This week hubby saw the other preschool that the school district listed for a selection for Elise. It was again ok, but apparently the same as the other recommendation in that it's not strict DTT / ABA and isn't one to one instruction. Elise needs both of these things right now. We sat down during the week and discussed what our goals were for Elise regarding school. We both agreed that we do not feel these are the right schools for her. However, we were having problems even identifying the goals of having her in preschool at all right now. Fortunately, we had a meeting today with someone from the ABA agency we are using who has a fair amount of expertise and experience with the various school options and goals. She explained that the goal of preschool for Elise at this stage is to teach her the structure of a school day. DTT may very well do several tasks in a 15-20 minute period. At a preschool, the day is pretty much broken up into 15-20 sessions of one task. This is very different for Elise, but very necessary for her to learn to help her succeed when it's time for kindergarten.
In discussing with her, we returned to what we originally had always wanted for Elise, but had kind of given up on obtaining. We want Elise to attend a private preschool with B & typically developing peers. We do not want her in a special education program. We want her to have a one to one aide from her ABA agency with her at school. We only want her to attend school for no more than 10 hours per week. We want speech services of 2 hours per week & occupational therapy sessions of 1 hour per week. This is a lot to ask, but it's the services that will benefit Elise the most. This is not something we will obtain on our own. We will be contacting an advocate this week. She was recommended by Elise's ABA agency. She has successfully helped many of their clients and her success rate is great. This advocate receives payment from the school district after mediation, not from us, so that's much more feasible for us than a lawyer with a retainer fee would be. It feels wonderful to have a plan of what we want finally in place, but scary to think of the fight we will have to obtain these services. I'm rather conflict adverse, but this is my child so I will be stepping out of my comfort zone.
One reason we have decided to push for this now is because our ultimate goal is to have Elise mainstreamed with her typically developing peers. We believe that Elise is very intelligent (don't most parents think this of their children?), although she doesn't easily show this to others. If she remains only in special education, my concern would be that she wouldn't be properly challenged. In addition, her quirks may not be as readily remedied. Elise has behavioral issues right now, but overall she tends to go with the flow when she's out on her own. Among other children with various behavioral problems, she may be overlooked. One example of a behavior that would likely be overlooked in a special education classroom would be her verbal stimming. She periodically will loudly say something like "Ah!". In a classroom where there are lots of behavioral type concerns, this may not quickly be addressed because it causes minimal disruption. The same behavior in a classroom of typically developing children will likely immediately be addressed as all the other children would likely turn and look at her and the teacher would then address the behavior. This will help Elise learn appropriate behaviors for life. Since our goal is to mainstream, it's better if we start that now. Once she's tracked one way, it may be difficult to change her direction. I also really want her to go to school with B and, eventually, A. They both miss her and want her with them and, in her own way, she misses being with them.
We discussed various private preschools that accept IEP students and work with one to one aides provided by the school district. Most were located too far from where we live. One thing I noted was that many seemed to be Presbyterian preschools. I looked up for a Presbyterian preschool closer to our home and found one. Coincidentally, it's one I've always been really curious about pursuing when I drive by it. I just shyed away because it wasn't super close to home and it was tied to a church of a different religion from ours. I plan on calling this school this week and feeling out whether they would be open to such an arrangement. If so, we'll tour it and get B and Elise on a waiting list there for the fall. If it seems that it would be a good school for us, we may see if someone from the ABA agency could speak with the school to help us ensure it would be a good fit for Elise.
On Wednesday, we returned to the university program for a 3 month follow-up on a research study in which Elise & I were participating. She went through some assessments and then we played together and were filmed for 10 minutes. I think she did great, although she refused to show her new language skills to them. That's so Elise! Just before the research assessments, we stopped by and said hello to the social worker with the program. She helped me a lot while we were there and it was great to see her again. Elise then participated in another quick research study that tracked her eyes for these two 1 minute video segments. After that, we went to lunch. From lunch, we stopped by Elise's old classroom. She recognized it immediately and made a beeline straight for the toys. She remembered precisely which toys she preferred. We said hi to each of her old teachers. The other children in the class seemed to be handling us being there ok, so we were allowed to stay and participate in a sensory activity (playing with beans). We also did circle time with the other children. I think Elise had a great time with that. She refused to say hi or bye to anyone, other than to wave. She says those so easily now, it's like she made up her mind that she doesn't speak when she's there and that's how it's going to be. Unfortunately, her main classroom teacher was not there that afternoon, so we didn't get to see her. It was nice to see how far Elise had come. She no longer belonged in that classroom, although she still needs lots of help.
Immediately after leaving the classroom, we went to an appointment with her psychiatrist. I was thrilled to see that Elise showed her how well she can understand now. She pointed out background items in a picture book when requested and identified all requested colors. The doctor was very impressed with the progress Elise has made in her receptive language skills. She asked what our primary concerns now were and we told her first and foremost, developing her expressive language skills. After that, resolving her sleep problems. She suggested we try GABA for her sleep & Vitamin B12 to help with her expressive language. We also decided to attempt the GFCF diet with her for 3 months to see if it benefits her. We're first going to add GABA for a week. Then, we'll add the Vitamin B12. After we note the effects of that, we'll eliminate casein from her diet. Then, we'll remove the gluten. We'll give it 3 months and then assess whether it's helped her. It'll be really difficult, but I don't want to wonder whether we missed a key solution for her when all it involves is following what is a healthy diet.
Elise also began speech services this week. She speaks! I couldn't believe how much she'll speak for the speech therapist (SLP). I loved it! The SLP prepared a speech book for us to practice with Elise each day. We then bring it to Elise's sessions to work on those words. I think we hit a great time to begin speech with Elise because she's finally ready to work on it. I expect the words to become easier for her in the coming months. This is a super challenging area for Elise, but obviously essential for her continued development.
This weekend, Elise's ABA behaviorist accompanied us to the park for Elise's session. We were having a playdate with a child from Adam's class. She is 5 and very outgoing. The behaviorist managed to involve Elise in much of the play. I was really impressed. It was hard for Elise, but great to see. I'm once again filled with hope.
We have a path to follow again. It always feels great to have a plan in place. Let's hope that the plan we have in place pans out and that we see tremendous progress from Elise.
Saturday, March 27, 2010
Sunday, March 21, 2010
School Search
On Wednesday, I saw the school with the full-intergration program that I was excited about for Elise & B. It was an awesome school, but I do agree that Elise is just not ready for it yet. I think it would be very overwhelming for her because there is a lot of group time, something that is just so difficult for her right now. As an example, there was one boy there, who I guess was there on an IEP, that really spent most of his time on his own instead of participating with the group. The teachers did attempt to involve him, but he just didn't seem to fit. It was clear to me that this is how Elise would be at the school. It wouldn't be terrible for her and it would expose her to lots of typically developing peer role models. It's now my dream goal for her. I dream that this will be the appropriate setting for her by kindergarten in the fall of 2012.
On Thursday, I visited the school that the school district has recommended for Elise. It was surprisingly a very nice school. I wasn't overly excited by it though. I agree that out of the two schools, this is the one where Elise currently belongs. However, I just don't believe that it's better than her at-home ABA services. The kids are all autistic and there is just no social interaction. I asked the lady providing the tour to me about that and she agreed that it is wonderful and important for autistic children to be exposed to typically developing role models. Her point was just that it's a balance between what Elise needs most at this stage of development. I get what she was saying. In all honesty, if I have to chose between the intensive autism program I saw on Thursday versus the full intergration program I saw on Wednesday as to what will provide the most educational benefit to Elise right now, hands down the autism program wins.
Coming out of this, I do understand the school district's recommendation more now. That said, why can't I have the best of both for her? Well, from what I can tell, it doesn't really exist. In my mind, the closest I'll find for this would be the PreSchool Mixed (PSM) classroom that we decided long ago we wanted for Elise, back before we even knew about these non-public school options. This is a program for children with a variety of special needs that is within the public school system. The classroom we saw does include some typically developing role models from the neighborhood who attend with their mothers. Hubby and I had a good feel when we briefly saw this classroom. It's a limited number of hours each week which will allow Elise plenty of time for outside private speech services as well as her at-home ABA.
Today I'm feeling bad that I even feel the need to maintain this blog. It really helps me sort things out clearly and modify my long term and short term objectives for Elise as needed. I do spend a lot of time dwelling on the challenges we have with Elise when the bottom line is that we have her with us and she is physically healthy and wonderful. Autism is awful, but it's not life threatening. Sometimes, I need to learn to step back and thank God for the blessings we do have. I just so desperately want her to be everything that she can be and right now her autism is seriously in the way of her potential. If only it could just step aside and allow her to fully blossom.
Yesterday I took B & Elise to the zoo in Santa Barbara. It was a big trip to do alone with them, but it all worked out. Elise was overstimulated by the experience and did throw some tantrums there. Nothing too out of control. Today she seemed really distant most of the day. She was stimming a lot more again. I'm trying to figure out if anything precipitated this rough day. I've indentified the following:
1. Elise did not take her Zoloft until 2:20 pm today. That could quite possibly have lead to her irritability.
2. Elise was so overstimulated by the zoo visit on Saturday, that she continued to be out of sorts today.
3. Elise ate pupusas with beans and cheese last night and then had oatmeal made with milk this morning. This is two dairy items.
Other than these, I'm clueless. I think I have to go with #1 now that I see this written down. I'll keep #2 & #3 in mind for future trials, but it's all kind of moot since #1 would definitely have a very real effect on her body and consequently her behavior. Note to self - DO NOT allow us to run out of orange juice mixer for Elise's Zoloft again.
On Thursday, I visited the school that the school district has recommended for Elise. It was surprisingly a very nice school. I wasn't overly excited by it though. I agree that out of the two schools, this is the one where Elise currently belongs. However, I just don't believe that it's better than her at-home ABA services. The kids are all autistic and there is just no social interaction. I asked the lady providing the tour to me about that and she agreed that it is wonderful and important for autistic children to be exposed to typically developing role models. Her point was just that it's a balance between what Elise needs most at this stage of development. I get what she was saying. In all honesty, if I have to chose between the intensive autism program I saw on Thursday versus the full intergration program I saw on Wednesday as to what will provide the most educational benefit to Elise right now, hands down the autism program wins.
Coming out of this, I do understand the school district's recommendation more now. That said, why can't I have the best of both for her? Well, from what I can tell, it doesn't really exist. In my mind, the closest I'll find for this would be the PreSchool Mixed (PSM) classroom that we decided long ago we wanted for Elise, back before we even knew about these non-public school options. This is a program for children with a variety of special needs that is within the public school system. The classroom we saw does include some typically developing role models from the neighborhood who attend with their mothers. Hubby and I had a good feel when we briefly saw this classroom. It's a limited number of hours each week which will allow Elise plenty of time for outside private speech services as well as her at-home ABA.
Today I'm feeling bad that I even feel the need to maintain this blog. It really helps me sort things out clearly and modify my long term and short term objectives for Elise as needed. I do spend a lot of time dwelling on the challenges we have with Elise when the bottom line is that we have her with us and she is physically healthy and wonderful. Autism is awful, but it's not life threatening. Sometimes, I need to learn to step back and thank God for the blessings we do have. I just so desperately want her to be everything that she can be and right now her autism is seriously in the way of her potential. If only it could just step aside and allow her to fully blossom.
Yesterday I took B & Elise to the zoo in Santa Barbara. It was a big trip to do alone with them, but it all worked out. Elise was overstimulated by the experience and did throw some tantrums there. Nothing too out of control. Today she seemed really distant most of the day. She was stimming a lot more again. I'm trying to figure out if anything precipitated this rough day. I've indentified the following:
1. Elise did not take her Zoloft until 2:20 pm today. That could quite possibly have lead to her irritability.
2. Elise was so overstimulated by the zoo visit on Saturday, that she continued to be out of sorts today.
3. Elise ate pupusas with beans and cheese last night and then had oatmeal made with milk this morning. This is two dairy items.
Other than these, I'm clueless. I think I have to go with #1 now that I see this written down. I'll keep #2 & #3 in mind for future trials, but it's all kind of moot since #1 would definitely have a very real effect on her body and consequently her behavior. Note to self - DO NOT allow us to run out of orange juice mixer for Elise's Zoloft again.
Tuesday, March 16, 2010
Riding the Rollercoaster
Things have once again been very busy. Elise was not doing well after her hospital visit for her EEG. She seemed to have a sort of regression, my worst fears felt as though they were being confirmed. However, she seems to be coming out of it and is back to her old self and improving. She had a slight cold for the week after the hospital visit. It worsened this past weekend and she became very sick. I think that had a lot to do with the "regression" we were seeing. Here's the happenings of the past couple of weeks:
On Mar 7, Elise and B attended the 3rd birthday party of a girl who attended the university program with Elise. It was at an indoor playground filled with bouncers. Elise's dream place! She and B had a great time. It did seem to be stressful for Elise and she was on the verge of several transition type tantrums. In the evening, Elise broke out in hives, that's how stressful I think the party was for her. She hadn't been exposed to anything new in her environment or food repertoire.
Instead of recovering from the birthday party the next day, we brought her to a birthday party for her brother A. She was really overwhelmed about it and pretty much was hiding at the party playing by herself. Since hubby and I were busy socializing as we were the party hosts, we really weren't able to help her assimilate. Fortunately, her babysitter and her son came to the party. They played with Elise a lot and the look of relief on Elise's face when she saw them was priceless. Her babysitter is such a godsend.
During A's party, I had a couple of revelations regarding Elise. There is another mother whose sons attend school with A and B. Her youngest is about six months younger than Elise and B and has been diagnosed with high functioning autism. I actually do find this woman to be a good and caring person. However, probably because she's terrified by the diagnosis, as are we, she has said some tactless things to me. She tends to emphasize how her son is high functioning (implied, unlike Elise). Anyway, at the party it became clear to me that the reason Elise's autism is more obvious is because we constantly challenge her to join with other children and in our activities. Her son spent the party doing his own thing, not sitting with the other kids for cake or lunch, that sort of thing. Because we have Elise do those things, we face more tantrums. In all honesty, I don't know which is the better way to handle our kids. Maybe what we're doing is what Elise needs and maybe her son was just having a time where he needed to be on his own. He had been to another party earlier in the day, so he must have been exhausted. I wouldn't know. My revelation was just that appearances to others are inconsequential. We have to just plug along with what we believe is working for Elise and not worry about how severe she appears or how much others may pity our situation. I try to always do this, but given how much some of this mother's thoughtless comments have stung, I'm obviously not always successful at it. Anyway, my other revelation was that I'm kind of thankful that we have never received the "high functioning" label for Elise. I think that has pushed us to see how truly serious her condition is and kept us pursuing agressive treatment for her.
After we were told to allow Elise to have all her little figurines, our lives went to hell. She stopped sleeping and that just has a major impact on all of us. Hubby and I were so stressed and overtired that we were having problems functioning. The boys were also tired and really showing signs of feeling our tensions. Last Tuesday, I finally broke down and called her ABA parent trainer. I told her that we needed to find another way to work on Elise's hoarding behaviors because this method was just destroying us. I actually used the word destroying, I was that distraught. Anyway, she took the toys from Elise and placed them in her reward box. Now, she only has them when her therapists are working with her on this behavior. As she improves, they will work on re-introducing these toys with us. End of story for now...
Starting last Friday, Elise's cold worsened. She developed a fever Friday afternoon through Saturday morning. Then, late Saturday afternoon, she developed a terrible eye infection. I had to call the doctor on call and then hubby ran out to a 24 hour pharmacy (more than 10 miles away - which in LA is a long drive) to pick up antibiotic drops for her eyes. That is all gone now and, except for a lingering cough and some runny nose, she is recovering nicely. I am also finally starting to recover from my 2 week cold(s).
The last two days with Elise have been great. She is really on with us now. She has managed to relieve all of my fears about losing her again. Even when she is doing her own thing, she is with us and paying attention to what is happening. For example, tonight we went to a park. She started running through the field and periodically turned around to look for me. In the past, she would just go without concern for whether anyone was with her. When I was sitting with A, she came up and pulled my hand, saying "Up!". She is beginning to ask for me to play with her. I love this! She is actively imitating kids dancing on TV now. She is playing more often with A and B. She is regularly imitating one syllable sounds now. So much recent progress.
I have a tour of the fully integrated school tomorrow morning. I was very excited about this school, but am more skeptical now. Elise's ABA supervisor, who I respect very much, mentioned that, while she loves the idea of this school, she has found that it's a bit lacking for children with higher level needs. This is definitely the category where Elise currently fits. Also, after watching her at the birthday parties last weeked, I realized that she really does still get overwhelmed when surrounded by so many peers and that maybe it would be too much for her yet. I still am excited to see it for myself. Even if it's not right for now, which I sort of believe is the case, it may be great for the future. On Thursday morning, I will be visiting one of the schools that the school district has offered to Elise. I am not at all excited about this option, but I need to show a good faith effort at considering it for her. I still need to schedule a visit to the other school that the school district offered. The ABA supervisor will be attending our Thursday evening meeting with the ABA parent trainer this week so that we can discuss all of these school options with her.
Other big recent news - hubby found a new job! He accepted an offer at his same company, but in a new division and location. He'll now be working more than an hour from where we live. This is wonderful news because we now can begin to organize our lives more that we have something more solid and permanent for him. However, it's very stressful because now that he is commuting, there are a lot of demands on my time in terms of getting the kids to and from school and getting home for the sitter. I'm finding it nearly impossible to work the core hours during the work day and to get in 40 hours of work each week. I don't know what to do, the logistics of it all just aren't working. Even if I stopped working, I would still need to have help during the day because of the logistics since I'd be tied to the house while Elise is in her therapy. I couldn't afford help if I wasn't working. I can't seem to find the right answer. My acid reflux and headaches lately have been intense. While I try to figure this out, I feel like I'm failing on all ends because there just aren't enough hours in a day. With this preschool tour today & another tomorrow, my work is going to go crazy with me. I haven't even told them that I need off all day next Thursday for Elise's doctor appointments that I bundled together purposely to take less time off work. Something has to give and very soon. I think I need to sit down this weekend and just make some decisions about how to proceed. Maybe my work would let me become a contractor so that I'm only paid for what I work, generally almost 40 hours per work. They won't like this option, but I may have some leeway since they haven't managed to fill the position of my counterpart for the entire 8 months of my employment. I don't want to fall into the trap of believing I'm indispensable because NO ONE is ever indispensable, but they MAY be willing to work with me. We'll see, it's not a conversation I'm looking forward to having.
OK, so all of this is happening with trying to adjust to our new lives. As if that wasn't enough, the babysitter told me on Monday that she needs to have a surgery next month. This will leave her off work for 3 weeks, but I think it'll be longer since this job is physical and demanding. I'm counting on 6 weeks off because I care about her and I want her to be fully recovered. I haven't really gotten my head around how we'll manage without her during this time. She's been very concerned also because, as she pointed out, it requires someone very patient to care for Elise with her special needs. I tell her not to worry, to just worry about herself and that we'll manage, but once she walks away, the fear of how we'll manage sets in. We have to make some serious decisions and plans this weekend. A definite rollercoaster, that's how our lives are right now. Thank goodness for the ups, they make the downs bearable. When I think about how it's only been 7 months since Elise's diagnosis, I am shocked. It honestly feels like a lifetime. We are making strides, but it is mind boggling what we have experienced in such a short amount of time. I don't see any end to the rollercoaster ride in the near future, so I need to just get used to it and learn to deal with the ride for what it is.
On Mar 7, Elise and B attended the 3rd birthday party of a girl who attended the university program with Elise. It was at an indoor playground filled with bouncers. Elise's dream place! She and B had a great time. It did seem to be stressful for Elise and she was on the verge of several transition type tantrums. In the evening, Elise broke out in hives, that's how stressful I think the party was for her. She hadn't been exposed to anything new in her environment or food repertoire.
Instead of recovering from the birthday party the next day, we brought her to a birthday party for her brother A. She was really overwhelmed about it and pretty much was hiding at the party playing by herself. Since hubby and I were busy socializing as we were the party hosts, we really weren't able to help her assimilate. Fortunately, her babysitter and her son came to the party. They played with Elise a lot and the look of relief on Elise's face when she saw them was priceless. Her babysitter is such a godsend.
During A's party, I had a couple of revelations regarding Elise. There is another mother whose sons attend school with A and B. Her youngest is about six months younger than Elise and B and has been diagnosed with high functioning autism. I actually do find this woman to be a good and caring person. However, probably because she's terrified by the diagnosis, as are we, she has said some tactless things to me. She tends to emphasize how her son is high functioning (implied, unlike Elise). Anyway, at the party it became clear to me that the reason Elise's autism is more obvious is because we constantly challenge her to join with other children and in our activities. Her son spent the party doing his own thing, not sitting with the other kids for cake or lunch, that sort of thing. Because we have Elise do those things, we face more tantrums. In all honesty, I don't know which is the better way to handle our kids. Maybe what we're doing is what Elise needs and maybe her son was just having a time where he needed to be on his own. He had been to another party earlier in the day, so he must have been exhausted. I wouldn't know. My revelation was just that appearances to others are inconsequential. We have to just plug along with what we believe is working for Elise and not worry about how severe she appears or how much others may pity our situation. I try to always do this, but given how much some of this mother's thoughtless comments have stung, I'm obviously not always successful at it. Anyway, my other revelation was that I'm kind of thankful that we have never received the "high functioning" label for Elise. I think that has pushed us to see how truly serious her condition is and kept us pursuing agressive treatment for her.
After we were told to allow Elise to have all her little figurines, our lives went to hell. She stopped sleeping and that just has a major impact on all of us. Hubby and I were so stressed and overtired that we were having problems functioning. The boys were also tired and really showing signs of feeling our tensions. Last Tuesday, I finally broke down and called her ABA parent trainer. I told her that we needed to find another way to work on Elise's hoarding behaviors because this method was just destroying us. I actually used the word destroying, I was that distraught. Anyway, she took the toys from Elise and placed them in her reward box. Now, she only has them when her therapists are working with her on this behavior. As she improves, they will work on re-introducing these toys with us. End of story for now...
Starting last Friday, Elise's cold worsened. She developed a fever Friday afternoon through Saturday morning. Then, late Saturday afternoon, she developed a terrible eye infection. I had to call the doctor on call and then hubby ran out to a 24 hour pharmacy (more than 10 miles away - which in LA is a long drive) to pick up antibiotic drops for her eyes. That is all gone now and, except for a lingering cough and some runny nose, she is recovering nicely. I am also finally starting to recover from my 2 week cold(s).
The last two days with Elise have been great. She is really on with us now. She has managed to relieve all of my fears about losing her again. Even when she is doing her own thing, she is with us and paying attention to what is happening. For example, tonight we went to a park. She started running through the field and periodically turned around to look for me. In the past, she would just go without concern for whether anyone was with her. When I was sitting with A, she came up and pulled my hand, saying "Up!". She is beginning to ask for me to play with her. I love this! She is actively imitating kids dancing on TV now. She is playing more often with A and B. She is regularly imitating one syllable sounds now. So much recent progress.
I have a tour of the fully integrated school tomorrow morning. I was very excited about this school, but am more skeptical now. Elise's ABA supervisor, who I respect very much, mentioned that, while she loves the idea of this school, she has found that it's a bit lacking for children with higher level needs. This is definitely the category where Elise currently fits. Also, after watching her at the birthday parties last weeked, I realized that she really does still get overwhelmed when surrounded by so many peers and that maybe it would be too much for her yet. I still am excited to see it for myself. Even if it's not right for now, which I sort of believe is the case, it may be great for the future. On Thursday morning, I will be visiting one of the schools that the school district has offered to Elise. I am not at all excited about this option, but I need to show a good faith effort at considering it for her. I still need to schedule a visit to the other school that the school district offered. The ABA supervisor will be attending our Thursday evening meeting with the ABA parent trainer this week so that we can discuss all of these school options with her.
Other big recent news - hubby found a new job! He accepted an offer at his same company, but in a new division and location. He'll now be working more than an hour from where we live. This is wonderful news because we now can begin to organize our lives more that we have something more solid and permanent for him. However, it's very stressful because now that he is commuting, there are a lot of demands on my time in terms of getting the kids to and from school and getting home for the sitter. I'm finding it nearly impossible to work the core hours during the work day and to get in 40 hours of work each week. I don't know what to do, the logistics of it all just aren't working. Even if I stopped working, I would still need to have help during the day because of the logistics since I'd be tied to the house while Elise is in her therapy. I couldn't afford help if I wasn't working. I can't seem to find the right answer. My acid reflux and headaches lately have been intense. While I try to figure this out, I feel like I'm failing on all ends because there just aren't enough hours in a day. With this preschool tour today & another tomorrow, my work is going to go crazy with me. I haven't even told them that I need off all day next Thursday for Elise's doctor appointments that I bundled together purposely to take less time off work. Something has to give and very soon. I think I need to sit down this weekend and just make some decisions about how to proceed. Maybe my work would let me become a contractor so that I'm only paid for what I work, generally almost 40 hours per work. They won't like this option, but I may have some leeway since they haven't managed to fill the position of my counterpart for the entire 8 months of my employment. I don't want to fall into the trap of believing I'm indispensable because NO ONE is ever indispensable, but they MAY be willing to work with me. We'll see, it's not a conversation I'm looking forward to having.
OK, so all of this is happening with trying to adjust to our new lives. As if that wasn't enough, the babysitter told me on Monday that she needs to have a surgery next month. This will leave her off work for 3 weeks, but I think it'll be longer since this job is physical and demanding. I'm counting on 6 weeks off because I care about her and I want her to be fully recovered. I haven't really gotten my head around how we'll manage without her during this time. She's been very concerned also because, as she pointed out, it requires someone very patient to care for Elise with her special needs. I tell her not to worry, to just worry about herself and that we'll manage, but once she walks away, the fear of how we'll manage sets in. We have to make some serious decisions and plans this weekend. A definite rollercoaster, that's how our lives are right now. Thank goodness for the ups, they make the downs bearable. When I think about how it's only been 7 months since Elise's diagnosis, I am shocked. It honestly feels like a lifetime. We are making strides, but it is mind boggling what we have experienced in such a short amount of time. I don't see any end to the rollercoaster ride in the near future, so I need to just get used to it and learn to deal with the ride for what it is.
Thursday, March 4, 2010
More Happenings
Last Sunday we had a playdate at a park with several of the other families that were in the university program around the same time as Elise. It was really wonderful to see everyone again and catch up somewhat. The kids kept us all busy, so we didn't get to chat much, but it was still nice to keep that connection going. I can speak for myself in saying that the support is very needed. I spoke with another who is totally in the same boat that we are right now in regards to the IEP. They have been offered the same school by the school district and also do not want it. They have been more proactive than us and have actually retained a lawyer. I have since been speaking with this mother and am becoming convinced that we also need to use a lawyer so that Elise doesn't end up segregated with other autistic children in a program that isn't optimally assisting her in reaching her full potential. Unfortunately, the program that I'm really interested in for Elise will most likely not be an option for her. I wanted the program I wrote about last week where she would be in a full inclusion classroom and B and she would be together. This mother also tried to obtain this program and was flat out told that it wasn't appropriate for her son at his stage of development. It was never even on the table for them. That's really disappointing for me. It's really important to me that Elise be with typically developing children. It's not just my "pride", it's just something that I KNOW she needs. She does not push herself in the same way when she's with other autistic children. She makes bigger strides when imitating other children than any other time. Obtaining this right for her is proving to be much more difficult than I ever imagined.
Elise's EEG was Monday and Tuesday. It was quite an ordeal, but we were well prepared for it. She was actually admitted fairly quickly. We only had to wait 1-2 hours for a room. It ended up being a shared room, but since she was only there for a test, it wasn't a big deal. I just felt sorry for the kid in the other bed because he was 10, in pain, and constantly being walked to the bathroom to try to poop while all kinds of people watched him and asked if he had gone yet. Poor kid. He was really embarassed and sharing the room with two adult strangers and an insomniac, autistic 3 year old wasn't helping him at all. Speaking of insomnia, Elise slept from 8 - 12:30 thanks to her melatonin dose. She woke and played in her bed from 12:30-4:30! It was incredibly annoying. At 4:30, she finally fell asleep until 7. It was a long day/night. The good news is that nothing abnormal was found. Her neurologist reiterated that the prescription for her right now is just intensive therapy, as much as possible. I have to admit that I had a measure of disappointment at again not finding a reason for her being the way she is. Hubby made an excellent point that has changed my thinking on this. He emphasized that, while we don't have an "answer", the answers are all pretty rough conditions that could limit her potential. As long as we don't have one of these "answers" we can assume that her potential is limitless. I thought that this is a really positive way to look at our situation.
Lately I'm really struggling with being frustrated with Elise's progress and worried about her ever developing enough to function independently and happily in the future. I've just been really scared and depressed about her future and the future for all of us. I'm struggling with feeling hopeless / powerless to help her. I'm constantly worrying that she'll remain one of the children that never learns to speak or communicate. That thought really terrifies me. I don't know what has prompted these feelings to take hold lately, but they do have a firm hold right now. Maybe it's because we've been having some rough times with Elise lately. She's seemed more distant to me and it's been awhile since I've seen her initiate interaction with us. She spent the whole time in the hospital lining up her toys, performing odd rituals with them and then starting a new routine. I was not allowed to insert myself into this "play" at all. I know it was her way to deal with the extreme stress. That's why I allowed it, but it was awful to watch. I feel a distance growing between us again. I feel desperate to be able to spend more time with her again. Last night, she threw a huge fit before bed. She was inconsolable and violent. When she finally settled a bit, I tried rubbing her back to comfort her. She physically stiffened by my touch. I ended up having to swaddle her tight in a big blanket, not touching her at all. That relaxed her so much that she fell asleep within 2 minutes. She then woke about 4 hours later continuing the same tantrum. This lasted for about 1 hour in the middle of the night. We have know idea why she was screaming. We finally put her in a blanket and swung her back and forth. That calmed her enough to stop throwing the fit. It was awful. There's really nothing else to say about that.
Our ABA parent trainer has asked that we stop hiding the little figurine toys that she obsesses over so that they can work on her hoarding behavior. Apparently she's doing well for them, but I feel like it's destroying us. She takes them to bed now and then doesn't sleep because she's so obsessed about them. She'll wake and spend hours "playing" with them. If one falls over when she wants it to stand, or something on that order, she'll throw a fit. I'm not convinced that we are approaching this behavior correction appropriately.
My acid reflux was terrible last night, I wonder why! Sorry this is such a downer, nights without sleep always make things seem so much more dismal. I need to get back to focusing on the positive.
Elise's EEG was Monday and Tuesday. It was quite an ordeal, but we were well prepared for it. She was actually admitted fairly quickly. We only had to wait 1-2 hours for a room. It ended up being a shared room, but since she was only there for a test, it wasn't a big deal. I just felt sorry for the kid in the other bed because he was 10, in pain, and constantly being walked to the bathroom to try to poop while all kinds of people watched him and asked if he had gone yet. Poor kid. He was really embarassed and sharing the room with two adult strangers and an insomniac, autistic 3 year old wasn't helping him at all. Speaking of insomnia, Elise slept from 8 - 12:30 thanks to her melatonin dose. She woke and played in her bed from 12:30-4:30! It was incredibly annoying. At 4:30, she finally fell asleep until 7. It was a long day/night. The good news is that nothing abnormal was found. Her neurologist reiterated that the prescription for her right now is just intensive therapy, as much as possible. I have to admit that I had a measure of disappointment at again not finding a reason for her being the way she is. Hubby made an excellent point that has changed my thinking on this. He emphasized that, while we don't have an "answer", the answers are all pretty rough conditions that could limit her potential. As long as we don't have one of these "answers" we can assume that her potential is limitless. I thought that this is a really positive way to look at our situation.
Lately I'm really struggling with being frustrated with Elise's progress and worried about her ever developing enough to function independently and happily in the future. I've just been really scared and depressed about her future and the future for all of us. I'm struggling with feeling hopeless / powerless to help her. I'm constantly worrying that she'll remain one of the children that never learns to speak or communicate. That thought really terrifies me. I don't know what has prompted these feelings to take hold lately, but they do have a firm hold right now. Maybe it's because we've been having some rough times with Elise lately. She's seemed more distant to me and it's been awhile since I've seen her initiate interaction with us. She spent the whole time in the hospital lining up her toys, performing odd rituals with them and then starting a new routine. I was not allowed to insert myself into this "play" at all. I know it was her way to deal with the extreme stress. That's why I allowed it, but it was awful to watch. I feel a distance growing between us again. I feel desperate to be able to spend more time with her again. Last night, she threw a huge fit before bed. She was inconsolable and violent. When she finally settled a bit, I tried rubbing her back to comfort her. She physically stiffened by my touch. I ended up having to swaddle her tight in a big blanket, not touching her at all. That relaxed her so much that she fell asleep within 2 minutes. She then woke about 4 hours later continuing the same tantrum. This lasted for about 1 hour in the middle of the night. We have know idea why she was screaming. We finally put her in a blanket and swung her back and forth. That calmed her enough to stop throwing the fit. It was awful. There's really nothing else to say about that.
Our ABA parent trainer has asked that we stop hiding the little figurine toys that she obsesses over so that they can work on her hoarding behavior. Apparently she's doing well for them, but I feel like it's destroying us. She takes them to bed now and then doesn't sleep because she's so obsessed about them. She'll wake and spend hours "playing" with them. If one falls over when she wants it to stand, or something on that order, she'll throw a fit. I'm not convinced that we are approaching this behavior correction appropriately.
My acid reflux was terrible last night, I wonder why! Sorry this is such a downer, nights without sleep always make things seem so much more dismal. I need to get back to focusing on the positive.
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