Maria Rose

Maria’s had a busy week. She turned 7 on the 23rd and she lost both front teeth within a few days of each other. Fortunately she managed to get both of them out herself. I found one in her bed with some blood on her pillow, in her mouth, on her thumb. Yikes. The other one was hanging precariously for a few days. We kept trying to yank it out because it seemed to be bothering her, but we couldn’t get it. Then one evening, she was chewing on her hard plastic medicine bottle, I heard a little yelp, and there it was. Such a good girl.

I feel bad about this year’s birthday. I did manage to get a few little things for her classmates–crayons, magnifying glass, and a stencil for each kid, and a bucket full of musical instruments (cheap, plastic ones from Party City) so they could have a band. They had a little party (which of course the parents can’t go to because they don’t let the parents in the class…) at school, and the kids on the bus made her a card. We saw my friend, Monica, and her husband, Ted; they were in town for a wedding. They gave Maria one of those books you record. It has magical princess music on every page–very cute; and a fairy card that also has music. Sue gave her lots of clothes, as usual, and a cool huge card where a butterfly jumps out at you and a kid yells “Happy Birthday!” It is so cute! And of course, our buddy, Elvin (my old boss), and his wife gave her a fab card. And she got some $$ from her grandparents and a couple others. Thank goodness for friends. Manolis got her balloons and I got cupcakes, but that’s about it. We didn’t even really celebrate until the weekend, and then mostly just for the photos. Ahhh, the good and bad of having a child with severe developmental disabilities…

I guess summer school is going ok. They are all starting to fall under the magical Maria spell, and adoring her, and saying very sweet things. I expect nothing less. But it still bothers me that I’m not allowed to see her in class……I guess it’s just getting used to something new. She’s doing better with eating her snack and drinking all her milk, so it seems that she’s feeling more comfortable with them and they with her. Only a couple more weeks anyway. It’s a good thing for them that I’m so dang busy at work.

I filed the appeal for the bath chair with the state. They have a month to respond to the appeal. I think it’s pretty good, but I thought the one for the stander and walker was awesome and they still denied those (until I called the newspaper, that is). Now they’re trying to cut respite in half. They had 2 meetings on Maria’s birthday. I was going to go, but didn’t have the energy. Good thing, sounds like it was completely packed and very emotional. Not sure I could’ve taken it… Ahhhh Arizona, I really like living here, but the politicians do so many stupid, thoughtless things.

Let me caveat this blog entry by saying I’m in a big funk because my pelvic pain issue has been raging the past few days and I’m frustrated about it….

As Andy mentioned, Maria started summer school this week. There was no orientation, no meet-the-teacher, no real info handed out besides school address, times, and bus pick-up times. Manolis and I went to the school Tuesday to meet the teacher and see the classroom. He’s nice enough, but not a good communicator. We met lots of people, but since they’re all new to me, I was having trouble placing them or remembering any names. I asked to see the classroom; there were about 4 women in there, nobody introduced themselves or told us what they did–so do they all work with Maria or do they concentrate on a couple kids? Who knows? There are no tables or chairs. I was trying to figure out what Maria does, where does she sit, etc. Had to play 20 questions to get anything. She has no walker or stander, but they did say the PT was bringing her walker over. I told them how important it is that she stands, walks, etc. to strengthen her legs in prep for surgery. She’s on the floor some and on bolsters some, but that’s not 3 hrs worth. Is she in her wheelchair? Who knows. Although she’s only in school 3 hrs/day x 4 days/week, plus about 90 min on the bus each day, she’s hardly eating or drinking anything. Why? Are they not trying hard enough? Are they being too tentative? Are they even trying at all? What the hell?! As you can tell, I’m getting pretty worked up about it, but it might be my crap flaring up, not about the school. Manolis thought it was ok, so I have to trust his judgement.

We did see Maria’s home OT who she had from 0-3 yrs old! Haven’t seen her in 4 yrs. I know this because I made her a photo book and still had it, so I sent it in for her. (she’s not with Maria, but she’s at the school). I met her vision teacher-who I really liked! Don’t recall her name. She’s sharp! I saw her hearing teacher, we like her. She does sign language for/with Maria and Maria really responds; so much so that her para (aide) who we love so much was going to take sign language in summer school, but she got called in to work at the last minute and had to miss the sign language class. Bummer! That was also a good thing, that we saw Elisa. Again, she’s not in Maria’s classroom, but she’s there and they know she knows Maria, so I told them to be sure to ask her anything if there’s questions. It’s been 3 days and I still feel traumatized–I need to know what to expect and they’re not giving it to me. I know all I need to do is ask. and ask. and call and ask. Add it to the list…

Appt with neurologist today at the CRS (Children’s Rehabilitative Service) clinic today. He said her electroretinogram and visual evoked response tests came out normal–which is pretty great considering Maria has cortical visual impairment, etc. All her tests have been “normal” (considering …), which is good, but we still don’t know what’s causing the further optic nerve atrophy. Still no callback from the neurosurgeon –it’s been a good 2 months now. We have an appt with him July 8. I don’t even know what to say to him if he can’t even bother to return my call regarding my daughter’s atrophying optic nerve. Really?! And I need to call her eye doc and see what his next move is.

We met with the neuro-developmental pediatrician last week. Hadn’t seen her in over a year. She said we should take the Amantadine for 4-6 weeks, then go off it for a week. It’s more effective that way. That’s the med that is supposed to improve hearing and cognition; the one that seemed to give her a boost of energy. She also said metabolic testing isn’t necessary for the optic nerve atrophy. Good to know. Couldn’t be of more help on that topic, besides giving me an article that was rather depressing, so I just barely skimmed it (talked about all the other issues kids with optic nerve atrophy often have, like brain damage, cognitive difficulties, etc etc) I dont’ really need to read that. The doc thinks we need to get Maria an adaptive potty seat. First I have to complete the appeal for the bath seat, which I haven’t had a chance to finish because I’ve had so much other crap to do and it’s due very soon. She also recommended a gadget that would hold Maria’s arm in position to help her eat. She said I should take Maria to my PT and see if he has good ideas on gadgets/equipment that she needs. I like seeing her to check out what some of the other docs are saying. I told her about our disappointing appt with the nutritionists, and she said she’d heard similar negative stories. They were mean, condescending, rude, etc.–even Manolis noticed!

Latest thing I heard is that the state, in all their wisdom, wants to cut the respite hours by 50%, so instead of 15 hrs/wk, it’d be 30 hrs/month. Respite is a lifeline to those single parents, and even 2-parent households. When Andy comes on Sundays during the schoolyear, it’s great because I know that Sunday is my day to do what I need for myself. So anyway, I’m going to the meeting on Maria’s birthday.

Tomorrow night we’re going to some 45-minute presentation on some new company that’s like Costco and in return, we get 2 free vouchers for a 7-day cruise on Carnival, leaving from any major port in the US. We’ve been wanting to take a Caribbean cruise, but haven’t been able to figure out how to afford it. This might be just the ticket!!

The rear tires on the van were bald–we’ve had the van for less than 3,000 miles. So the $500 for tires and $300 for alignment was taken care of by the van place (Ability Center) because the van is still under warranty. thank goodness!

We just got back from Maria’s first soccer game. She even scored two goals!

Cathy heard that the Arizona Sports Complex has indoor soccer games for special needs kids every Sunday. We were both a little skeptical – there’s disabled, and then there’s Maria. But it was a great experience!

It’s a typical Special Olympics type game where nobody keeps score and each kid participates as much as possible or desired. One kid shows up every week just to lay on the ground with his bare feet. Another kid wanders around with noise canceling headphones and is in his own world. Parents can participate or just sit back and take a break.

At first we took Maria off to the side and I stood her up so she could kick a ball. By coincidence they gave us this bright copper-colored ball which was great because Maria could see it. She was really good at kicking it! She’d kick it a couple of feet, then one of the other kids would kick it back. Later I held her up so she could walk to the ball, kick it, walk to it, kick it and so on.

The goalie let her score one goal but by this time I was tired so I let one of the staff take over. We put Maria in the wheelchair and the woman ran the wheelchair up and down the field with the crowd. They realized the ball fit under the wheelchair so she used that trick steal the ball and sneak in another goal.

They said some kids come in their walkers, so we might try that. They also said we could bring in Maria’s bike and let her ride around inside where it’s cool. Either way, she’s definitely going back.

Maria starts summer school tomorrow. We aren’t looking forward to it. Her normal school doesn’t have a summer program so she has to go to a different one, and they are pretty much the type of school parents of disabled kids complain about. Cathy has tried to educate them on Maria’s need, but they have been condescending, combative and rude. The woman she spoke with was defensive, saying they have experienced with special needs kids. Again there is disabled, and then there is Maria.

As an example, when Cathy said she was going to send in a snack and milk for Maria the woman she was speaking to said snottily that the school provided snacks and drinks for the kids. What kind of snacks? Popcorn or pretzels. OK, should we call 911 now or later? And to drink, she’d get unthickened water, another sure trip to the ER. So within two minutes they told Cathy two ways they were going to send Maria to the hospital. We are not confident.

The teacher agreed to meet with Cathy Tuesday after school, and we are hoping they don’t manage to kill Maria over the next two days.