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.