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.
Saturday, November 21, 2009
Thursday, November 19, 2009
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)
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)
Tuesday, November 17, 2009
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...
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...
Thursday, November 12, 2009
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.
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.
Sunday, November 8, 2009
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.
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.
Thursday, November 5, 2009
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...
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...
Sunday, November 1, 2009
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.
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.
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