Riding the Rollercoaster

Things have once again been very busy. Elise was not doing well after her hospital visit for her EEG. She seemed to have a sort of regression, my worst fears felt as though they were being confirmed. However, she seems to be coming out of it and is back to her old self and improving. She had a slight cold for the week after the hospital visit. It worsened this past weekend and she became very sick. I think that had a lot to do with the "regression" we were seeing. Here's the happenings of the past couple of weeks:

On Mar 7, Elise and B attended the 3rd birthday party of a girl who attended the university program with Elise. It was at an indoor playground filled with bouncers. Elise's dream place! She and B had a great time. It did seem to be stressful for Elise and she was on the verge of several transition type tantrums. In the evening, Elise broke out in hives, that's how stressful I think the party was for her. She hadn't been exposed to anything new in her environment or food repertoire.

Instead of recovering from the birthday party the next day, we brought her to a birthday party for her brother A. She was really overwhelmed about it and pretty much was hiding at the party playing by herself. Since hubby and I were busy socializing as we were the party hosts, we really weren't able to help her assimilate. Fortunately, her babysitter and her son came to the party. They played with Elise a lot and the look of relief on Elise's face when she saw them was priceless. Her babysitter is such a godsend.

During A's party, I had a couple of revelations regarding Elise. There is another mother whose sons attend school with A and B. Her youngest is about six months younger than Elise and B and has been diagnosed with high functioning autism. I actually do find this woman to be a good and caring person. However, probably because she's terrified by the diagnosis, as are we, she has said some tactless things to me. She tends to emphasize how her son is high functioning (implied, unlike Elise). Anyway, at the party it became clear to me that the reason Elise's autism is more obvious is because we constantly challenge her to join with other children and in our activities. Her son spent the party doing his own thing, not sitting with the other kids for cake or lunch, that sort of thing. Because we have Elise do those things, we face more tantrums. In all honesty, I don't know which is the better way to handle our kids. Maybe what we're doing is what Elise needs and maybe her son was just having a time where he needed to be on his own. He had been to another party earlier in the day, so he must have been exhausted. I wouldn't know. My revelation was just that appearances to others are inconsequential. We have to just plug along with what we believe is working for Elise and not worry about how severe she appears or how much others may pity our situation. I try to always do this, but given how much some of this mother's thoughtless comments have stung, I'm obviously not always successful at it. Anyway, my other revelation was that I'm kind of thankful that we have never received the "high functioning" label for Elise. I think that has pushed us to see how truly serious her condition is and kept us pursuing agressive treatment for her.

After we were told to allow Elise to have all her little figurines, our lives went to hell. She stopped sleeping and that just has a major impact on all of us. Hubby and I were so stressed and overtired that we were having problems functioning. The boys were also tired and really showing signs of feeling our tensions. Last Tuesday, I finally broke down and called her ABA parent trainer. I told her that we needed to find another way to work on Elise's hoarding behaviors because this method was just destroying us. I actually used the word destroying, I was that distraught. Anyway, she took the toys from Elise and placed them in her reward box. Now, she only has them when her therapists are working with her on this behavior. As she improves, they will work on re-introducing these toys with us. End of story for now...

Starting last Friday, Elise's cold worsened. She developed a fever Friday afternoon through Saturday morning. Then, late Saturday afternoon, she developed a terrible eye infection. I had to call the doctor on call and then hubby ran out to a 24 hour pharmacy (more than 10 miles away - which in LA is a long drive) to pick up antibiotic drops for her eyes. That is all gone now and, except for a lingering cough and some runny nose, she is recovering nicely. I am also finally starting to recover from my 2 week cold(s).

The last two days with Elise have been great. She is really on with us now. She has managed to relieve all of my fears about losing her again. Even when she is doing her own thing, she is with us and paying attention to what is happening. For example, tonight we went to a park. She started running through the field and periodically turned around to look for me. In the past, she would just go without concern for whether anyone was with her. When I was sitting with A, she came up and pulled my hand, saying "Up!". She is beginning to ask for me to play with her. I love this! She is actively imitating kids dancing on TV now. She is playing more often with A and B. She is regularly imitating one syllable sounds now. So much recent progress.

I have a tour of the fully integrated school tomorrow morning. I was very excited about this school, but am more skeptical now. Elise's ABA supervisor, who I respect very much, mentioned that, while she loves the idea of this school, she has found that it's a bit lacking for children with higher level needs. This is definitely the category where Elise currently fits. Also, after watching her at the birthday parties last weeked, I realized that she really does still get overwhelmed when surrounded by so many peers and that maybe it would be too much for her yet. I still am excited to see it for myself. Even if it's not right for now, which I sort of believe is the case, it may be great for the future. On Thursday morning, I will be visiting one of the schools that the school district has offered to Elise. I am not at all excited about this option, but I need to show a good faith effort at considering it for her. I still need to schedule a visit to the other school that the school district offered. The ABA supervisor will be attending our Thursday evening meeting with the ABA parent trainer this week so that we can discuss all of these school options with her.

Other big recent news - hubby found a new job! He accepted an offer at his same company, but in a new division and location. He'll now be working more than an hour from where we live. This is wonderful news because we now can begin to organize our lives more that we have something more solid and permanent for him. However, it's very stressful because now that he is commuting, there are a lot of demands on my time in terms of getting the kids to and from school and getting home for the sitter. I'm finding it nearly impossible to work the core hours during the work day and to get in 40 hours of work each week. I don't know what to do, the logistics of it all just aren't working. Even if I stopped working, I would still need to have help during the day because of the logistics since I'd be tied to the house while Elise is in her therapy. I couldn't afford help if I wasn't working. I can't seem to find the right answer. My acid reflux and headaches lately have been intense. While I try to figure this out, I feel like I'm failing on all ends because there just aren't enough hours in a day. With this preschool tour today & another tomorrow, my work is going to go crazy with me. I haven't even told them that I need off all day next Thursday for Elise's doctor appointments that I bundled together purposely to take less time off work. Something has to give and very soon. I think I need to sit down this weekend and just make some decisions about how to proceed. Maybe my work would let me become a contractor so that I'm only paid for what I work, generally almost 40 hours per work. They won't like this option, but I may have some leeway since they haven't managed to fill the position of my counterpart for the entire 8 months of my employment. I don't want to fall into the trap of believing I'm indispensable because NO ONE is ever indispensable, but they MAY be willing to work with me. We'll see, it's not a conversation I'm looking forward to having.

OK, so all of this is happening with trying to adjust to our new lives. As if that wasn't enough, the babysitter told me on Monday that she needs to have a surgery next month. This will leave her off work for 3 weeks, but I think it'll be longer since this job is physical and demanding. I'm counting on 6 weeks off because I care about her and I want her to be fully recovered. I haven't really gotten my head around how we'll manage without her during this time. She's been very concerned also because, as she pointed out, it requires someone very patient to care for Elise with her special needs. I tell her not to worry, to just worry about herself and that we'll manage, but once she walks away, the fear of how we'll manage sets in. We have to make some serious decisions and plans this weekend. A definite rollercoaster, that's how our lives are right now. Thank goodness for the ups, they make the downs bearable. When I think about how it's only been 7 months since Elise's diagnosis, I am shocked. It honestly feels like a lifetime. We are making strides, but it is mind boggling what we have experienced in such a short amount of time. I don't see any end to the rollercoaster ride in the near future, so I need to just get used to it and learn to deal with the ride for what it is.