Happy Birthday, Raquel!

It's hard to believe that my baby turned 4 years old today. It seems like only yesterday we were taking these pictures:







And then these:





And then the ones taken during all of the tests.

Coming out of anesthesia during the MRI...

... turning into my little Smurf for the 24-hour EEG...

... and becoming a pincushion during her allergy screen.

And now, here we are, four years later - just like that. It's amazing to think of where the time has gone. But at least the majority of tests are done, and I can display happier pictures, like their most recent school photos.

This is Raquel's very first school picture taken a couple months ago during preschool. We had no idea it was picture day, which is why her hair is such a mess, but I think the toussled look goes well with the pink tie-dye shirt!

And here's Gabby's 2nd Grade picture. She is getting way too big these days and is turning into such a little girl so fast that it catches me off guard sometimes. She continues to be the best big sister ever, oozing with patience and love for Raquel. She is also becoming more and more protective of her sister.

Raquel was a happy girl when I picked her up from school today. The assistant said she's doing good, but not off to as great of a start as the previous week ended. Oh well, everyone has their moments. Mike came home at lunch so we could celebrate her birthday then, since he'll be working late tonight. We opened a couple of gifts, played games, and decided to save the cake for after dinner. Gabby is looking forward to helping her blow out her candles.

Happy Birthday, Raquel! I love you! Keep making Mommy proud. :-)

Annual IEP Complete

Yesterday afternoon, we had Raquel's yearly IEP with the school district, current therapists, and current teacher. It went okay. Amanda, the district psychologist and Eva, Raquel's teacher, are clearly trying to make this work, and I really appreciate that. But sometimes I feel they are the only ones that even hear a word I say. All of them continue to rush to judgement, assume they know Raquel better than her own parents, and look at me like I'm crazy when I contradict anything they say.

Yesterday I brought both Raquel's PECS book and therapy notes with me because Eva wanted to look through them. At one point during the IEP, Eva was reviewing her therapy notes that were taken. She stopped, got a bit choked up and said, "I can only imagine how hard this must be for you to sit here and listen to all of this when you know what she is capable of doing." I thanked her for acknowledging that. The binder doesn't lie, even though the school district gives it no merit. It's like I've made the notes up or something.

Again, I heard the APE therapist say she can't throw, can't do this, can't do that. She doesn't particularly believe me when I say otherwise and said, at one point, that I must be "confused" about what I was seeing. I guess playing catch with her and Gabby is all just part of my imagination. And yelling at them for jumping on the bed isn't happening either. Regardless, I do like Rachel, the APE therapist, and think it's great that even though most of the kids are only required 30 minutes of therapy once per week, she sees them twice per week because she's on campus two days overlapping the kids.

Speech therapy is becoming more of a challenge and I am apparently going to have to pay for sessions on my own. The new district therapist has such a strong accent, I can't even understand her. I was speechless listening to her explain Raquel's goals for 2010.

Last year I signed the IEP thinking it was a requirement. This year I chose not to sign all categories because I am not in agreement with the district's assessment. I did signed for the IEP goals, but wrote in my notes that it was only based on district observations and not her true ability.

Mike attended the IEP with me this time and I talked to him about it this morning. I was really proud of how he handled it. At one point, when I was clearly aggitated about a district person doubting what I was saying (because she hasn't seen or heard it with her eyes), Mike spoke up and reminded them that we have a really fantastic pediatric neurologist that 100% disagrees with Raquel's prior IEP, that she's had all of these tests done under his care, and that he feels this is a treatable, seizure related, neurological condition that has no impact on her IQ. I was really glad he was there. Don't get me wrong, I can definitely hold my own, but after a couple hours of going back and forth, it gets pretty old. And it was nice to have a hand to hold when things were hard to hear, even though I didn't agree with what they were saying.

I think a lot of the difficulty in class is simply Raquel adjusting to this type of school setting. It is much more structured than last year, the kids in her class are loud, and she's required to attend to tasks the class is participating in. And Raqi likes to do things when she feels like it.

But on the positive side, Eva and Amanda really stepped up to the plate, put together a Behavior Support Plan over the holiday break, and it was nice to finally get that implemented. If we are consistent both at school and at home, things will definitely improve.

The even more positive side is that Raquel had a really great week! When I picked her up today, the aide told me that she had another fantastic day - no behaviors, no problems - nothing. What great news!

I'm very relieved the IEP is over with. I'm very pleased the Behavior Support Plan is finally in place. And I am very happy with how she did in school this week - especially coming off of a long holiday break.

Next Tuesday, my little angel turns 4. Can't believe it! Then Thursday I meet with the Regional Center and will find out about how/if/when I can resume in-home behavior therapy. Then the following Tuesday, we have our next follow-up appointment with Raqi's neurologist. Looks like 2010 is off to a busy start!

Welcoming 2010

When I look back at all I experienced in 2009, it's no wonder it felt so exhausting. It was. And I hadn't really thought about it all until yesterday afternoon when a very familiar face came for a visit - Janine, Raquel's former ABA supervisor. Although we've kept in touch since Raquel's last session on her third birthday, this was the first time we've seen each other since her in-home therapy ended.

Raquel was eating when she arrived, and I was very curious to see how she'd react to her being back in the house. Remember, when the ABA therapy first started, Janine was intentionally the "bad guy" and Raquel used to start crying as soon as she walked in the door. Raquel stopped eating when she came inside, and wanted out of her high chair. As soon as I put her down, Janine said, "Hey little buddy!" and Raquel looked at me and started crying. She clearly remembered Janine and associated her with "working" - almost a year later. Once we explained that she didn't have to work, she calmed right down and became very affectionate with her, giving her lots of hugs and kisses.

And both girls really enjoyed playing with Janine's dog, Escrow, who made himself right at home!

Janine couldn't believe how big Raquel has gotten - and what a head of hair she has! She was also very happy to see how I continue to hold my ground and fight the system that couldn't possibly make things any more difficult. She was also pleased to see how I am still able to stay consistent with Raquel and detach myself emotionally when I know she is just trying to get my attention, which happened yesterday when Janine and I were talking. She started a mini-tantrum that neither of us acknowledged, even though Raqi tried repeatedly to interrupt us. When I told her to knock it off, that we were talking, she eventually stopped and started playing with Escrow. But sitting on the floor with Janine listening to Raquel carry on certainly brought back a lot of memories.

Since I deal with Raquel 24/7, I don't always see the changes or how far we've come until it's pointed out to me. And yesterday I was reminded of it. I remembered at the start of ABA, how I couldn't even be in the room during therapy because I was so distracting to her. I remembered how the session sometimes only lasted ten minutes out of the two hours they were there because she was tantruming the rest of the time. I remembered the beanbag, the squashes, the tent, playing the song - over and over again, fighting to keep her sitting at the table, etc., etc. And I remembered all the tears I shed watching her struggle in the sessions and just praying for it to end. I thought about all of this quite a bit after she left.

I know there is still work to do and that we have a tough road ahead of us. I'll never deny that. But yesterday, thanks to Janine's visit, I was able to put things in perspective a bit. Although I will continue to fight the system in 2010, at least she is in a class with walking and talking kids, with a teacher willing to do whatever it takes to make this work. For that, I am truly grateful. I still question whether or not this is the best placement for her, but at least it is a good starting point. I know she is getting therapy, I know they are working on academics with her, and we have a meeting this Thursday to implement a Behavior Support Plan. And, because of the LKS diagnosis, Raquel may qualify for in-home therapy again, which would be wonderful.

As for me, I have promised myself that 2010 is going to be the year that I start doing things for me again. Me time is no longer going to be optional - it is now a requirement. And I've already registered for my kickboxing camp (http://www.turbokick.com/) this summer, thanks to a very supportive husband.

Janine and I talked about Raquel's "song" yesterday and how every time she hears it she immediately thinks of Raqi. Here's how Jason did it on Sesame Street the other day. Raquel loves when Elmo comes in (when Toca would!) and she just laughs and laughs and laughs.



Happy New Year everyone! Go Outdoors! :-)