No Fading of Progress

Elise has continued to do really well. The progress she's made in recent weeks appears to be permanent. I really hope so. I finally have a total 2 year old and I can't believe what a joy it is to say that. No terrible twos here - I have to go with terrific twos. Of course, she technically is 3, but acting totally like a 2 year old is a stage she never went through in the past. I'll take it.

She's improving in all ways. She's interested in playing with us and communicating. She's learning new things almost daily. She's "Happy". She's becoming much more verbal. Even her brothers have noticed and have excitedly said "Elise is really talking now". She's incredibly difficult to understand, but we try really hard to encourage her. I don't remember her brothers ever having to go through this stage of seemingly not being able to make the words understandable. I mean, they did a lot of baby talk, but overall they were easier to understand.

Last night, I was reading a book with Elise. I love that we can do this now. She was pointing to pictures and then I would label the picture. We did this about 3 times through a Dora book. After the third time, Elise began pointing and saying the words on her own. If she wasn't sure, she'd look up in my direction and wait until I said it. Then, she'd try to say it. I was so pleased with how hard she was trying. Dora was "Dodo", Boots was "B", Drum was "D", Bike was "Bi". There were a couple of two syllable words and she would make two syllables, but the ending of each syllable was dropped. I hope that she starts showing these new skills to her speech therapist so that she can truly get the help that she needs. Her desire to talk is really starting to be strong.

We've noticed that when the boys are crazy is when her behavior deteriorates the most. She is more likely to tantrum at these times and will engage in more repetitive type activities. I wish I could always have things calm at home for her, but I guess she will probably learn how to deal with those intense loud situations better since she's exposed to it so much. Her eye contact is also not good when things are wild at home. She seems to get overwhelmed by it all.

Yesterday, we met Elise's new ABA supervisor. She came to the house with the professional who assessed Elise. While she spoke with hubby and I, the one who assessed Elise played in the other room with the 3 kids. After 20-30 minutes, we joined them and the supervisor spent some time interacting with and watching Elise. The one who assessed Elise noted to the supervisor how Elise was demonstrating a lot of things that she hadn't done when she had performed her assessment. This was really the first outside confirmation we've had of just how far Elise has come recently. Just to clarify, Elise was assessed only 2-3 weeks ago by this individual. I am so excited with all of this progress.

Well, I'm off to sleep now. I want to plan a little home New Year's Eve party for the kids tomorrow. We'll celebrate at 7:00 pm instead of midnight, but they don't know the difference yet. Maybe we'll let A stay up to ring in the East Coast New Year and speak with his abuelos. I have a terrible head cold, so I don't know if I'll be up for having one child stay up late.

I'm still feeling happy, happy, happy with all the recent progress. I'm becoming cautiously optimistic. There is unfortunately still a lingering fear that something will happen and she'll again have a regression like she did last December. On the bright side, this fear is very minimal right now. I'm so excited that I barely let my mind go there.

If I don't post again this year then HAPPY NEW YEAR!!!!!

Happy

Christmas was fantastic this year. The kids all enjoyed the presents and were really excited. There were few fights considering the occasion. Elise made it from 7am - 10:30am in our totally chaotic house before having a meltdown. I was impressed with how long it took before she reached her break point. I think I reached mine before she did!

After playing with the new toys from Santa all morning, we took the kids to the McDonald's playland and ate lunch there. It's really sad to say, but we've done this for 3 years straight now and I'm afraid to say that it's becoming a Luna tradition. When my kids grow old they can have their good memories of spending Christmas playing at McDonalds - hahahaha. Pathetic! That's what happens when you have no family in the area and 3 kids at home with new toys are a recipe for disaster.

After lunch, we went to play at the park for awhile. The kids all had a good time there. In the evening, we had shrimp cocktail, cooked a pork tenderloin, opened a bottle of wine for mom & dad and had a nice meal. Then, off to the bath with the kids. Elise took the last bath. As I was drying her off, she had an enormous smile on her face and looked really excited. Then, in a high-pitched voice, she said loudly "HAPPY!". It made my Christmas the most special ever. Not only was this a new word for her, it was the first time she's identified an emotion like that. There is no fakeness with her, if she said it, then she felt it completely. Sometimes I think that everything will work out just fine for her and that she'll indeed live a very happy life.

Hi Santa

Elise has been doing great lately. Yesterday, she had an assessment for the research study that we've been doing the last 10 weeks. Apparently she was upset with it and seemed disturbed that I hadn't said goodbye. I wondered how that would work, but the asssessment went on right after I left from the research session, so there wasn't a comfortable opportunity to say goodbye. We have to do the assessments when we return in January because she became too upset to finish these. That said, she started out great in the part of the assessment I stayed and watched. She was responsive to the tester and was pointing and gesturing "I want". I should have stayed to watch the whole assessment and then I maybe could have helped. However, I'm just so....sick of watching her be assessed. I can tell that Elise is totally and completely sick of being assessed also.

As I was leaving to go into work yesterday, I checked my cell phone voicemail. Thank goodness I did because my boss called to tell me to work from home yesterday. I therefore decided to stay at UCLA all day. It was wonderful to finally participate in things and get to know some of the other mothers. It felt so much less isolating and was a much needed boost of support.

Just before the end of the day, Santa came to Elise's classroom. She was busy eating Goldfish when he entered the room. She looked up and smiled her smirky smile, the one where probably only I and those who know her really well recognize as a happy smile. She then went back to eating her goldfish. Santa called up each child and gave them a gift. Elise received a new doll.

Today, Elise had another good day at school. It was the last day for one of her four classmates. There was a goodbye party. Hubby picked her up and said that she was a dancing queen. She was also giving lots of hugs to the staff. After she got home, we took the kids to a Christmas party at the indoor playground in our area. Santa showed up there and Elise, unprompted, gave him a hug and wanted to be around him. She was so happy to be there. It was full of children and therefore crazy with activity and noise. It didn't seem to bother her much. She'd participate some and then go off and jump in the bouncer. Jumping helps her regulate. Then, she'd join in the fun again. At one point, they played a game where all the kids sat in a circle. I sat with Elise to get her to participate. She loved it and threw a fit when we needed to leave the circle. Who would have thought that Elise would WANT to join in circle time? She's really changing.

Today was also a really good day because my father's surgery to replace his knees was successful. That was a relief to hear and now we're all hoping that his recovery goes as well as possible and that his pain is adequately managed.

I don't know if the change in Elise has anything to do with the meds she started, but the change she's undergone in the last week is fantastic. I hope that it continues for a long time. Once again, I'm filled with hope.

Not Much Work Done

Today I worked from "home". Our offices were being moved. Since I was going to be without a computer while my work station was being moved, I decided I would be more productive at home. I had to take Elise to UCLA for her research study meeting. I brought hubby's work laptop and decided to work there. Well, the building is closed and I ended up having to work in the main lobby of the building. It was really difficult to focus. I didn't end up getting much done, so now I'll be working quite a bit to make up for today.

I observed Elise in the morning. She was very similar to how she is with me at home. I think this is what they term a great day for her, but for me it's her usual day. I guess it's progress that she's finally letting others see the real Elise. She's made great progress for them, but her overall progress is really not that tremendous since a lot of the things they are celebrating are things she's been doing with me for a long time already.

After I brought Elise home, I left right away to pick up A. As soon as he walked in the house, he and B were excited to decorate the Christmas tree. Elise was also interested in the tree. I think she's starting to get the idea of Christmas now. She's a real menance with the tree however. I think I have to ban all ornaments from the bottom of the tree (anything in Elise reach). Maybe someday I can put out decent decorations for the holidays again. It was fun to see how excited the kids were to decorate, but it was yet another huge hassle to do anything with them. I think there were at least 5 casualties that I can think of right now. 3 ornaments, 1 Christmas refrigerator magnet and one candlestick holder. Sigh...

Well, now I need to sit down and do some actual work. The 2 glasses of wine I had earlier to help deal with the Christmas decorating disaster will make doing work now interesting. Who knows, maybe my focus will improve. It doesn't seem like it could get much worse. Several times today I forgot what I was saying mid-sentence. What a run this has been lately.

Improvement

After my last post, things started to improve again with Elise. In fact, by Thursday, she was having amazing days at school and good days at home. Her eye contact has been better, she's more interested in us and her language is blossoming. Her teacher told us that her play level is advancing. She was playing with dolls, putting them to bed, feeding them and even putting them together on a teeter-totter. We've noticed that she lately is totally a toddler. Her more babyish behaviors seem to be dissipating. All good news. Coincidentally, since it couldn't possibly have an effect so quickly, Thursday was the day we started testing Elise using Zoloft. We haven't noticed any negative reactions to it. I became worried a bit this morning when she refused breakfast. It was pancakes, which she usually considers to be a treat. Loss of appetite can be a side effect. She also was incredibly irritable this morning. Everything seemed to upset her greatly. By noon, all of that seemed to pass and she was back to having a great day. She is engaging easily with hubby and myself. She's demonstrating a much more mature understanding of concepts and language also. For example, she totally now understands the concepts of presents. She also was really excited to see us put up our Christmas tree today. I think she may finally get a lot of enjoyment out of Christmas this year.

We're supposed to tape her use of language for her teacher. Easier said than done since anytime I get out the camera, Elise's brothers will take over entertaining for the taping. For us, she also does not use language on command or really if she feels it's something being demanded of her in any way. That means we'll have to catch her spontaneously speaking.

Elise has been doing a lot of pointing and labeling lately. When I read a book with her (yes, I can actually get her to sit and read with me lately), she points at what she wants me to say. That's all that our reading is at this point, but at least she's sharing it with me finally. Yesterday, we went to a park to play. The park has a lake where there are lots of ducks. Elise was very excited about the ducks and 3 times excitedly said "Look!" while pointing at them. She was sharing her enjoyment with us for real this time. It was amazing and wonderful. Moments like this are becoming less unusual.

I finally took the time to do some reading about the EEG test she'll likely have at the hospital around March this year. The neurologist will be looking for ESES. I read a bit about this and, of course, it's a bit frightening. Hopefully she's not having seizures. She may have had in the past, but maybe not now. Her sleep disturbances and her language regression warrant further testing to ensure that she isn't having an issue causing or contributing to her autistic behavior. We'll also learn more, rule out more, when we have her genetic consult /evaluation in January.

We set Elise's case conference for Jan 6. I believe her program discharge date will be Jan 22. It'll be so strange to have this chapter of our lives complete. Who knows what the future will hold? It's been a blessing, although difficult and frustrating, to have had the opportunity for her to receive such excellent care.

Well, as you can probably tell, the rollercoaster is continuing and lately it's been moving uphill. I'd really love to get off this rollercoaster sometime soon as it's starting to seem endless...

I just realized in looking over recent posts that I never wrote about Elise's neurologist appointment. It was quite a visit. Elise was not really very charming as she decided it was a good time to poop, twice, during the visit. Because I'd come directly from UCLA, I hadn't remembered to bring a diaper bag for her. I never bring one there because she has diapers and supplies in her classroom. Anyway, I had to improvise and basically put back on her dirty diaper after changing her twice. Given her constipation issues, this wasn't as bad as it could have been since things were rather, ahem, solid. It was however quite disruptive to the appointment and a bit embarassing since I was so inadequately prepared to handle the situation. Anyway, the doctor wanted to see Elise run up and down the hallway. This was prior to me changing her diaper the second time. The doctor commented how Elise had poor muscle tone. I'm not saying this is not true, because I don't really know what the doctor saw to say this. It is the first I have heard that mentioned in regards to Elise. Her gait was a bit off, but then, when I thought about it, wouldn't anyone's gait be a bit off if they had a giant lump of poop in their pants. Anyway, I'm sure many of you didn't want to know all these details, but being a parent of young children, I no longer have any qualms discussing poop and the story seems really funny to me. At any rate, the doctor's observation has led to a recommendation for Elise to receive OT. Whether her assessment was correct or not, I'll take the therapy recommendation. OT did help Elise a lot in the past with her sensory and regulating issues.

Disturbing

So, it's been a long time since I've had the time to write. I'll try to keep this short because I'm exhausted now and want to go to bed. Elise was really disturbing to see yesterday. She literally spent the entire day in peals of uncontrollable laughter. It was never apparent what she was laughing about and she certainly wasn't trying to share her laughter with anyone else. I have 5 theories about why she was laughing so much:

1. Elise ate something that created a drug like effect on her. Apparently she did eat 3 slices of raisin bread the day before this laughing fit day and that morning she had a full slice of toast slathered with the regular store bought grape jelly (the one full of preservatives & high fructose corn syrup).
2. Elise is becoming worse because she's going to make a leap for the better - whatever, this is wishful thinking on my part.
3. The mold in the bathroom behind the bath molding is now exposed and she's reacting to that and other allergens. My allergies have been terrible this week and her brothers have also been suffering. For whatever reason, allergies seem to really negatively affect the boys behavior, so maybe this is affecting hers also.
4. Elise is playing with ghosts or angels, as in "I see dead people." Hey, I'm reaching for a reason here to avoid accepting the possibility of #5 being correct.
5. Elise is being lost to autism.

Well, as you can see, it was disturbing to see Elise like that yesterday. Today she was supposedly better. I didn't spend much time with her today, so I wouldn't really know. Yesterday, B had to visit the doctor. He has another sinus infection and he was a bit wheezy. He's now back on albuterol, pulmicort and antibiotics. Poor kid. He was a nightmare behavior-wise in the doctor's office. He was hyper wild and not listening. It was actually embarassing and I'm pretty immune to getting embarassed by my kids' behaviors.

Today we made the surprising decision to attempt using Zoloft on Elise. The more we spoke with the team at UCLA and the more we researched and thought about it, we think it's worth a try. I feel it's possible that anxiety is underlying many of the impediments to Elise's learning. We'll start on Thursday morning with a very low dosage. I was much more hopeful before the laughing fits surfaced...

When A was bathing yesterday, he showed us how the molding of the bathtub walls are coming off. Now that you can look behind the molding, there is just a bunch of black colored mold visible. It's on the wall of the bathroom that is shared with the twins' room where B's crib is located. B's doctor said yesterday that it's very unusual for him to have 2 sinus infections at his age since there aren't much sinuses developed at this age. She felt that most likely he is being exposed to some sort of allergen in his environment. Hmmmm...so, in our spare time we're looking to move. I want to give our 30 day notice by the end of this year so that we'll be out by February 1st. You know, things just weren't hectic, stressful and exciting enough for us. We really needed to add a move on top of everything else happening in January. We just don't want to wait any longer because we really believe that this house is making us all sick. I wish we could move yesterday.

Well, that's it for now. We are getting through this and next week is shaping up to be much better than this week has been. Our works will be slowing. the drug decision is made, and B should start feeling better. Oh, I forgot the other thing that happened yesterday is that A wet himself at school again yesterday. That was the 2nd time in 2 weeks after no accidents at school for a year. Something is going on with him and I suspect it's our household stress. How are we handling this? We're going to move and add more stress! hahaha...

I also forgot to write about the good thing that happened Sunday. I took B to a birthday party for one of his classmates. I met a professor from CSUN there who teaches/trains special education teachers. She told me about a preschool at CSUN that Elise could attend with B. The school mixes special education with typically developing role models. I'm definitely going to look into this. There is a wait list, so this would probably not be possible until next fall at the earliest, but it's nice to know this would be possible.

And the Wave Breaks

This is shaping up to be a rough week. Elise woke with a congested sounding cough. She went to school as she had no other symptoms and her discharge was clear. We were told that if we see a non-clear discharge tomorrow, we shouldn't bring her, otherwise we should (duh!). She apparently only performed so-so, undoubtedly because she didn't feel all that well.

There was rain in the morning, which in LA is the equivalent to a major snowstorm in Chicago, in terms of traffic. It was 90 minutes on the road this morning to get Elise to UCLA. Then, I had to get back on the freeway again to go to work. These are my busiest days of the month at work and hubby is very busy with work, on local travel. We've had to hire a babysitter to help with the kids tomorrow night since neither of us will make it home before 7. I hate these kind of days because I don't even see my kids.

Basically, I'm getting really fed up with all the experts telling me how my child is. I know I'm not an expert at this, but I have to trust that I know her. If I don't, then what is there. Her admitting doctor called tonight to discuss putting her on medication, Zoloft to be exact. I can't articulate why, I just know that this feels completely wrong. I can't look Elise in the eyes and tell her that I'm going to "experiment" with a drug like that on her to "see" if it will help her. Honestly, what's truly wrong with her right now? She's happy. She's wonderful. Of course I want to do what is best for her that will lead to the best future for her, but at 3, is her future really dependent on a drug? Why is it necessary to make her into something that she may not be? I like her the way she is. Plus, I just don't see the same severity that "the team" is seeing. I've been estatic with her progress over the last couple of weeks. Why is that not enough? Sorry, my mind is racing right now and I'm really just very angry. The last time I had alarm bells like this about something a doctor suggested, I ignored them and the results were disasterous. We're still dealing with the repercussions every day. I know I need to trust my instincts this time and say no. However, I'm angry that I've been put in the position to have to go against advice. Now, if she doesn't improve, I can spend future years worried that I didn't chose correctly. I strive to live my life without regrets and this proposition presents a difficult challenge to that goal.

Here's hoping that tomorrow is a better day.

Imitation - the greatest form of flattery

Elise has begun obviously imitating us while interacting with us. She's always imitated, but usually in a hidden way. I mean, she would seemingly not be paying attention to what we were doing, but when we'd leave the room, we'd find her doing exactly what one of us had been doing. Tonight, hubby was reading a book with her. It's a book of animals that she is fascinated with right now. He was saying the sounds and overly animating the animal's actions. She was looking directly at him, laughing and then, in a less animated manner, copying what he was doing. It was adorable and very real progress for her.

Today hubby and I went to the parent training course for Elise's ABA therapy. It was for 4 hours. The kids went to an indoor playground with their babysitter and abuelos. The class was actually good. I made no earth shattering, ground breaking discovery on how to help Elise or anything, but it was a good course to put together the pieces of what we've been attempting to do with her. Since the class is so small, only two families, there was more time to get through the material. Therefore, the last class will be cancelled and we basically went through two sessions today. That was awesome news for both of us. I therefore managed to attend 2 of the 4 sessions when I thought I would only get to attend for 1 session. For hubby, he now gets to miss 5 hours less of work during a really busy time for him. He was super stressed about how he would manage to get everything done.

I don't know how much opportunity I'll have to write next week. It's a really busy week at my work also. To top that all off, I am taking the entire day off work on Thursday. Elise has an appointment for evaluation with a pediatric neurologist on Thursday at an office about 2 hours from where we live. Fortunately, any testing she needs done will be at UCLA, the halfway point between our home and the doctor's office. Hopefully, there will be little reason to need to do testing as I have no idea how we would manage a 24 hour type test in a hospital like some of the families seem to have done. I'm not worrying about this yet.

I don't remember if I wrote about this, but I received another great piece of news Thursday. My company's insurance plan year doesn't begin until February 1st. I thought it was January 1st and therefore we would be subject to a new plan year deductible since Elise's program at UCLA won't end until sometime during January. Now, I have the option of dropping out of my insurance plan for next year. It has incredibly high payroll deductions already and they are set to increase next year, probably because of the payments for Elise :0 Not having to pay a new deductible saves us well over $1000. Hooray! That'll leave us more money for private speech therapy if we chose to go that route.

Well, I'm really happy that things have been going so well lately. I'm happily riding this wave. Not to be a pessimist, but this is a rollercoaster, and I just pray that the wave doesn't crash too hard. Maybe it'll just kind of settle and level out.

Great Week

Things are going really well this week. Elise is making some really significant progress. On Sunday, we went to the Santa Barbara zoo. She really paid attention to the animals and had a great time. She even went on the zoo train with little protest. She was only scared for about 10 seconds. She did run ahead and never look back to make sure someone was following her, but other than that alarming behavior, she was great.

She reportedly had great days in school this week. In the evenings, she was showing more repetitive type behavior than usual, but I attribute that to the leaps she's been making at school. She's spent by the time she's home.

On Wednesday morning, hubby & I met with Elise's new service coordinator for the Regional Center (county funding agency). It was for her IPP (Individualized P??? Plan). There are far too many acronyms in this autism world to keep them all straight. Anyway, it's the plan we'll put in place to determine how to meet her needs for the home and community environment. In January, we'll have her IEP (Individualized Education Plan - I remember this one). That'll be the plan that determines how to meet her educational needs. Whew! We liked the new service coordinator much better than we liked the previous one. Hopefully she'll be a better team member, although I'm sure it'll be necessary to be determined and persistant in order to get what Elise needs with all the budget constraints right now. The squeaky wheel gets the grease, I hope. We were honest about Elise's difficulties, but we painted a bleaker picture by emphasizing her weaknesses and not discussing much of her strengths. Hubby laughed at me because of my clever answer to the direct question about Elise's strengths. I answered that she was very determined, persistant, independent & perseverative. I proceeded to point out how unfortunately these great traits were an impediment to her learning and compliance right now, but that I could see a future where they could be a great benefit to her.

On Tuesday, hubby had a parent training course for Elise's upcoming ABA therapy. Apparently they had written down my name for the training. He was told that usually it's the mother who attends. I wish it was me, but I definitely wouldn't be able to take the time off work. Hubby said that he managed to get in touch with his "inner woman" during the course. Apparently it was a bit touchy feely in discussing the emotions and grieving process we're experiencing. He even had to write a letter to introduce Elise to the doctor. It actually was a beautiful letter, it made me cry. He really did find that "inner woman" I guess - lol. The second class is tomorrow. Since it's Saturday, I'll get to go also. I'm anxious to learn.

On Thursday, hubby met with the ABA provider to begin Elise's assessment process. It was basically filling out a lot of forms and explaining the process. He had to provide a full history. We're expert at doing this now because we've done it so many times.

I took Elise to her research study on Thursday morning. It was our videotaped session. We just played together for 10 minutes. Then, I took her to her class and came back to discuss it with the researcher. Elise is really showing progress and I'm becoming much more confident about how to gain joint attention in our play. We're beginning to have a lot of fun playing together - on both ends. After the research study, I met with the program's social worker again. Hubby met with the care coordinator in the afternoon. They discussed how Elise could do so much more, but something is getting in the way. She asked whether we would be open to medication. He answered that there would have to be a strong medical case made for us to consider that. Basically, we think that they don't really get her. She's so rigid not just because she's autistic, it's because it's who she is. I know that as therapists they know a lot more about autism than I do. However, I do know my own child better than anyone. She is who she is and that is a very determined, strong, fiesty, independent young girl. She will not fall for anything that she considers to be a manipulation. Well, she reminds me of my adult self and of her brother. Hubby and I had a good laugh later that if Elise, who is autistic, is so rigid that she may need medication, they should meet her older brother. He's not even autistic and he puts her to shame in the rigidity department. Seriously though, unless some proven medical reason STRONGLY indicates that medication is needed, we will absolutely not medicate her. We have serious difficulty imagining any reason justifying doing this to her. I love her the way she is, even if she is really difficult to teach. Deep down, I love and admire that aspect of her personality.

Today hubby met with her teacher. It was all good news of positive progress. Yea Elise! She's apparently showing really good receptive language skills. We've noticed the same at home. She understands so much now. We also went to her brothers' Holiday show at school. It was precious and I was really proud of the boys. I wish Elise could have been there and performing with them. Maybe someday...

I've saved the best for last. Elise has done some really significant things this week. She is now putting together sentences with her gestures and her babbling sounds are becoming much louder, constant and varied. She has a beautiful voice and I love hearing it. In research this morning, Elise was looking through these colored blocks that you can see through. I was interacting with her while she did this in order to play. She stopped looking and put it up to my eyes so that I could look through it. Sharing an interest is an awesome development. She also was expanding her play methods by using the various sets of toys together and using them in different ways. She even did a much better job of giving me a toy so that I could take my turn. In class, her abuelos saw that she was doing a matching game perfectly.

Last night, Elise was by herself looking through a toy magazine. She picked it up, still open to a page, and carried it right over to me. She then showed me a picture of a toy. I wasn't sure what she wanted, I was just excited that she brought the magazine for me to see. I turned the page to try to look with her. However that wasn't what she was trying to communicate. Since I didn't immediately "get" what she wanted to communicate, instead of throwing a fit, she returned to the original page, gestured "I want" and then pointed to the picture again. I was SO proud of her. I wanted to run right out to the toy store to buy it for her right then as a reward for sharing that with me. Of course, the problem would be that her brothers would pick up on that technique right away - haha.

Well, I guess I should think about sleep now. Tonight I'm filled with hope for Elise's future.

Giving Thanks

So, since it's Thanksgiving tomorrow, I thought maybe I should focus on the positive things we have versus the gigantic negative of trying to convince Elise that it's worth it to interact and communicate with others.

First though I want to note that Elise has been continuing to have a lot of improvement lately. No miracles of course, but steady improvement. Today I picked her up from school and was able to observe circle time where they sing lots of songs. She sat without prompting and stayed put with no problem. She participated a bit, but mostly was somewhat disengaged to the songs & motions. She acted super tired. I couldn't figure out why she seemed so out of it, but then I saw that today was pizza day and she'd had two servings of pizza at lunch. This is the second instance recently where I've noticed odd behavior after eating pizza. I'll have to watch this closer, but pizza is really the only source of a lot of dairy product that she has. I'm really wanting to remove all casein from her diet, but I'll hang on until after January when she completes the program so that I'm not changing too many variables at one time.

Let's see, things to be thankful about: ELISE. She is an amazing little person. Her hugs and kisses are regular occurences now, yet special everytime. I'm super thankful that we were lucky enough to get a spot in the program at UCLA and that my insurance seems to be covering it really well. I'm thankful that Elise's brothers are excited that Elise is learning to play with them and get excited to hear her speak. I'm thankful that all 4 of her grandparents have taken the time to come help us survive the logistical nightmare of managing this program while caring for all 3 kids and working full-time. I'm thankful that we've been able to obtain the resources financially to provide the best care for Elise and best hope for her future. I'm thankful that her nanny has been so supportive and is so amazing at learning the techniques to help us teach Elise. I'm thankful for our friends and family that take the time to read this blog and let us know that they are thinking of us and wishing the best for Elise. I'm thankful for the network of parents with autistic children that are willing to share their experiences with us. I'm thankful for her team of specialists that are working so hard to unlock the key to teaching Elise and other children with autism. I'm also thankful for having a husband who is equally dedicated to providing Elise the opportunities for success in life. I'm sure there's more, but this is what I'm thinking about right now.

Happy Thanksgiving everyone. Hopefully next year we'll be able to share a holiday feast with many of you.

Good Signs

We're noticing a lot of positive changes in Elise now. On Wednesday night, she played with A & me. It was a really basic game of stacking these magnets on a doll thing to dress it. We were only creating a pile and then breaking it apart and rebuilding it, but once I showed A how to play best with Elise, she tolerated playing with him for over 5 minutes. Then he got hyper and wild and she became annoyed, but it's a start.

She's communicating consistently for the first time in her life. This is by far her biggest achievement to date. It's not yet with words, but she's finally consistently using a gesture. She uses her open hand to touch her chest to tell us "I want". She does this 100% of the time now, generally without prompting. She's always been able to use gestures and even words, but NEVER has she done anything 100% of the time like this. I'm very hopeful that this is the first of many new communication skills. I believe wholeheartedly that she will be verbal and conversational someday. It's just going to be slow-going and essentially on her own time schedule (with regular reinforcements from us). She's smart, so she may begin to quickly figure out that it's easier when she can communicate more freely.

Today we went on a bike ride. I was with A & her. I pushed her on her tricycle and she even pedaled a bit (a new skill for her). At one point, A got off his bike and decided he wanted to use the tricycle. I was willing to push her on his bike since we were close to home. Usually she's dying to sit on A's bike. Well, she was not having any of this change. She saw what A wanted and she patted her chest emphatically twice to signify I want. Then, she pointed ahead and said "Go!" Then, in case we didn't understand what she wanted, she proceeded to reach over and push A out of her way. The pushing isn't nice, but I was gushing with pride in her new communication skills. She was essentially putting together a sentence.

Another big change is in how her brothers are responding to her now. It's like all of a sudden they're, without prompting, including her as a peer more. They really used to just ignore her most of the time. They were all 3 in the pantry walk-in closet on Friday night. A had some Skittles in his hand. When I walked in, he was giving them to Elise because they were her share. She was just looking at his open hand suspiciouly. It was obvious she wanted them, but I think she thought the generosity must be some sort of trick. Funny. When I told her to take them, she quickly did. Today, B was playing in the yard with some "berries" he'd picked off a bush. Elise had been watching her brothers do this and at one point looked like maybe she was trying to join them. B was asking me if I wanted some. I told him that maybe his sister wanted some. She was off by herself playing on a bike. Usually, she would ignore anyone approaching her because she'd be in her own world. B went up to her with a berry in his open hand and said "Here Elise." She actually looked and then took it from his hand.

Later, hubby was throwing himself the baseball and hitting it with the bat. She started picking up the ball and bringing it back to him to play again. I realize that dogs will do this, so one normally wouldn't brag that their child has developed this "skill", but when you have a child like Elise, you realize what a monumental step this sort of interaction is. That desire to interact with dad was great to see. It was followed by a big hug and a "Daddy" word. She is beginning to show a strong desire to enter the world instead of remaining in her own.

Her teacher mentioned that during this past week, they noted a big change in her style of play. She began using much more Child as Agent type play. For example, she undressed a doll, put it to bed, rocked it, gave a bottle and fed it. She's played like this before, but again, the quality and quantity has improved.

This afternoon, she was alone in the playroom with abuela. A had left out his Halloween candy. She picked up a candy bar and gave it to abuela. Abuela opened it and took a bite. Elise was fine with this, like she was sharing. Then, abuela asked if she wanted it. Elise then took it and ate it.

We're officially back on an upswing. I hope we swing really high this time and that the downhill is very short and doesn't fall very low.

Disappointing Day

Today I called in sick to work so that I could spend the day at UCLA learning more about what Elise does and the help she is receiving. I've been feeling so uninvolved lately. I'm such a geek that I never fake a sick call to work, so that's been stressing me. I just felt so desperate to get more involved there.

Anyway, there were all kinds of meetings booked in the observation room this week, so I didn't have much to chose from for seeing her. I signed up for 9:30 am to observe OT for half an hour. Then, I signed up for 11-12 to observe Elise in class. We also had our research study session at 8:00. The morning started with a hellish commute because of a 3 car, 2 motorcycle crash on the freeway. The session went well until about 8:20 when Elise decided it was a good time to have a bowel movement. That kind of wrapped things up. I then went to my meeting with the social worker, but somehow she thought we were meeting at 8 instead of 8:30. I don't know how that happened because I don't think I ever would have agreed to 8 when I always have the research study at that time. We therefore only met for 5 minutes.

At 9:30 I went to the observation room and it was locked. She hadn't started her session yet and the therapist was busy with another child whose mother was already in the room observing. That left me standing in the hall for 15 minutes feeling out of place and awkward. I know that's my own issue, but it was still annoying. Then, I finally get my turn to observe. I thought I would still get to see her for around 30 minutes, but her session ended at the appropriate scheduled time. Therefore, I only watched for about 15 minutes. Better than nothing I guess.

I anxiously waited for 11 because I've never had the opportunity to see Elise in class. At 11, I went upstairs. I opened the door to the observation room and there were what appeared to be several people inside. Again, I felt really awkward and unsure how this whole thing worked. I went downstairs and asked a couple of other mothers how they manage to ever watch their kids and was this a usual occurence. It hadn't happened much to them, but since they're there often, it's somewhat inconsequential when it does happen. Anyway, they told me to ask someone in charge of the program about it. I went to her office and explained the situation. I was really upset by this point because it was already 11:15. I can't stand to be emotional in front of people, but I was close to tears because I was just so disappointed. She went and spoke with Elise's teacher. The teacher invited me to hide in the back of the classroom and observe Elise there. I resisted because I thought Elise would notice me there. The teacher said it would be ok, that if I didn't talk, Elise wouldn't know I was there. Yea, before I even sat down, Elise saw me. She started throwing a fit. They had her come say hi to me and then allowed me to sit with her. I felt so out of place. By this time, it was 11:30. The room had opened finally, so I said goodbye to Elise and left. Of course, she threw a massive fit at my leaving. I spent the next half hour watching her throw a fit worse and longer than I've ever seen. I didn't get to observe anything positive. What a waste of probably the only day I'll have to watch her while she's in this program unless I quit my job.

At 1:00 pm, I met with our care coordinator. I've never met with her before because of work. Hubby has attended all of the meetings with her. The meeting was nice to get a chance to finally hear what & how Elise is doing first-hand instead of filtered through hubby. I guess that was one somewhat bright spot in the day. However, it was also discouraging in that I have this feeling that no one is quite "getting" her yet. I feel like Elise is playing a game with them all, toying with them. I guess people find that hard to believe since she just turned 3, but I know that, intentional or not, it's what is happening. It's frustrating because if she doesn't allow them to see how she truly is, how will they be able to help her the best? It's true I've seen some progress, but I feel like the pieces are still really far from coming together.

I did get to pick up A from school. Of course, I wake up Elise to go into his school with me. She's cranky about this and still exhausted. She sees a toy she wants and starts to throw a fit when I tell her no, it's not hers. Lovely. Then, as we're walking back to the car with A, I remember that I don't have a car seat for him. Given the situation, bringing him back to school would have had him in tears and the return of Elise's fit. I just couldn't bear that. I put him in the back seat without his booster and used the shoulder belt. He's too short for that, so I was scared driving the 2 miles home. Then, as we cross into our neighborhood and I breathe a sigh of relief that we're almost home safely, I see a police car driving towards us very slowly. I'm thinking how great it'll be to top off the day with a ticket or something worse for driving A without a booster seat. His little curly haired head is just visible through the window so it's obvious he's too small. Fortunately my fears were unfounded.

What a day! I have to say that it was TOTALLY not worth it to call in sick. Now I get to go to work tomorrow and deal with everyone's fake "concern" (in other words, those jealous co-worker work-a-holics who want to make sure that everyone is as miserable as they are) and accomplish two days worth of work in one day. Augh!

I really hope that we have a good weekend... :0)

Getting By

Things have been going fairly well lately. Saturday abuela arrived in the afternoon. The kids, including Elise, were happy to see her. On Sunday, we took the kids to an indoor playground. You know, it's too "cold" here to play outside at the park - it was only in the fifties in the morning :o) Anyway, Elise took a long time to warm up and play non-obsessively with the toys there. There was only my family and another mother with her 2 kids there. Her daughter was 23 months. Watching Elise take so long to warm and seeing this sweet, outgoing almost two year old just really hit me hard for some reason. I felt very depressed. Sometimes things like that just make me realize how different Elise is. That said, Elise ended up having a great time and playing well.

On Monday, it was back to school for her. Oh, before I forget to mention it, Thursday was another insomnia night for Elise. She was up from 1 am -4 am. Poor girl was so tired at school on Friday that she fell asleep in the ball pit during recreational therapy in the afternoon. Elise supposedly had a really good day at school Monday. Hubby picked her up and observed her during circle time. They sang "The Wheels on the Bus". At the end of the song, they waited for her to fill in the word town. She said nothing. The other girl in her class responded Town. They made a big fuss over her talking. This apparently inspired Elise who then said "Town". I thought that was cute and so like Elise.

Today I attended the parent meeting for the program. It was nice to hear from other parents going through things the way we are right now. I also discovered that Elise will get screwed over because of her birthday. In our state, the cutoff date for students entering kindergarten is 5 by December 1. Since Elise is a November birthday, she fits the criteria. However, given that she is so delayed and would be so young for her grade (particularly if we move to another state where the cutoff is earlier), we planned to wait a year before putting her and her twin in kindergarten. This would also leave them 2 grades behind older brother instead of only 1 grade. We're hoping being farther apart in school would ease some the extreme competitiveness between the boys. Well, if we don't send her to kindergarten just before she turns 5, then we're essentially "opting out" of services through the school district that year. We'd go for one year without public school options for her. I understand the rule, but it's just so annoying. I know starting her and her brother in kindergarten at 4 would be wrong for them. I just didn't realize there would be such a penalty for having to make that choice. Oh well, something to worry about for the future.

On to the great news! Elise seemed off to me this evening. However, just before bed, I found her standing in her room and softly singing. She was so quiet, that at first I only noticed that she was making some different hand gestures. When I got closer, I clearly heard her singing round and round and making the motion that goes with the "Wheels on the Bus" song. Then, she moved on to making the Shhh! sound with her finger to her lips and said "Mama, shhh!" meaning the mommies on the bus go "shhh,shhh,shhh". How awesome is that? I can't believe she's learning how to sing songs on her own now. Hurray for Elise! I made a big fuss over her - I think she felt proud of herself, as she should.

We scheduled an appointment with genetics today. We'll have that appointment in mid-January. The neurologist appointment is early to mid December and her IEP is mid to late January. The parent training course for ABA therapy starts in early December and Elise's ABA assessment should begin around the same time. Things are finally moving...

Hope

The week has not been all that bad. Elise woke up sick on Monday morning. Her breathing didn't sound good. I gave her some of Brendan's Pulmicort through the nebulizer. She immediately felt much better. I still scheduled a doctor's visit for her because I wanted her back at UCLA as soon as possible and I'm basically really paranoid about her having breathing difficulties after our traumatic experience last year. Anyway, I get her to the doctor and find out that she is fine, per usual. I never understand why when I make the judgement call not to see a doctor, it's something potentially serious. When I decide to take her, it's nothing but a cold. Funny how that works. By Monday evening, she was sounding very congested. I decided to keep her home another day. Well, she woke up at 7 on Tuesday morning and honestly seemed fine. It was too late to commute her to UCLA, so she had another day off school. Wednesday was a holiday for her from school. Therefore, today was her first day after 5 days off. I was afraid she would resist going back, but the opposite occurred. She seemed really happy and excited to be there. I had to make her look at me just to say goodbye. She was too busy playing!

We had a research study play session this morning. I think I'm really learning a lot about how to best play with her. Today they videotaped me playing with her for 10 minutes and then discussed it. It helped a lot. I could tell the difference in the things I've learned over the past 3 weeks and how well Elise responds to it. We're so blessed to have her in this program and this study. I'm feeling very hopeful.

Hubby met with the care coordinator for the program today and I met with the social worker again. Our meeting with her teacher tomorrow is cancelled. I'm hoping to take a day off work next week so that I can observe her for a couple of hours. Of course, this will mean that I have to take off sick since they don't seem to allow any personal time. I have to make up any hours I miss and with driving Elise all the way down to UCLA, there are just not enough hours in the day.

Elise now has an appointment scheduled with a neurologist in December. We also have begun the steps to obtain an appointment with Genetics. I don't really expect that anything will be found in either evaluation/review, but we just don't want to miss any underlying health condition. The admitting physician for the program referred Elise for both neurology and genetics.

The lawn is no longer a sewer. The plumber arrived on Monday and cleared a lot of tree roots from the line. We're repairing the car tire hopefully on Saturday (again)... Abuela arrives in the afternoon on Saturday. It'll be nice to have the help and the kids are looking forward to seeing her. My busiest time of the month at work is done. That's a relief. That place is just crazy, there's no other word for it. Way too short staffed, they're just looking for lots of "free" labor. Hey, if I can do the work of 3, why not? seems to be their philosophy. Oh well, it's paying the bills for now and providing Elise's insurance coverage for treatment. It's not buying them any loyalty, that's for sure.

Here's hoping for continued good news.

Seeing Changes

After spending a lot of time with Elise this weekend, I'm finally seeing some of the changes others have been seeing. She seems to be developing a desire of sorts to be part of our world on a more consistent basis. She also intiatied a hug with 3 kisses for me this afternoon. Her communication is slowly improving, but the desire is where I notice the biggest difference. It's pretty amazing to see and provides me with a lot of hope for her future.

That said, there is still a long way to go. The weekend was very hard for her. We were regularly in loud crowded places (Chuck E Cheese & a festival). I had a chance to start working on her wandering behavior. We put both A & B in shopping carts and tried to let Elise walk at the grocery store. It took all of maybe 3 seconds for her to dart away from me. That convinced me that the reason I've not seen this as a huge problem is only because we pretty much confine and control her in public by carrying her and/or strapping her to a stroller or cart. I've been "playing" with her a lot now where I let her run ahead at the park or out front of our house and then step in front of her with my arms outstretched and say "Stop!". I'm trying to make it a game, but where she starts to learn that stop means she needs to stop. This was her teacher's suggestion and I think it'll work well, with patience, consistency and determination.

I think Elise really enjoyed her birthday. She turned 3, of course, but her development is definitely way behind 3. She reminds me of an early 2 year old. It's strange because physically she's 3. She kicks a ball awesomely, strings small beads, colors circles, climbs difficult play structures, can stop herself when sliding down the fireman's pole at the park, and other difficult motor tasks. Yet, she speaks like a new 1 year old and socially acts like a new 2 year old. It's odd to see how her development is so stalled in some areas and above average in others.

Hubby spoke with our clinic coordinator last Thursday. Apparently, Elise has been her usual non-compliant self for their testing. They didn't think she could kick a ball or stack blocks. She's a champion at both and has been for at least a year. She just refuses to do what she doesn't want to do. It seems they are very understanding of this and know that obtaining compliance is key for her development.

Elise did great in our research study session last Friday morning. She stayed actively engaged in play with me for nearly the entire 30 minutes and only had one very small tantrum. It made me feel so much better. I think she was happy there. I'm learning a lot about how to play with her.

Saturday, the whole family went to Elise's last OT session. Her therapist brought birthday / goodbye cake for us to celebrate together. It was sad to say goodbye. She helped us a lot with Elise and has been a great support. I get a bit emotional with all the goodbye's we've had lately. Today B was saying how he wanted to tell Elise's floor-time therapist about what he did on his birthday. We had to remind him that she wouldn't be coming over anymore. :(

In early December, we start our ABA parent training course with the agency we've selected to provide Elise services after we finish the UCLA program. We'll also probably use a private speech therapist on top of whatever speech services Elise gets from the local school district. Depending on her needs, we may obtain some OT services also. Hopefully the school district will provide some OT for her.

Things continue to be insane. We have a plumber arriving tomorrow (hopefully) because we have sewage coming up in our front lawn and we're not able to use one of our toilets and the other is on its last leg. We can't use the dishwasher or washing machine either until the plumber gets here. The tire we repaired last week on the family car is super flat now. We somehow have to manage to get that fixed. Grandma & Grandpa fly back to their home tomorrow. It'll be quite a continued balancing act to get everything done this week. Reinforcements in the form of another grandparent visit arrive on Saturday, thank goodness. To top it all off, this is my busiest week of the month at work and promises some overtime. With the birthday celebrations, we didn't manage to get our normal weekly grocery trips done. It'll be interesting working in shopping trips to such a busy week. We'll survive, it'll just be a struggle. I forgot to mention that my back spasmed yesterday. I spent the day in a quite a bit of discomfort. Today has been much better, but the muscle is still quite tight. Then, my acid reflux flaired in the evening. Stress definitely takes a toll on one's body. I noticed today that my roots are showing pretty much all gray now. Time to try to squeeze in another salon appointment - too much... Oh yeah, the battery in the family car died yesterday also. Fortunately we were in our driveway, so not a huge deal. We jump started the car and took it in for a new battery. It's becoming sadly comical to see what inconvenience will next befall us.

Signing out and going to bed. It should be one hell of a week. I'm just going to focus on the goal at hand - continued improvement for Elise.

Too Much

It's been a rough week again. Others tell me about how well Elise is doing, but I have yet to see it for myself. Apparently she is using several new words at home and is more tuned in to others. Since I'm working so much now, I get to see her for only 1 or 2 hours each day during the week. It's late when I see her, so she tends to just release all her pent up stress when I'm around. The only change I've personally seen is her throwing a lot more tantrums. The program's social worker today assured me that this is very typical. However, I'm really anxious to see some improvement. It's too easy to slip into a hopeless feeling.

Today was Elise's last session with her floor time therapist. It was a bit emotional for me to say goodbye. We learned a lot from her and she's been very supportive during our discovery of Elise's autism. Floor time is not the best therapy approach for Elise, so we really won't be using her anymore. It'll be a new chapter of ABA therapy for her after this. Saturday will be Elise's last session with her Occupational Therapist. The therapist has invited the boys to join Elise in the gym and we'll have a goodbye party.

Besides feeling like I'm on the verge of a breakdown, things are going well. I am still hopeful, I think I'm just really tired and stressed. Work is terrible right now, the worst place I've ever worked and, trust me, that is saying a lot. I've never had a job where I actually wished that I would get fired. It's seriously that bad. I think the place for me is to be with the kids and working closely with Elise. However, that doesn't pay the bills or provide adequate insurance coverage for Elise. Things should begin looking up soon.

That's all for now. I'll write more once I start seeing Elise do things that are noteworthy. Currently, the only noteworthy thing is excessive tantrums and hitting / pushing. The program is trying to work on making her more compliant. I'm sure the autism factors into her noncompliant behavior, but her personality is a huge factor. I know because she has a non-autistic older brother with the identical personality. Compliance is not something they do easily. As their pediatrician eloquently put it "Your children are not people pleasers." That's a riot and a perfect assessment. They are rarely motivated to do things in order to please others. Praise is not very motivating for them. B is a bit more of a people pleaser, but he can be pretty stubborn also. I wonder why my children are this way - hmmmm...

It's been a long time

Things have become so crazy over the last couple of weeks that I haven't had a chance to post. I pretty much go right to sleep after putting the kids to bed. Our days start at 5 am sharp now and are non-stop until 9 pm. It's exhausting.

Elise is beginning to adapt. She became sick after my last post and had to go on antibiotics. She had strep. She ended up missing Mon & Tues of her first week in the UCLA program. By Weds, we sent her back. She was still not feeling great, although she was no longer contagious. She was not having anything to do with the program. She was full of tantrums for them. Apparently some went as long as one hour. On Thursday morning I took her in for our research study play session. She threw such a violent tantrum during the session. I'd never seen her like that. It was seriously disturbing. She was throwing herself backward to the hard ground. I thought she would crack her head. She was thrashing and swatting so much, that I got swatted a few times. She was taking off her shoes and throwing them across the room. It was violent. I left her in her classroom. Good thing they're trained professionals and know how to handle those sort of things even better than her own mother does! They have a big turtle toy filled with air that they lay her on top of when she tantrums. They've since discovered that if they ignore her, she stops much quicker. We've been ignoring much more at home and the attention getting part of the tantrums is improving dramatically. She is incredibly stressed overall.

We have noticed some improvements at home. In general though, she's so stressed and exhausted by the time that I see her, I mostly just see increased tantrums and odd behaviors. She now regularly gives us hugs. She is more interested in greeting and saying goodbye to others. She has been practicing pointing at things. So far, it's mostly indiscriminate, but I think the idea is starting to register. She has added some words. I've heard her say her brother A's name - it's short and easy to say. She now calls only 3 people by name, mommy, daddy & A. She said lemon while pointing to the lemon tree in our yard. She said toes while holding her toes after singing the head, shoulders, knees and toes song. There have been a couple of other new words, but I can't think of them right now. Oh yeah, she sometimes points and says "Dat" when she wants something. That makes me so happy! She's been learning to kiss. Her teacher plays with a doll with her and kisses it. Then she hands it to Elise to kiss. I didn't know this was anything she'd been doing in the program. I was kissing her and exaggerating the "MMMM" with my lips pursed. She started imitating my lips. It was so cute. A kiss will probably not be far behind.

Things are just really hard right now. It's so important to do this, but I just can't even begin to express how hard it is. It's hardest on Elise who is working so much everyday. The drive is killer. The time committment while working full-time is difficult. It's just difficult on all of us. The boys are having a hard time not spending as much quality time with us. It's hard. I think it'll all be worth it if we and Elise learn how to work best with her. Her teacher and the researcher I work with have both commented that Elise is obviously very smart. That makes me proud and makes me think that maybe they do get her. Lord knows that her previous speech therapist never picked up on that and had a tendency to act like Elise was slow. Perhaps that was why she had no luck getting good progress from Elise?

More later.

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).

More frustration

Today I had a talk with my boss about the commitment of time I have to make for Elise's treatment. I prepared ahead of time and laid out in direct terms how I planned to still meet all the appropriate deadlines. There was no statement of concern other than about how it would effect her and the company. The primary concern was how I would still manage to work 40 hours each week. I didn't expect any different, but I still feel really hurt by the lack of basic human compassion demonstrated. Hubby asked me if I thought the response would have been different if I'd said that she was diagnosed with cancer and I'd have to have a schedule flexible enough to meet her treatment schedule. Maybe it would have been, but I actually kind of doubt that. To me, treating her autism is no different than treating a cancer. We want to meet the challenge head on, fight the battle and never give up on a "cure". I know that conventional thought is that autism is not curable. I personally refuse to believe that Elise, while likely spending her life as an autistic, will not reach a point where she manages the symptoms so well that she will for all practical life purposes be cured. That is my ultimate goal in all of this and nothing, particularly the crappy place where I work, will stand in the way of this goal. That said, I'm going to try to suck it up and make this work for a few more months if for no other reason than having the additional insurance coverage and paying off our debt. The whole situation has given me an incredible headache.

Other than that, not much to post today. I'm just feeling really down right now by the lack of support. I've seen this happen so often to others at work. The phrase "kick 'em while they're down" has frequently been a thought I've had when seeing how employees have been treated. Well, the last few years have been my turn, first with the twin pregnancy and now with Elise's health. Finally, I'm just bitter. I just want to go somewhere where I never have to actively participate in the cruel business world again, somewhere where people are compassionate, supportive and helpful. Maybe I should just start fully believing in pretty pink unicorns and fairies while I'm at it...

Hectic Times

The rush continues. Today Elise had a few therapy sessions and also had a health assessment with the local school district. She did well. Hubby took her to therapy and I took her to the health assessment. This means that I still have time to make up at work and hubby had to return to work tonight. I guess that in therapy she was jumping on a trampoline when another boy joined her. She was really excited to play with him and even once kind of hugged him. She was laughing, making eye contact and really happy.

I spent some time on the phone today learning about a research study at the university. Elise qualifies for the study and I signed her up for it. It will run concurrently with the partial hospitalization program that she starts on the 15th. We'll have to take her to a detailed assessment at the autism research center where we can have genetic testing and other things done, all for free. Works for me. The more info we can discover, especially for free, is great. It requires an additional 1 hour of parent involvement each week, but it'll help defer our costs, so work will have to deal I guess. I need so many hours off already, what's one more each week?

We received the forms for the partial hospitalization program today. I now have a signed form from Elise's doctor to get a Disabled Person Placard for parking. I guess the parking is $11 a day, so the program provides the placards so that parent's can park for drop off and pick up. Seems strange to me. I swore I wouldn't take advantage of it and use it anytime other than for the specified purpose of taking Elise to the program. However, when I returned to work after Elise's health assessment today and had to keep winding up through the parking garage, I kept looking at all the great spots that would have been available if only I had the placard. Temptation is a difficult thing.

Things are generally going well. We're all just really stressed. Everyday seems to bring some new major stressor, even if there are good things about the stress, like maximizing help for Elise! I could just really use some time to slow down and relax. With an autistic child, there seems to be no end in sight for all the work.

Status Quo

Today I'm feeling much less in despair than yesterday, but I'm still very sad. Elise had a rough morning. She was difficult to engage and was doing a lot of stimming. By afternoon, she had taken care of her business for the day, thank you Miralax, and was back to doing well. I actually even managed to get in a "therapy" session playing with her. She helped me take clothing out of the washer, push the laundry basket to the dryer area (separate rooms in our place), and put the clothes in the dryer. She also helped me put dishes in the dishwasher and mix the pancakes in the morning. We played on her scooter and she said "Hat, Bike, Up, Go & Mamma" in about a half an hour time frame. For a child who was nearly non-verbal only a month ago, this is fantastic.

We also purchased beads and pipe cleaners at the store today. She easily strung the beads onto the pipe cleaners and maintained her attention to this craft for a 7 minute stretch once. At the store, we showed her a costume of tinkerbell and her face just lit. She's becoming a girly 2 year old finally! The beads she selected for our craft were mostly pink & she loves sorting through the stuffed animals and finding the pink ones. Yesterday at Costco, she was in awe of some of the Barbie doll sets. At the store today, we let her play with some of the toys. When it was time to move on, we'd tell her that at the count of 3 she had to give us the toy to put away. She did great transitioning. No tantrums at all. It's awesome that she liked the Tinkerbell costume because a friend of mine called today to ask if we would like a full set costume of Tinkerbell from the Disney store for Elise. Her daughter used it last year for Halloween. Elise will love it.

That's about all for today. Oh yeah, I forgot to mention that she attempted to engage her brothers in play tonight. I was so excited. I either haven't seen her do that in many months or I've never seen her do this. Can't remember which, it's all a blur. Either way, it was really special to see. Unfortunately, the boys missed the cue. I hope she wasn't discouraged. She also almost put together a puzzle that I've seen several adults (myself included) have to take some time to put together. She really seems to have a strong ability to visualize how things fit together.

Tomorrow Elise has school and nothing else. Tuesday is her health, vision & hearing screening for the school district. She also has speech and floor-time therapy Tuesday. Her schedule is becoming more intense than anyone else in the family and she's only 2. I just want to do everything we can to help her. Sometimes, like in the afternoon & evening today, she seems almost in reach. Then, when she's like she was in the morning, I feel hopeless and so sad. There's just no way to know what her future will hold.

Up and Down

Today was a busy day. Elise had occupational therapy in the morning. Hubby took her and said that she did well. The boys had haircuts in the morning and then played in a park. After lunch, I had a filling removed and a temporary cap put in place. Then, off to Costco and dinner out. In between it all, I tried to fill out and organize the paperwork that has been piling with all of Elise's appointments, evaluations and you name it.

Yesterday, hubby and I had lunch with his colleague and wife. They have 2 boys, one in college and the other in high school, that are autistic. It was wonderful to have their support and talk with them about their experiences with everything on their 15 year or so journey. We talked about insurance issues, special education, what they found helped their boys the most, the doctor Elise is seeing, the UCLA program and lots of other things. They were particularly helpful about the IEP (individualized education plan) process. They've been through it many times, the wife's sister is a special education teacher & the wife is an experienced advocate for special education concerns. She is going to send us some excellent materials prepared by a lawyer teaching parents how to navigate the process.

To me, Elise has seemed a bit more off the last couple of days. Yesterday she was getting visibly overwhelmed often and was harder to reach. Today was better, but not as good as during the week. She ate McDonald's for lunch and pizza for dinner - not only was this not nutritious, I really believe she doesn't tolerate these types of foods well. I'm becoming quite a believer that dietary changes will help her. We were moving towards the GFCF diet and, except for eating out, have pretty much eliminated artifical flavouring, articifical colors and dyes & preservatives and now eat more organic fruits and vegetables to help reduce the pesticide exposure she has. The UCLA program suggested we not continue changing her diet so that we'll know the effect of the treatment she is receiving. If she's undergoing dietary changes and behavior therapy, how would we know which is helping (or not helping) her? That sounds reasonable, so we're keeping things where they are for now. Once the program ends, we'll likely resume and implement the full diet. At the very least, I'm very suspicious of dairy products for her. After her terrible diet yesterday, she's totally constipated again today. Keep in mind that she's still taking an antibiotic that has a side effect for some of diarrhea. She's the opposite! Of course, I also forgot to give her the probiotics this morning.

What's really made this a difficult day is that I'm completing yet another questionnaire for evaluation. The last few weeks, I've been really successful and hopeful as I've focused on her strengths and the victories we've had recently. Well, completing the questionnaires just drives home her deficiencies. It's really difficult to see I have to honestly answer "Some of the Time" to the statement "You can easily get your child's attention by approaching him or her, or moving him or her around slowly." I can't even honestly answer "Half of the Time" to that statement. Then, I look and see this is a criteria that parents answer for children from 0-3 months old also. It just makes me feel so depressed and that the gains we're making are pointless in a way. She's still so deficient in so many things. I'm trying to turn my thinking around on this and instead focus on how much more positively I can answer some of these statements since the first time I completed this 6 months ago. It just makes me realize how far we have to go and how some of these things may realistically never be achieved. That's what I'm feeling right now. Hopefully the morning will bring a more sunshiny view of things.

The other thing that has me really down today is having to write a letter to her school to withdraw her. I can't even begin to imagine how difficult it's going to be to pack up her things on the day she leaves. Her school is taking pictures on Thursday. Hubby made the comment this morning that we should get her class picture so that we can remember that once upon a time she was in a "regular" classroom. That was when it really hit me. Having her leave the school is best for her right now, but it's seems so final and like fully admitting that she doesn't function well in the regular world. She truly is special needs. It's unbelievably difficult to accept this. Just thinking about this makes me start to cry. It's funny the things that will just make me step back and realize the magnitude of what is happening to our family, mostly to her. It just seems so awful. I know there is lots of reason to hope and I know I'll find reasons to hope again tomorrow, but for today, I'm feeling despair.

When I focus on the tasks at hand for any given day, things are much easier to handle. It's when I focus on the uncertain future that things seem so out of hand. Good night.

GREAT NEWS!

Today, UCLA called and Elise will be starting the partial hospitalization program on Oct 15. It's going to be quite a feat to balance everything and I have no idea how we'll manage, but we have to manage because the program should help her immensely. The committment of time from the parents is also considerable, so I'm worried about the balance with work. I don't work at the most accomodating place and I haven't been there long enough for the FMLA to be applicable. I guess we'll figure it all out over the next 2 weeks, but it's rather overwhelming right now. It's still good news.

Other than that, not much is going on right now. My work finally received the funding from the billionaire that was giving them money. He now owns 90% of the company and the company is now in a good financial position. The CFO brought in champagne to celebrate. We had the champagne at 4, about 2 minutes after I received the UCLA news. The smile on my face didn't have much to do with the company and the funding, but I bet my happiness probably made it look like I cared - lol!

More Good Times

Today Elise had her evaluation with the school district. There was a psychologist, a speech therapist and an occupational therapist reviewing her. She did really well in the evaluation and I think she provided an excellent representation of where her strengths & weaknesses lie. She was definitely autistic, but she demonstrated that she has the ability to learn. She even easily put together a puzzle of a boy where the pieces weren't in separate shapes and without pictures to guide her. She also said animal sounds and signed more a few times. She caught a ball, threw it-up in the air, not to the therapist :p - and kicked it. She also stacked blocks very adeptly. I was proud of her and I think she was really proud of herself. We'll see how the IEP goes. The lady coordinating her IEP is scheduling visits for us to various area preschool programs. I'm excited to see what opportunities there will be for her education.

The reason I feel so positive about the evaluation was because the evaluators only had read her initial reports from 6 months ago. We hadn't really realized how much progress she'd made until we saw that their expectations for her were quite a bit lower than what she demonstrated. It was really nice to have people focused on how far she's come instead of how far she needs to go. They also complimented how well we handle transitioning her. We hadn't realized how adept we were at that until we saw how difficult it was for them to transition her.

Not much else going on today. This evening, Elise wanted to mostly play alone. I think she was tired and, since I was mostly alone with the 3 kids, it was difficult to make a huge effort to involve her. We had moments of connection, but mostly she took a break this evening and did her own thing. Last night she didn't wake the whole night! Let's hope for another night like that.