Tomorrow is Elise's last day at UCLA. It's bittersweet for us. We're completely sick of trying to balance work, caring for the kids & trekking all the way to UCLA two times everyday, including managing to make meetings there. However, Elise has done so well there, the people have been so helpful and supportive, and we don't know what's on the other side of the fence. Overall, it's been a really positive experience, but an incredibly difficult experience. Leaving the program is a very emotional thing for us.
Yesterday, we finally had Elise's IEP meeting with the school district. This is where a plan is agreed upon as to how to educate Elise for the next year. It was far worse than I could ever have imagined. We had decided that we wanted minimal preschool for Elise. This was in line with UCLA's recommendation. We strongly feel that she needs intensive ABA in this upcoming year and a bit of preschool. We niavely thought this would be no problem for the schools because we were requesting less than what they would likely offer. Well, that is not the case. We had to recess the meeting because their offer was for a non-public preschool for Elise about 30 hours per week. That is completely opposite of what we want for Elise and completely opposite of what everyone who has worked closely with her recommends. I don't get what their agenda is. Why would they want to offer such an expensive option to people who don't want it? I hate operating in a contentious situation when I totally don't understand the other side's agenda. The non-public preschool option is the most restrictive environment available. The goal should be to put her in the least restrictive environment possible. See, I am just baffled. I know that I'm part of some agenda or game, but I have no idea what that is. This is totally unneeded stress right now. I will say this, I will FIGHT to get her in the right environment. The only problem I have with this resolve is that fighting will require an advocate, which costs us money we really can't afford right now and I hate to drop money into something when we may be moving to another school district within the next few months anyway because of hubby's job situation. Thinking about this just makes me want to cry so badly. I just don't understand how others can find her so severely disabled. I just don't see her that way. I see that she is significantly impaired right now, but it's never truly occurred to me that she won't begin a rapid improvement. It's already started. I rarely am able to imagine her not being able to function in the "typical" world independently and adequately in the future. Am I in severe denial or are these other people just bizarre? I hate that I'm even questioning this.
When I think back on some of the comments that were made in the meeting and the odd look on the school district's representative's face, I am really just pissed. When the option was noted, the representative had an odd smirk on her face. It was not obvious, it was masked, but I'm really perceptive at picking up on those things. It made it hard for me to concentrate on the words that were being said. The school psychologist comes across as less devious, but she's complicent also. I do remember her laying on this guilt trip that don't we want what's best for our child. Our child needs a social environment, not to just be in a home based individual program for ABA. It annoyed me that someone was so openly trying to manipulate my emotions like that, but at least she was more obvious than the smirking one. I knew I didn't agree with the statement she was making, but when I thought about it later, the suggestion that Elise should go to this 6 hour per day most restrictive preschool because she needed a social environment was laughable. What kind of social environment is it for her if she's solely isolated with other severely disabled children? Perhaps there would be children that are more socially developed than her, but she's really only interested in children that are typically developing. I highly doubt that she would be drawn out of her own play world to enter into a social play world with other disabled children. I also think that she's acutely aware of her differences and it is playing on her confidence right now. To put her in that kind of isolated environment would really harm her confidence.
Another comment that annoyed me was when the smirking one "thanked" us for giving up our spot in the I-CAP program that they had. It really wasn't that hard to give up because it didn't seem quite right for Elise to me. Anyway, she told us how wonderful we were to have done that because it allowed another severely autistic boy whose parents weren't "people with means" (implying that they weren't like us) to obtain help. Um, just because we have more means than other people doesn't mean that the special education laws apply differently to us. We can go broke trying to educate her properly the same way that others already are broke before they start. Just because we have minimal insurance coverage & have been able to dig really deep to help her, doesn't mean that she is less deserving of public help. We've made a lot of sacrifices to get her the appropriate help. We make good incomes, but we are not in a good financial situation. We can't even buy our own home which is ridiculous given our income. I know we are fortunate to have what we have, but we are struggling a lot to have all this.
Well, that's my rant for now. I can't say that writing it out has helped me feel any better. We've been told by others more experienced in this IEP process that we will need to visit this school before we can object to it. Then, we should be prepared to hire an advocate & enter mediation with the school district. Of course, Elise will be getting no services while all of this is ongoing. Maybe this is the goal? Frustrate us so that we decide not to push for what she is entitled?
I spent the evening filling out forms for Elise's exit from UCLA. I'm form weary and would be happy if I never had to complete one about Elise ever again. Hubby met with the care coordinator today. Elise was assessed today and showed significant progress in the results. On one test, she tested at 38 months, so age typical. The others ranged from 19mths-30mths I think. In contrast, when she was assessed at the beginning of the program, one factor tested at 7 mths (that's the 19mth one now). That's quite a leap in 3 months time. She's an amazing little girl who has benefited from an amazing team of people to work with her.
I am currently looking for a speech therapist for Elise. Since this is going on with the school district, she will be receiving zero speech services. I see this as a really critical time for her to continue speech as it's really starting to emerge. Her UCLA speech therapist sent some referrals to me today after I spoke with her. One of the referrals is her school. I would love that but I don't know if we can afford her. Another referral was to the group that first evaluated Elise's speech when she was 26 months. It was the group that first suggested autism to us. We rejected that at the time, but as you know, we were wrong. Now they seem really bright to us. That would probably be my second choice.
I scheduled her EEG for the end of February. That should be a horrendous experience. We're not looking forward to that. I spoke with her psychiatrist and we've reduced her medication. She's much less irritable again. We have a follow-up appointment with her in March. We'll meet at her UCLA office which is nice because we can say hi to all the wonderful UCLA people that have helped us so much over the last 3 months.
Well, enough writing for now. I'll give all of our eyes a rest and go to bed. It promises to be an emotional day tomorrow.
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