"Mom. She Talks To Us. Isn't That All That Really Matters?"

I am very happy to report that two of our annual meetings are behind us for another year.

First, last Wednesday we had our annual IPP (Individual Program Plan) with my Regional Center rep, Heather. This is where we basically discuss where she's at developmentally and behaviorally, how school is going, changes in services & medications, health issues, etc. I actually look forward to this one. Heather is a huge support, and jumps through hoops to make sure I continue getting the services I'm entitled to while dealing with forever changing budget cuts. Not an easy task. The main change in services that goes into effect next month is a decrease in my respite hours. Instead of 16 hours per month, I now only have 10 hours. Bummer. But what can you do? Nothing but be thankful that I still have 10 hours.

Since I'm the one taking care of Raquel on a daily basis, it's sometimes hard for me to notice the gradual changes. But once I sat down with Heather and we started comparing last year at this time to the present, it seemed like night and day at times. Last year we had a behavior plan in place, the goal was to keep tantrums and self-injurious behaviors to a minimum of 3-4 per week. This year, we don't have any behavior goals because she doesn't have the outbursts - unless caused by her seizures or being sick. And there is nothing self-injurious at all. Those days are long gone. I remember being told way back by my ABA Team that there would be a light at the end of the tunnel in this respect. Now we are actually out of the tunnel and living in the light.

One thing we did discuss was my ongoing concern regarding safety issues. I'm not any more comfortable in this area now than I was a year ago. Because of this, Heather has recommended in-home behavior therapy again, to help me learn how to teach Raquel these things. Since Raqi has been around so many people due to all of her therapies, hospital visits, respite workers, etc., she really doesn't know what a "stranger" is. In this day and age, it is very important that she learns this. She has never just walked up to someone but I feel she would be trusting of too many people should a certain situation arise. We will also be working on street safety in regards to cars, animals, etc. This won't be happening anytime soon - we're at least 2-3 months out - but I'll take it. And it looks like our last behavior therapist, Mike, will be assigned to us. Yay! I really like him, and he was able to talk to my Mike guy-to-guy, which was a good thing. I'll just need to remember to add him in my phone with his full last name. I've answered my cell phone, "Hey Babe!" a few times, and sent text messages by mistake, once asking him to bring home dinner. He didn't. :)

The following Thursday, I had my annual IEP with the school district. This is the one meeting that I absolutely dread - where everyone basically doesn't believe me and thinks Raquel can't do any of the things I say (or previous therapists have said) that she can do. It's quite annoying. I've posted before about how I don't get along with a couple district reps, have had them replaced, etc. Sadly, the vast majority of times, the people sitting in front of me don't really feel Mother-Knows-Best. That bothers me so much, not because I buy into it - which I never will - but because I think about all the other families that DO. As a parent of a special one, all you have is hope, and I absolutely REFUSE to let anyone, no matter what their job title, take that away from me.

The IEP actually went pretty well. It was nice seeing the APE & OT therapists that I haven't seen since her kindergarten transition meeting over 6 months ago. The general education teacher was dismissed almost immediately because I didn't have any questions, and the behavior therapist attended but wasn't really needed because we no longer have a behavior support plan in place.

The one person I had the most questions for and looked forward to getting the most input from was Jane, her speech therapist. I have met Jane on several occasions when dropping Raquel off at school. She's extremely knowlegable and spoke to me in length about why not to pursue sign-language, the positive effects of PECS, etc. She's even taught to some degree at Gabby's school. Unfortunately, Jane had some kind of scheduling conflict and could only stay 30 minutes. She started the IEP without everyone in attendance, was obviously very rushed, and actually - after working with Raquel less than a handful of times in probably not the best conditions - started out by telling me, flat out, that she never thought Raquel would ever be able to verbally communicate. When I told her I completely disagreed, she said I was entitled to feeling that, but that was her professional opinion - and then just went on about starting up a PECS program. Got to say, I wasn't expecting that one. And I was pretty disappointed. Not disappointed because I couldn't take what she was saying. I just thought that it came from left field, considering she doesn't even know her. She doesn't know how stubborn Raquel is, and that if Raquel doesn't know someone, she tends to be a bit shy and takes awhile to open up. But maybe she doesn't have the ability to be "shy" in her professional opinion, either. The rest of the IEP was implementing new goals, discussing her in-home schooling, and signing paperwork. Nothing major at all.

That night, after I put Raquel down to bed, Gabby asked how the meeting went. She's gone with me to them before and knows the drill. If you say the word "IEP", she typically rolls her eyes. When I told her what Jane said about Raquel never talking, she got a little quiet and sat there for a minute thinking. Then she said, "Mom. She talks to us. Isn't that all that really matters?"

Yes, Gabby, it is. And thank you for reminding me of that.