Upcoming Chapter for the Withrow Family: The Draw of Austin

Barton Springs Pool is an obviously popular place to cool off.

During Spring Break the first week of April, we visited Austin, Texas to look at the Texas School for the Deaf (TSD), Texas School for the Blind and Visually Impaired (TSBVI), Torchy Tacos (mmm!) and surrounding communities west and southwest of Austin.  All in our keeping our mind open about possible places to relocate so all three of our children would equally get quality educational services- our Deaf son, Skyler; our hearing daughter, Anastasia; and our Deafblind son, Orion.

The water comes from a natural spring, I was surprised springs existed in Texas.

Uncertainty to Certainty
It all started a year and half ago when Thomas and I wanted to know where then few-month old Orion would go to school when the time came.  We agreed that we needed to know Orion's communication skills, when they develop, so we would have a clear picture of which program would be a better fit. We eventually found Orion understood touch cues (which happened to be signs we modified to use directly on his body) and object cues (bottle, spoon, diaper, goatee, etc.)  Orion has shown us he will eventually communicate through tactile sign language.

We've learned so much about available educational services for Deafblind children, school options for all our children and how they affect family logistics.  It became clear to us that we cannot stay in Maryland without setting the odometer of our van on fire. We are believers in state schools for the deaf usually having appropriate-to-best resources for the students they serve (and they meet others just like them) and the same applies to state schools for the blind. 

In Maryland, the School for the Blind (MSB) is in Baltimore which is around 60 miles away from either Kendall Demonstration Elementary School (KDES, for Deaf students) in Washington, DC or the Maryland School for the Deaf (MSD) in Frederick.

A) Even if we were allowed to place Orion at MSD, they do not have the resources to serve Deafblind children.  (MSD's admission policy says if a child requires braille to learn or cannot learn visually, he/she is referred to MSB.  I personally think this criteria needs to be reconsidered, as ASL is also an accessible language for education of Deafblind children who reach that level of communication.  Students would have access to proficient ASL users, whether staff or peers, at MSD.  Goodness! Orion's own family uses ASL.  His parents and big brother are Deaf... talk about a good example of contradiction with the reasoning behind this policy.)  MSD does not serve Deafblind children through their family education/early intervention program (birth to 3).

Snippet from MSD's Admission Policy (.pdf file), retrieved online 5/13/2012.

B) If we relocated to Baltimore and placed Orion at MSB, we would be torn in half, because Skyler still needs to go to his school 60 miles away and we refuse to let our children live in dormitories for at least their elementary school years.  There is a particular arts and technology school that I would enroll Anastasia in the Baltimore area.  Still, in this scenario, Skyler loses out.

C) Kendall School is willing to work with us on services for Orion when he ages out of PIP (Parent-Infant Program) at 3.  Even though they're willing, our family prefers to place Orion in an established program that has been serving Deafblind students for years. It has been really nice having our sons in the same school, Skyler in the 2nd grade and Orion in PIP.  I applaud Kendall's support and interest in including Deaf children with other disabilities. One example: After Orion was born, we were welcomed to apply for Orion's placement in PIP.  He started attending the first week of November 2010 at 4 1/2 months old!

D) We are willing to work with our local public school for Orion, but not without the resources of the School for the Blind which is still 60 miles away. We want daily support and instruction from people who specialize in Deafblind children.  Orion started receiving early intervention services in Prince George's County at 3 1/2 months old. They have been supportive, resourceful and effective.  There have been times when they noticed something subtle or shared with me opportunities not to be overlooked.

(Did you notice yet? I'm a BIG supporter of early intervention!) 

We can't forget CBSS (Connections Beyond Sight and Sound, Maryland's state deafblind project) and the awesome people within! The first person (of several!) I met regarding information on deafblind services for Orion, anywhere, was through CBSS around just two weeks before Orion was born.  You may have heard me rave about them. I can't impress enough the relief it was to meet and talk about our Deafblind son, sandblasting blowing away the cobwebs of worry and a million questions. 

The Draw of Austin
The Texas School for the Deaf has the resources for a well-rounded education (Yay for Skyler!) but the cherry on top was that TSD had their own vision specialist who had experience working with deafblind children.  We learned that TSD has several deafblind students with interveners.  We then visited TSBVI where we saw 5 deafblind students.  Each one of them had an intervener!  That is exactly what Orion needs!

TSBVI is not a K-12 program so wherever Orion is enrolled, the IEP team can determine how to use TSBVI as part of Orion's education.  TSD has had deafblind students go in between TSD and TSBVI.  (The two schools are both in Austin... a 9-minute drive apart.)  Like some of the deafblind students at TSBVI, Orion can enroll in the home school district and go to TSBVI.

People from the Texas Deafblind project (offices are at TSBVI) took some time to meet with Thomas and I to answer our questions and share with us about the statewide services.  We got pamphlets after pamphlets on services and parent organizations in the state. TSD's vision specialist was with us for the TSBVI tour and this meeting.

There are several programs nearby, consistent from elementary to high school, that are amongst the best schools in the state based on their assessment scores.  We have a couple possibilities and we'll know more later this summer where Tasia will go to school.

After a fun long day of places seen, new and old friends visited.

Packing Up
We're moving as soon as we can help it, late June.  We will miss our lush green swatch of Glenn Dale, Maryland so much, but we must uproot and relocate for better opportunities for all three of our children. We will miss all the old and new friends we made here in Maryland. We are grateful to have met and sorry for the short time we've had with those we befriended after Orion was born. 

The good thing is that my blog will keep on going! :)

Not To Be Ignored: Washington State
Orion and I visited my home state of Washington to visit schools there, too.  Washington is a beautiful and special place for me.  The "N" in my compass is always pointed that way.  I plan to blog about WSD, WSSB and a couple public schools with Deaf programs.  I have pictures I will share of WSD and WSSB's gorgeous campuses.  I was so impressed, yet Austin, Texas impressed us even more despite my fear of it's heat and lack of family in the area.  That's all for now.  More to come in a future blog post.

All the best to Orion's Fan Club! <3

Orion Explores Beyond His Usual World

Have carpet, will travel.

4/4/2012: Orion is 20 1/2 months old.  He head-scooted (head and all 4) to the wall when we were visiting Austin, Texas. This was the first time Orion went "long distance" from where we put him down. I put him down, went down the hallway to talk with Thomas. When I was done, I went back to the blanket...  no Orion! He was over by the wall, playing with the curtains with his hands and feet. He moved backwards before I could take this picture.

Coming soon: What we were doing in Austin, TX.

Free iPad Giveaway at wonderbaby.org!

Heads up: Want an iPad for your special needs child? Visit wonderbaby.org for further information on entering the drawing.  Deadline is May 15th.

We're giving away:

*The NEW iPad (iPad 3) donated by Perkins School for the Blind
*A virtually indestructible GumDrop iPad Case
*The RadSounds switch-ready music app donated by RJ Cooper plus an RJ Cooper switch interface
*A Blue2 Bluetooth Switch for use with switch-activated apps donated by AbleNet
*Two fun switch-ready apps, Smarty Pants & Five Sharks Swimming, donated by Inclusive Technology

This is the perfect package for a child with special needs who wants to get started with the iPad!

Thomas Marshall Does It All: Blogiversary Giveaway

This is one of my favorite blogs to visit since it's about a very cute little boy named Thomas who is blind and his mom, Jessica, has shared so much information that is out there for parents of children who are blind.  Many tips I gained were through her blog.  Now she's having a 'blogiversary' giveaway!  If your child is blind, go over and leave your email address and a blurb about your child in the comments section to be eligible for a drawing (May 3rd) for a free braille book. She's giving away two books. Even if you don't come away with the goodies, you  have a whole blog of hers to enjoy and learn from like I always have.

Thomas Marshall Does It All: Blogiversary Giveaway: Thomas last spring when I started the blog. The pictures at the top of the page are all about a year old, and so is this blog! It's ...

http://thomasmarshalldoesitall.blogspot.com/2012/04/blogiversary-giveaway.html

A Parallel Experience Between Blind People and Deaf People

A fellow mom posted a thoughtful question in a Facebook group for parents of kids with microphthalmia and anophthalmia.  I quickly saw a parallel experience between blind people and Deaf people regarding their level of sight or hearing.  My reply is below:

"Wow, I think there's a parallel here between blindness and deafness! It is hard to deal with losing something, for sure. A drawn out process crossing the threshold. For those of us born deaf or blind or both... we don't really know what we're missing. The way we are, that's it. That's how things are and will always be. Vision loss or hearing loss doesn't apply to those of us who were born already blind or deaf... we didn't lose anything! What I think is beautiful and inspirational are people who are happy and comfortable in their own skin despite constant struggles whether deaf, blind or deafblind. Also, the thinking that hard of hearing people is "better" than Deaf people... the thinking happens vice-versa, too, as people in denial. That seems like 2 'camps' here but there's so many different opinions, philosophies, beliefs. People even move between 'camps' through their life! In the end... the degree of sight or hearing needs to be tossed out the window and instead we should appreciate their communication ability/options and personalities. Celebrate and support the whole person. Amen."

Orion's Shopping Cart Expedition

Orion rode in a little shopping cart at Rite Aid just off 197 after his PT session this afternoon.  I pushed him around carefully and didn't have to right him at all. Yay! 

His PT at RSI commented once again that Orion's constantly improving.  LIttle improvements, still precious and important.  He's been crying much less at his visits, some visits there were no cries at all.  Last week and today during parts of the session, he sat alone unassisted while his PT guarded with her arms ready to catch him if he topples over.  It's looking a lot more like when I take him in for his 2nd birthday photos, he'll sit by himself.  I'm hoping by that time he can get himself in the sitting position and safely back down.

One day last month Orion lifted his head over and over, seemingly amused with it. I got it on video!  He has always been able to get up on his knees, hands and forehead but twice in perhaps the last 2 weeks I saw him lift his head while in that position.  Go go go!

His PT at Kendall School got a full time job elsewhere, we'll miss her!  Tomorrow is her last day.  (There will be a replacement at Kendall, of course, to continue Orion's IFSP goals.)  She and other PTs have helped Orion make progress physically. 

I leave you with a couple pictures from one of Tasia's most recent unexplained destructions.  I love that she wrote a sentence and tried to spell 'accident' and taped it onto her pajamas along with the swatch of she 'accidentally' cut out.  I tried not to laugh when she solemnly brought it to my attention.

 

Orion's Physical Progress

This month, a gait trainer was introduced to Orion as well as our doorway bouncer was reintroduced. From time to time he has used the mobile stander (a wheelchair where you stand, not sit). I appreciate the different ways we can have him experience being upright.  We've also tried to keep sitting up fun for him.  Give him a cookie, clap hands, try out some toys and 'real things'.  The vertical frequency increased this month and I believe I have that, along with his lovely physical therapists, to thank for his surprise stand on Leap Day.

Orion stands assisted (1st time!) by Giselle, PT at Kendall School, on Feb 29th. Nice surprise!

Finishing up an unplanned meal in a booster at a friend's home. (2/25/12) His balance and stability was really good.

At a Gallaudet University Women's Basketball game. (2/12/12)

A different perspective on women's basketball. From foreground to background: Anastasia, Skyler and friends Keanu and Denali.

The doorway bouncer has be re-introduced. (No immediate crying like last time.) Any little movement by Orion makes him move.  We wanted him to realize that.  He enjoys mouthing/feeling the bath boat and eating cheese puffs from the tray.  With something for him to do, he does not mind being in this position.  He's been in it as long as 20 minutes.