Never a Dull Moment

It's only been 9 days since my last post and I can't believe how much has happened in that time. I'll start at the beginning.

Last Friday, we finally received the letter from the school district with Elise's non-public school selections. They both are all day schools for autistic children that incorporate various therapies including behavioral, speech & occupational at least. The problem with this is that Elise is progressing so well with her at-home ABA. If she was in school for so many hours, not receiving that intense 1 to 1 instruction, she wouldn't have any time for her at-home ABA. Why would we stop something that we know is working really well for her to try something new? It seems that one would look for an alternative like this if the current situation wasn't working well, but that's not our situation. Hubby called our old care coordinator from the program that Elise just completed. She agreed that the schools were not appropriate for Elise and reiterated their recommendation of 6-10 hours per week of school with 30 hours per week of at-home ABA. I called one of the schools and scheduled a visit. I really feel it's a waste of time that I don't have, but I'm worried that if I don't make an effort to see these schools, it'll be more difficult to argue that they are not appropriate for Elise. Oh yes, there is the fact that both schools are 30-45 minute drives from our home, we both are working full-time and we'll have 3 children in 3 different schools soon. Figure out those logistics - it's not very possible.

On Monday, I took Elise for her bloodwork. She was really good about it. She fussed only a bit when she saw the needle coming towards her. I assured her that she'd only feel it for a second and she settled right away. Once the needle was in, I told her that the hard part was over. She watched the vials fill with a lot of interest. It was funny to me because the man drawing her blood didn't know she was delayed or autistic. He was telling her what to do, such as making a fist, as if she would understand everything. It was strangely satisfying to see that she is capable of fooling people still into not realizing there is any issue. I just put out my hand and said "Elise, do this" while making a fist. She imitated with no problem. When it was time to leave, the man told her bye bye. I said, "Say bye bye" and she waved and said bye. I was really proud of her.

On Tuesday, our parent trainer for her ABA therapy called around 10 am to schedule a meeting with Carlos & I for 4:30 that evening. She seemed surprised that it wasn't going to work out well for both of us to drop everything on that short of a notice and make this unplanned meeting. Hello, we both have full-time jobs! I told her that I could meet at 5, but that Carlos was working far away and couldn't make it. She asked when he would be home and I told her after the kids were in bed that night. Again, she seemed surprised about this. Anyway, I returned home for this meeting as she was pulling up in her car. Miraculously, I was able to put on a DVD for the boys and they sat quietly for an hour watching it. I was seriously wondering how we would manage to talk with 3 kids who hadn't had dinner yet running around unsupervised. She has no idea how fortunate it was that they actually watched a movie. Elise stayed with us and was busy showing off jumping on the couch the whole time. That was actually really annoying because we let the kids do that. The parent trainer obviously doesn't approve of this and was correcting her. Not surprisingly, Elise was not having the correction, not because she's autistic, but because it's inconsistent. She's usually allowed to jump on the couch. Again, whatever...The meeting seriously started with a reprimand about us not getting all the things she'd requested. She'd sent an e-mail Friday afternoon and was at reprimand stage by Tuesday evening that we didn't have the multitude of requests fulfilled. Get real. It was particularly annoying because I'd actually inconveniently dragged all three kids out on Sunday evening to make some of the purchases, to no avail. I'd given up and ordered on-line. One of the items was reward toys for Elise. For real, I can go out with my 3 kids and buy toys and then tell the boys that they can't touch them and tell Elise that only her teachers can give them to her. That doesn't work. I was waiting for a time when I could get out alone to do this. Can you all tell that I was incredibly irritated by this meeting? She is so totally clueless about how our lives actually are right now. I want to do everything I can to help Elise, but there are only so many hours in a day and they run out quickly. I made the offhand comment that I would purchase the PECS book she'd requested as soon as I could make it to the office supply store during my lunchtime at work and that I thought I might be able to take a lunch the next day. Again , she had this strange look on her face. I wasn't trying to play the martyr, my work really is that intense. I'm lucky to have 1 day a week that I can actually manage to leave my desk for even a 20 minute stretch of time during the day. This job is really intense. Her attitude is somewhat like the straw that is breaking my back - all the pressure is just ready to explode. I'm doing the best job that I can do, I can say that with absolute certainty. To be able to say that and still be falling short of expectations is frustrating. The problem is that no one's expectations individually are that difficult to meet, there are just too MANY people with expectations to be able to meet them all.

So, that was Tuesday. Wednesday was busy with trying to pull everything together for our hospital visit the following morning. I had to do a run to Target after putting the kids to bed, complete our pre-registration and pay the deductible & speak with the nurse about Elise's admittance instructions. After the kids went to bed, I went to Target to buy interesting toys, activities and books for Elise's hospital stay, buy more food for the house & invitations for A's birthday party. Then, a trip to the bank to take out cash for the boy's & their babysitter's activities & food. Lastly, I filled up the car with gas so that we could go in the morning. When I arrived home, I wrote out the invitations so that A could pass them out to his class the next day. I also spoke with Genetics about Elise's test results. The results were in and were normal. They have now requistioned a Fragile X test for her. That's a scary one, but I believe it's very unlikely that this is what she has. For one big reason, neither of my boys seem to have it and it's caused by a defect on the X chromosome. For Elise to have it, I think both of her X chromosomes would have to have the defect, possible, but that would mean both hubby & I have this genetically & the boys were extra fortunate that I didn't pass it on to them with the X I gave to them. On top of that, she doesn't have any obvious outside markers of Fragile X and she does not appear to have any element of retardation. That said, it's best to just get the test done, hopefully get the results that she doesn't have it and move on.

Thursday morning arrived and it was the "big" day. The morning was really hectic because I hadn't packed yet and Elise woke very early. I was kind of counting on having some time "kid-free" in the morning to get things done, but it wasn't going to happen. Somehow we mostly pulled it together & were nearly ready to leave for the hospital when the phone rang. The hospital called to cancel the test because there were a lot of sick kids and no available beds for Elise. The paperwork had mentioned that this was a possibility, but we hadn't expected it to actually happen. It kind of worked out well in the end because we were able to speak with someone about Elise's sedation and arrange for her not to be sedated on her re-scheduled date. The sedation was only to assist in placing the electrodes on her head. The process takes 45 minutes & is often difficult for 3 year olds, especially those with autism. Elise is actually often good with these sorts of things and worst case, we can wrap her tight in a blanket and hold her down for that long. It's better than all the fasting in prep for the sedation! Hubby was able to make it to a big review at his work and I went into work also. I was able to get all of Elise's cancelled ABA sessions rescheduled, so no problems there. She is now rescheduled for Monday & Tuesday. These are worse days for my work, but hey, whatever. My company's CFO was questioning that my two days off should be vacation days since I knew in advance. Mind you, I haven't started accruing vacation yet, so this would actually be no-pay days. What an a$$hole! I calmly informed my manager, the messenger, that if I were to schedule a medical procedure in advance, it would unquestionably be sick leave. As Elise is my dependent child, the same applies to her. There is no legal leg to stand on for him in saying that is not sick leave. I had to go through this crap with my last employer when I was pregnant with the twins. Now, I have to waste my time reading through the company sick policy and federal & state laws again to make sure I'm correct in this understanding. There is such compassion in this business world (extreme sarcasm). The ironic part is that I'm fairly certain the CFO suffers from OCD type symptoms, for real. You would think someone who struggles with a mental illness would be less dismissive of a child with a condition covered under mental health. This would be a non-issue if she had a "medical" illness. It's because it's a "mental health" condition that people act like you're over-reacting by having all these tests done, etc... I'm not just going to give up on her and decide that "Oh, it's autism, she'll never get any better and there's nothing that can be done." This is not true and children sometimes do recover. I will do everything in my power to provide Elise with this chance, whether it ever comes to fruition or not, it won't be from a lack of effort.

On Thursday while I was at work, the director of the institute where I would like Elise to go to school called me. Her program is a full-inclusion program. There are 18 children per class, 3 of whom have IEP's (individualized education plans). For those 3 children, there is a special education teacher. There is also a behavioral aide for those children & a staff speech therapist. If the IEP calls for occupational therapy, an outside person is brought into the school. This is also a non-public school option. I'm very interested in this option for Elise because it would enable her and B to attend the same class again, I think being immersed with typically developing children (with special education support such as this) will benefit Elise tremendously, logistically we can make this work since we'd only be dealing with 2 separate schools & it's only 10 hours per week so her 30 hours of ABA per week is still doable. B really misses being with Elise also. He's been so much happier now that she isn't in the program at university and is home with him more. They really do have a unique bond and it's so unfortunate that it's forceably broken because of her special education needs. Almost all of her social strides occur first with B. He's really good for her too.

That was Thursday. Friday was quiet, thankfully. Elise's pediatrician called with the results of her blood test from Monday. She tested allergy free of everything. Great news, but once again left me with no answers as to whether there is a "curable" condition that could be contributing to her autism. I keep looking for that magic answer that will just make all of this go away. I know this isn't going to happen, but I guess that's the form that my moments of denial take. I'm a dreamer. Her pediatrician is just wonderful and very supportive. We're really lucky with the team we've managed to put together to help Elise.

Today Elise had a fill-in therapist that she'd never met before. She initially did really well with her. Then, when they took a break and came to the playroom with us, Elise decided she didn't want to return to work with her. She tantrumed for most of the second hour. It was awful to hear. I shut my bedroom door and tried to tune out her cries. This is part of her rigidity. The change to someone new is seriously disturbing to her. We need to help break her of this rigid behavior, but it's just really awful to hear. It breaks my heart a bit each time it happens and my resolve that this is right falters. However, it is the right thing because she is finally improving and maturing. I just have to remind myself of that in those moments.

Wow! This was a really long post. What a week we had! I'll write after Elise's EEG to let you all know how that goes. Forgot to mention that B seems to have another sinus and/or ear infection. I imagine he'll need to visit the doctor on Monday, but hubby and I will be at the hospital with Elise. I'll have to call and see if I can give the right for his sitter to take him in to the doctor and receive an antibiotic prescription for him. My poor babies, both of them. Poor A for having such stressed out parents also...Things will improve, focus on the positive, better times will come...

I should have a new niece this week - that's a really bright spot in our lives. Our cousin had a baby boy last week, another bright spot, and there are more little babies on the way. Must have been something in the water 8-9 months ago.

Keeping Busy

Elise has continued to make progress. It's difficult for me to see because by the time I see her, she's exhausted from the day. In the mornings when I'm with her, it's just hectic because I'm trying to get myself and 3 kids ready. I'm looking forward to spending time with her this weekend and really seeing how she is. She has moved on to imitating sounds now. Her non-verbal imitations skills are really good now. They are noting what sounds she can make already and starting from there. She definitely is trying hard. It's so odd to me how hard it is for her to make different sounds. Now she watches others' mouths and tries to imitate the shape to make the sound. Of course, we have to get her attention first.

Elise's bloodwork is scheduled for Monday. Her 24 hour EEG is scheduled for next Thursday. We have our sitter spending the night with the boys so that we can both be at the hospital with Elise. I'm really nervous about it. Hopefully all will go well. She'll be sedated in order to connect everything to her head. I hope that she'll be able to move around and play. Poor baby! I doubt the test will show anything, so I'm somewhat ambivalent about having it done at all. However, I also don't want to wonder someday whether I could have helped her more if only I'd done the test and found out that she needed anti-seizure medication or something. I can only imagine how we'd feel if she suffered another big regression like she did in December 2008. The pre-admission service called today and all we have to do is meet Elise's deductible. The rest of the test will be covered 100%. That's of course great news. We've been really fortunate in this whole insurance thing.

We STILL have not received the stupid letter from the school district. I need to e-mail our contact there and let her know that we are more than 4 weeks recessed from her IEP with no movement forward. I'm pretty sure this is known, but I just want to start getting things in writing. I've found contacts for a preschool located at a local university campus. It practices a full inclusion classroom philosophy, meaning that Elise would have plenty of typically developing role models while still receiving the support of therapists and aides for her special needs. Better yet, it would be possible for B and her to be in class together. Now that she's done with the university program and is home so much more, it's become even clearer to me how much happier both of them are when they are together. No other child can bring out the real Elise the way that B can. Today they were taking a bath together. He was easily making her laugh. At bedtime, they were reading a baby book with me (one I got out for Elise, but B still enjoys) and imitating things in the book such as peek-a-boo, making a silly face & smiling. I would tell Elise "Do this" and she would, but first she'd look at B doing it. He was making her smile. Last week, their sitter was out walking with them. B wasn't listening when the sitter said "Let's Go!". She then bluffed, "Ok then B, byebye. Let's Go Elise." Elise looked at her and said "No!" then went to B, took his hand, pulling him a bit, and said "Go!". It's the first super obvious sign she's ever shown of really caring for him. It makes me cry with happiness thinking about it. Anyway, my contact is supposed to call me soon to discuss how to go about getting placement for Elise with this school through the local school district and her IEP process. I placed B on the waitlist for the school and they noted that his attendance is contingent on Elise's placement there.

Tomorrow I will call Genetics to see whether Elise's test results are ready. It's been 6 weeks, 2 days and we were told it would take 6 weeks. I'm on top of all this, unbelievable, but I am. It's a lot right now. We also have the possibility of a new home. My colleague rents a house in the area and we may rent from him. He would allow a month-to-month basis which is awesome for us because we'll have more flexibility. Also, it's less money than our current home so we can save for our own home better. We'll see what comes of that.

Good night.

Return of Vocal Stimming

Yesterday Elise had ABA therapy in the morning. Her therapist said that she had a really good session. We finally received our video monitor, so hubby was home and able to watch a bit of the session. He said it was very similar to the approach used at the university program she just finished. We ended her session about 15 minutes early so that we could attend a birthday party of twins that she met in the university program. The party was really nice and Elise's brothers had a great time. Elise was a bit overwhelmed, so she threw some tantrums. She also returned to all sorts of stimming. The worst was the vocal stimming. She was loudly yelling "Ahhhh" or other sounds at random times. Head turning sounds. I mean, everyone there loved someone with autism, so it's not like it was not understood. However, it is disconcerting to have the most obviously autistic child around. I guess this is just my ego. We hadn't seen her do the vocal stimming in weeks. I met another mother there with an autistic son only 8 days younger than Elise. He went through the university program with Elise's same classroom teachers a few months before Elise. I don't know where he started, but he was doing great. I hope that Elise can achieve his level of success someday. His mother said that ABA has helped him the most, after the kick start of the university program. Sigh, sometimes it seems like such a long road ahead of us, and it is. We just have to take it day by day and hope for the best.

I forgot to mention that I still haven't taken Elise for her latest blood draw to test for allergies. I really need to do this. My seasonal allergies were awful yesterday and so were her older brothers. In fact, he's now back on his allergy medication and still has lots of sniffling and dark circles around his eyes. I really am wondering about Elise and seasonal allergies. That, besides the fact that she was at a party, a stressful situation for her, may have contributed to the return of so much stimming. I'll have to see what the test results show, once I get around to taking her. That is definitely on the agenda for next week.

Also on next week's agenda, the genetic test results should be available. The doctor had told us that if we didn't hear after 6 weeks, to give him a call. Wednesday will be 6 weeks. We should also receive our long awaited letter from the school district. I'm not holding my breath for that one. I'm pretty sure that my assumptions were correct and that this whole non-public school option is just a farce to avoid educating Elise until September. It's now been 3 weeks and 4 days since our IEP meeting for her where we were told we'd receive a letter in a couple of weeks. I think we're going to have to find funds to lawyer up. Before, I really wasn't going to ask for much in the way of school because I wanted to focus on ABA therapy this year. If I have to hire an advocate or lawyer, I'm asking for it all. We don't have the money to play these games, so I'll make sure what we get is worth the money spent. Fun times ahead. I also need to start planning for Elise's EEG test at the hospital on Feb 25. You know, the details of cancelling her ABA sessions scheduled for that day, determining what to bring, arranging childcare for the boys. It's always lots of details! SOMEDAY things will be easier.

Just a Quick Note

Since I also use this blog to help me remember what Elise has done when, I wanted to write a quick note about the last few days. Sunday night was a rough night for us. Elise woke at 3:30 a.m. throwing a massive fit. She was kicking and thrashing and screaming and really just out of control. She was fully awake and aware. I don't know what precipitated this. It was pretty bizarre. It took her almost a full hour to completely settle. She seemed to be looking for something. When she initially started to settle, in between screams, I reminded her that she could tell us what she wanted. She immediately signed I Want, very emphatically. I asked her to point and she pointed under the bed. There was nothing there, which started the whole fit over again. I took her to the playroom and turned on TV for awhile. That seemed to redirect her and she only sobbed periodically. After 30 minutes of TV, I turned off the TV and held her tight. Eventually I moved her onto the floor next to the couch onto a makeshift bed of couch cushions. I reassured her that I was right there and she quickly fell asleep. Disturbing. Her breath also smelled awful. Actually, writing this while I'm up because of my acid reflux, just made me wonder if maybe she was having some reflux. That could explain the waking and bad breath. Food for thought...a new one to add to my library of many "theories" about possible medical causes for Elise's odd behaviors.

Not surprisingly, since she was overtired after 2 straight nights of intermittent sleep, she was much more fussy for her ABA sessions. Her sitter said there was quite a bit more crying. She also attempted to cling to the sitter whenever she took a break from ABA in her room and tantrum when it was time to return to her room. Last night she slept beautifully and hopefully she will tonight too. Maybe she'll enjoy her sessions more tomorrow.

Hubby took the kids to an indoor playground tonight. He said that Elise played on the teeter-totter with her twin. She was on it across from hubby when her twin asked to use it. Hubby got up for him and she tried to get up also. Hubby told her to stay and play with B and she did.

Not much else to report. Maybe I'll try to sleep now in case Elise wakes us up again in a couple of hours.

Progress with Speech

Last night Elise suffered from insomnia again. She started crying at some godforsaken hour of the night. I went in to calm her and she calmed easily. However, she started crying anytime I left, so I decided to sleep on couch cushions in her room again. I have no idea how long I was there because I was sleeping off and on. I'd wake when she'd get too noisy with her play. She would be standing in her bed doing the motions for her new favorite Eric Carle book, acting it out. I'd tell her to lie down and that it was time for night night. She'd comply, but soon I'd wake and there she'd be standing again. Hubby finally traded places with me because he will sleep right through her play and noise. Needless to say, she was tired today.

Elise had therapy from 8-10 this morning. She did great. There was very little crying and protesting. I've been impressed with both of the therapists that she's had this weekend. The one today told me that Elise spontaneously said dog when she was showing her a card with a dog. She was not even asking Elise to produce speech at that time. We've heard her say dog spontaneously before, but it's great that she showed someone else this skill. I think her confidence is growing.

After the session, the therapist told me that Elise is already through the first stage of things they were working on her achieving. This isn't too much of a surprise because when she left the university, she had a lot of newly emerging skills. These have since become much more solidified. It's still wonderful to hear. During Elise's break, she came out to where the family was playing and waved to hubby and I when prompted by her therapist. Then, the boys came over to see her and she also waved to them when prompted. She had to contemplate that one before complying! The boys were really excited. I was actually a bit shocked to see her so compliant. I'm hopeful that she'll someday learn to greet people in this way without so much direct prompting. Yeah Elise.

We took the kids to the mall to play. There was a boy playing on a lion figure where Elise was also playing. He was probably about her age. He wanted it to himself and was subtly (at least subtly for a 3 year old) pushing her away. The mom of course ignored this. I stood back and watched to see how Elise would handle this. It was a riot. She ignored it at first. When it continued, she stopped and looked directly into his eyes (great eye contact). She almost seemed confused. Next thing I know, she's pushing him back in the exact same way. Honestly, the reason I found this so funny was that she was not doing it to retaliate, I think she was "social referencing" and "playing" with him. Not the social referencing I'm looking for, but wow, she tried. I'm so proud. She's pushed kids in the past, but it was with emotion. This was not.

While at the mall, we took the kids through an obstacle course they have there for children, for an outrageous price of course. Anyway, the boys went through with the worker. For Elise, I went through with her. She loved it! I'm glad I took her through though because the way it's run is that the worker yells out the instructions to the kids and tries to have them go as quickly as possible. This caused Elise to just freeze because it was probably too difficult for her to process. Since I was there, I was able to physically prompt her about what to do. She had no problems, in fact she was squealing with delight. However, I didn't fare as well. Let's just say that 39 is getting a bit old to be doing these kinds of things. It's definitely built for smaller more agile people.

At dinner tonight Elise finished eating and wanted to leave the table. We've been working on having her sign "all done". She would do this sometimes at the university program, but really only does it for us when we manipulate her arms. On her own tonight, she not only signed it, she said twice, very clearly, All Done. Shock - that's the word I felt at the moment of her utterance. Thrilled once it sank in that she'd spoken so well and with such purpose. She is so close. Her improvement lately is astounding. I'm sure this is just the start of great things to come.

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.