Maria Rose

Today began Maria’s 3rd week of school and the 1st day she rode the bus to and from school. The school was kind enough to let me ride with her to school, then the bus brought me home. They even asked if I wanted to ride home with her, but I told them I was ok. I’m very impressed with the bus driver. She’s been doing it for years; everyone speaks highly of her. Her aid is fine. He’s a boy, so Maria will like him! They have a wheelchair lift, which is how she gets on and off. It’s a brand new (2009) bus, so it’s clean and nice. Maria’s stroller gets strapped in with her in it. They really tighten it down (obviously). She sits right behind the driver, so it would be really hard for anyone to pick on her. She’s the 2nd to last child picked up and probably the 2nd one dropped off. There were only 5 or 6 kids on the bus today. It was quiet. I think it’ll be a good thing. I had a little bit of a hard time when they dropped me off this morning. I don’t know why…. Some days all this crap is just overwhelming. Most days I’m fine.

When Maria got off the bus this afternoon, she looked so proud and happy! It was very nice. Of course, there’s Sue yelling greetings to Maria and I’m there too, so it’s hard not to be happy when you arrive to a fan club! The bus will be easier on me (and Sue). Andy will continue to pick her up on Friday afternoons. That way he can pick up the medicine bottle from the nurse when it’s almost empty (kids can’t transport drugs–can’t have Maria chugging Depakene).

She had a noonish appointment with her eye doc. He took so long to come in that she fell completely asleep. He didn’t wake her, just pried open her eyelids and shone a light in them, said her Rx was still fine. Next visit (in November), he’ll need to dilate her eyes. Last time he did that was on our first visit, about 4 years ago, so I guess it’s time.

Maria is still eating great, getting 3 meals a day (probably for the most consecutive days of her life!). She falls asleep most evenings at 6pm, so she’s getting plenty of sleep.

We went to a party Saturday evening and she hugged 3 people w/o grabbing. She was even stroking Kim’s back. It was sweet and shocking! She did grab one woman’s hair and shirt and tried to take a nibble, but let go when we told her to.

We’re not able to see Debbie (Jin Shin Jyutsu) for 4-5 weeks, so I hope Maria continues her cognitive jumps w/o it. Maria’s been a bit congested the last day or two; I’m hearing that kids are starting to get sick, so we’ll see how her immune system holds up w/o the Jin Shin.

As with preschool, 2nd day wasn’t quite as good as 1st day. We got there a bit later, so all the handicapped spaces were full, so I just parked where I wasn’t supposed to (like all the other freak parents). Maria fell asleep last night at about 6pm, when I took her to bed at 7:30 or so, she was completely stuffed up–that fast! I put her to bed with the humidifier, kept checking her and she never ran a fever, slept well, seemed ok this morning, so I took her to school.

One of the special ed teachers called me from the nurse’s office at 12:30pm because Maria’s eyes were bouncing a lot (nystagmis–don’t know how to spell that, too lazy to look it up), and she’s seen that be a precursor to seizures, so she just wanted me to know. Maria slept some in the late morning, didn’t eat much. So of course, I was kinda freaked all afternoon, carrying around my phone in case they called to have me come get her.

When I went to pick her up, she looked great! Although she smelled like shit. Literally. Got her home and the poop had been there a while, it was a little dried. I mentioned it to the not-so-great aide and I mentioned it in Maria’s communication book, so I hope it won’t happen again. But anyway, the aide told me the kids in the general ed class at the end of the day noticed that Maria was awake today! (Yesterday she fell asleep for the last 20 min of school). She was bright-eyed and happy to see me, funny, and so cute!

One of the teachers told me that Maria’s feet were ice cold. Yesterday they took her shoes and socks off because they thought she was hot, so today I sent her in sandals and no socks. Of course her feet were freezing. Darn it! Poor thing with popsicle toes…

She stayed awake again until 6pm, ate well for Sue, drank, took her medicine. She was stuffed up again, but seems to be feeling ok. Now what will tomorrow bring? I can tell you, it’s a bloody mad house dropping off and picking up. Some of those parents are idiots. (probably thinking the same about me…) Oh crap, we have speech therapy at 7:30am. I really don’t think that’s going to work for us; fortunately she has some open spots in the late afternoon.

It is tough getting Maria and I ready for school in time to leave the house at 8:30am. How DO people do it? Of course, Maria’s a bit more complicated than the other girls… I had her backpack with diapers, shoes (forgot the AFOs), blanket, markers, glasses, medicine, pediasure, thickener, sippy cup. A lunchbox with her lunch and bottle. A bag with 2 diapers and wipes, so they can just take that small bag when they go to change her. A bag with the communication device and sheets of pictures. Plus my purse and my camera.

We were greeted by the paraprofessional, who I liked. She was friendly, asked questions, was good with Maria. We wandered around lost for a bit, then got to the general ed teacher’s class for the first hour or so. 18 kids in the class with 1 teacher, no aides!! She’s nice, but pretty much ignored Maria (which is ok, since Maria had 2 adults in tow). We then went downstairs (on the elevator that is only accessible with a key) to one special ed classroom. Seems like we shuffled back and forth across the hall between 2 special ed classrooms and 2 teachers (odd, don’t know why they didn’t have it in bigger blocks??), with a break in the middle for Maria to eat lunch in the cafeteria with her peers. The teacher had 2 tables next to each other, but no place for Maria to sit, so we sat at an adjacent table while I trained the para on how to feed Maria. The teacher said she’d get 2 different tables, so Maria could sit at the end of a table and join her class. The cafeteria wasn’t too bad at first, but as the older kids came, it was LOUD!! And Maria did great!! She ate decently for being in a new place with a new person feeding her with lots of noise. Maria was engaged all morning, she really seemed to enjoy herself; not the typical 2-fisted thumbsucking in the fetal position. Yea!!

I was really feeling good and hopeful. The afternoon wasn’t quite as good. I’m not as enthralled with the afternoon paraprofessional. She didn’t ask me many questions, didn’t seem appropriately freaked out when she was feeding Maria, didn’t totally pay attention to Maria (like when Maria was pulling on another girl’s shirt, which turned out ok, but could have turned into an ugly situation if she’d freaked out the other girl). We were often late to where we were supposed to be because she wasn’t looking at the schedule. hmmmmm, it could be because I was there and this is only her 2nd year, so maybe she was deferring to me???? (benefit of the doubt).

The special ed teachers are really different–one of them is really laid back, the other seems to be more in teacher mode all the time. Both are super nice. Teacher-Mode has more experience with kids like Maria. Laid-Back was ok at first, but after the 3rd or 4th period with her, seemed a little too hands-off, laid back. The kids were pretty much on their own (each kid had an aid or shared an aid with 1 other student), so what they did and got out of the day/hour was totally dependent on the aid, which could be good or bad… I think laid-back teacher has a lot more administrative duties, so I think she was just trying to get everything/everyone squared away. There were only 3-5 special kids in the special classes, so Maria will get plenty of attention. I just hope they do some teaching. But, it is just the first day, and as far as first days go, it was pretty good.

I talked with the PT and the OT; saw 2 speech therapists in the hall and was going to meet with them 1-on-1, but they weren’t in their room when I went in there, and by then the day was almost over. I also saw the hearing teacher for a bit; she had the FM system with her (teacher wears a mike, small speaker sits by Maria–we’ll see how THAT goes!). We also met with the nurse for her seizure medicine. She seemed real nice and patient also. With the sheer number of people and places Maria will be (with), things may slip through the cracks. I do hope they use the communcation book!

All-in-all, I feel good about it. Her day will be so personalized to her needs that she won’t get lost in the crowd. But we will see about those few people who didn’t seem as engaged with her as they should be. Oh yea, and Maria looked so cute today!!! She wore a pink/brown striped dress with brown leggings with pink buttons at the bottom. Such a big girl!

After Cathy’s problems getting straight information last Thursday, we were a little leery when we went to the meeting on Friday. We were pleased to see Maria’s teacher, two special ed teachers, two paraprofessionals, the PT and one other therapist (I can’t remember what her specialty was). We weren’t sure how many were going to be able to make it.

They were all very nice. They asked a lot of questions and seemed very interested in giving Maria the help she needs. We are afraid we will someday get the teacher who doesn’t think kids like Maria should be in her class, but we’ll face that when it happens. Things went well and we feel better about her starting school – hey, that’s today isn’t it.

The only little wrinkle was Cathy mentioned offhandedly that we wanted Maria to take the bus home. She was told that’s a change to the IEP and we’d have to have a formal meeting over it. I realize it’s all part of the bureaucracy, but geez! It’s not an educational issue; it’s an administrative one. They said it would be easy but it means for the first week or so, Cathy will have to pick her up after all. We don’t want Sue picking her up since she’s still recovering from her heart attack.

Maria’s walking continues to improve. She has been fighting me when I try to work with her, but Friday she was doing great. She took lots of steps with just occasional nudges at her feet. Her record with me was 50 in a row and it was only 50 because I got tired. She also did several clusters of quick steps with no prompting at all. It’s nice to see her getting interested in walking again. I dreamed last night that she got out of her chair and walked 2-3 steps to get to me. Let’s hope that’s a prediction.

Maria has done great the past several days with her walking. She’s taking steps by herself (w/o us needing to “kick” her feet to move). When I walk with her, I always say “big steps” so she doesn’t step from behind to even with her other foot, rather she steps from behind to beyond her other foot — does that make sense? Big steps. Today, apparently (of course I wasn’t there to see it), she did great with Barb (PT)! She and Sue were so proud! She even walked to the door and back twice (I think) in the Miniwalk! Unheard of. She’s really getting the hang of it.

I’ve been dancing with Maria. She stands and I hold her hands facing her, I move my feet and shake her arms. The other day she even stepped her feet to the side once or twice. Wouldn’t it be awesome if when Manolis got off the plane, not only would we be standing, but we’d be dancing too? Dancing’s my goal. Standing’s the back up. Sitting in the stroller is the fall back.

Today was Meet the Teacher day at school. We went to her classroom and met her teacher, who seemed very nice. She didn’t know how much Maria would be in her class or when. She wasn’t sure if she could meet with me tomorrow (I’d like to meet with them before school starts to do some “training” of Maria’s uniqueness). She wasn’t sure which Resources (special ed) teacher Maria would have. But we wandered around the class, Maria seemed to like it. Looks like there will be about as many kids as in her preschool class, less than 15. One of the kids from her preschool class will be in her class, she and her mom both seemed very excited to see Maria.

Then we went down to the Resources rooms. Talked with a woman (not sure of her name or position), who wasn’t sure about tomorrow or teachers or therapists. She took us to one of the special ed teachers, who’s new at the school and is super nice, has lots of experience, and is very excited to be there. Since she’s new, she didn’t know much, but she said there was a mandatory training all day tomorrow that all the teachers and aides (paraprofessionals) have to go to. She took us across the hall to meet the other special ed teacher, who said, yes Maria will be with me for 5 periods and with the other special ed teacher for 3 periods, and after a week or two we’ll figure out how much she’ll be in the regular classroom. She said the mandatory training starts at 9am, but she’d love for us to come in at 8am for “Maria training” and she’d go to their training late. She even checked with the principal, who said that was fine. FINALLY, someone who knew something. You’d think since school’s starting MONDAY, they’d know where Maria was going to be…

Several of them remembered Maria’s transition book, but nobody had a copy. I updated it (the last one was from Oct 2008) and sent it to Kinko’s to have them print color copies, but unfortunately they won’t be ready until 9am, so I’ll have to drop them off at the school after our 8am get-together. (Isn’t that great? I just send the file, give them a credit card number, and walk in to grab a completed job!). It wasn’t as expensive as I thought, either, for 10 color copies of 6 pages each.

Even after all the walking and standing Maria did today, and even though I woke her from a dead sleep to drag her to school, she really seemed to enjoy it and I’m feeling a little more at ease.

I took Maria to the Children’s Museum in downtown Phoenix today. It’s a big place–3 floors. My favorite was the third floor because there seemed to be more things that she could interact with. It’s a wonderful place for a typical kid, and pretty good for a special kid. I just have to get past the people who stare and the ones who look away, pretending that we aren’t there (which is what I used to do in the past, not realizing that by trying not to be rude, it’s a little bit rude, well maybe “rude” isn’t the right word…).

We did a few things; for example, we went through the noodle forest, which is a bunch of those styrofoam pool noodles hanging down from the ceiling. Couldn’t tell if she liked it or not. We painted rocks (3 big flat rocks that you could paint with water and paint brushes). There’s a kitchen with fake food. I grabbed a big mixing bowl that had bits of cloth in it and Maria played with the different sizes, shapes, and textures of cloth. There was a bin with dried green split peas to scoop and measure/weigh, she played in those for a while; I really had to keep an eye on her because she wanted to put them in her mouth. There’s a separate room for kids that are 3 and under, which was nice and quiet and had some things for her to play with, mirrors and bars to hold onto while standing, puzzles, and nice little round nests with soft pillows in them where she almost fell asleep.

Most of the things in the museum are for kids who are mobile and dexterous and sighted–tubes to crawl through, drums to play, art projects, obstacle courses, “cooking”, and “shopping”, and tons of other things. But there were enough things and places to keep Maria occupied until she was sensory overloaded. The only place I felt somewhat unwelcome was the art room, but I might have been projecting my own insecurities.

It was $9/each to get in to the museum, so we certainly couldn’t go too often, and it’s downtown, but not a bad place to go from time to time. The other place I thought about going to is the Arizona Museum for Youth in Mesa. It sounds smaller, but might have some interesting stuff. Maybe next week before school.

Yes, next Monday school starts. This Thursday is “meet the teacher”. I got a letter from a teacher, who I assume will be Maria’s teacher, even though it didn’t explicitly say so. I emailed her to let her know we were coming and that I’d like to meet with her Friday and I’m expecting to accompany Maria all day her first day, based on the request from the vice-principal and “intervention specialist” (special ed) that I do so. We will see…

Maria went to her pediatrician for her annual exam. It was the best one ever. No shots, no blood draws, no bad news. We were the last patient of the day and maybe that’s why our doc was a bit wacky. She’s usually the best!! I told her about the ant attack (I’m still not over that one. It’s going to take me a LONG time to get over it. Now, every night when I put her to bed, I turn on the light and do a bed check. Whenever I check on her through the night, I do a bed check. First thing in the morning, or if I hear a peep out of her, well you get the idea. More ants in the kitchen yesterday. Exterminator’s coming today. Will I sleep easier tonight?), and about Maria being pale all day, so she asked me if Maria was anemic. I don’t recall anything ever being said. But I started wondering, hmmm, if I was to try and find out, where would I go….the pediatrician!!! They’re the ones that do the blood draws, she could look in their records! But, as I said, we were the last patient of the day.

Maria weighs 34 lb. They didn’t tell me the height/length. They didn’t measure her head for the first time. Doc said she was happy with Maria’s growth, glad to see her standing. Pretty uneventful, which I like!! Seems like there was one other wacky thing she did, but I don’t recall (it was 3 days ago, after all).

Latest on the aug comm device…we made 2 boards with body parts– 1 has eyes, cheek, chin, nose; the other has hands, feet/toes, knees, belly. Both have more, all done, tickle, touch. Those are boards that Maria can interact with. The ones the speech therapist made last time were all of therapy toys that we don’t have. Sorry, but using it for one hour a week (w/o letting Maria touch the device) sorta defeats the purpose!! I asked what we should tell the school to do and she said we shouldn’t be telling them what to do (dissing them). I reminded her that we’re coming up with our own design, color scheme, etc, so we set the parameters. If the school was doing it, they’d do it the way they do it with the other kids, which won’t work with Maria. Argh! Very aggravating, but I shouldn’t say anymore…

Oh yea, We sure miss Manolis!!! Just over 2 months to go.

The day started off with a little drama. Cathy heard Maria yell for her this morning and figured it was her usual “Mommy, change my diaper” yell. As she was changing Maria’s diaper, Cathy saw an ant. Then another. And another. The bed was swarming. Cathy whipped her out of there, took off her clothes and found many ant bites. Although they’ve had ant outbreaks in the living room and kitchen, I believe Maria’s bedroom has always been safe. Still, silver lining – Maria yelled when she was in trouble. There was a time she wouldn’t have reacted at all much less thought to call for help.

We continue to struggle with the augcomm device. The speech and occupational therapists came up with some great new scheme for the symbols, but they have told us only a few things about it. We aren’t using it much because we are unsure how best to integrate it. We had hoped to be using it regularly by the time school starts, but that’s only two weeks away. It’s frustrating that there has been so little progress made but the speech therapist is just piddling around with it and we’ve been waiting for her to take the lead.

Other than these couple of incidents, Maria is doing well. She gets her 5-year checkup with the pediatrician tomorrow but that should be routine. The PT is off this week so Maria gets a break but often those breaks are as important as the therapy. We’ll have to be sure to stay on top of standing and walking and such this week. As usual, it’s not so much whether she can do it but whether she wants to.