Archive for September, 2009

Lost Another Speech Therapist

Wednesday, September 30th, 2009

Maria’s speech therapist got a clinic job so that means regular work, benefits and so on but no Maria. So we are yet again on a search for a speech therapist. We hope to find one who specializes in augcomm devices since that is Maria’s biggest need right now.

We went to a conference on cerebral palsy in Scottsdale last weekend. It was kind of interesting although much of the stuff wasn’t necessarily relevant to Maria. It was of course a bit depressing hearing some of the challenges she has to look forward to in the future but we have plenty of time to worry about those things later.

An interesting thing happened a couple of weeks ago. I was out on the patio with Maria when Cathy came out. She said Maria’s name and Maria zeroed in on her immediately. She then started struggling to get out of my lap so I figured she wanted to do some walking. We walked toward Cathy but as we got close there were ants on the ground and Maria was barefoot so I turned her around. Maria got very agitated when I did and kept trying to turn back. It wasn’t until a bit later when I thought about it when I realized she seemed to be deliberately walking to Cathy. Later I was walking with Maria inside. Cathy was sitting to the side and Maria had her head turned toward her. I turned Maria so we were walking toward Cathy and her paced picked up immediately.

That’s a huge development because until now walking has just been a game. If she understands it’s actually a way to get from Point A to Point B she will have more motivation. Sue has been working with her in the walker, holding out toys to inspire Maria to move forward. It’s been working somewhat so we should try to do that more often. It’s just so hard to work all these little things into the day.

The OT was thinking Maria is ready to learn “yes” and “no”. We worked out these exaggerated signs for her and the idea is for us to have her make these signs when we ask her questions so she figures out they are a way to control her world. I really like that idea although it’s easier to work “yes” in than “no”. We basically have her say “yes” to whatever we are going to do anyhow. Still, it’s another path to communication.

It’s now less than two weeks until Manolis comes back and everyone is very excited. It’s a pity he couldn’t be back sooner because the house next door was bought by a property flipper and he could have had a painting job but they’ll be done by the time he gets back.

Bug Bites

Friday, September 25th, 2009

2nd time in 2 or 3 months that Maria was attacked in her bed by insects. Last time it was the ants, this time we don’t know what it was. Her left elbow had about 15 bites, but nothing anywhere else. She seemed happy this morning, ate well, drank fast. Shortly before school she was squinting her left eye, so I gave her Tylenol and she immediately tried to fall asleep, which is what she usually does when in pain. I searched her bed and found nothing. Looked up bug bites on WebMD and found that they’re recalling some infant Tylenol–you know, what I gave her this morning.

The nurse called me at 12:30pm, said the bites were worse and felt warm. Called the doc for an appt (3 minutes after they closed for a 90-min lunch), they got us in at 4:40pm. I called the nurse to see if I should come get her, but she said Maria was asleep, so we left her in school until Andy picked her up.

The doc was totally perplexed about the bites, said to come back if anything gets worse. Gave us cream for her yeast infection (which I thought was diaper rash). And she got a flu shot (and really jumped which is good/bad. Good because she felt it and bad because she felt it.).

She was really tired tonight, went right to sleep, but now I’m nervous about her being alone in her bed. (And just now she woke up thrashing, I changed her diaper and checked her bed. Nothing.) As soon as Manolis gets back, I’m going to have him build her a bubble so nothing bad will ever happen to her…no insect attacks, no flying pig flu…

Annual Review

Tuesday, September 22nd, 2009

OMG! I was told I have bad Service Coordinator karma today. We had Maria’s annual review with the state. The coordinator was there with me, nanny Sue, and a rep from the agency that provides Maria’s habilitation (which Sue does; habilitation is where she’s teaching Maria to do tasks for life skills, like holding a spoon). Maria came home from school (asleep) an hour into the meeting and the physical therapist came for her weekly visit 30 min later. The woman from the state was trying to be nice, I suppose, but she kind of has a bit of attitude, kept cutting me off, kept contradicting what she’d just said the previous minute, oh yea, and did I mention she kept interrupting me? Once when she interrupted, I said, “wait, listen to me!” or “let me finish!” or some such command. (which shockingly stopped her).

The one that really ticked me off was when she asked me if we had a plan in place at school for if/when Maria had seizures. I pulled out the document I’d given the school and started to read it and she interrupted me and started talking about something else! Wow!

We’d been discussing at length the need for 2 hrs of physical therapy per week. I was trying to explain the hippotherapy in the winter, intensive PT to work on walking in the summer, kept reading from Barb’s latest report about how many sessions we had this past summer and the wonderful results we got. At the end of the report, Barb wrote that she recommends 1 hr of PT/week, so the coordinator was telling me what she needed Barb to do to support the 2 hrs/week. When Barb walked in, they’d never met, but the coordinator just jumped on her and told her she wanted her to change her previous 4 reports to say she recommended 2 hrs/wk. Barb was caught cold so she disagreed, which caused the coordinator to accuse me of asking for something the PT wasn’t recommending. I’m sure this makes no sense, but that’s about how the meeting went. I thought we were on the same page on something and then zing, off it went.

At one point the woman from the state actually said, outloud, in front of all of us, that she now understood why the last coordinator had such a hard time with us. I could not believe she said that and wish I would have said, “EXCUSE ME?!”

Poor Maria doesn’t like conflict. She wasn’t as upset as when the last coordinator was there, but she was definitely out of sorts.

When she left, all of us just looked at each other and said, wow! Bad coordinator karma. I definitely need some advice on how to deal with people like that. 3 more weeks until Manolis comes home! sorry, no re-reading and editing of this post. The Mama just needs a rant entry every so often…..

Arizona Museum for Youth

Tuesday, September 8th, 2009

On Sunday, we went to Mesa to check out the AZ Museum for Youth. Target sponsors the first Sunday of the month making it possible for people to go to that museum, the Museum of Natural History, and one other museum, all within walking distance, for free! Nice deal. Downside–it’s crowded!!!!

There were some things I liked about this museum better than the Phoenix Children’s Museum. It’s smaller (which is good and bad). I LOVED the monster exhibit. It’s a dark room lit with black lights; monster eyes are painted on the wall, glowing eerily; stuffed monsters are scattered about for kids to play with and throw around; plus there were a couple scary hats–all glowing under the black lights, of course. Maria’s pants and shoelaces were bright white. We sat on the floor and just took it in for quite a while. She seemed to like it, then all of a sudden got overwhelmed.

The other thing I liked better is their art room. There were several tables of different heights. 2 of them were the right height for the stroller to be pushed right up to the table. They have the stones that you can paint with water at one table, and textured pictures (one was a fish) for rubbings at the other table–you know, where you put a piece of paper on top and rub the design into the paper. The lower tables had colored pencils and I’m not sure what else. It was a calmer room. Lots of the exhibits weren’t appropriate for Maria because of her vision and cognitive stuff.

There was an under 4 room. They were very gracious about letting us take the stroller in there (strollers weren’t allowed). I much prefer the Phx Children’s Museum under 4 room, it’s bigger and calmer. This one was tight and crowded with people who weren’t all that polite. The best things we found were the peg puzzles like Maria does with Chris (OT); we started playing with one, but I thought it seemed too much like work/therapy and this was supposed to be a fun trip, so we went to the coolest thing in the Under 4 room–a light box with colored translucent blocks. Trouble is there were a couple kids that were there for quite a while and did not want to move. We sat next to them for a while, but it was too crowded. Great thing for a kid with cortical visual impairment or other vision issues.

No gift shop, which is a shame (not that Maria needs anything else!). I would have liked to have gone to the Museum of Natural History because there were dinosaurs out front, but Maria was getting tired and I didn’t want to overdo it, like I often do with her!

After lunch and a nap we went for a swim in Sue’s pool (they’re in Vegas). I think she liked it, a little chilly for me. She did a lot of yelling at first–a lot for Maria. (cold water? no Sue? excited? scared?) But after about 10 minutes or more of swaying in the water, she finally relaxed.

Those antibiotics sure mess up her system. She gets an upset stomach, or so it seems, and wicked bad diaper rash. Poor thing. But she never complains! If only the rest of us were like that, eh?

I’ve managed to mostly avoid politics in this blog, but I just can’t believe that idiotic AZ school superintendant and all the other paranoid, right-wing wack jobs that didn’t want their children to hear the president speak to the kids today. Pretty dangerous stuff-kids, pay attention in school, wash your hands, and do your homework. Wow. But I digress…

I met with Maria’s school speech therapist and she gave me some good ideas for the TechTalk communication device. Can you say simplify?! We really got off track with it. We’re going to stick with 2 messages for school (hi and some other word that would be appropriate for circle time with the general ed kids) and 2 pictures for home of things she wants and will only get if she pushes the buttons (her Elvis dog and music). So far, I’ve liked all Maria’s school therapists. I still need to meet the OT, the vision teacher and the new hearing teacher (I thought it was going to be the one from last year, but they switched her).

Quite a Week!

Friday, September 4th, 2009

On Tuesday, the nurse called and said Maria had green gunk in her nose and a kid in the class had a sinus infection, so I took her to one of the pediatricians we don’t care for (I’d forgotten until after our appointment). He said her throat looked irritated, so we could do a strep test or just give her antibiotics. Because of how she’s been acting and since other kids have been getting sick and since her throat was irritated, we took the antibiotics. She seemed much better Wednesday. Then Wednesday night when I checked on her, she’d thrown up all over, then fell asleep covered in puke.

Thursday she wasn’t eating much and they were worried at school, so they called me again. She didn’t eat for Sue either, yelled if Sue ever left her sight, and had lots of loose stools (gotta love those antibiotics…). When I got home, she’d yell if I left her for a minute, but she did eat for me. Didn’t sleep much at all, then slept all day at school. They were worried, so they called Andy (since I told them I’d be on a conference call all morning), but he said that wasn’t abnormal for her to sleep all day. I like it that they call often. It shows they’re paying attention and they care. I feel that we’re establishing a strong bond and rules of whatever, which will help over the next 7 years that Maria is at that school. She still seems a little funky this evening, but we have a low-key weekend, so she should be a lot better Tuesday when she goes back to school.

On the bright side, we got a new chair. It’s called a Special Tomato Soft-Touch Sitter. It’s a molded rubber chair on a wooden base. Sits low to the floor, so Maria’s feet touch the floor when she’s in it. She likes to push her feet and scoot around in it–it’s awesome! I got a little video of it. The way the sides are molded, she can’t do her slumping to the side like she tends to do in the high chair. And, the best part, it was “only” $311! (which really is cheap for a therapy item, and furthermore, I just looked at the website and it’s $100 more now!!!).