Tomorrow is Elise's last day at UCLA. It's bittersweet for us. We're completely sick of trying to balance work, caring for the kids & trekking all the way to UCLA two times everyday, including managing to make meetings there. However, Elise has done so well there, the people have been so helpful and supportive, and we don't know what's on the other side of the fence. Overall, it's been a really positive experience, but an incredibly difficult experience. Leaving the program is a very emotional thing for us.
Yesterday, we finally had Elise's IEP meeting with the school district. This is where a plan is agreed upon as to how to educate Elise for the next year. It was far worse than I could ever have imagined. We had decided that we wanted minimal preschool for Elise. This was in line with UCLA's recommendation. We strongly feel that she needs intensive ABA in this upcoming year and a bit of preschool. We niavely thought this would be no problem for the schools because we were requesting less than what they would likely offer. Well, that is not the case. We had to recess the meeting because their offer was for a non-public preschool for Elise about 30 hours per week. That is completely opposite of what we want for Elise and completely opposite of what everyone who has worked closely with her recommends. I don't get what their agenda is. Why would they want to offer such an expensive option to people who don't want it? I hate operating in a contentious situation when I totally don't understand the other side's agenda. The non-public preschool option is the most restrictive environment available. The goal should be to put her in the least restrictive environment possible. See, I am just baffled. I know that I'm part of some agenda or game, but I have no idea what that is. This is totally unneeded stress right now. I will say this, I will FIGHT to get her in the right environment. The only problem I have with this resolve is that fighting will require an advocate, which costs us money we really can't afford right now and I hate to drop money into something when we may be moving to another school district within the next few months anyway because of hubby's job situation. Thinking about this just makes me want to cry so badly. I just don't understand how others can find her so severely disabled. I just don't see her that way. I see that she is significantly impaired right now, but it's never truly occurred to me that she won't begin a rapid improvement. It's already started. I rarely am able to imagine her not being able to function in the "typical" world independently and adequately in the future. Am I in severe denial or are these other people just bizarre? I hate that I'm even questioning this.
When I think back on some of the comments that were made in the meeting and the odd look on the school district's representative's face, I am really just pissed. When the option was noted, the representative had an odd smirk on her face. It was not obvious, it was masked, but I'm really perceptive at picking up on those things. It made it hard for me to concentrate on the words that were being said. The school psychologist comes across as less devious, but she's complicent also. I do remember her laying on this guilt trip that don't we want what's best for our child. Our child needs a social environment, not to just be in a home based individual program for ABA. It annoyed me that someone was so openly trying to manipulate my emotions like that, but at least she was more obvious than the smirking one. I knew I didn't agree with the statement she was making, but when I thought about it later, the suggestion that Elise should go to this 6 hour per day most restrictive preschool because she needed a social environment was laughable. What kind of social environment is it for her if she's solely isolated with other severely disabled children? Perhaps there would be children that are more socially developed than her, but she's really only interested in children that are typically developing. I highly doubt that she would be drawn out of her own play world to enter into a social play world with other disabled children. I also think that she's acutely aware of her differences and it is playing on her confidence right now. To put her in that kind of isolated environment would really harm her confidence.
Another comment that annoyed me was when the smirking one "thanked" us for giving up our spot in the I-CAP program that they had. It really wasn't that hard to give up because it didn't seem quite right for Elise to me. Anyway, she told us how wonderful we were to have done that because it allowed another severely autistic boy whose parents weren't "people with means" (implying that they weren't like us) to obtain help. Um, just because we have more means than other people doesn't mean that the special education laws apply differently to us. We can go broke trying to educate her properly the same way that others already are broke before they start. Just because we have minimal insurance coverage & have been able to dig really deep to help her, doesn't mean that she is less deserving of public help. We've made a lot of sacrifices to get her the appropriate help. We make good incomes, but we are not in a good financial situation. We can't even buy our own home which is ridiculous given our income. I know we are fortunate to have what we have, but we are struggling a lot to have all this.
Well, that's my rant for now. I can't say that writing it out has helped me feel any better. We've been told by others more experienced in this IEP process that we will need to visit this school before we can object to it. Then, we should be prepared to hire an advocate & enter mediation with the school district. Of course, Elise will be getting no services while all of this is ongoing. Maybe this is the goal? Frustrate us so that we decide not to push for what she is entitled?
I spent the evening filling out forms for Elise's exit from UCLA. I'm form weary and would be happy if I never had to complete one about Elise ever again. Hubby met with the care coordinator today. Elise was assessed today and showed significant progress in the results. On one test, she tested at 38 months, so age typical. The others ranged from 19mths-30mths I think. In contrast, when she was assessed at the beginning of the program, one factor tested at 7 mths (that's the 19mth one now). That's quite a leap in 3 months time. She's an amazing little girl who has benefited from an amazing team of people to work with her.
I am currently looking for a speech therapist for Elise. Since this is going on with the school district, she will be receiving zero speech services. I see this as a really critical time for her to continue speech as it's really starting to emerge. Her UCLA speech therapist sent some referrals to me today after I spoke with her. One of the referrals is her school. I would love that but I don't know if we can afford her. Another referral was to the group that first evaluated Elise's speech when she was 26 months. It was the group that first suggested autism to us. We rejected that at the time, but as you know, we were wrong. Now they seem really bright to us. That would probably be my second choice.
I scheduled her EEG for the end of February. That should be a horrendous experience. We're not looking forward to that. I spoke with her psychiatrist and we've reduced her medication. She's much less irritable again. We have a follow-up appointment with her in March. We'll meet at her UCLA office which is nice because we can say hi to all the wonderful UCLA people that have helped us so much over the last 3 months.
Well, enough writing for now. I'll give all of our eyes a rest and go to bed. It promises to be an emotional day tomorrow.
Thursday, January 21, 2010
Sunday, January 17, 2010
What next?
I'm actually much less down today. The weekend was very needed. I received some terrible family news in the morning, but ultimately things should end up ok there I hope. It is starting to make me wonder "What Next???" 2010 was not been a stellar year so far. My hope is that it can only go up from here.
Last week was really rough at work. I was unable to attend any of our meetings for Elise. Hubby had to go to all of them. My boss' last day was Friday. I'm hopeful that things will be a bit less crazy now. It's never ending there with too much to do and no resources to do it. The lack of support is like nothing I've ever experienced at work. With the job news of hubby, I just need to suck it up and deal until things settle for us a bit.
Elise had another insomnia night on Thursday. I have no theory for what caused it this time. She was really irritable on Friday morning, not surprising since she didn't sleep on Thursday night. When hubby dropped her off at school he warned her teacher that Elise hadn't slept again and it might be a rough day. When he went for a meeting with the teacher that afternoon she jokingly told him that maybe we should always have her not sleep because that had been her best day ever. Apparently she's finally starting to speak some for them also. I wish she had another 12 weeks to go there. She's doing so well.
Her teacher did say that Elise lately has been irritable in the mornings but is better later in the day. We give her medicine first thing in the morning and we just increased her dosage about a week ago, per the doctor's recommendation. Irritability can be a side effect, so her teacher suggested we speak with the doctor. After this weekend, we're definitely speaking with the doctor. She was noticably irritable in the mornings, quite unbearable to be around actually. The poor child. We lowered her dosage to the old dosage this morning because it's obvious the new dosage is no good for her. I'll call the doctor tomorrow. It will take 12 weeks to see if this is going to help her much. However, we really haven't seen any noticable improvements in the areas we were attempting to target. Her attention has improved some, but her rigidity and ability to go from 0 to 10 in frustration level in a moment is the same. If the irritability doesn't improve, I'm all for stopping this test. I'm glad we've tried it because I would have always had doubts about whether we made the wrong choice not trying it.
Elise and her brothers went to Build-A-Bear Workshop today. The boys seemed to enjoy it, although B was badly behaved. That seems to be his m.o. lately. Elise was pretty overwhelmed by it, but she did well. Knowing how difficult those kind of things are for her makes me so proud of how well she does. That child will ultimately learn to not let anything stand in her way because she has to work so hard all the time. She really will be fearless, hopefully not in the dangerous ways she can be right now though.
On Friday, we took the kids to McDonalds. Hubby and I wanted to talk about plans without kid interruptions and if the kids play at McDonalds, we can do that. Anyway, I had to watch Elise constantly because she'll just park herself at a stranger's table and start eating their food. It's so embarassing. The child has no concept of stranger anxiety. Not a good thing. We'll definitely have to work on that with her ABA therapy. Teach her some boundaries.
Today, Elise was coloring at the kitchen table with a marker. She dropped it on the floor by accident. I started to bend to pick it up and as I did so, I heard her say very clearly as she pointed to it "Marker". I didn't even know she knew that word. Yea Elise! Her language is really improving. It can only go up from here.
Besides being afraid to answer the phone for fear of more bad news, things are looking better. We're getting through it all.
Later.
Last week was really rough at work. I was unable to attend any of our meetings for Elise. Hubby had to go to all of them. My boss' last day was Friday. I'm hopeful that things will be a bit less crazy now. It's never ending there with too much to do and no resources to do it. The lack of support is like nothing I've ever experienced at work. With the job news of hubby, I just need to suck it up and deal until things settle for us a bit.
Elise had another insomnia night on Thursday. I have no theory for what caused it this time. She was really irritable on Friday morning, not surprising since she didn't sleep on Thursday night. When hubby dropped her off at school he warned her teacher that Elise hadn't slept again and it might be a rough day. When he went for a meeting with the teacher that afternoon she jokingly told him that maybe we should always have her not sleep because that had been her best day ever. Apparently she's finally starting to speak some for them also. I wish she had another 12 weeks to go there. She's doing so well.
Her teacher did say that Elise lately has been irritable in the mornings but is better later in the day. We give her medicine first thing in the morning and we just increased her dosage about a week ago, per the doctor's recommendation. Irritability can be a side effect, so her teacher suggested we speak with the doctor. After this weekend, we're definitely speaking with the doctor. She was noticably irritable in the mornings, quite unbearable to be around actually. The poor child. We lowered her dosage to the old dosage this morning because it's obvious the new dosage is no good for her. I'll call the doctor tomorrow. It will take 12 weeks to see if this is going to help her much. However, we really haven't seen any noticable improvements in the areas we were attempting to target. Her attention has improved some, but her rigidity and ability to go from 0 to 10 in frustration level in a moment is the same. If the irritability doesn't improve, I'm all for stopping this test. I'm glad we've tried it because I would have always had doubts about whether we made the wrong choice not trying it.
Elise and her brothers went to Build-A-Bear Workshop today. The boys seemed to enjoy it, although B was badly behaved. That seems to be his m.o. lately. Elise was pretty overwhelmed by it, but she did well. Knowing how difficult those kind of things are for her makes me so proud of how well she does. That child will ultimately learn to not let anything stand in her way because she has to work so hard all the time. She really will be fearless, hopefully not in the dangerous ways she can be right now though.
On Friday, we took the kids to McDonalds. Hubby and I wanted to talk about plans without kid interruptions and if the kids play at McDonalds, we can do that. Anyway, I had to watch Elise constantly because she'll just park herself at a stranger's table and start eating their food. It's so embarassing. The child has no concept of stranger anxiety. Not a good thing. We'll definitely have to work on that with her ABA therapy. Teach her some boundaries.
Today, Elise was coloring at the kitchen table with a marker. She dropped it on the floor by accident. I started to bend to pick it up and as I did so, I heard her say very clearly as she pointed to it "Marker". I didn't even know she knew that word. Yea Elise! Her language is really improving. It can only go up from here.
Besides being afraid to answer the phone for fear of more bad news, things are looking better. We're getting through it all.
Later.
Tuesday, January 12, 2010
Enough is Enough
I'm once again operating purely in survival mode. After more than 3 years of doing this fairly often, I've really started to just be tired. Today started out normal enough. Hubby took Elise to school and decided to stay there with her and observe her today. The school district psychologist was scheduled to observe also. He met with her and she noted how much Elise had improved. She said that she felt Elise belonged in a program where she would have a very low strudent to teacher ratio. This isn't the way we were beginning to lean for preschool, but I don't know which way to go. The pre-school intensive & I-CAP programs are what she feels is best for Elise. We were moving away from these programs because of their time committment. We were leaning more towards spending most of her time in ABA therapy supplemented with pre-school. I just don't know what will be best for Elise. One option that would be good would be for us to send her to private school and have the school district provide an aide from her ABA agency asist her in the school. I prefer this option because then I could keep her and B together in the same school. I think this is good for both of them. Thinking about this makes my head spin.
As if this wasn't enough to think about, hubby returned to his office today to discover that he'd missed a last-minute scheduled all hands meeting. Of course, these are never good things at work and this meeting met that criteria. His location is closing and he will be out of a job by July. Finding a new job has just been moved into first priority right now. Once again, our moving / buying a home plans are suspended and I don't know what to do to get out of this house that may be making us sick. Where would we move? We don't even know for real now where we'll be working only 6 months from now. He's going to try to get into his work's El Segundo location. We would then want to live closer to there instead of buying in these neighborhoods. Whether he can even get a position there is suspect since now everyone from his current facility will be vying for jobs there since it's the next closest location. Like I said, my head is spinning.
Top this all off with the present time concern that my work is crazy busy and very high pressure right now. The deadlines are numerous and I have no idea how I'll manage to meet them this week. I honestly feel on the verge of just breaking down, but I know I won't because if I haven't yet, then why would I suddenly now?
On the bright side, Elise has been having some great days. I'm looking forward to seeing some of this on the upcoming weekend and next week at her last 4 days of school. Time to pick up and move on once again. I know that brighter times are coming once this uncertainty is settled. It's just all very stressful and scary right now.
I'm hoping that these dark times will pass soon and that they're leading to much brighter times and a great future for all of us.
Elise met with Genetics yesterday. From the logistical side of things, it was a nightmare. The appointment was at 3 across the street from her school, which lets out at 2. Therefore, I had to leave work at 1 to get there. We wandered around for an hour before her appointment. Then, we waited until a bit after 4 to see the doctor. He took her measurements, looked at her and her resemblance to us, examined her a bit and asked us some questions. He ordered a blood test that will be used to map her DNA at a high level. We waited an hour at the lab for this blood test. In his words, the DNA test will be like looking at the moon from the earth. They'll look for extras & missing things as compared to the typical human DNA chain. Something like that - can you tell I'm no scientist ;0
Anyway, my understanding is that if something unusual is seen, then hubby and I would be tested. If we have the same difference, then there could be a genetic issue. If not, then it would just be an anomaly for Elise and would not lead to genetic concerns for the family's future children (not mine because I'm so done). Depending on what is found, we may do additional tests for specific genetic disorders that are linked with autism, but we're starting here. It doesn't appear from this appointment that there will be much to the specific genetic disorder theory for her autism, but we of course don't know that yet. She may very likely be a child for which there is a predisposition and with the appropriate stressors, the cycle begins. The doctor did tell us that there is a research study ongoing right now where the DNA of autistic children, likely ones like Elise, is being mapped in detail and examined for any common differences. This would be something in which we would like to participate if she qualifies. I just want science to start discovering more answers to help more children and families suffering from autism.
I'm just so emotionally wiped out right now. I'll write more about Elise another time. I just need to attempt to sleep, wake up in the morning and survive tomorrow. I think I need Ambien or something so that I can actually fall asleep. Maybe I'll steal Elise's melatonin tonight, or a nice glass of wine, hmmmm....
Oh yes, I forgot to mention how when I sat down at the computer to post this, I saw for the first time the headlines about Haiti's 7.0 earthquake. Unbelievable and so sad. This has been quite the day.
As if this wasn't enough to think about, hubby returned to his office today to discover that he'd missed a last-minute scheduled all hands meeting. Of course, these are never good things at work and this meeting met that criteria. His location is closing and he will be out of a job by July. Finding a new job has just been moved into first priority right now. Once again, our moving / buying a home plans are suspended and I don't know what to do to get out of this house that may be making us sick. Where would we move? We don't even know for real now where we'll be working only 6 months from now. He's going to try to get into his work's El Segundo location. We would then want to live closer to there instead of buying in these neighborhoods. Whether he can even get a position there is suspect since now everyone from his current facility will be vying for jobs there since it's the next closest location. Like I said, my head is spinning.
Top this all off with the present time concern that my work is crazy busy and very high pressure right now. The deadlines are numerous and I have no idea how I'll manage to meet them this week. I honestly feel on the verge of just breaking down, but I know I won't because if I haven't yet, then why would I suddenly now?
On the bright side, Elise has been having some great days. I'm looking forward to seeing some of this on the upcoming weekend and next week at her last 4 days of school. Time to pick up and move on once again. I know that brighter times are coming once this uncertainty is settled. It's just all very stressful and scary right now.
I'm hoping that these dark times will pass soon and that they're leading to much brighter times and a great future for all of us.
Elise met with Genetics yesterday. From the logistical side of things, it was a nightmare. The appointment was at 3 across the street from her school, which lets out at 2. Therefore, I had to leave work at 1 to get there. We wandered around for an hour before her appointment. Then, we waited until a bit after 4 to see the doctor. He took her measurements, looked at her and her resemblance to us, examined her a bit and asked us some questions. He ordered a blood test that will be used to map her DNA at a high level. We waited an hour at the lab for this blood test. In his words, the DNA test will be like looking at the moon from the earth. They'll look for extras & missing things as compared to the typical human DNA chain. Something like that - can you tell I'm no scientist ;0
Anyway, my understanding is that if something unusual is seen, then hubby and I would be tested. If we have the same difference, then there could be a genetic issue. If not, then it would just be an anomaly for Elise and would not lead to genetic concerns for the family's future children (not mine because I'm so done). Depending on what is found, we may do additional tests for specific genetic disorders that are linked with autism, but we're starting here. It doesn't appear from this appointment that there will be much to the specific genetic disorder theory for her autism, but we of course don't know that yet. She may very likely be a child for which there is a predisposition and with the appropriate stressors, the cycle begins. The doctor did tell us that there is a research study ongoing right now where the DNA of autistic children, likely ones like Elise, is being mapped in detail and examined for any common differences. This would be something in which we would like to participate if she qualifies. I just want science to start discovering more answers to help more children and families suffering from autism.
I'm just so emotionally wiped out right now. I'll write more about Elise another time. I just need to attempt to sleep, wake up in the morning and survive tomorrow. I think I need Ambien or something so that I can actually fall asleep. Maybe I'll steal Elise's melatonin tonight, or a nice glass of wine, hmmmm....
Oh yes, I forgot to mention how when I sat down at the computer to post this, I saw for the first time the headlines about Haiti's 7.0 earthquake. Unbelievable and so sad. This has been quite the day.
Thursday, January 7, 2010
Good Days
Elise returned to school on Tuesday. She spent Monday playing with her sitter and really enjoyed herself. She was super happy all day. Hubby took her to school Tuesday morning. He said that when she walked in sight of the school building, she started jumping and laughing and running. At first he was worried she was going to start the whole strange laughing thing again, but then he realized she was just excited to be back to school. When she reached her classroom, she hugged one of her teachers, went back and hugged another, returned to the first for a hug and again to the other. She was extremely excited to be back and see them. I love that she is learning to share her joy with others.
On Wednesday, we had a conference to discuss where Elise is at, how she assessed and recommendations for continuing her success. Her regional center coordinator, her soon-to-be ABA providers, her head teacher, her care coordinator, the program social worker, the medical doctor, her OT therapist and her ST therapist were there. It was wonderful because for once I think that Elise is understood. Elise assesses very poorly but she does in fact know a lot more than she shows. Hubby and I have known this all along, but when everyone consistently assesses her so low (we agree that the assessments are correct, she just holds back), even we had started to have doubts. A consistent theme of discussion was how her performance could be inconsistent, she is often non-compliant & she is not showing everything that she can do. That and her lack of motivation and focus. Something holds her back from fully being herself. At home, we see the real Elise most of the time. No one seems to be able to identify why she is holding back. All acknowledge that she can be "slow to warm". This is definitely true, but 8 weeks is a bit long to take to open up to the people that are trying to help her. If I knew how to help her open up more quickly, I would do what I could. I personally think this is going to have to be something that she determines she wants to do. I see signs of that happening right now. A changed that way around 3 1/2. It's like around that time he decided to try more openly. I hope that Elise will do the same soon. I personally think her lack of motivation has much to do with being bored in her environment. I know I'm the mom and mom's always think too highly of their offspring, but I think she's scarily smart. It's all in there, but with the autism and her personality mixing, we haven't quite found the key to getting it out of her. Unfortunately, I really think we will only keep making these small, but significant, strides with her until she internally decides that she wants to join others and show them how she really is. When she makes that choice, she will soar. This is not just what I BELIEVE, this is what I KNOW. I only hope that this happens soon so that she doesn't fall so far behind developmentally that it'll be too difficult for her to catch up and hamper her confidence more than it already is.
Today was a good day. I dropped Elise off at school and had a meeting there. Hubby picked her up. He brought her sitter and B with him. They watched her in circle time and said that she did great. When they entered the room, hubby told B to give Elise a hug. The first time she didn't hug back, but when he told her to hug B, she actually put her arms around him.
On Tuesday night, Elise crawled into B's bed. She didn't want to go to her bed and B said that he wanted to sleep with her. I decided to let them try to see what would happen. She actually somewhat smiled when B laid down next to her. She started to fall asleep, but B called us back into the room 5 minutes later because he wanted more room. He wanted Elise to go back to her bed. We put her into her bed and she didn't fuss about it. It just seemed so strange to me that she really kind of wanted to sleep with him.
Also on Tuesday, I was cooking dinner while Elise and A were in the playroom. A was working on a large floor puzzle. Elise apparently picked up a piece and put it in the puzzle correctly. A was super excited and ran out to tell me that Elise was playing with him. I was skeptical, but went into the room to see. She was indeed doing the puzzle and tolerating A doing it at the same time. She was getting frustrated because it was difficult for her. I sat down and all 4 of us did the puzzle together. Elise allowed Adam to place his hand over hers and help her orient the puzzle piece and put it in the correct place. It was amazing to see her actually cooperatively playing with him. It truly only lasted about 3 minutes and she was getting frustrated periodically, but it was still a first.
The best thing is that she is really imitating hubby and I and initiating play with us. She has a princess book with puzzle pieces. She has been picking up the crown and other hat type pieces and putting it on her head and on our heads. There are food items and she pretends to eat them. Even better, she pretends to feed us. One piece is a lipstick. She gave it to me and I pretended to put it on my lips. I asked if she wanted to put some on also. She took and also pretended to put it on her lips. There is a comb and she spontaneously started combing my hair. As if that wasn't enough, she noticed that she had combed hair in front of my eyes. She brushed it out of my eyes for me. Maybe I'm reading too much in that action, but it seemed to me that she had an awareness that hair in my eyes would be bothersome to me. Could that actually have been a display of empathy? I can certainly be optimistic and hope, but that may be a bit too optimistic for right now.
Well, that's been this week so far. All I plan on doing right now is majorly encouraging the progress we're seeing at home. I'm hoping that if I help boost her confidence, in sincere ways, that she'll start extending some of these behaviors we're seeing at home, to her school and her therapy sessions. That way, the people with the best skill sets to teach her will be helping the real Elise with the exact things that she needs. I don't know if this makes sense, but it does in my head :0)
Good night all.
On Wednesday, we had a conference to discuss where Elise is at, how she assessed and recommendations for continuing her success. Her regional center coordinator, her soon-to-be ABA providers, her head teacher, her care coordinator, the program social worker, the medical doctor, her OT therapist and her ST therapist were there. It was wonderful because for once I think that Elise is understood. Elise assesses very poorly but she does in fact know a lot more than she shows. Hubby and I have known this all along, but when everyone consistently assesses her so low (we agree that the assessments are correct, she just holds back), even we had started to have doubts. A consistent theme of discussion was how her performance could be inconsistent, she is often non-compliant & she is not showing everything that she can do. That and her lack of motivation and focus. Something holds her back from fully being herself. At home, we see the real Elise most of the time. No one seems to be able to identify why she is holding back. All acknowledge that she can be "slow to warm". This is definitely true, but 8 weeks is a bit long to take to open up to the people that are trying to help her. If I knew how to help her open up more quickly, I would do what I could. I personally think this is going to have to be something that she determines she wants to do. I see signs of that happening right now. A changed that way around 3 1/2. It's like around that time he decided to try more openly. I hope that Elise will do the same soon. I personally think her lack of motivation has much to do with being bored in her environment. I know I'm the mom and mom's always think too highly of their offspring, but I think she's scarily smart. It's all in there, but with the autism and her personality mixing, we haven't quite found the key to getting it out of her. Unfortunately, I really think we will only keep making these small, but significant, strides with her until she internally decides that she wants to join others and show them how she really is. When she makes that choice, she will soar. This is not just what I BELIEVE, this is what I KNOW. I only hope that this happens soon so that she doesn't fall so far behind developmentally that it'll be too difficult for her to catch up and hamper her confidence more than it already is.
Today was a good day. I dropped Elise off at school and had a meeting there. Hubby picked her up. He brought her sitter and B with him. They watched her in circle time and said that she did great. When they entered the room, hubby told B to give Elise a hug. The first time she didn't hug back, but when he told her to hug B, she actually put her arms around him.
On Tuesday night, Elise crawled into B's bed. She didn't want to go to her bed and B said that he wanted to sleep with her. I decided to let them try to see what would happen. She actually somewhat smiled when B laid down next to her. She started to fall asleep, but B called us back into the room 5 minutes later because he wanted more room. He wanted Elise to go back to her bed. We put her into her bed and she didn't fuss about it. It just seemed so strange to me that she really kind of wanted to sleep with him.
Also on Tuesday, I was cooking dinner while Elise and A were in the playroom. A was working on a large floor puzzle. Elise apparently picked up a piece and put it in the puzzle correctly. A was super excited and ran out to tell me that Elise was playing with him. I was skeptical, but went into the room to see. She was indeed doing the puzzle and tolerating A doing it at the same time. She was getting frustrated because it was difficult for her. I sat down and all 4 of us did the puzzle together. Elise allowed Adam to place his hand over hers and help her orient the puzzle piece and put it in the correct place. It was amazing to see her actually cooperatively playing with him. It truly only lasted about 3 minutes and she was getting frustrated periodically, but it was still a first.
The best thing is that she is really imitating hubby and I and initiating play with us. She has a princess book with puzzle pieces. She has been picking up the crown and other hat type pieces and putting it on her head and on our heads. There are food items and she pretends to eat them. Even better, she pretends to feed us. One piece is a lipstick. She gave it to me and I pretended to put it on my lips. I asked if she wanted to put some on also. She took and also pretended to put it on her lips. There is a comb and she spontaneously started combing my hair. As if that wasn't enough, she noticed that she had combed hair in front of my eyes. She brushed it out of my eyes for me. Maybe I'm reading too much in that action, but it seemed to me that she had an awareness that hair in my eyes would be bothersome to me. Could that actually have been a display of empathy? I can certainly be optimistic and hope, but that may be a bit too optimistic for right now.
Well, that's been this week so far. All I plan on doing right now is majorly encouraging the progress we're seeing at home. I'm hoping that if I help boost her confidence, in sincere ways, that she'll start extending some of these behaviors we're seeing at home, to her school and her therapy sessions. That way, the people with the best skill sets to teach her will be helping the real Elise with the exact things that she needs. I don't know if this makes sense, but it does in my head :0)
Good night all.
Sunday, January 3, 2010
Rough Day
Elise was a bit off yesterday and today. The night before last, she suffered insomnia again. She had taken her WonderPet figures to bed with her. We knew that was trouble, but weren't up to the major tantrum it would have taken to have her part with them before bed. Anyway, she woke in the middle of the night screaming because she couldn't find one of them. Hubby found it for her, but then she was unable to return to sleep. I finally went into the room to sleep with her. She would lie down, but then I'd hear her playing again 30 minutes later. I finally took her out of her crib and tried to hold her to help her settle. Her heart was beating faster than normal and she seemed to be having problems not moving. She was wired. For example, she was moving her feet up and down my leg and then she was kind of twitchy. She was opening her mouth wide and making sounds like she sometimes does, often when she's stressed. Then, she started in with the crazy laughing again. It was so upsetting. I finally left the room with her and went to the couch in the living room. There, we could get in a more comfortable position with me holding her tight. She settled almost immediately and was out within 5 minutes.
Given the insomnia, she was pretty tired yesterday. Her eye contact was worse than normal, she was spinning and jumping a bit & she turned her back on us a couple of times. She really hasn't been doing that lately. By afternoon, she started behaving more like she has been recently. I gave her and B a bath. She intently watched him playing and then started doing the same thing he was. She imitated and there was no toy involved. After bath, the boys were playing a game where they were pretending that they couldn't stop spinning out of control. She watched them and then joined in with their play, laughing along with all of us. This was really exciting to see. In the evening, hubby and I went out to dinner while the kids stayed with the sitter and her 14 year old son. He's awesome with the kids and they really enjoy when he visits. Elise joined and played with him when he was chasing all of them through the house. Elise slept the entire night without a sound.
This morning was again very rough with her. She wanted to play with an umbrella she found. I opened it for her, but one whole side of it was broken. She was so upset with this that she began a major tantrum. It lasted probably about 45 minutes. We ignored it, but it really didn't slow. Hubby left with the boys for the park and I finally went to another room and worked on the computer (she was in control of herself at this point but still tantruming). After I was gone a few minutes, she started calling Mama!, Dada! I went to her and, although she was still screaming some, she was calm enough that I could hold her. I squeezed her tight and she just clung to me for quite a few minutes. We then got ready to join the others at the park. So, I get to the park and she throws a massive fit about getting out of the car. I sit with her in the car for probably 30 minutes. I just made a call to my parents during this time. Finally, she was getting uncomfortable in the car since it was rather warm. She then decided it was ok to get out and go to the park. She played ok at the park. We then went to lunch. At lunch, she was very lathargic. An aspiring photographer noticed her and asked if she could take her picture. Elise had her head down on the table for the picture. It's a beautiful picture. I included it in this post.
Anyway, A also had his head down like this and was very lathargic around this time. A has allergies and didn't take his medicine last night. Seeing how similar the 2 seemed to be feeling made me wonder if allergies could be contributing to how off Elise has been the last couple of mornings. It really affects A's behavior when his allergies are bad. This is something I'll have to look into further. The winds were blowing from the desert area again and that's when all of us have worse allergy problems.
Well, that's about it. Elise returns to school on Tuesday and the boys return tomorrow (yeah!). It's been a wonderful break, but I'm so ready to get back to a routine again. The kids are all ready for that also, even if they don't think they are.
Wednesday, December 30, 2009
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!!!!!
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!!!!!
Saturday, December 26, 2009
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.
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.
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