Lots of Firsts

Elise is doing great and we're seeing some firsts from her. I'm full of hope. She started the UCLA program on Thursday. The first day she stayed with hubby in her new classroom while I did a parent interview with her head teacher, the program nurse, a social worker and her clinic coordinator. Hopefully they obtained a lot of useful information to help Elise. Elise was very happy that evening, so we took it that she liked the program.

On Friday, she had her first full day of school. She separated from me with absolutely no problem. She pretty much ignored the fact that I was leaving and was having a great time playing with the new toys. I stayed and observed in the observation room for 20 minutes or so. The teachers are so encouraging! Her class has 4 teachers and 4 students. On Friday, there were 5 students because the boy Elise is replacing had his last day. There was a party for him and apparently Elise enjoyed herself at it. In fact, when hubby picked her up she wasn't ready to go because she was too busy dancing. The mother of the boy gave a present to Elise. It was 3 puzzles - perfect for our family :) The card she enclosed had her contact information. Her son was pretty amazing to see. I don't know where he started from, but he seemed to be doing really well.

All the staff keeps mentioning the fact that they have 2 girls in the class. Apparently this is not the norm since autism strikes boys so much more than girls. It's really nice for Elise and the other girl that their time in the program coincides. I'm very excited about the program and the prospects of it helping Elise a lot.

The last couple of days Elise has been amazing. There are so many firsts, I don't know where to begin. Hubby told me that she hugged her nanny and him Friday. By the time I got home, she was super tired, so I didn't see any of this. Today, I took her to the pet store with A to have our dog groomed. We took time to look at the animals. There were snakes in the reptile section, but they were in a high up aquarium. I lifted Elise to show her. I pointed to the snakes and said "Look Elise, snakes." She immediately looked rather than ignoring me and then said "Hisssss....." We then went to OT. She was tired there, but did ok. After OT, we went to lunch. I was talking to her at the table. I pointed to her nose and said nose. She then proceeded to point to her own nose and say nose twice. People at the restaurant probably think it's odd that I'm clapping for her over this, but hey, who cares. I'll do almost anything to reinforce that kind of progress.

Tonight during her bath, we were playing. I told her I was going to wash her toes and she immediately grabbed her toes. She's starting to demonstrate much better understanding. She then started gazing at the bath toys. I grabbed some toys and started holding out 2 at a time, asking which she wanted. She would select the one she wanted. I thought she may have tried to say Duck & Quack, but I wasn't sure. I picked out more toys, but she would no longer pick any of them. Then, I tested by selecting the duck I thought she wanted. When that was an option to select, she smiled and picked it right away. She had been trying to say duck! B came into the bathroom and she even picked a toy from him when I showed him how to play with her.

When I was cooking dinner, I heard Elise in the bathroom. I looked and thought she was playing with the toilet seat. When I got to her, I had the feeling that maybe she was asking to use the potty. As I took off her diaper, I noticed that it was newly wet (still warm - TMI). I seriously think she had been asking but because of her communication problems she didn't know how to ask. She was really proud sitting on the potty and hubby and I made a big fuss over her.

Before bed, she was looking through some of A's books in his room. There is a Franklin book and one of the last pages has a birthday party scene. She loves that page. I started singing the Happy Birthday song. I'd say "Happy Birthday, dear Bear" and point to Bear. After the third round of me singing and doing this, she started to point to Bear when I'd sing that part. A joined us and we started to pretend to blow out the candles at the end of the song. She seemed unresponsive to this. However, on the last time we sang and did that, I noticed that she tried to blow them out also. She's really learning.

I've saved the best for last. I was in the living room and called to her in the playroom. She actually looked, so I bent down and outstretched my arms and called again. She walked over and let me hug her. I was already excited by the fact that she'd come when I called. Then, when I let her go, she opened up her arms, wrapped them around me and GAVE me a hug. It was so special. Hugs from the kids always are great, but the feel of a hug from Elise is beyond amazing. She made my day!

That's all for today - that was plenty of progress. I'm so proud of her and how hard she works. I think her confidence will soar in this program. She's finally in the right place, the place where she belongs.

First Day

Elise sort of had her first day in the UCLA program today. She went there, we met everyone, provided all the needed information, took a tour, paid our deductible and took care of administrative things. The people there seem really nice. I'm very hopeful that Elise will show some real progress because I think this is exactly the kind of help she needs.

We met the little boy who is leaving tomorrow, providing the opening for Elise. I was so impressed with him. Granted, I don't know where he was when he entered the program, but he was way further than where Elise is now. I hope that she'll manage similar success. This boy made eye contact with hubby & I, waved and said hi. This was with prompting, but wow! I dream of the day Elise will do that with people. He also gave his teacher a huge hug when she bent down and put her arms out to greet him. Another milestone I hope to see Elise acheive some day.

B is sick now, fever, runny nose & cough. Hopefully, it won't result in breathing difficulties for him. I've been working a ton this week. I'll be so glad for the close to be over, but it's always something at that place.

Elise did great today. I think she'll like it there. It's so exciting to finally be started. I can't wait to get to work on this. My sentences are so short because I'm so sleep deprived....Off to finish the work in the house so that I can snooze. My day starts at 5 am & Elise's at 6. Poor Elise, she's totally not a morning person.

A Better Day?

Today continued to be crazy, but strangely was much better than last week. Maybe we're getting used to the chaos or it's becoming a strangely organized chaos or something...

A was sick again today and had to stay home from school. I arrived at work to an e-mail scheduling an important meeting from 4-6pm. That met hubby couldn't work a full day since he would have to pick up and drop off kids at school. I decided to do the drop-off, so I left work after I'd been there only 40 minutes. As I'm picking up the twins for school, my cell phone rings and it's the school district's psychologist asking where Elise's school is located. Apparently she was planning to observe her today. Mind you, I didn't know this and hadn't made arrangements with the school. When I get to the school, there is a man in the playground with a leaf blower. I'm rushing to open the door when he starts it. Of course, this terrifies Elise. I soothed her, brought her and B to their classes, stopped at the school office, wrote a quick letter authorizing the visit and raced back to work. I used my lunch hour to pick up the twins. Elise was at the top of the slide waiting for me. She was so anxious to get to me that she hurried all the way down the steps of the slide. I found it funny (in a haha way) that in her rush to see me it didn't occur to her to slide down, a much faster option.

My meeting ended up being cancelled after all these last minute arrangements were made. At this point, things are just becoming comical.

Elise doesn't seem to be feeling very well. She has a runny nose and was coughing a bit tonight. She also is acting very off again. I'm not too worked up about this since I definitely see the pattern that when she doesn't feel well, her symptoms flair. Unfortunately, she seems to be sick really often lately so she's off a lot lately.

Oh yes, I got a call today that Thursday will be from 8-12 at UCLA instead of the 8-10 I was planning. More time to make up for work and a more grueling day for us. I can hardly believe how many evaluations my poor girl has undergone in the last 5 weeks. Too many to easily count. Enough evaluating, let's get to helping her now.

Not an Easy Day

So, our hoped for easy day certainly hasn't been today. Elise woke in a major tanturm an hour after I feel asleep for the night . Inconsolable unless she was allowed out of her bed. I gave in because I was so exhausted. She laid on the floor next to me and instead of sleeping, played for more than 2 hours. When I continued to ignore her, she started rattling B's crib. Since I didn't want him to wake, I took her to the playroom. She just wanted to play there too. Finally, after 4 hours of this Sh*!@*, I pulled her to my chest tightly, laid down and made her stay still. She fell asleep probably 15 minutes later. Eventually, I was able to put her on the floor and I managed to sleep on the couch for a couple more hours.

We took the kids to the pumpkin patch today. Elise showed such a startk difference to last year when we took the kids. Then, I remember her laughing really hard with Brendan while they played in those picture taking things where you put your face through a hole. This year, she was oblivious to everyone around her. She tantrumed at every transition, major tantrums. It was miserable. She didn't ride any of the rides with her brothers. She wasn't interested in the pumpkins other than to climb them. Overall, it was just really depressing to see. What happened to my little girl within the last year? There were signs last year, but the progression is so quick it's just distrubing. How much farther will we go down? I'm not sure we've seen the worst yet.

I did stay up until 11:30 and managed to almost complete all of her paperwork for the UCLA program. I'll be glad when it's done.

I'm trying to figure out if anything was different yesterday. She had such a great day until evening. I gave her chocolate after our grocery store visit (the bribe). That was an unusual item for her. In the biomedical book I'm reading, parents have reported drastic improvements in their autistic children when chocolate was removed from their diet. The reason why this would be is not known, unlike most of the other things parents have reported as being helpful. Anyway, I guess this may be a candidate for more testing. Poor girl if she's to spend her life denied chocolate. Really, is that a life worth living (sarcasm, of course)?

What a Week

Wow! To describe this week as difficult or challenging is certainly an understatement. I was frequently reminded of the Murphy's Law that just when you think things can't get worse, they do (or something on that order). Ok, that sounds really pessimistic. The bottom line is that we survived a really hellish week and we're all still intact, so no worries.

Let's see, here's a rundown of the week since I last posted:

Saturday evening - B pukes, we clean up the house and him and in the midst of that, Elise starts puking. We clean her up and the house and in the midst of that, B pukes again. We clean him up and the house and in the midst of that, Elise pukes again. It was a glorious evening.

Sunday - B and Elise were feeling better, but we pretty much had to stay home all day to be sure they fully recovered. Being trapped in the house all day with 3 grumpy children is not fun.

Monday - Started with hubby being on local travel and not getting home from work until the kids' were going to bed. That meant being alone with the 3 kids, prepping dinner alone and going insane for me. Top that off with having tons of work at work. Oh yes, our babysitter's car died that evening so she had to leave her car at our house and arrange for a tow the next day.

Tuesday - Hubby still on local travel and still not getting home from work until almost bedtime for the kids. Same deal. Babysitter's car still not running, so she was unable to drive Elise to therapy. I had to cancel OT, ST & Floor-time for that morning. Since hubby was unable to drop off and pick up kids, I couldn't even get in 8 hours at the office and the work was piling. Ended up having to work after the kids went to bed.

Wednesday - Babysitter's car still not returned to her running until mid-afternoon. Hubby still on local travel, but at least returned in the afternoon. I had to pick up twins at school. Worked until 9 pm, leaving hubby alone with the kids all evening. Actually, he was smart and decided to pay babysitter to stay until their bedtime. A started puking that evening while I was at work. This literally continued every half hour throughout the night and ended with a major diarrhea accident - sorry for the graphics, but it was beyond gross. I kept retching from the smell making it really hard to clean. Thank goodness hubby handles it a bit better than me.

Thursday - Hubby stayed home all day with a sick A while I took Elise to an evaluation / medical review for the research study in which she is participating. Grueling is an understatement for the experience. Elise went through a 2 hour evaluation followed by a 2 hour intense parent interview for me. Then, we spent 30 minutes for a quick physical exam of Elise and for both of us to have a blood draw. I still have some paperwork to complete and send for this and the doctor called Friday at lunch to complete the 15 minute medical history with me (Elise was too tired for us to finish this on Thursday). Whew! At least it's over. With the commute, our day started at 6:30 and ended at 2:00. It's unbelievable that starting next week that will be our daily life for 3 months, except it'll start at 6:30 and end at 3:30...Poor girl!

Friday - Hubby took Elise to her gastroenterologist appointment. He feels she has a degree of active withholding contributing to her constipation. She's now continuing with the probiotic and adding Miralax daily. She has a follow-up in 6 weeks. Babysitter's kid got sick at school. She brought him to our house (this was ok with us). Other than that, things were actually looking up on Friday. I e-mailed our service coordinator to find out where things are with the ABA therapy. I can't believe nothing has moved on that! I haven't told her about the fact that Elise is starting the UCLA program next week because if things move that slowly when they think your child is getting no help, I can't imagine how slowly it would move if she knew.

Saturday - I was hopeful for a nice weekend, but alas, this is not to be. Hubby woke up sick this morning. I walked the dog with all 3 kids, cooked a pancake breakfast, managed to get them all out the door by 9:40 and took them all to Elise's OT session. Her therapist was very understanding to them being there and actually invited them back anytime because they behaved so well. Not a chance I'll willingly bring all of them to therapy anytime soon. Then, I took them all out to lunch as part of my operation burn off their energy. I brought them home at nap time and took off to get my hair done. I've been looking forward to my hair appointment for weeks now and hubby's illness was not going to prevent me from going. He survived. As soon as I returned home, the twins woke and things were busy again. I took the 3 kids to the grocery store on my own. They did well because I bribed them with chocolate.

Anyway, that's been this week. Unfortunately, I think the next 2 weeks don't promise to be much better. Hopefully, we'll all manage to at least stay healthy.

Elise has done well the last few days. Yesterday, I was on the phone and she came up to me and placed a toy in my hand and pulled me to play with her. That's a huge step for her to initiate play so directly. Yeah, Elise! Later, she played with her brothers before bed. A decided to play a game following her and copying everything she did. At first she was getting really annoyed. Then, when she realized they were playing with her, she became really happy. She was laughing, smiling and really enjoying herself. It made us really happy to see. Same thing tonight, she played in the bathtub with them and was really happy, laughing and smiling, at least for a couple of minutes. Then, they overwhelmed her.

I was so proud of her at the evaluation on Friday. She really did a great job. She participated in quite a few of the activites. She even spontaneously said 3 or 4 words. The doctor tried to engage her to see how she shows emotions. She wasn't interested, but when the doctor had me try, Elise easily engaged and laughed. I also was able to get her to say Go! and to play peek-a-boo with me. She communicated with the doctor to let her know which snack she wanted and which toys. She demonstrated her difficulty with transitions, but that's all good because we do need to work on that. I thought it was a great representation of where she's at right now. At the blood draw, she only cried for maybe 1 minute. She's such a trooper.

Today at OT she wanted to sit on her therapist's lap to play when we were all at the table. Her brothers were arguing and she usually walks away when that occurs. Instead she sought her therapist's lap and stayed put, an improvement to needing to leave.

There have still been some upsetting things, but overall she's done well. She now sometimes does wierd things in public like suddenly yelling "Ahhh!" with her mouth wide open. I guess she's still young enough that it doesn't look too odd, but I worry that soon she'll pass that age where it's overlooked and we'll start getting the judgemental looks. I guess that'll be a problem for another day.

We'll see what tomorrow brings. We're due for an easy day!

Paperwork Galore

So, this morning I woke at 5 and started filling out paperwork for Elise. Wow! I barely made a dent in it and I worked on it for an hour. I can't even imagine how they manage to sift through all of the information we're providing. It's interesting though. A couple of the questionnaires are focused on the parents and how they're handling dealing with a special needs child. One seemed to be geared for coping ability and another maybe for stress/depression. Anyway, I was pleasantly surprised to see that I could easily answer most of the questions as if I'm handling things well. That is until I had to answer about sleep and eating. Who knew? I guess I handle all the stress and cope by increasing my appetite and waking a couple of hours too early every day. I never associated this with Elise's diagnosis, but I guess it did worsen around that time.

Elise had therapy today. Apparently she did well. I feel like she's been really off the last few days. She threw a huge fit when I left for the dentist. I guess she cried incessantly for 30-45 minutes. Hubby finally put her to bed and she fell asleep. Her separation anxiety with me is becoming horrible. It makes me feel so terrible to leave, but I need to get away or I go crazy. Sometimes I really miss being able to stay home with the kids instead of working. I'm really anxious for Elise to start getting more help. She seems really stagnant right now.

I signed Elise up for my insurance at work also. Unfortunately, that means I now have an HMO and have to leave hubby's awesome health insurance plan. Hopefully it's only temporary. Once she's done with the university program, we may be able to move her back to only being on hubby's insurance. We'll see. At any rate, working with a primary and secondary insurer should be interesting to say the least.

Maybe I should take Elise back to the chiropractor since she's been so off lately. Something to consider - I mean, she doesn't have a busy enough schedule yet...(sarcasm).