The Edge (of the Bed)

May 5, 2013:

I don't know if its a motherhood thing or closet ADHD thing...

And before I continue, Orion has developed a liking for tugging his diapers off. Yes, I appreciate it helps his hands develop strength and fine motor skills but I dislike the consequences of why he needs to wear it in the first place. So a kiddie belt was purchased for our little Deafblind nudist. Now back to the point...

I was hauling a bucket of fresh kitty litter from the garage to the master bath.* Thomas' mom, who was visiting for the weekend, stopped me in my tracks when she said there was something wrong with her recliner. Down went the bucket as I kneeled to investigate. Right away, Skyler started to yell excitedly from the open stairway, signing toward the master bedroom,"O-T! O-T!" I ran, thinking it was another streaking Orion episode.

Orion was still in his diapers, about to finish climbing onto our bed. He was on the carpet when I left him!

*(Master bath for a kitty? How appropriate! Thomas' brought our old kitty, Katra, home from his April visit in Maryland after being taken care of by sainted friends for 9 months.)

May 11, 2013:

I finally saw just how Orion was able to get up from the floor onto our bed. Check out my celebratory Smilebox of the photo evidence.

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The New House: Our Limbo Is Finally Over!

We have been in our new home for just over a month now.  If you stopped seeing me at regular events as well as not see a peep out of me on A Mom's Musings... this is why!  We started packing up our belongings in our apartment in March on top of taking care of 3 kids who feel like 5 kids, so this brings me to the rest of the story...

The morning of April 8th, we had our final walk-through.  During the walk-through, the builder representative asked us when we planned to move in, my reply was, “Do you see that moving truck out there?”

A 28-foot Uhaul truck we stuffed with unfortunately just most of what was in our not-missed 3-bedroom apartment was sitting there glaringly in our new neighborhood.  At that time we had moved out of our apartment into a basic motel for 5 days.  The rest of our stuff sat in a friend-family’s garage.
“Yes," was the representative's reply.
“That’s ours.”

The sales representative (who we were in constant touch with), builder, design center consultant were knowledgeable and pleasant to work with.  If you need to have your home built, check out Standard Pacific Homes and they’ll take good care of you. I don’t work for them but I can vouch for them based on our experience with them.

Our realtor, Sarah Suftin, was efficient, too.  As expected and to our satisfaction, we had an inventory of houses to visit throughout Austin and some out west in Dripping Springs (A.K.A. "To the west of Weird").  

With Sarah's guidance back in September, we zeroed in on the floor plan of our new home because it had two bedrooms on the main floor- the master bedroom and an extra bedroom.  We felt the floor plan was appropriate for Orion since he has mild osteopetrosis, a.k.a. marble bones (thick brittle bones). His being Deafblind makes him prone to accidents, thus broken bones, once he’s more mobile... --->I can go on; this is mom worrying!  We didn’t want him needing to use the stairs.  Sure, he can go upstairs to his siblings’ bedroom and other areas, but everything he will need is on one level.  I totally can relate to those of you who moved or want to move to a new home to accommodate for your children's needs.  (We have been extremely fortunate enough to do this on top of moving halfway across the country to access appropriate education and resources for all three of our kids.) For now he still co-sleeps with us or sleeps in the crib in our bedroom.  His room is simply his FUN playroom with a guest bed for grandparents and visiting friends. (Of course, not all at once!)

My parents also flew in to spend time with us, the kids and helped us pack and clean the apartment, provided logistical support when it came to picking up Orion and helped out at the new house.  Thanks, Mom and Dad!

The plan for Orion's room is to have everything set up in their "forever" spaces so when Orion seeks, he shall find.  Note the wind chime on the doorknob,  jumper hanging in the closet doorway and Falkor supervising.

There's so much more space here than the apartment. Orion seems to be relishing in it along with the rest of us!  He continues to make progress especially in scooting around on his back in his new play room, finding things to touch and explore further.  Lately, when we pull him up into a seated position, we're seeing him tucking his chin into his chest.  An itty-bitty milestone for any kid but a HUGE one for Orion!

The difficult part of this was that it felt like forever waiting for the home to be built. Just like any other customer, I'm sure! We frequently drove 12 minutes south from our apartment to check out and delight in the progress.  Our home was ready on April 8th.  We were finally going to be able to let our guts out a little by a few belt notches after the apartment.  The apartment management found creative ways to charge us way beyond our $500 refundable deposit.  The comfort and space of our new home takes some of the sting out of the move-out checklist fiasco. (Always take pictures at move-in and move-out! For your own defense and/or remind you of how things were before move-in.)  I'm not going to give them the pleasure of 'negative publicity is still publicity'.

A month into our new home, we’re still dealing with unpacking the consequences of our materialism. Packing will remind you of how much you don’t need!  I have to say we did have two yard sales as well as listed items on Craigslist and FreeCycle before we moved.  Clearly, we have to consider doing some more here in Austin!  If you took a peek in our clogged garage/unpacking area, you'd think Santa Claus lived here when it's not Christmas.  We usually go all out with holiday lights every year.  We look forward to doing that on our new home.  The City of Austin (utility) will be so happy with the extra revenues flowing in from our address. 

Now for the biggest, overwhelming item on our family agenda: Our backyard.  It's an empty dirt canvas with weeds sprouting up into an organic Jackson Pollock.  A river runs through it diagonally when it rains like heck. The ideas are childrens’ (and adults’) dreams yet to be realized, funds yet to be depleted, priorities yet to be tested, swings yet to be hung, accessible playhouse yet to be built, kiddie pool yet to be inflated and splashed in, kitchen (and sensory) garden yet to be planted....  Yet to be enjoyed fully by family and friends.

A special shout out from us to realtor Glen Sutcliffe, for his help in selling our old home in Glenn Dale, Maryland back in July 2012.  We got the "right offer" in under a week's time on the market!  

I'll be back very soon with yet another A Mom's Musings post.

The day is finally here.  This is while all 3 kids were in school.  I kid you not when I say the truck was fully loaded, front to back, bottom to top with two extra boxes on the passenger seat.  Orion's resonance board (flat, 4' x 4' wood square) barely fit in on top of all the stuff back there!

Orion and Articles (of Clothes)

Whenever he can, Orion chooses to take his shorts and shirts off. He started doing it maybe a month or two ago no matter what the temperature was.

It goes along with his love/hate relationship with footwear. He loves to check out anyone's shoes that were left laying around but he will cry and kick off the shoes we put on him!  Amazingly he has not put his mouth on the sole! (Thank you thank you thank you!  I do not want to scare him having take the shoe from him!)  I do recall when we lived in Maryland and it was during the bitterly cold wintertime, Orion would leave his shoes or socks on.

Thomas and I always thought he should be barefoot so he could gather more information through his feet. But as someone who will one day walk, he needs to wear shoes to keep his feet safe.  I'm always on the hunt for shoes with delicate yet protective soles.

There's more to the early part of the process here that I plan on catching next time.
3/18/2013

Deaf President Now 25th Anniversary: DPN's Lasting Inspiration

Where were you when the Deaf President Now protest took place on the campus of Gallaudet University 25 years ago?  What do you remember of being there or hearing of DPN on the news?

The first 5 minutes of yesterday's interview webcast at Gallaudet University opens with videos and photos of that famous week in March 1988. A must see!

I was 11 years old and in the 6th grade at College Place Elementary School in Edmonds, Washington.  My classmates and I learned this from our Deaf teacher aide, from whom we also learned Deaf jokes (T-I-M-B-E-R is one story that's been told time and time again, with personal touches added by storytellers) and ASL hand classifiers (handshapes that aren't ABC's).  I was in a self-contained classroom (all deaf students) and was mainstreamed for a few subjects in a hearing classroom with an interpreter.  I enjoyed both settings, perhaps it was the diverse experiences I was having.  (I transferred to the Washington School for the Deaf in the middle of the following year, and that was a great experience, too.)

The stories of people who were around on campus 25 years ago as leaders, students and even MSSD students were fascinating to learn about.  Even those who were far from campus and the stories that came up later of DPN's impact on gaining communication access and opportunities which should have already been there in our country and around the world.  My husband, Thomas, recalled yesterday when he went to the 1989 World Games for the Deaf in New Zealand, he learned of the breakthroughs for Deaf people in various countries following the protest, including their right to drive cars!  The impact of DPN clearly went beyond getting Gallaudet University's first Deaf president.

Yesterday was refreshing as I joined a bunch of Gallaudet Alumni of various ages at a fellow Alumni's beautiful home in Austin to watch an 1 1/2 hour long webcast of an interview panel of the original four student leaders.  Their stories, perspectives and opinions were fascinating... so much more than my little blip of a connection to DPN; however for me, and I'm confident it is for others Deaf or not and anywhere in between, it still is a moving inspiration!

More on DPN: Gallaudet's Deaf President Now page.

Happily Overwhelmed and Inspired: Texas Deafblind Symposium 2013

My, what a number last weekend's Texas Deafblind Symposium did on me!

It was held at Omni Hotel South Park on February 22-23 (Fri-Sat).  The kids went over to a fellow family's home for the non-school daytime those 2 days.  Poor Thomas came down with a bug but he bounced back on Saturday and brought Skyler to the last part of the symposium.  I brought Orion with me to the Family Social on Friday evening.  New/old friends met Orion and I enjoyed meeting people in person without cyberspace in between us.

I had a lot to talk about after the symposium, ask my poor husband! I probably could talk anyone's eyes out of their sockets. I would love to talk about it all here in a blog post. Too much. I guess it'll have to trickle out over time.

There's more frequent, yet brief, news on Facebook by the way of photos, status posts and my pearls in comments now lost in Facebooktime.

I can't forget to share some of my Facebook thoughts here on A Mom's Musings!

On Facebook (2/24/2013): When we were waiting for food at Mandola's last night, Orion reached out, arm fully extended, found some bread in a basket and munched on it. He just helped himself! We saw it, we loved it. Way to go, Orion!

I forgot to mention, Orion knew exactly where the bread basket was because he went right for a 2nd piece of bread.

(Also on 2/24): I look forward to taking the kids to the beach this summer and looking for crabs under rocks. Skyler is looking forward to crab hunting. Thomas, Skyler and I watched a precious video of an intervener [named Gunnar] and a Deafblind student [Ingrid] share the experience of a lively little crab skittering along the kid's arm. That was during the last part of the TX Deafblind Symposium yesterday. Lots and lots of information was shared. I'm not able to remember everything but once again I have good leads of what I can do with Orion. I enjoyed meeting other parents, too!

Somehow the Symposium vibes got to Orion and he's reaching out with his hands more than ever! One day during this past week, we were driving out to the site where our new home is being built, Orion reached out beyond his car seat to find his big brother sitting next to him. Skyler was signing to us and found himself tangled up with Orion's curious hands and feet. Orion had hooked Skyler's arm into his own and reached out with his right foot.

Sweet little tidbits of progress. Yes, there's the hard times, too. But I can't help but do those celebratory fist pumps. Orion requires a lot of work but dang, thank you, he's so fun, too! Thank God.

Driving While Tactile Signing

Communicating with our kids while driving sure is an interesting challenge. Hearing kids can speak to hearing parents; if either or both parent and child are Deaf the line is usually, “Wait for a red light,” or, “wait til the road straightens out,” etc. In a “Deaf” vehicle, the rear view mirror is heavily used! What about a totally Deafblind child? It does happen! I was pleasantly surprised this evening.

We decided to eat at Freebirds on the way back home from Grandna’s home (Thomas’ mom). Orion enjoyed some chips and quesadilla bites but we knew he was going to fuss about milk any minute so we hit the road for home. We had Pediasure but no bottle. Oops. That’s what happens when you have too many things to think of to bring. What happened next was so cool!

Orion was doing the “No” head motion that usually accompanies his fussing. I was driving and reached back with my right hand to rub his leg hoping to soothe him. He found my hand and squeezed it urgently, signing “MILK”. I squeezed “MILK” and signed “WAIT” (*) right back at/on his hand/lower arm. Orion then escalated to full-on crying.

We were home in less than five long-hurried minutes and he settled down when he got his bottle.

(*Wait is an abstract concept. I would say he doesn’t understand time concepts yet but I don’t want to assume that. I always use “WAIT” for situations where he will need to wait a minute.)

Save Our Sclerae!

Orion and #1 Big Brother Skyler share a happy moment in transit.
Feb. 1, 2013

Well, where have I been the last 3 weeks?

I was running around as the chauffer, chef, delivery lady; staying up with Orion when he goes N24SWD on us and spacing out on Facebook. Thomas had surgery 3 weeks ago and until earlier this week has been totally on his back. I’m glad to see him getting better (not just for him to take on some weight I’ve been carrying).  He and I are still recovering from this (insert your favorite noun).

Sleep deprivation was my curse the last 3 weeks. Well, all the time actually but it was really hard the last three weeks. I don’t know how to take naps but I probably couldn’t anyway with the appointments, taxiing, home visits (don’t feel bad if you’re reading this- it’s all about Orion!). I finally crashed Wednesday morning after some Tuesday night excitement/concerns resulting in Orion missing PIP but I feel so much better.

On Tuesday night, Orion, from standing on the carpet next to the bed, climbed onto the bed. His first successful one! He was so excited about his accomplishment. He was laughing! Laughing and trying again. Sure enough, he collapsed from standing into a split on the floor (head to right foot), cried and a lump on his head appeared. He recovered just fine but with him having 'mild' osteopetrosis, we brought him to Dell Children’s ER knowing they’ll do a CT scan which they did.  Once he woke up from sawing logs on my chest, Orion was so squirmy and wiggly on the gurney I was constantly holding onto him. Why can’t they just put him in a crib so he doesn’t have another accident in the ER?! (It’s the same at Children’s National in Washington, DC. No crib unless admitted.)  We got there 9 p.m., left after 1 a.m. with a clear head CT and $100 less.  At home Orion did not go to sleep until 4 a.m.

A snippet of the doctor's Q & A even after I already told her Orion was standing before he recruited that lump on his head. (I give her credit for it was so late into the night, too.)

Dr.: "How high was the bed?"

Me/however the interpreter presented it: "Orion is taller than the bed, he was standing on the carpet when he fell."

We realized that as Orion is able to do more with his body, the accidents will increase. ER co-pays are $100 each with our insurance coverage. If Skyler or Anastasia fell, I’d ice it and watch them; again with Orion this is not sufficient. My plan is to find an urgent care center that has a CT machine, our urgent care co-pays are $15. The dark irony of a Deafblind person having osteopetrosis shall go on. _x,,

As for Orion’s Dali-esque internal body clock, he usually sleeps through the night when I put some grounded melatonin in his yogurt just before bedtime. Some nights I’m so tired I don’t do this, soon enough miles of thin red lines creep all over our sclerae.

If anyone wants to get Orion a gift, a high-density (foam?) gymnastics mat would be wonderful for his room! Or a bubble wrap jumpsuit and hockey headgear...