Thursday, February 28, 2013

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.

Sunday, February 17, 2013

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.)

Thursday, February 14, 2013

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...