Thursday, January 15, 2009

Week in Review

It's been a busy, busy week.

Kipp had Monday off, and it just so happened to be the Monday of the local parents' group meeting. They had a couple of guest speakers we were really interested in; a married couple in their 30s. Both of them just happen to have Ds.

It was both enlightening and sobering in some respects. Like I said, they are in their 30s, so they grew up in a much different world than our kids are growing up in now. They didn't have early intervention. They weren't mainstreamed in school. When they got married, their group of peers, a small group of adults who have Ds that they grew up with, stopped socializing with them. The reason, the young man's mother (who was up there as a guest speaker also) explained that the parents of the others wanted to avoid trouble; it's heartbreaking to have to tell your child they can't do something, and if any of them had been influenced by their example and wanted also to get married, it would have brought so much trouble to them.

The couple was so charming. The man was very well-spoken, and the woman very shy. They were both funny, and had amazing comedic timing. They both work; she is a bagger at a grocery store, and he works in the bakery at Wal-Mart. He was asked how much he makes (since he's not drawing SSI), and he informed us $10.45 an hour. The room was really impressed by this, and he grinned at us, and rubbed his fingers together in the universal sign for "mucho money."

They held hands often during the meeting. She often laid her head on his shoulder. He did almost all of the talking; she is hearing-impaired and her hearing aid is broken.

They live with his mom, who maintains guardianship over him (so they aren't legally married.) She agreed to let them marry, as long as they agreed to have the woman's tubes tied. They both love children, and were hoping to have children of their own, but the man's mother stood her ground. "There's a difference between loving kids," she said, "and being able to take care of them 24/7." The couple does have several dogs; the young woman said her dog was her baby. When asked if she was okay with not being able to have kids, she hesitated then said firmly, "No. I wanted a baby." But she sighed with resignation, and laid her head on her husband's shoulder.

They don't have drivers licenses, but the man does know how to drive. Again, his mother insisted he not get a license; she thinks he'd pass the test with no problem, but she's concerned about his reaction time, and more concerned about the rest of the drivers out there. You could see the pain in her face when she discussed her decisions about the driving and the grandbabies; they were hard decisions for her, and it hurt to have to make them.

The wife owns a 2-bedroom log cabin on her family's property out of town. The couple spends every weekend at this home alone. They do have an agency that checks on them, to make sure they have food, that the food isn't spoiled, and whatnot, but the rest they do themselves. There are lists in every room to remind them of the things they need to do to keep the house neat and clean.

That was Monday night; Kipp and I talked all the way home about future possibilities. Well, I babbled and he listened. You know how it goes.

Tuesday, I took Kiki to her pedi. Her diaper rash was just not clearing up, and it had developped blisters over the weekend. He said it looked like it had gotten bacterial, so she's back on an antibiotic. This one? Every 6 hours. Geez! We're lucky Kiki takes medicine so well.

We talked about testing her for celiac disease. I told him I'd already put her on a gluten-free diet and had seen improvements in several areas (not to mention her hair is growing back.... did I mention that?) He said since the blood test looks for antibodies, being on a gluten-free diet would most likely give a false negative if she does have it.

But this is why I like him (it doesn't hurt that he's flirting with Kiki the whole time.) He added, "Let me ask you this. Let's say we do the blood test and it comes back negative. Are you going to change her diet?"

Well. No.

"Exactly," he said. "If she's improving because of the gluten-free diet, why would you change it? And if she does have celiac disease, the only thing you CAN do is put her on a gluten-free diet. Now if in the future you need a diagnosis for some reason, like when she gets into school and you have problems getting them to give her gluten-free food, I will be more than happy to talk with them, give them a note, whatever it takes to ensure that she stays on the gluten-free diet."

Love him.

Next up, Kipp wanted her tested for diabetes. She's been peeing CONSTANTLY, and is always signing for drink. Kipp has diabetes, and excessive peeing always makes his radar go PING! PING! PING!

"Well," he said, "If we're going to test for diabetes anyway, let's go ahead and test for celiac at the same time. Might as well test her thyroid while we're at it."

Yep, love him. Not even any argument, just "Okay, let's go!"

The blood drawing was dramatic. They had to take it out of her arm, and didn't get enough out of the first arm, so we had to go to the other one for the rest. She was NOT happy. She cried and yelled afterwards, and I held her and comforted her, and just before we left, she stopped, smiled at the blood people and waved bye-bye.

Then snuffled all the way to the car. Poor darling.

Wednesday, we had our WIC meeting. She spent the whole time signing for a ball. I don't know why she thought the WIC lady had a ball, but she was insistent about it.
And then she had her ST, but her focus was way off.

Today, she had her OT, and her focus again was kind of off. For the first time ever, she actually turned her back on us and pretended we weren't there.

Now I love her OT. She's a fabulous woman, and she's been getting great results with Kiki. She tends to get boisterous when she's excited, however, and she often rubs Kiki's torso or roughhouses her when she's playing. Kipp and I don't really roughhouse with Kiki the same way; you can tell by the look on her face and her body language that she doesn't like it.

So I intervened finally and told her OT all of this. She apologized and explained that with most of her clients, exuberant and rougher feedback is often necessary due to their sensory issues. I said there was no apology necessary; she hadn't done anything harmful or anything. It's just Kiki is a different kind of kid; she responds quickly to praise, and she gets overwhelmed easily when there is loud noise or is surrounded by too much activity and motion.

Later in the afternoon we went shopping. My gluten-free pantry is getting bare. I remembered that the large grocery store in town here has a health food section, and I decided to check what they have. You know, because it's only 3 miles away, and the health food store I went to last week is like 15 miles away. Score! So much gluten-free stuff!! Yay!

And you know, now I don't have to drive all the way to another town and drive through busy big town streets just for health food. Hee! I say "busy streets" and make the woman in me who grew up in the Bay Area, CA, laugh like a school girl.

I'm spoiled, people. I'd rather drive through the woods to get to the grocery store than have to take highways and city streets. So there you go.

And that's all I have. Isn't that enough? Isn't that a lot?


YarnHacker K January 16, 2009 at 11:37 AM  

Definitely a lot, but never enough! :-)

YarnHacker K January 16, 2009 at 11:37 AM  
This comment has been removed by the author.
starr February 7, 2009 at 5:41 AM  

Wow, what alot of info to digest in one week! That meeting sounds so cool!

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