Perspective

My mom went to a lovely ladies lunch to day at the esteemed New Orleans restaurant Galatoire’s. (WARNING: Only click that link if you’re unafraid of getting drool on the computer.) It was a fancy, Ladies Who Lunch sort of deal to celebrate a friend’s birthday. I’m sure there was a lot of getting tipsy on mimosas and silk pant suits from Steinmart.

You know how these things are, women are cackling and talking about their children and grandchildren and somehow my mom find another woman at the table with a special needs grandchild.

The other woman’s grandchild was a preemie born at 31 weeks who had suffered a brain bleed. The other grandmother said he is doing well dealing mostly with speech delays, but even this seems to be resolving at this point (age five). There seemed to be only one real problem according to the grandmother: the child still eats only pureed food. My mom, an amateur member of the Spanish Inquisition, asked a few more questions. Side note: really, Homeland security should study my mother. The shear breadth of the questions she asks is quite amazing. Imagine my brother and I talking to her as children. She wanted to know what our new friends’ parents did for a living and we didn’t even know their last names.

My mom’s curiosity stems from her genuine love of people, though, so she was very curious about this stranger’s grandchild. Her interrogation revealed that the child was of normal size and weight, and had no apparent nutritional deficits.

My mom called me later to tell me all about her lunch and, of course, filled me in on the stranger’s grandchild. At the end of the conversation she says, “You know, Katy, my perspective has really changed–who cares if he only eats pureed foods–at least he eats.”

And really, isn’t it always about perspective? My child can’t walk or talk, but he loves to eat and I don’t take that for granted. I’m sitting on a comfortable couch enjoying air conditioning and when the bill comes, I’ll be able to pay it. I live in a country where my child’s medical conditions can be treated and where early intervention is standard practice.

Most importantly, my child is supported by an incredibly caring team of extended family and friends. People who care about his therapies, his accomplishments, and his set-backs. With all of this going my way, it’s hard to be sad about what I don’t have for very long.

Holland Mafia Meetup

I’ll probably be putting up a real post this evening, but I wanted to be sure and get this up as soon as possible.

Hubby, Charlie, and I will be heading to Plano this coming Thursday for more ABR training. On Friday, August 7th, were going to be meeting up with Jennifer and Jude of Jude; The Diary of a Baby and a Stroke in Dallas.

I’ve been calling groups of special mommies the Holland Mafia and that where the name comes from.

If you live in the DFW area and have a kid with special needs, then we’d love for you to come meet us. If you read this blog or Jennifer’s and just want to come along, that would be fine too. Please pass this info along to any other “Holland Mob Bosses: that you think might be interested.

We’ll be meeting at 6:45 at the Jason’s Deli in North Dallas
The address is 18111 Dallas Parkway #100, Dallas, TX

Hope to see you there!

Say My Name

Charlie doesn’t talk.

He grunts, whines, cries, laughs, and makes happy noises, but as of yet, no actual talking. I’d love to hear “Mommy,” “I love you,” or, you know, “all the medical bills are worth it,” but I’m mostly zen about this. You can read about kids all over the net who are communicating a variety of ways–sign language, communication computers–and I think that he’ll definitely find a way to communicate. Also, we live in a very computer-centered world and I find myself communicating in different ways all the time, so who knows what the future holds? I mean, if someone had told me seven years ago that I would be sending written messages with my phone, I would have asked them where they got the crack because that’s just ridiculous. Now, I text not only to annoy my friends who are working, but also to update my Twitter page about things that irritate me. Side note: you should seriously follow me on Twitter–how else are you gonna know there’s a long line at Chick-fil-a? I’m your eyes and ears on the ground when it comes to Chicken Minis.

A while back we ordered a GoTalk 4 through Early Steps (our state’s Early Intervention Program). The GoTalk is an “augmentative communication device.” We call her Tina the Talker. Well, Tina arrived and the Speech Therapist and I were giddy with excitement. I mean, this was communication in box! You take that seriously or your kid might skip over “mama” and “dada” and head straight to “I need borrow the car” and “where do babies come from?” So we took the magical Tina out of the box and programmed her with officious words like “water,” “cracker,” “yes” and “no.”

But nothing happened. Charlie hit every button in rapid succession, lost interest, and tossed Tina on the floor.

So, we re-grouped and decided to try an activity with Tina. We cut out pictures from a magazine of ears, eyes, a nose, and a mouth and paired them with my voice saying these same words. We wanted to work up to the point where we would touch something on Charlie and he could tell us what it was called. This time it was nose, nose, nose, nose, nose and BAM! Tina was on the floor again. Really, Tina ain’t gettin’ no respect around here.

So there we were: the lovely Tina neglected in a corner and I feeling pretty mommiocre for failing to bring out the inner Walter Cronkite in my child. Or even his inner Sarah Palin. Charlie’s speech therapist was as stumped as I was. She doesn’t have a ton of kids using augmentative communication, so she’s like me–just figuring it out as we go along–but she had heard about an augmentative communication specialist at Children’s Hospital in New Orleans and I thought maybe we should make an appointment.

So today I called. Actually, I called last week and again this week when my call wasn’t returned because I’m one of those parents. (I also have my own laminator. Sue me.) The man at Children’s asked me questions for at least five minutes: how old is he? what activities have we tried? how many different levels does the GoTalk hold? I ended up not really needing an appointment–he just gave me a bunch of advice. How nice! and Unexpected! Usually they want charge your insurance company ten dollars a minute for allowing you to breath the same air as them.

Here’s the breakdown:
  1. Normal two-year-olds have very short attention spans. When planning a therapy session, count on having to change activities every five minutes.
  2. In the beginning, I shouldn’t expect him to use Tina for more than ten minutes TOPS! Poor Tina, she’ll remain abused and neglected.
  3. We should be using all five levels of the GoTalk with each level representing a different activity. One could be for foods, one for a few toys, one for a puzzle, and one for song. We’d been doing the opposite–we’d been using only one level because we didn’t want to overwhelm him. Apparently, we were underwhelming him by expecting him to be interested in nose, mouth, eyes, and ears for more than five minutes.
  4. The POINT of augmentative communication with a two-year-old is really just to get them used to using a device–it’s not going to be life-altering with a total of twenty words.
  5. All children have good days and bad days, so it’s OK if he doesn’t want to practice every day.
  6. Advancement and avoiding frustration might be mutually exclusive. Basically, we might have to push him a little to achieve on the GoTalk.

I called his speech therapist right after the conversation and we discussed everything. We’re jazzed and ready to start planning some activities–I’m getting ready to fire up that laminator right now.

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