Wednesday, January 30, 2013

My First Public Testimony About My Sons

Photo by Heather Withrow, 1/24/2013.
On January 24, 2013, I had the opportunity to share with the Texas Senate Finance Committee a very brief story on how Texas School for the Deaf made a difference in my sons' progress since we moved here.  The room we went to was underground!  It was the total opposite of a dungeon!  The superintendent of TSD, Claire Bugen, explained to the Committee two key items TSD needs more funds for: 1) support for additional staff to work with Deaf students with additional disabilities and 2) funds for building maintenance.  A small congregation of TSD supporters watched on.  Three other parents shared testimonies for TSD, too.  A mother spoke on behalf of her family.  They, like us, moved from Maryland last August so their child could attend TSD!  (I was so thrilled to meet them at TSD's New Student Orientation in August, they were from Bowie which is the next town over from our old hometown, Glenn Dale. Small world!)

I signed (not spoke!) asking for support for additional staff at TSD.  Yes, TSD did serve Deaf students with additional disabilities; they had to borrow staff from other parts of the school.  It worked, it made a difference and my kids are on the right track.

Skyler is doing so much better in school and home than he has in the last two years and in my own words a walking reminder to TSD staff of the good job they're doing.

Orion needs a wide variety of support service providers (that he's already receiving), the whole point of my testimony to the Committee for more support staff at TSD.  Especially when Orion ages out of Early Childhood Intervention when he turns 3 years old this summer. (I must mention this: Kendall School/Prince Georges County, MD Infants-Toddlers Program/CBSS get credit for giving Orion a good, strong start... he continues to grow slowly but truly here in Texas. We have not forgotten you!)  

I was so nervous!  I was proud of my boys and believe in those who worked with Skyler and Orion.  One line from my testimony was, "This was not a miracle; this was teachers, staff and administration at TSD doing their jobs."

Of course, Thomas and I had a lot to do with it, too.  It really does take a village 2 IEP Teams to raise Skyler and Orion.

Tuesday, January 22, 2013

Video: Orion Practices Sitting Up

The self-sitting continues!

We inflated Orion's pool for the first time here in Austin, stuffed it with pillows and a memory foam pad.  Now Thomas and I feel we can relax and know Orion will not get hurt when he defers to gravity during his impromptu sitting-up practice sessions.

We used this pool in Maryland to contain Orion's toys, especially the different textured balls, so they don't roll far out of his reach.  That purpose continues here. So useful!

I know one day (just hope it happens soon) Orion will figure out he can crawl in and out of the pool.  He just needs to learn to crawl first.  Or roll and flop himself over the edge... he writes his own rules anyway!

Wednesday, January 16, 2013

Orion Sits Himself Up

Many thanks to Orion's former and current physical therapists for their work and guidance.  Each little thing and all the crying added up to where he surprised us with his newfound skill.

Monday, January 7, 2013

Orion's Biopoem

Also known as Orion Theodore,
Long and lean with snowy white hair and lashes,
Ice-melting smile, rich laughter,
Has a self-amusing sense of humor,
Little brother of Skyler and Anastasia,
Youngest son of Thomas and Heather,
All recently relocated to Austin from Metro DC Maryland,
His family is Deaf except for his sister,
Profoundly deaf and only his right eye has some light perception,
Wears white bilateral cochlear implants that frequently fall off,
Enjoys hearing danceable music, rhythm and voices, vocalizing his own sounds,
Predictable tickles, swinging and wind in his hair bring giggles and happy feet,
Would welcome eating cupcake after cupcake with his own hands,
Learns through experience, routines, thus object symbols and then tactile signs,
His body does not follow the conventional 24-hour day, 
Often stays/wakes up at night "partying" at Mom and Dad's expense,
He has mild osteopetrosis, also known as dense bones,
Although he can sit, he loves to lay around and lean on people,
He will explore objects within reach,
Especially HOLES,
We need to help him learn to get up, down, crawl and walk,
In spite of loud crying objections during physical therapy,
So he can have stronger bones and muscles
And then explore some more!

Created by Mom,
a.k.a. Heather Withrow
January 6, 2013

Let me know if you learned anything about Orion (or if I totally overlooked something).  This was created to be part of a communication portfolio or "passport" to Orion so that anytime a new person is going to work with Orion he/she will get the big picture in a single read.