I can't believe it's been so long!

I haven't written at all since January 21. Time has just kind of morphed into a continual stream of busy and I just haven't really been into accomplishing anything lately. My theory is that the whole program Elise just finished was so tiring that now that it's over, I'm just spent. I'm starting to regain energy now, slowly. Work has also been insane. My boss left in mid-Jan and I've really just had more responsibilities since she left. Funny story, my counterpart at work wasn't sure how to prioritize all the things we need to do. He went to ask our new boss. The new boss called me in for a meeting about how to prioritize the work. Since you can't see me, imagine me rolling my eyes dramatically right now. Anyway, the resolution to this meeting really was that everything needs to get done yesterday. No advice, no offers of help, no compromise. It was suggested that we could work on the weekends. I informed him that working so much overtime would soon lead to me earning a negative paycheck with the cost of babysitters - hint hint, if it's cost prohibitive to work, I'm gone. Clueless. They don't care, it's a sweat shop. The funny thing is that they can't manage to do the work without workers and they can't seem to manage to find anyone else stupid enough to take the job - even in this economy. My "counterpart" is actually a contractor because they've been trying to fill his position since July. What a joke. Oh well, it keeps me out of the house and from dwelling too much on our problems with Elise. I work hard and I get done what I can get done in 40-45 hours a week. I refuse to stress beyond that.

Enough about me, this is about Elise. So much has happened in the two weeks since I last wrote. She had a week with not much happening. She was able to relax at home and go out to play with her babysitter. She had some ABA supervisors stop by the house and spend a couple of hours here and there probing a program to use for her therapy. On Tuesday this week, she began her in-home ABA. She is receiving between 25-30 hours per week of this. The schedule is all over the place, not very consistent at all. Sometimes she has 4 hours straight, other days it's a couple of hours, a long break and then two more sessions. It's confusing and really difficult for us to get organized. Hopefully this is because she's a new client and they are trying to fit her in where they could. It would be nice to have a more consistent schedule in the coming months. We're grateful that she is receiving so much help. So far, we're impressed with the agency. She has had 4-5 different individuals working with her. She fusses less for some than for others. Overall, she's doing great. She's attempting to use words with them and is really performing for the exercises they are presenting. I'm so excited that she is attempting so many words. They are all prompted still, but I know there is spontaneous speech somewhere inside that little girl. It's going to explode out of her one of these days. One of the individuals working with her is a man. Our sitter was worried that Elise would be apprehensive with a man. I suspected that she would be thrilled. Sure enough, whenever he comes over, she jumps up and down with excitement. She's such a flirt. She always has preferred men to women. I hope that this fact will motivate her even further to perform & learn with him.

I attempted to get Elise started in speech this month, but with her sporadic schedule, we were unable to find anything that would work. Next month, I plan on setting a specific time for her speech and having the ABA schedule around that hour or two. I really think that speech is very important for her right now, as is so many hours of ABA.

A had a playdate with two brothers that used to be in his preschool class. They are now in kindergarten and A seems to somewhat miss them. They came over to our house with their mother. Elise spent a decent amount of time with the adults in the living room, but she often went into the playroom with the other kids and parked herself in the midst of their play. She was interested in what they were doing and was somewhat interested in being in the same area as them. She's of course not ready to engage in playing with them, but she's showing progress. A few weeks ago, she would have just gone off on her own and possibly become overwhelmed with all the noise. Last week we took her to the park for a playdate the boys had with some of A's friends from school. One of the boys has a younger brother that is in B's class. He is only 2 1/2 and has been diagnosed as autistic. I can see it because of everything I've learned, but it's not all that obvious. Anyway, he and Elise sat together in the sand with the sand toys for probably 20 minutes engaging in parallel play. They showed awareness of each other. Elise later played parallel with another little girl there. That little girl was typically developing and tried to engage more with Elise. In the past, this would have caused Elise to wander away or, worse yet, Elise would have not even noticed. This time, Elise stayed put & I don't know how to explain it, but she was not unaware of the girl. It's an improvement.

Well, so much has happened in such a short span of time that I don't know what to write. We're busy AGAIN trying to figure out the logistics of how to make our lives work. Hubby is looking for a job in this area. He had an offer in Albuquerque, but he chose not to accept it. A big reason really was because of the services we have lined up for Elise. We've worked so hard to get everything set up for her, that we feel we would be foolish to just walk away now when we are finally ready to reap the benefits of all that work. I can't even imagine trying to line up a good medical team & therapists that are all on the same page as us all over again. Our home buying is on hold until hubby finds a job. Our rental home is literally falling apart, so we're now seriously considering moving to another rental that is cheaper. Then, we can save more money for our own home and it buys us time to get our life in order regarding jobs & schools. On the short term, our current logistical nightmare is managing the drop off & pick up of the boys from school. The sitter has to be home with Elise during her therapy, so she usually isn't able to drive the boys. On top of that, A stays at school longer than B. I had to start B going to school 5 mornings a week instead of 3. He really was happy with 3, but now that Elise is having therapy at home, he would no longer be able to go anywhere to play on the 2 days he doesn't have school. I feel bad for him, mostly for his napping situation. Since Elise's therapy is in their shared room and she no longer naps, her sessions are often scheduled during his nap time. On those days, he has to nap in A's bedroom. It's hard for him to fall asleep because the rooms are very close and Elise's therapy sessions are loud. It's hard on both boys. They're jealous of their sister and just a bit disturbed by the new situation. It's still easier logistically than the university program she just finished, so at least we have that. Once hubby finds a new job, I plan on changing to part-time work, preferably 8-2 M-F. I could possibly finagle this from my current work until they found a replacement. Time will tell. Either way, full-time work for me is not going to be practical for much longer. The logisitics don't work. For example, next September, the 3 kids will all be in different schools with different schedules. Explain to me how pick ups and drop offs will happen if I'm working full-time. I'm getting ahead of myself again.

So, we have yet to receive our letter from the school district with the school that is being offered for Elise. We were told that we'd probably receive a letter after about 2 weeks. It's now been 16 days since our IEP and no letter. I've come to the conclusion that the smirking of the lady at the IEP was all about putting off having to educate Elise until September. A couple of times she mentioned how if we didn't like the school, we could always wait until September and see what was available for her. Wierd. I think that she knows she went the complete opposite of what was recommended for Elise and what we wanted for Elise. Maybe politically she has to offer this non-public school option to a certain number of people, like a quota. I don't know, this is the only thing that makes sense to me. She offers this expensive option to us knowing without a doubt that we won't accept it. Then, she's done her job of offering it, and she's put off having to provide any services for Elise for months. It makes sense in a cruel way. That's my theory for now, but I honestly am not wasting too much time thinking about it. I mean, it's out of my control until we receive this damn letter. Let's just say that I'll be surprised if we receive it next week. I'm expecting it the week after next. That maximizes the amount of time not educating Elise, but not long enough to allow for accusations of purposely prolonging educating her. If we get the letter early next week, I guess my assumptions of this game were wrong. I spoke over the phone with the advocate and she was surprised that we were offered such an expensive option when what we want is such a cheap option. She told me that if we're not offered the PSM with an aide, then we should not sign our IEP. Since we most likely will not be offered this option, then I guess we'll have to move onto mediation. What a collosal waste of time, time better spent helping Elise in my opinion. There must be so many children that just fall through the cracks. It's just sad.

On that upbeat note, I'm going to retire to bed. In spite of the down tone of this message, I'm actually feeling very positive about things. I think that we're on a really difficult path right now, but we're moving in the right direction to better times ahead.