An End To A Very Long Week

I don't know what it was about this week but it sure seemed long and Friday didn't come soon enough. I am so looking forward to what will hopefully be a restful weekend. Next week is Thanksgiving Break so there's no school. I'm actually looking forward to that, too.

Raquel ended the week on pretty much a good note. The teacher is still challenged by her "attitude", but is making progress. I found out today that the majority of her behaviors occur when she doesn't want to participate in what the class is doing - or, primarily, wanting to stop before the activity is done. The teacher requires Raquel, as she should, to sit there until the activity ends, to stay attended to what the rest of the class is doing. And we're not dealing with a task being a long period of time. Raquel continues to want to do things when she wants, how she wants - PERIOD. I think the only way the teacher is going to get past that is to continue to hold her own.

Last year in the orthopedic class, Raqi could wander around and do what she wanted. If she through a fit, they would take her to the sensory room and she could play in the ball pit. Not the same thing going on here. Now it's about following rules and instructions.

Here's a couple (blurry) pictures of Raquel in her Thanksgiving hat they made at school today. She humored me and kept it on the entire way home. I loved looking at her in my rear view mirror when I had to stop at the red lights.

This week has brought back a bunch of ABA memories for me - when Raquel was seen every day for in-home therapy. Just today when I was picking her up, she started to get aggitated and I said, "Oh, knock it off Raquel. I'm talking to your teacher." She immediately stopped and went off to the other kids. Another parent that was picking up her child said she wished she could do that, but she's just a softy. I told her it was because of the ABA - they taught me how to learn when Raquel was just "working it", and to not reinforce that behavior. I am truly grateful for my ABA Team and I miss them very much.

I've posted a lot before about how music really helps soothe Raquel - especially Jason Mraz and what I call her song - "I'm Yours." Almost a year after the in-home therapy has ended, I still get calls, emails, text messages from her former therapists saying for the most part, "I just heard her song on the radio! How's she doing?"

I have been very fortunate to watch Raqi's song played live many times and not once have I ever not thought of her - or the ABA therapy - when the song starts. It's amazing to see so many people sing every word and having such a good time about a happy song about love. And it's funny because no one would ever know why it's so special to me - what it's gotten us through in therapy and in life. I don't think anyone would believe it unless they have actually seen her reaction to it.

Here's how Raquel's song was played a couple days ago in Brazil - on one of Brazil's biggest talk/variety shows called Faustao, with an average viewing audience of 40 million people!! Sure wish I was at this one. Brazil knows how to put it on! Great job you guys!

"I Fought The Teacher and I Won!"

At least she won today. Her teacher was out sick most of last week and today was her first day back after nearly catching pneumonia. Let's just say that Raquel didn't take it easy on her. When Eva (her teacher) handed her over to me and I asked her as I do every day how she did, she gave me a look, paused, then said, "Great - as long as she was doing something she wanted to do when she wanted to do it." At that point, Raquel cracked up laughing and I asked her what was so funny. Eva replied: "She's saying, Mom, I fought the teacher and I won!" I really hope Eva had a restful lunch before starting her afternoon class. The aide did tell me that most of the kids seemed a bit out of sorts today - probably because of the weekend off.

I know I haven't posted for awhile and that most of you are assuming (or hoping) that things have been moving right along. They're moving - don't get me wrong - but not really in the direction I had hoped. Raquel continues to be her stubborn self and the teachers/aides continue to struggle with what works and what doesn't.

As a parent, this is one of the hardest positions to be in. Dealing with daily therapy in addition to the weekly ones provided me with a lot of tools I can use to handle Raquel. And now that she's just a number in the district, we're back to square one. No one around her knows the signs of her getting aggitated, or how to effectively redirect her. Last Friday when I picked her up, she was carrying on in the parking lot with the substitute teacher, who was really happy to see me.

By no means am I implying that this is an isolated situation geared towards me personally. This is just how the transition works. You go from dealing with all of these wonderful therapists in your home on a daily (and/or weekly) basis, showing you how to manage challenging situations, and then once your child turns three, you are expected to put them on the bus both directions and hope for the best. It's scary to think of all the information I would not have been privy to if I would have done just that. My personal opinion: the transition needs to take place months before their 3rd birthday so everyone is aware of a child's individual needs, teacher's questions can be answered by those that have worked with her and actually know her best, and that everyone can work together to find the most appropriate class placement. Maybe one day it will work that way.

This is pretty much the last opportunity for my district - and they know this. If this class is the best they have to offer, and we continue to take two steps forward and one step back, I'll need to bite the bullet and start over in another district. I will say that because they know that I am at the end of my rope, they are bending over backwards to make this work. Last week, the principal personally worked with Raquel for about an hour one day, and then when Eva got ill, the principal had the district psychologist come and work with her in the classroom to help the substitutes deal with any behaviors that may have occurred.

Last Friday we were supposed to have an IEP and put together a Behavior Support Plan (BSP), but that was cancelled because the teacher was sick. I'm still waiting for the reschedule date, but am feeling pretty good about it right now. This new panel of people I am fortunately dealing with seem to understand my concerns, and, even seem a bit irritated by how things have been handled thus far. I think that once they get my input for the BSP, things will flow a bit better. I am also planning on having my regular respite worker, Christy, attend class a couple times a week after the Thanksgiving break to show them what works for her when she's taking care of Raquel. I would go in a heartbeat but everyone tells me I'd be too distracting and that she needs to associate school with mom not being there. I understand their point.

The good news is that Raquel really seems to like going to school. Every morning when I ask if she's ready to go, she runs to the back door with a big smile on her face. Once we get there, she stops and greets her previous class, and then walks with her new class to their room without the slightest hesitation. With the exception of last week, she seems perfectly content when I pick her up, grinning from ear to ear when she first spots me at the fence waiting for her. And I think going to school every day is a great thing for her. She needs to get out of the house and be around other kids.

At home, Raquel continues to be a difficult piece of work to figure out. Sometimes I think she's just messing with me. The other day, she said, "What are you doing?" as plain as day, so much that I automatically answered her question before realizing who it came from. When I said, "Are you talking to Mommy?", she smiled and went back to what she was doing. She really does have a mind of her own. I wonder where she gets that from. :-)

Hoping she'll have a better report card tomorrow, but am still feeling optimistic and am pleased that she has a teacher who is up for a challenge.

Liking School - For The Most Part

Last week, Raquel started her new class at Rock Springs. I was pretty much a basket case the night before - not able to sleep and I kept doubting my decision to put her back in school.

What's the big deal about her being in school a few hours a day? Well, I am very protective of my girl(s) and the fact that Raquel cannot tell me about her day and what happened means that I need to have a great deal of trust and confidence in the people surrounding her. That's a tough one for me because I know how difficult she can be and how the slightest things can trigger behaviors. And I also know how simple behaviors can escalate into self-injuring ones if she's not redirected right away.

Mike came with me on her first day for moral support. That's what he said, anyway, but I really think he wanted to go to make sure I actually took her. :-) As soon as we got her out of the car, the bus driver spotted saw her and yelled, "Hey! Raqi!!" and Raquel cracked a big grin and started to laugh. It was very apparent that she knew exactly where she was. She then went over to the orthopedic class, who were waiting for their teacher to come get them, and they all seemed very happy to see Raquel and Raquel definitely recognized them.

The first day, I waited by the phone expecting her new teacher to call me to come get her. She never called. In fact, she hasn't called me once since she started back in school. She told me that she has promised herself not to call me and to, instead, work through the behaviors. Of course, there is a transition period and Raquel is beyond stubborn and wants to do things her way and when she wants to do them. But, her teacher is equally as stubborn and doesn't give in. And I think that is a really good thing. Raquel needs to learn that things can't always be on her terms. That just isn't how life works.

Raquel has now resumed all therapy in a school setting - speech, occupational, and physical therapy (they call it applied physical education now). I have not heard back from Rady Children's about scheduling speech sessions through our private insurance company but think this is still the only way I can honestly sit in front of Raquel's neurologist in January and say that she's had therapy. The new district speech therapist is very new - right out of college, actually - and has no experience working with kids who have special needs.

But, the cup continues to be half full. Raquel is talking more and more, tantrums are less frequent, and she's turning into such a beautiful little girl. I love her more than words can say. I am truly blessed to be her Mom.

Here are a couple of pictures from Halloween:

Gabby & her friend not wanting to pose for my pictures....

... until I told them they couldn't go to the carnival until they did...

... Raquel and her Dad....

... And me and my girl.

Raquel can be such a handful at times, and drains enormous amounts of my energy on a daily basis, but I never lose track of the importance of what I am doing and fighting for. And I refuse to give up. My Mom didn't raise a quitter and I know that she is really proud of me right now. But I'm sure she's telling everyone in Heaven that it's because of her I'm like this. :-)