Archive for May, 2009

Last Day of Preschool

Thursday, May 21st, 2009

Wow. Today was a rough one. It was Maria’s last day of developmental preschool–where she’s been for 2 years. Her teacher and paraprofessionals are deeply in love with her and it was quite emotional when we said goodbye for the last time. Plus, only 2 of her classmates are going to Maria’s new school, and neither of those is Samantha, who has been such a good friend to Maria, but I suppose she’ll make new friends.

Yesterday was water day at school. Nanny Sue stayed with Maria all morning; I dropped in for a few minutes after visiting the new school. I’m so glad I did–Maria was in hog heaven! She was lounging in the kiddie pool, playing hide-and-seek with Sue’s dress. They put her on a little car and she went down a track through a puddle of water (which I never would have thought she could do), but she was hanging on real tight, her feet were in the proper position, and she had the biggest grin on her face. It was magical!! She’s been in such a good mood all week (maybe she’s excited about our trip to Alaska?).

When Manolis and I were at Maria’s new school I let them know I have been underwhelmed by them so far; fortunately this visit was pretty good. I liked the PT that walked around with us, she seemed excited to work with Maria next year. The vice-principal, who won’t be back next year, was very nice and positive (although she did admit that Maria would probably be the “most special” kid in the entire elementary school…. What mom wants to hear that?!) We talked with the nurse (who’s retiring this year) about Maria’s meds, saw the diaper changing area, cafeteria, classrooms, playground, briefly met the principal (the one who wouldn’t return my calls).

I gave them another copy of Maria’s transition book (something I highly recommend– it’s a story, written in 1st person, about your child’s likes and dislikes, conditions, things to watch out for, etc. It has photos so they know who it’s about. I give it to the new teachers, therapists, etc.), and I gave them a 1-pager summarizing my concerns. I emphasized that Maria has two life-threatening conditions: seizures, which are mostly under control but could emerge again at any time, and swallowing difficulties, with which she could choke and die with one wrong swallow. Yes, I overdramatized a bit, but I don’t know who’s going to be dealing with her, so I need to be a bit dramatic (especially since Maria’s pediatrician has accused me–rightly so–of being too cavalier at times with Maria’s issues).

They invited me to come in a couple days before school starts to train the teachers, therapists, whoever, about Maria’s needs; and they invited me to come the 1st day of school and train them on her medication and feeding. Much more inviting than the previous 2 visits! They got the message that I wasn’t a happy camper w/o me having to be too much of a bitch. I have heard good things about this school, we’ll see soon enough. Fortunately, after this visit I feel a bit more at ease, although they don’t know who the general education or special education teachers will be yet, or the paraprofessionals who will be assigned to be with Maria all day (1 in the morning and 1 in the afternoon), so I won’t really relax until I see who they are and how they handle Maria. Can we be so lucky to have another Kelli or Denise??

Oh, yea, and I also mentioned the GAO report released yesterday on abuse of special needs kids in public schools (very scary report, OMG!) and how none of that better happen to our sweet princess.

Maria’s New Toys

Sunday, May 17th, 2009

Maria’s been doing pretty well lately. She’s developed a rash around her mouth and nose. I know she’s gotten it before but I can’t find other mentions in the blog. Our best guess is it’s because she sucks her thumb. Her fist traps the moisture and heat against her skin and when it gets hot she gets a kind of heat rash. I put some skin healing goop on it (organic, natural, blah blah blah) and it seemed to help but every time she rubs it, it gets inflamed again.

Manolis just finished putting some pullup bars on the wall. We are hoping Maria can use them to get up into a standing position. She’ll need assistance but it will be good exercise for her. Maria used them for a few minutes and seemed to like them but was unsure what to do. We’ll have to work with her some more before she gets it. I’m curious what the PT will think.

We continue to try to get the augcomm device going. We went to the school to have her school speech therapist help us with the overlays but she was, um, less than helpful. She understood the software a bit more than we did but was baffled by simple things like printing the overlays out. Maria’s normal speech therapist was supposed to be there which would have helped, but she got sick. That was unfortunate timing because she’s off for the next two weeks to get married. These silly therapists who think they have the right to personal lives!

Maria has outgrown her crib and Cathy’s been trying to find a good big girl bed for her. It needs rails but beds with rails are “special needs” beds so are much more expensive than normal beds. She finally found a good one at Ikea that they are getting today so Manolis can get it put together before he leaves.

The last day of school is Thursday then they are off on their cruise. As soon as they get back, Manolis heads back to Greece for four months. It’s going to be interesting.

Preschool Promotion

Friday, May 15th, 2009

Yesterday was Maria’s promotion ceremony (the teacher said they can’t call it “graduation” because that’s reserved for high school. whatever) at school. Just like last year, the kids sang songs, did their ABCs, and a couple other things. Maria was the first name to be called and I wasn’t quite ready. I videotaped it from the back row, so there are heads in the way, but it’s still ok. 4 or 5 other kids graduated, the rest are in preschool for one more year. As far as I know, only 2 of the girls are going to Maria’s school. Her good friend, Samantha, is staying at this school unfortunately. She was really good to Maria.

It’s pretty tough seeing a class full of kids, some a year younger than Maria, all singing, sitting up straight, saying the alphabet, etc etc while Maria sits there in her own little world. She looked pretty stressed, actually. I just don’t know how parents of special kids do it. Sue wasn’t feeling well, so didn’t come. Just as well because she certainly would have cried, which would have gotten me going. Seemed fragile enough w/o that. It just doesn’t seem to get any easier.

I’ve been trying to get over to Maria’s new school. I was going to just show up this morning, but sent an early morning email to the “intervention specialist” who finally called me back. She went on and on and on and on about how I couldn’t go see the regular classroom or the special needs classroom, confidentiality and disruption and none of the teachers will be the same and everything is in an uproar and and and and. But she did offer to take me around campus, to which I replied, “don’t take this wrong, but I don’t really care about the campus, I care about what situation Maria will be in next year every day all day.” I then proceeded to tell her how important my daughter’s happiness, security, etc is. How I understand that not all people are able to be around kids like Maria and how that’s ok, but Maria will not be with a teacher like that. And if I can’t see the classrooms now, then I will see them in the fall when she’s in class and if it doesn’t work out I will move her to a classroom that fits her better. She mellowed a bit then and the end result is I’m going in on Tuesday with my list of concerns (I guess it’s not spelled out well enough in her 20-page IEP [individual education plan] or in the transition book I wrote about Maria, complete with color photos, that specifically talked about Maria’s likes, dislikes, strengths, and areas to watch out for.) I told her it was all in the transition book, but that I’d write up some bullets if that would be better for her. I’m going to her school a day or two before classes start to “train” them on feeding, etc. and I’m going to sit in her class at least one day the first week. I suppose that’s good enough.

So far my introductions to this school have not left me with joy or comfort. I’ve heard good things about the school and the principal, but I’m not feelin’ it.

Weekend Visit

Wednesday, May 13th, 2009

Maria’s Grandpa and Grandma Ida came for a visit from Albuquerque this past weekend. We mostly sat around and ate. Saturday evening we went to the new aquarium, which was pretty cool. It would have been much cooler had we not recently gone to the Omaha Zoo, which is totally awesome… Here they have a penguin display with about 10 penguins. Cute. In Omaha, they have about 50 penguins, several different species. Here they had a column of water with about 6 flat silvery fish in it. In Omaha, they had about 200 in the same size column.

The coolest thing at our aquarium was the manta ray petting pond. It’s a large pool with a couple species of baby rays swimming around in circles. They were very friendly! Once or twice a ray came up to Maria and head-butted her hand and Maria actually squealed! So cute. They also had a petting pond with horseshoe crabs and starfish, but she wasn’t as interested in that.

We ate at the Cheesecake Factory, where I had some super delicious chocolate coconut cheesecake–probably the best cheesecake I’ve ever had. As usual, Maria and her grandpa got along great.

We’re still working on getting Maria’s communication device set up. It’s a pain because I have to learn new software, print the symbols on special paper, laminate it, cut it. The home speech therapist made some for us, but they’re black and white, and the school speech therapist wants them in color; and there’s disagreement about the placement of the pictures, and on and on and on. So we’re going to meet at the school Friday to get it worked out (great, right in time for school to be over).

Speaking of school, I wanted to visit the kindergarten classrooms at the school Maria will be going to next year. The intervention specialist was supposed to call me weeks ago, but hasn’t. I finally remembered to call this week and the front desk person put me through to the principal’s voicemail. She didn’t call me back. I called her again Tuesday, no call back. I was too busy today to call, still no call back. There’s only 5 days of school left. Kinda irks me!

Today I went to a training at Raising Special Kids on organizing your child’s records. I was the only student, so got lots of attention. Good thing I brought Maria’s records even though they didn’t tell me to. We spent time in class putting the papers in a notebook, so the class would have been very short had I not thrown them in the car. She focused on school documents and I only brought medical docs, but we still got a lot done. I’m not going to do it exactly as she suggested, but at least it’s a good start.

Tomorrow’s Maria’s graduation ceremony. Gulp. If I concentrate on taking pictures, maybe I won’t cry….

Speaking of the pig flu, I just had a cold that appears to have turned into allergies. Been here 7 years and now I’m getting allergies?

New glasses, new coordinator, and pig flu

Saturday, May 2nd, 2009

Maria had an eye exam this week. Her vision has changed a little bit, enough that he gave us a new prescription for glasses but not enough that he thought it was actually worth filling. Then Maria knocked her glasses off while we were on a walk and they went right under the wheels of the stroller. Nice timing. So she’s going to get new glasses this weekend.

We haven’t started using the Tech/Talk yet. We got the hours approved for training and the speech therapist is trying to find time. The weeks are passing quickly though and it’s looking like she may not be able to use it in school this year since the last day of school is just three weeks away.

We finally got a new coordinator at DDD since we didn’t like the last one. The new one seems OK, maybe a little ditzy and stubborn. She actually argued with Cathy over how to get to her house, saying that Mapquest was giving her different directions than Cathy was. She didn’t seem to think Cathy knew how to drive to her own house! She came by for Maria’s quarterly review and has long blonde hair that Maria yearned to pull, but we kept her away.

This might be the last blog entry. Cathy’s been sick the last couple of days and we figure it’s probably the pig flu (as Manolis calls it) so we’re all going to die now. After all, it’s not like the media would ever massively overreact to a situation. Maybe we should put on our masks – you know the ones with pores a hundred times larger than a flu virus. Or should we get out the plastic and duct tape?

On the outside chance we don’t all die of pig flu it should be a quiet week. The only big thing coming up is Maria’s grandparents are coming out for next weekend.