Tuesday, October 16, 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....
...more Texas.

Thursday, October 4, 2012

Team Orion Update: Texas Chapter

(Hat tip and "ILY" sign to DC/Maryland!)

We had an ECI (early childhood intervention, another name for infants-toddlers program) IFSP Evaluation Meeting at our apartment. A handful of new faces for Team Orion- speech/language, vision, AI (Auditory Instruction? Texas's version of D/HH) teacher, physical therapy, occupational therapy and O&M (orientation & mobility) and the usual interpreters.

It was productive and I felt a lot of information was shared and learned regarding Orion's current performance and some of his history.  He was having so much fun!  What was remarkable was that he was so happy exploring a small carpet square, staying focused on it and smiling, perhaps delightfully amused by it.  Orion did a good job demonstrating he can lift his head and hold it steady for several seconds, roll over, grasp objects, sit in his floor seat for a long time.  What took the cake was him doing his usual spontaneous crying and signing "MILK" for some of the service providers to see for themselves. Yes!

[Edit: I forgot to add that Orion also wore his processors and was vocalizing.  It was noticeable, like always, that when he wasn't wearing them, he was quiet; when we put it on, he switches on vocalizing.]

I'm happy that the appropriate service providers are coming into the picture, just like in Maryland.  What's new to us is that here in Austin, Team Orion has expanded to appropriately include a vision consultant who has a impressive knowledge of Deafblind children and an O&M teacher.  And that is not including the consulting by a DB specialist from Texas DeafBlind Outreach and one from the Texas DARS Blind Children's Program.  There are a lot of loose ends to tie up, in the forms of papers signed by doctors confirming diagnosis, whatever other signature-hungry form is out there and applying for certain programs outside of ECI to supplement what Orion needs.

Orion's D/HH teacher has been getting to know him very well.  I can see that Orion is comfortable with her and responded positively to her presence.  It helps that he's seen by her 4 times a week.  We have been coming over to TSD's PIP house for short visits to get used to the environment and experience the PIP schedule. This will help us figure out Orion's schedule and frequency.  The kids there are so sweet and clever.  One little 2 year old girl is very compassionate and touched Orion with her little hands. He accepted that and did not push her away.  He's more likely to push away big hands!

Yesterday, we went to PIP and the whole class went to the wading section of the pool on campus.  Orion splashed and splashed the water pretty hard the whole time he was sitting in the water, resting his back on my legs.  His splashes were pretty big for a little guy, I think.

Anyway, to wrap up the Team Orion Update, I look forward to a well-oiled, loaded hot rod of an IFSP for Orion.  We'll get there!

The last pieces of today's news is that Thomas, Falkor and our newsed van is finally here. They got here tonight!  It has been way too long.  What's left is our sainted kitty Katra Jaminn being cared for by our friends Bill, Carol and their two feline furbabies.

Coming soon: Hi-ho, hi-ho, off to DB family 'camping' weekend we go!  

Tuesday, October 2, 2012

The Laundry Back-Up: Orion

Time does help you realize things.  Just when I think it sucks our apartment does not have a washer/dryer in our unit, it's a blessing.  If it's actually in an apartment, it is just a washer and a dryer.  The laundromat I was forced to go to... what, the whole place? Pick any 2 or 3 to use at a time? Candy store effect!  I am usually in and out, regardless the number of loads and completely dry, just over an hour.  (Wash: 26 minutes, dry: 36 minutes.)

With Thomas on the road driving our 'newsed' Odyssey with Falkor from Maryland, I had to take Orion with me to the laundromat today.  Thomas was going to fly home on Monday but when he was able to trade in our sorry old van last Friday for a new one, it was an opportunity we couldn't ignore.  Especially when it will allow us to bring Falkor home sooner than planned.

Anyway, back to the laundromat.  I usually try to go alone on errands, it's faster that way or so I thought.  Orion and I left the laundromat a little later today than I'd usually take. Why? We were having FUN!!!

I put Orion in the laundry cart and proceeded to add warm, dry clothes.  I started to play peek-a-boo with him.  Pillowcase over his head, off his head.  On his head again, off.  Orion smiled and giggled.  He pulled some clothes to his face. Sniff-sniff. A grin spread across his face.  So cute, happy and educational!  I will take him to the laundromat again next week.  Happily.

At least the laundry I'm airing on the Internet is clean!