhaps here in my blog skewed over time in my mind) of preventing problems was to eliminate the tendency of a child to stop right outside the cafeteria when he/she was supposed to continue along the path to another building for a different activity way before lunch.  Suggestions are to give the child a snack before transitioning, or take the long way around avoiding the cafeteria.

From a representative from DADS (Department of Aging and Disability Services), we learned of state resources such as waivers and one was the Deafblind with Multiple Disabilities (DBMD) Waiver that would cover the cost of services (offered are PT, OT, adaptive aids, Intervener, respite, nursing or home based care, etc.) for kids like Orion once they get off the top of the Interest List.  There's eligibility criteria for several different waivers that I'm not going to get into now.  Kids can spend years and years on the list before their turn happens.  It also depends on the availability of government funds.  Only recently, Deafblind individuals could not get on the Interest List until they became 18 years old.  Now it's open to Deafblind children of all ages here in Texas.

View of the lake and fishing pier.

A delightful water fountain mural!

View of the circle where the Dining Hall
and Administration Building is.

That was enlightening... and there was entertainment (not counting meeting other parents and kids) with the silent auction, live auction and the ice cream social.  I won some items from the silent auction (my first Scentsy 'candle' light with scented wax!), had some fun at the ice cream social.  Orion had fun feeling the loud music on the table, people were thumping their hands on the table along with the beats.  It was a real fun family-of-Deafblind-children environment: parents, Deafblind children, their brothers and sisters, plenty of camp volunteers.  Orion was just one of the kids.  What was common was that everyone was enjoying themselves with frequent flashes of happy faces and curious hands.  

I opted out of the live auction but with the quick look I got, people were laughing and the auctioneers seemed to have so much fun.  Next year, I have to make sure I pack in some more oomph (a.k.a. energy) to go.

Orion checks out the rhythm.

Skyler and Anastasia spent the daytime with their cabin groups according to age.  Skyler turned 8 years old on Saturday, October 13!  (We had a birthday party with friends the previous weekend.)  I would think this is one fabulous birthday weekend with the many things Skyler was able to do!  Skyler said he caught a fish from the lake.  We wish we saw it but understand a picture was taken.  Also, a wasp inappropriately gave Skyler a birthday greeting in the form of a sting on his left calf.  His first wasp sting!  Anastasia begged and begged on Saturday night to stay in the cabin with the other kids whose parents signed them up for kids' camp, so we let her join them. (Parents can have kids sleep with them in their cabins or to stay the weekend with their friends in the kids' camp.)  

Orion, since he's 2 years old (nearly 27 months to be exact), spent the day at the infirmary designated for infants to 3-year olds with plenty of volunteers and a nurse around.  I was not the only parent who brought plenty of toys and a seat for our kid.  He lay on his blanket, played with the toys, went for rides on his Swifty stroller, was fed, changed, etc.  

Baby Tarantulas,
in time for Halloween?

On Sunday after lunch, we took the back roads, avoiding I-35, back to Austin.  I kept telling Thomas the landscape was so beautiful as we drove over slight rolling hills.  The ground was greener than I thought.  I appreciate being able to drive at 70 miles per hour, legally!

Thomas and I appreciated presentations, learning more about the resources available and the opportunity to meet other parents and we look forward to meeting more next year.  That's right, we'll be back next year!

Roadside scenery....

Texas

...more Texas.