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.
Sunday, February 7, 2010
Saturday, February 6, 2010
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.
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.
Thursday, January 21, 2010
Moving On
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.
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.
Sunday, January 17, 2010
What next?
I'm actually much less down today. The weekend was very needed. I received some terrible family news in the morning, but ultimately things should end up ok there I hope. It is starting to make me wonder "What Next???" 2010 was not been a stellar year so far. My hope is that it can only go up from here.
Last week was really rough at work. I was unable to attend any of our meetings for Elise. Hubby had to go to all of them. My boss' last day was Friday. I'm hopeful that things will be a bit less crazy now. It's never ending there with too much to do and no resources to do it. The lack of support is like nothing I've ever experienced at work. With the job news of hubby, I just need to suck it up and deal until things settle for us a bit.
Elise had another insomnia night on Thursday. I have no theory for what caused it this time. She was really irritable on Friday morning, not surprising since she didn't sleep on Thursday night. When hubby dropped her off at school he warned her teacher that Elise hadn't slept again and it might be a rough day. When he went for a meeting with the teacher that afternoon she jokingly told him that maybe we should always have her not sleep because that had been her best day ever. Apparently she's finally starting to speak some for them also. I wish she had another 12 weeks to go there. She's doing so well.
Her teacher did say that Elise lately has been irritable in the mornings but is better later in the day. We give her medicine first thing in the morning and we just increased her dosage about a week ago, per the doctor's recommendation. Irritability can be a side effect, so her teacher suggested we speak with the doctor. After this weekend, we're definitely speaking with the doctor. She was noticably irritable in the mornings, quite unbearable to be around actually. The poor child. We lowered her dosage to the old dosage this morning because it's obvious the new dosage is no good for her. I'll call the doctor tomorrow. It will take 12 weeks to see if this is going to help her much. However, we really haven't seen any noticable improvements in the areas we were attempting to target. Her attention has improved some, but her rigidity and ability to go from 0 to 10 in frustration level in a moment is the same. If the irritability doesn't improve, I'm all for stopping this test. I'm glad we've tried it because I would have always had doubts about whether we made the wrong choice not trying it.
Elise and her brothers went to Build-A-Bear Workshop today. The boys seemed to enjoy it, although B was badly behaved. That seems to be his m.o. lately. Elise was pretty overwhelmed by it, but she did well. Knowing how difficult those kind of things are for her makes me so proud of how well she does. That child will ultimately learn to not let anything stand in her way because she has to work so hard all the time. She really will be fearless, hopefully not in the dangerous ways she can be right now though.
On Friday, we took the kids to McDonalds. Hubby and I wanted to talk about plans without kid interruptions and if the kids play at McDonalds, we can do that. Anyway, I had to watch Elise constantly because she'll just park herself at a stranger's table and start eating their food. It's so embarassing. The child has no concept of stranger anxiety. Not a good thing. We'll definitely have to work on that with her ABA therapy. Teach her some boundaries.
Today, Elise was coloring at the kitchen table with a marker. She dropped it on the floor by accident. I started to bend to pick it up and as I did so, I heard her say very clearly as she pointed to it "Marker". I didn't even know she knew that word. Yea Elise! Her language is really improving. It can only go up from here.
Besides being afraid to answer the phone for fear of more bad news, things are looking better. We're getting through it all.
Later.
Last week was really rough at work. I was unable to attend any of our meetings for Elise. Hubby had to go to all of them. My boss' last day was Friday. I'm hopeful that things will be a bit less crazy now. It's never ending there with too much to do and no resources to do it. The lack of support is like nothing I've ever experienced at work. With the job news of hubby, I just need to suck it up and deal until things settle for us a bit.
Elise had another insomnia night on Thursday. I have no theory for what caused it this time. She was really irritable on Friday morning, not surprising since she didn't sleep on Thursday night. When hubby dropped her off at school he warned her teacher that Elise hadn't slept again and it might be a rough day. When he went for a meeting with the teacher that afternoon she jokingly told him that maybe we should always have her not sleep because that had been her best day ever. Apparently she's finally starting to speak some for them also. I wish she had another 12 weeks to go there. She's doing so well.
Her teacher did say that Elise lately has been irritable in the mornings but is better later in the day. We give her medicine first thing in the morning and we just increased her dosage about a week ago, per the doctor's recommendation. Irritability can be a side effect, so her teacher suggested we speak with the doctor. After this weekend, we're definitely speaking with the doctor. She was noticably irritable in the mornings, quite unbearable to be around actually. The poor child. We lowered her dosage to the old dosage this morning because it's obvious the new dosage is no good for her. I'll call the doctor tomorrow. It will take 12 weeks to see if this is going to help her much. However, we really haven't seen any noticable improvements in the areas we were attempting to target. Her attention has improved some, but her rigidity and ability to go from 0 to 10 in frustration level in a moment is the same. If the irritability doesn't improve, I'm all for stopping this test. I'm glad we've tried it because I would have always had doubts about whether we made the wrong choice not trying it.
Elise and her brothers went to Build-A-Bear Workshop today. The boys seemed to enjoy it, although B was badly behaved. That seems to be his m.o. lately. Elise was pretty overwhelmed by it, but she did well. Knowing how difficult those kind of things are for her makes me so proud of how well she does. That child will ultimately learn to not let anything stand in her way because she has to work so hard all the time. She really will be fearless, hopefully not in the dangerous ways she can be right now though.
On Friday, we took the kids to McDonalds. Hubby and I wanted to talk about plans without kid interruptions and if the kids play at McDonalds, we can do that. Anyway, I had to watch Elise constantly because she'll just park herself at a stranger's table and start eating their food. It's so embarassing. The child has no concept of stranger anxiety. Not a good thing. We'll definitely have to work on that with her ABA therapy. Teach her some boundaries.
Today, Elise was coloring at the kitchen table with a marker. She dropped it on the floor by accident. I started to bend to pick it up and as I did so, I heard her say very clearly as she pointed to it "Marker". I didn't even know she knew that word. Yea Elise! Her language is really improving. It can only go up from here.
Besides being afraid to answer the phone for fear of more bad news, things are looking better. We're getting through it all.
Later.
Tuesday, January 12, 2010
Enough is Enough
I'm once again operating purely in survival mode. After more than 3 years of doing this fairly often, I've really started to just be tired. Today started out normal enough. Hubby took Elise to school and decided to stay there with her and observe her today. The school district psychologist was scheduled to observe also. He met with her and she noted how much Elise had improved. She said that she felt Elise belonged in a program where she would have a very low strudent to teacher ratio. This isn't the way we were beginning to lean for preschool, but I don't know which way to go. The pre-school intensive & I-CAP programs are what she feels is best for Elise. We were moving away from these programs because of their time committment. We were leaning more towards spending most of her time in ABA therapy supplemented with pre-school. I just don't know what will be best for Elise. One option that would be good would be for us to send her to private school and have the school district provide an aide from her ABA agency asist her in the school. I prefer this option because then I could keep her and B together in the same school. I think this is good for both of them. Thinking about this makes my head spin.
As if this wasn't enough to think about, hubby returned to his office today to discover that he'd missed a last-minute scheduled all hands meeting. Of course, these are never good things at work and this meeting met that criteria. His location is closing and he will be out of a job by July. Finding a new job has just been moved into first priority right now. Once again, our moving / buying a home plans are suspended and I don't know what to do to get out of this house that may be making us sick. Where would we move? We don't even know for real now where we'll be working only 6 months from now. He's going to try to get into his work's El Segundo location. We would then want to live closer to there instead of buying in these neighborhoods. Whether he can even get a position there is suspect since now everyone from his current facility will be vying for jobs there since it's the next closest location. Like I said, my head is spinning.
Top this all off with the present time concern that my work is crazy busy and very high pressure right now. The deadlines are numerous and I have no idea how I'll manage to meet them this week. I honestly feel on the verge of just breaking down, but I know I won't because if I haven't yet, then why would I suddenly now?
On the bright side, Elise has been having some great days. I'm looking forward to seeing some of this on the upcoming weekend and next week at her last 4 days of school. Time to pick up and move on once again. I know that brighter times are coming once this uncertainty is settled. It's just all very stressful and scary right now.
I'm hoping that these dark times will pass soon and that they're leading to much brighter times and a great future for all of us.
Elise met with Genetics yesterday. From the logistical side of things, it was a nightmare. The appointment was at 3 across the street from her school, which lets out at 2. Therefore, I had to leave work at 1 to get there. We wandered around for an hour before her appointment. Then, we waited until a bit after 4 to see the doctor. He took her measurements, looked at her and her resemblance to us, examined her a bit and asked us some questions. He ordered a blood test that will be used to map her DNA at a high level. We waited an hour at the lab for this blood test. In his words, the DNA test will be like looking at the moon from the earth. They'll look for extras & missing things as compared to the typical human DNA chain. Something like that - can you tell I'm no scientist ;0
Anyway, my understanding is that if something unusual is seen, then hubby and I would be tested. If we have the same difference, then there could be a genetic issue. If not, then it would just be an anomaly for Elise and would not lead to genetic concerns for the family's future children (not mine because I'm so done). Depending on what is found, we may do additional tests for specific genetic disorders that are linked with autism, but we're starting here. It doesn't appear from this appointment that there will be much to the specific genetic disorder theory for her autism, but we of course don't know that yet. She may very likely be a child for which there is a predisposition and with the appropriate stressors, the cycle begins. The doctor did tell us that there is a research study ongoing right now where the DNA of autistic children, likely ones like Elise, is being mapped in detail and examined for any common differences. This would be something in which we would like to participate if she qualifies. I just want science to start discovering more answers to help more children and families suffering from autism.
I'm just so emotionally wiped out right now. I'll write more about Elise another time. I just need to attempt to sleep, wake up in the morning and survive tomorrow. I think I need Ambien or something so that I can actually fall asleep. Maybe I'll steal Elise's melatonin tonight, or a nice glass of wine, hmmmm....
Oh yes, I forgot to mention how when I sat down at the computer to post this, I saw for the first time the headlines about Haiti's 7.0 earthquake. Unbelievable and so sad. This has been quite the day.
As if this wasn't enough to think about, hubby returned to his office today to discover that he'd missed a last-minute scheduled all hands meeting. Of course, these are never good things at work and this meeting met that criteria. His location is closing and he will be out of a job by July. Finding a new job has just been moved into first priority right now. Once again, our moving / buying a home plans are suspended and I don't know what to do to get out of this house that may be making us sick. Where would we move? We don't even know for real now where we'll be working only 6 months from now. He's going to try to get into his work's El Segundo location. We would then want to live closer to there instead of buying in these neighborhoods. Whether he can even get a position there is suspect since now everyone from his current facility will be vying for jobs there since it's the next closest location. Like I said, my head is spinning.
Top this all off with the present time concern that my work is crazy busy and very high pressure right now. The deadlines are numerous and I have no idea how I'll manage to meet them this week. I honestly feel on the verge of just breaking down, but I know I won't because if I haven't yet, then why would I suddenly now?
On the bright side, Elise has been having some great days. I'm looking forward to seeing some of this on the upcoming weekend and next week at her last 4 days of school. Time to pick up and move on once again. I know that brighter times are coming once this uncertainty is settled. It's just all very stressful and scary right now.
I'm hoping that these dark times will pass soon and that they're leading to much brighter times and a great future for all of us.
Elise met with Genetics yesterday. From the logistical side of things, it was a nightmare. The appointment was at 3 across the street from her school, which lets out at 2. Therefore, I had to leave work at 1 to get there. We wandered around for an hour before her appointment. Then, we waited until a bit after 4 to see the doctor. He took her measurements, looked at her and her resemblance to us, examined her a bit and asked us some questions. He ordered a blood test that will be used to map her DNA at a high level. We waited an hour at the lab for this blood test. In his words, the DNA test will be like looking at the moon from the earth. They'll look for extras & missing things as compared to the typical human DNA chain. Something like that - can you tell I'm no scientist ;0
Anyway, my understanding is that if something unusual is seen, then hubby and I would be tested. If we have the same difference, then there could be a genetic issue. If not, then it would just be an anomaly for Elise and would not lead to genetic concerns for the family's future children (not mine because I'm so done). Depending on what is found, we may do additional tests for specific genetic disorders that are linked with autism, but we're starting here. It doesn't appear from this appointment that there will be much to the specific genetic disorder theory for her autism, but we of course don't know that yet. She may very likely be a child for which there is a predisposition and with the appropriate stressors, the cycle begins. The doctor did tell us that there is a research study ongoing right now where the DNA of autistic children, likely ones like Elise, is being mapped in detail and examined for any common differences. This would be something in which we would like to participate if she qualifies. I just want science to start discovering more answers to help more children and families suffering from autism.
I'm just so emotionally wiped out right now. I'll write more about Elise another time. I just need to attempt to sleep, wake up in the morning and survive tomorrow. I think I need Ambien or something so that I can actually fall asleep. Maybe I'll steal Elise's melatonin tonight, or a nice glass of wine, hmmmm....
Oh yes, I forgot to mention how when I sat down at the computer to post this, I saw for the first time the headlines about Haiti's 7.0 earthquake. Unbelievable and so sad. This has been quite the day.
Thursday, January 7, 2010
Good Days
Elise returned to school on Tuesday. She spent Monday playing with her sitter and really enjoyed herself. She was super happy all day. Hubby took her to school Tuesday morning. He said that when she walked in sight of the school building, she started jumping and laughing and running. At first he was worried she was going to start the whole strange laughing thing again, but then he realized she was just excited to be back to school. When she reached her classroom, she hugged one of her teachers, went back and hugged another, returned to the first for a hug and again to the other. She was extremely excited to be back and see them. I love that she is learning to share her joy with others.
On Wednesday, we had a conference to discuss where Elise is at, how she assessed and recommendations for continuing her success. Her regional center coordinator, her soon-to-be ABA providers, her head teacher, her care coordinator, the program social worker, the medical doctor, her OT therapist and her ST therapist were there. It was wonderful because for once I think that Elise is understood. Elise assesses very poorly but she does in fact know a lot more than she shows. Hubby and I have known this all along, but when everyone consistently assesses her so low (we agree that the assessments are correct, she just holds back), even we had started to have doubts. A consistent theme of discussion was how her performance could be inconsistent, she is often non-compliant & she is not showing everything that she can do. That and her lack of motivation and focus. Something holds her back from fully being herself. At home, we see the real Elise most of the time. No one seems to be able to identify why she is holding back. All acknowledge that she can be "slow to warm". This is definitely true, but 8 weeks is a bit long to take to open up to the people that are trying to help her. If I knew how to help her open up more quickly, I would do what I could. I personally think this is going to have to be something that she determines she wants to do. I see signs of that happening right now. A changed that way around 3 1/2. It's like around that time he decided to try more openly. I hope that Elise will do the same soon. I personally think her lack of motivation has much to do with being bored in her environment. I know I'm the mom and mom's always think too highly of their offspring, but I think she's scarily smart. It's all in there, but with the autism and her personality mixing, we haven't quite found the key to getting it out of her. Unfortunately, I really think we will only keep making these small, but significant, strides with her until she internally decides that she wants to join others and show them how she really is. When she makes that choice, she will soar. This is not just what I BELIEVE, this is what I KNOW. I only hope that this happens soon so that she doesn't fall so far behind developmentally that it'll be too difficult for her to catch up and hamper her confidence more than it already is.
Today was a good day. I dropped Elise off at school and had a meeting there. Hubby picked her up. He brought her sitter and B with him. They watched her in circle time and said that she did great. When they entered the room, hubby told B to give Elise a hug. The first time she didn't hug back, but when he told her to hug B, she actually put her arms around him.
On Tuesday night, Elise crawled into B's bed. She didn't want to go to her bed and B said that he wanted to sleep with her. I decided to let them try to see what would happen. She actually somewhat smiled when B laid down next to her. She started to fall asleep, but B called us back into the room 5 minutes later because he wanted more room. He wanted Elise to go back to her bed. We put her into her bed and she didn't fuss about it. It just seemed so strange to me that she really kind of wanted to sleep with him.
Also on Tuesday, I was cooking dinner while Elise and A were in the playroom. A was working on a large floor puzzle. Elise apparently picked up a piece and put it in the puzzle correctly. A was super excited and ran out to tell me that Elise was playing with him. I was skeptical, but went into the room to see. She was indeed doing the puzzle and tolerating A doing it at the same time. She was getting frustrated because it was difficult for her. I sat down and all 4 of us did the puzzle together. Elise allowed Adam to place his hand over hers and help her orient the puzzle piece and put it in the correct place. It was amazing to see her actually cooperatively playing with him. It truly only lasted about 3 minutes and she was getting frustrated periodically, but it was still a first.
The best thing is that she is really imitating hubby and I and initiating play with us. She has a princess book with puzzle pieces. She has been picking up the crown and other hat type pieces and putting it on her head and on our heads. There are food items and she pretends to eat them. Even better, she pretends to feed us. One piece is a lipstick. She gave it to me and I pretended to put it on my lips. I asked if she wanted to put some on also. She took and also pretended to put it on her lips. There is a comb and she spontaneously started combing my hair. As if that wasn't enough, she noticed that she had combed hair in front of my eyes. She brushed it out of my eyes for me. Maybe I'm reading too much in that action, but it seemed to me that she had an awareness that hair in my eyes would be bothersome to me. Could that actually have been a display of empathy? I can certainly be optimistic and hope, but that may be a bit too optimistic for right now.
Well, that's been this week so far. All I plan on doing right now is majorly encouraging the progress we're seeing at home. I'm hoping that if I help boost her confidence, in sincere ways, that she'll start extending some of these behaviors we're seeing at home, to her school and her therapy sessions. That way, the people with the best skill sets to teach her will be helping the real Elise with the exact things that she needs. I don't know if this makes sense, but it does in my head :0)
Good night all.
On Wednesday, we had a conference to discuss where Elise is at, how she assessed and recommendations for continuing her success. Her regional center coordinator, her soon-to-be ABA providers, her head teacher, her care coordinator, the program social worker, the medical doctor, her OT therapist and her ST therapist were there. It was wonderful because for once I think that Elise is understood. Elise assesses very poorly but she does in fact know a lot more than she shows. Hubby and I have known this all along, but when everyone consistently assesses her so low (we agree that the assessments are correct, she just holds back), even we had started to have doubts. A consistent theme of discussion was how her performance could be inconsistent, she is often non-compliant & she is not showing everything that she can do. That and her lack of motivation and focus. Something holds her back from fully being herself. At home, we see the real Elise most of the time. No one seems to be able to identify why she is holding back. All acknowledge that she can be "slow to warm". This is definitely true, but 8 weeks is a bit long to take to open up to the people that are trying to help her. If I knew how to help her open up more quickly, I would do what I could. I personally think this is going to have to be something that she determines she wants to do. I see signs of that happening right now. A changed that way around 3 1/2. It's like around that time he decided to try more openly. I hope that Elise will do the same soon. I personally think her lack of motivation has much to do with being bored in her environment. I know I'm the mom and mom's always think too highly of their offspring, but I think she's scarily smart. It's all in there, but with the autism and her personality mixing, we haven't quite found the key to getting it out of her. Unfortunately, I really think we will only keep making these small, but significant, strides with her until she internally decides that she wants to join others and show them how she really is. When she makes that choice, she will soar. This is not just what I BELIEVE, this is what I KNOW. I only hope that this happens soon so that she doesn't fall so far behind developmentally that it'll be too difficult for her to catch up and hamper her confidence more than it already is.
Today was a good day. I dropped Elise off at school and had a meeting there. Hubby picked her up. He brought her sitter and B with him. They watched her in circle time and said that she did great. When they entered the room, hubby told B to give Elise a hug. The first time she didn't hug back, but when he told her to hug B, she actually put her arms around him.
On Tuesday night, Elise crawled into B's bed. She didn't want to go to her bed and B said that he wanted to sleep with her. I decided to let them try to see what would happen. She actually somewhat smiled when B laid down next to her. She started to fall asleep, but B called us back into the room 5 minutes later because he wanted more room. He wanted Elise to go back to her bed. We put her into her bed and she didn't fuss about it. It just seemed so strange to me that she really kind of wanted to sleep with him.
Also on Tuesday, I was cooking dinner while Elise and A were in the playroom. A was working on a large floor puzzle. Elise apparently picked up a piece and put it in the puzzle correctly. A was super excited and ran out to tell me that Elise was playing with him. I was skeptical, but went into the room to see. She was indeed doing the puzzle and tolerating A doing it at the same time. She was getting frustrated because it was difficult for her. I sat down and all 4 of us did the puzzle together. Elise allowed Adam to place his hand over hers and help her orient the puzzle piece and put it in the correct place. It was amazing to see her actually cooperatively playing with him. It truly only lasted about 3 minutes and she was getting frustrated periodically, but it was still a first.
The best thing is that she is really imitating hubby and I and initiating play with us. She has a princess book with puzzle pieces. She has been picking up the crown and other hat type pieces and putting it on her head and on our heads. There are food items and she pretends to eat them. Even better, she pretends to feed us. One piece is a lipstick. She gave it to me and I pretended to put it on my lips. I asked if she wanted to put some on also. She took and also pretended to put it on her lips. There is a comb and she spontaneously started combing my hair. As if that wasn't enough, she noticed that she had combed hair in front of my eyes. She brushed it out of my eyes for me. Maybe I'm reading too much in that action, but it seemed to me that she had an awareness that hair in my eyes would be bothersome to me. Could that actually have been a display of empathy? I can certainly be optimistic and hope, but that may be a bit too optimistic for right now.
Well, that's been this week so far. All I plan on doing right now is majorly encouraging the progress we're seeing at home. I'm hoping that if I help boost her confidence, in sincere ways, that she'll start extending some of these behaviors we're seeing at home, to her school and her therapy sessions. That way, the people with the best skill sets to teach her will be helping the real Elise with the exact things that she needs. I don't know if this makes sense, but it does in my head :0)
Good night all.
Sunday, January 3, 2010
Rough Day
Elise was a bit off yesterday and today. The night before last, she suffered insomnia again. She had taken her WonderPet figures to bed with her. We knew that was trouble, but weren't up to the major tantrum it would have taken to have her part with them before bed. Anyway, she woke in the middle of the night screaming because she couldn't find one of them. Hubby found it for her, but then she was unable to return to sleep. I finally went into the room to sleep with her. She would lie down, but then I'd hear her playing again 30 minutes later. I finally took her out of her crib and tried to hold her to help her settle. Her heart was beating faster than normal and she seemed to be having problems not moving. She was wired. For example, she was moving her feet up and down my leg and then she was kind of twitchy. She was opening her mouth wide and making sounds like she sometimes does, often when she's stressed. Then, she started in with the crazy laughing again. It was so upsetting. I finally left the room with her and went to the couch in the living room. There, we could get in a more comfortable position with me holding her tight. She settled almost immediately and was out within 5 minutes.
Given the insomnia, she was pretty tired yesterday. Her eye contact was worse than normal, she was spinning and jumping a bit & she turned her back on us a couple of times. She really hasn't been doing that lately. By afternoon, she started behaving more like she has been recently. I gave her and B a bath. She intently watched him playing and then started doing the same thing he was. She imitated and there was no toy involved. After bath, the boys were playing a game where they were pretending that they couldn't stop spinning out of control. She watched them and then joined in with their play, laughing along with all of us. This was really exciting to see. In the evening, hubby and I went out to dinner while the kids stayed with the sitter and her 14 year old son. He's awesome with the kids and they really enjoy when he visits. Elise joined and played with him when he was chasing all of them through the house. Elise slept the entire night without a sound.
This morning was again very rough with her. She wanted to play with an umbrella she found. I opened it for her, but one whole side of it was broken. She was so upset with this that she began a major tantrum. It lasted probably about 45 minutes. We ignored it, but it really didn't slow. Hubby left with the boys for the park and I finally went to another room and worked on the computer (she was in control of herself at this point but still tantruming). After I was gone a few minutes, she started calling Mama!, Dada! I went to her and, although she was still screaming some, she was calm enough that I could hold her. I squeezed her tight and she just clung to me for quite a few minutes. We then got ready to join the others at the park. So, I get to the park and she throws a massive fit about getting out of the car. I sit with her in the car for probably 30 minutes. I just made a call to my parents during this time. Finally, she was getting uncomfortable in the car since it was rather warm. She then decided it was ok to get out and go to the park. She played ok at the park. We then went to lunch. At lunch, she was very lathargic. An aspiring photographer noticed her and asked if she could take her picture. Elise had her head down on the table for the picture. It's a beautiful picture. I included it in this post.
Anyway, A also had his head down like this and was very lathargic around this time. A has allergies and didn't take his medicine last night. Seeing how similar the 2 seemed to be feeling made me wonder if allergies could be contributing to how off Elise has been the last couple of mornings. It really affects A's behavior when his allergies are bad. This is something I'll have to look into further. The winds were blowing from the desert area again and that's when all of us have worse allergy problems.
Well, that's about it. Elise returns to school on Tuesday and the boys return tomorrow (yeah!). It's been a wonderful break, but I'm so ready to get back to a routine again. The kids are all ready for that also, even if they don't think they are.
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