Thursday, April 29, 2010
Wednesday, April 28, 2010
Educational Solution?
We had Elise's reconvened IEP with the school district last Thursday. We are returning the signed paperwork tomorrow morning. We are signing in disagreement to the instructional setting & the services. Our reason for disagreeing with the instructional setting is that we want her in the least restrictive environment. Our reason for disagreeing with the services is that Elise needs 1:1 BII/BID services with a non-public agency (her ABA provider) in order to support this placement. We are consenting to the implementation of speech and occupational therapy services. The best news we have is that the lawyer contact we had has agreed to take Elise's case. She works on a contingency basis, so she only takes cases that she feels she can win. I take that as a good sign. She feels we have a very strong case and we seriously hope that she is right. We really want Elise to benefit from being around typically developing peers. I strongly feel that the options presented for her education to this point are really just warehousing her and are not the best thing for her future.
This week has been ok with Elise. The weeks are just really difficult because the only time I spend with her is in the evenings when she's tired. When Elise is tired, her autism symptoms are exacerbated. It's just hard. I wish that I was able to spend more time with her when she's on so that I can feel that hope more often. It's just such an endless tunnel right now and we don't know when we'll see the light at the end, or if they'll ever be an end.
I read Elise's IEP report and I think that's what has turned my positive outlook a bit more negative lately. It's so tough to read assessments of where she is developmentally and see right there in front of me statements like "Deficits in cognitive ability will impact her ability to access the general preschool curriculum" and this doozy of a paragraph: "Elise's social development is estimated in the well below average range. Elise's academic skills are estimated within the well below average range. Overall adaptive skills appear within the well below average range." I really fail to see her "deficits" as so poor. She has so many strengths that are just overlooked. Yes, she's very autistic, but I really don't believe she has cognitive deficits. Her autism and lack of compliance often keep her from being able to demonstrate her vast abilities. This has improved dramatically with therapy. No one who has worked with her for an extended period of time seems to think that she is suffering from any mental retardation. On the other hand, no one will commit to saying that she isn't mentally retarded because she's so young, but we regularly hear that she shows lots of good signs. I know I'm her mother, but I think that she's actually really smart. Given how isolated she has been in her own world and the vast amount of time she spent with little to no receptive language skills, I am astounded by how many skills she has essentially self-taught. That takes a lot of intelligence. She is coming along, we just need to keep unlocking the chambers in her mind to open her up to the rest of the world and let us all in to take a look.
One huge positive is that she prefers to be with people rather than alone. She is actually quite social, she just needs to be taught how to interact because that learning is not innate for her. God, I love her so much. It kills me to read these kind of things about my baby.
On Sunday, Elise became really upset when hubby was leaving to take the dog out while the rest of the family was putting on shoes and getting ready to go to the car for a trip to the store. Those moments are always chaotic and stressful for all of us and she didn't understand what was happening. She left the house with me (she was screaming) and got into her car seat. As I was buckling her in to her seat, she began to calm. I looked at her and told her that I think it must be really hard for her not to understand what's happening. I asked her if it would help her if I always first showed her pictures of what we are planning to do next. To my surprise, she looked me in the eyes, nodded her head and attempted to say yes. I acted nonchalant about her response and just told her that I would start to do that. However, I was really stunned because I think she knew exactly what we were discussing. I'm also pretty sure that no one believes me when I tell this story, but I was there and I know there was a very clear moment of connection between us. These odd moments are what keep me fighting and striving for any possible way to help her.
I went out this week and bought lots of staples for our new gluten-free, casein-free (GFCF) pantry. Surprisingly, it has only so far amounted to $100 to stock up on all the various flours, starches, baking powder, bread mixes, etc... Now the real test begins this weekend when I actually attempt to test bake some recipes. We have GFCF Chicken Nuggets on the menu for Friday night and GFCF chocolate cake with GFCF chocolate frosting for Friday afternoon to celebrate the nanny's birthday. It should be interesting. Thank goodness I actually enjoy baking. A part of me is excited to get to make everything from scratch. It'll be an adventure. We have found good substitutes to a lot of the foods with gluten and casein that she currently eats, but we still have to find more. For instance, pizza & macaroni and cheese will be a challenge. She'll manage, it's her brothers that will have the more difficult time. However, I can't serve it to them because if it's in the house, Elise will definitely want it. We're also very dependent on bread for things like sandwiches. Hopefully some of the bread mixes I have and the recipe for GFCF bread made from scratch will be tasty. I've not been at all impressed with the store bought GFCF breads, but I've heard tales that the homemade are much better. Let's hope that's true.
We'll just continue plodding through the next few weeks and hope for the best. The bottom line is that Elise is steadily improving and, even though there's been no huge breakthrough like I dream about, the progress is continuous. Who cares if she gets there in one huge burst or slow and steady like a turtle? As long as she gets there.
This week has been ok with Elise. The weeks are just really difficult because the only time I spend with her is in the evenings when she's tired. When Elise is tired, her autism symptoms are exacerbated. It's just hard. I wish that I was able to spend more time with her when she's on so that I can feel that hope more often. It's just such an endless tunnel right now and we don't know when we'll see the light at the end, or if they'll ever be an end.
I read Elise's IEP report and I think that's what has turned my positive outlook a bit more negative lately. It's so tough to read assessments of where she is developmentally and see right there in front of me statements like "Deficits in cognitive ability will impact her ability to access the general preschool curriculum" and this doozy of a paragraph: "Elise's social development is estimated in the well below average range. Elise's academic skills are estimated within the well below average range. Overall adaptive skills appear within the well below average range." I really fail to see her "deficits" as so poor. She has so many strengths that are just overlooked. Yes, she's very autistic, but I really don't believe she has cognitive deficits. Her autism and lack of compliance often keep her from being able to demonstrate her vast abilities. This has improved dramatically with therapy. No one who has worked with her for an extended period of time seems to think that she is suffering from any mental retardation. On the other hand, no one will commit to saying that she isn't mentally retarded because she's so young, but we regularly hear that she shows lots of good signs. I know I'm her mother, but I think that she's actually really smart. Given how isolated she has been in her own world and the vast amount of time she spent with little to no receptive language skills, I am astounded by how many skills she has essentially self-taught. That takes a lot of intelligence. She is coming along, we just need to keep unlocking the chambers in her mind to open her up to the rest of the world and let us all in to take a look.
One huge positive is that she prefers to be with people rather than alone. She is actually quite social, she just needs to be taught how to interact because that learning is not innate for her. God, I love her so much. It kills me to read these kind of things about my baby.
On Sunday, Elise became really upset when hubby was leaving to take the dog out while the rest of the family was putting on shoes and getting ready to go to the car for a trip to the store. Those moments are always chaotic and stressful for all of us and she didn't understand what was happening. She left the house with me (she was screaming) and got into her car seat. As I was buckling her in to her seat, she began to calm. I looked at her and told her that I think it must be really hard for her not to understand what's happening. I asked her if it would help her if I always first showed her pictures of what we are planning to do next. To my surprise, she looked me in the eyes, nodded her head and attempted to say yes. I acted nonchalant about her response and just told her that I would start to do that. However, I was really stunned because I think she knew exactly what we were discussing. I'm also pretty sure that no one believes me when I tell this story, but I was there and I know there was a very clear moment of connection between us. These odd moments are what keep me fighting and striving for any possible way to help her.
I went out this week and bought lots of staples for our new gluten-free, casein-free (GFCF) pantry. Surprisingly, it has only so far amounted to $100 to stock up on all the various flours, starches, baking powder, bread mixes, etc... Now the real test begins this weekend when I actually attempt to test bake some recipes. We have GFCF Chicken Nuggets on the menu for Friday night and GFCF chocolate cake with GFCF chocolate frosting for Friday afternoon to celebrate the nanny's birthday. It should be interesting. Thank goodness I actually enjoy baking. A part of me is excited to get to make everything from scratch. It'll be an adventure. We have found good substitutes to a lot of the foods with gluten and casein that she currently eats, but we still have to find more. For instance, pizza & macaroni and cheese will be a challenge. She'll manage, it's her brothers that will have the more difficult time. However, I can't serve it to them because if it's in the house, Elise will definitely want it. We're also very dependent on bread for things like sandwiches. Hopefully some of the bread mixes I have and the recipe for GFCF bread made from scratch will be tasty. I've not been at all impressed with the store bought GFCF breads, but I've heard tales that the homemade are much better. Let's hope that's true.
We'll just continue plodding through the next few weeks and hope for the best. The bottom line is that Elise is steadily improving and, even though there's been no huge breakthrough like I dream about, the progress is continuous. Who cares if she gets there in one huge burst or slow and steady like a turtle? As long as she gets there.
Thursday, April 22, 2010
Hope
It's continued to be really busy weeks. My work just becomes more and more crazy. It's a daily battle not to get sucked into really long hours. I wouldn't mind that ocassionally, but at this place, if a give too much, that much more will be expected. I have to stay focused that, yes, I need to work, but that my reason for working at this point in life is solely to provide for all the kids, particularly for Elise's extensive current needs. At least I'm becoming more comfortable with the environment in the office.
We continued to have another rough week after my last post. We became so suspicious of the GABA that she had started taking, that we pulled her off of it. Her behavior and temper tantrums improved immediately. As a bonus, her sleep has continued to be great, even without the GABA. It's weird that she didn't start sleeping well until we gave her GABA, but now that it's been withdrawn for two weeks, she's still sleeping well. Let's hope that continues. I've chalked up the GABA experience as a colossial failure. Another item to place on our checklist of treatments that do not benefit Elise. Fortunately, we have another, longer, checklist of things that really do seem to be benefitting her. I do need to contact her doctor to tell her about our experience with the GABA and make sure that we made the correct decision by removing it. I mean, there are treatments where the child worsens before they improve and I should verify that GABA wasn't supposed to be like that.
For treatments that do seem to benefit her, I am singing the praises of Vitamin B12. We started her on 500mcg last Saturday evening. She seems to be more engaged, attentive and communicating more effectively. She in general seems more aware of things. For example, she has this week started to indicate discomfort to us when she needs her diaper changed. Hooray because I REALLY want her out of diapers. She's also attempting more new words. It's too early to tell for sure, but I think this one may really be helping her. Time will tell, but I'm optimistic. The B12 has been shown to help some children with their expressive language. On the flip side, some children will become very hyper and stimmy when taking B12. We haven't seen any sign of this with Elise yet.
Next week, we plan to begin eliminating casein from Elise's diet. I've been reading a book recommended by her doctor about how to implement the diet. The book provides lots of recipes for gluten free casein free (GFCF) cooking. I've also switched Elise from Whole Grain Rice Milk to Almond Milk. She absolutely loves the almond milk. I'm going to practice some GFCF recipes this weekend, particularly baking recipes. I first need to buy some flours that meet the diet's specifications. It'll be an experience. My first goal is to find recipes that taste relatively close to the gluten filled things she already loves. My concern with the casein free is finding snack items for her to eat. She loves to have apples and peas for snack, which of course are acceptable. However, she is a kid and she also likes to eat chips and goldfish. Since these things are still around the house - I'm not sure yet if I want to committ to eliminating this for the boys also - we need to find suitable alternatives. It promises to be yet another experience.
This morning we had Elise's reconvened IEP. It was uneventful. We told them why we didn't want to accept the offer and what we instead wanted. They told us that they were standing by their offer. End of story. We sat there for about 30 minutes while they typed in the information to their forms. Since it was taking so long and we had to get back to work, we arranged to return tomorrow and pick up the forms. They think we're coming to sign in disagreement, but our lawyer has told us to let her read through them before we sign. We'll just pick up a copy so that we can share it with the lawyer. Fun stuff. We said that we wanted to proceed to mediation, skipping the informal dispute resolution step. We're so divergent on what we want versus the offer right now that I think the informal dispute resolution would be a waste of everyone's time. We have decided to push for a preschool setting with typically developing peers for approximately 10 hours per week. The entire time in school should be spent with a 1:1 BII (Behavioral Aide) from Elise's ABA agency. This BII service will include 6 hours per month of BID services. This is the director / supervisor of the behavioral interventions for Elise at school. We also want 2 hours of speech per week and 2 hours of occupational therapy per week. I don't know if we can get all of that, but we're sure going to try our hardest to receive this.
Not much else to report. I'm really hoping that Elise continues the progress that she has been on for the last week. Here I go again, fantasizing about the magic solution that will heal her. Could B12 really be a key for her? I know it won't cure her on its own, but it may be a real key in propelling her forward. I just want her speech to progress!
We continued to have another rough week after my last post. We became so suspicious of the GABA that she had started taking, that we pulled her off of it. Her behavior and temper tantrums improved immediately. As a bonus, her sleep has continued to be great, even without the GABA. It's weird that she didn't start sleeping well until we gave her GABA, but now that it's been withdrawn for two weeks, she's still sleeping well. Let's hope that continues. I've chalked up the GABA experience as a colossial failure. Another item to place on our checklist of treatments that do not benefit Elise. Fortunately, we have another, longer, checklist of things that really do seem to be benefitting her. I do need to contact her doctor to tell her about our experience with the GABA and make sure that we made the correct decision by removing it. I mean, there are treatments where the child worsens before they improve and I should verify that GABA wasn't supposed to be like that.
For treatments that do seem to benefit her, I am singing the praises of Vitamin B12. We started her on 500mcg last Saturday evening. She seems to be more engaged, attentive and communicating more effectively. She in general seems more aware of things. For example, she has this week started to indicate discomfort to us when she needs her diaper changed. Hooray because I REALLY want her out of diapers. She's also attempting more new words. It's too early to tell for sure, but I think this one may really be helping her. Time will tell, but I'm optimistic. The B12 has been shown to help some children with their expressive language. On the flip side, some children will become very hyper and stimmy when taking B12. We haven't seen any sign of this with Elise yet.
Next week, we plan to begin eliminating casein from Elise's diet. I've been reading a book recommended by her doctor about how to implement the diet. The book provides lots of recipes for gluten free casein free (GFCF) cooking. I've also switched Elise from Whole Grain Rice Milk to Almond Milk. She absolutely loves the almond milk. I'm going to practice some GFCF recipes this weekend, particularly baking recipes. I first need to buy some flours that meet the diet's specifications. It'll be an experience. My first goal is to find recipes that taste relatively close to the gluten filled things she already loves. My concern with the casein free is finding snack items for her to eat. She loves to have apples and peas for snack, which of course are acceptable. However, she is a kid and she also likes to eat chips and goldfish. Since these things are still around the house - I'm not sure yet if I want to committ to eliminating this for the boys also - we need to find suitable alternatives. It promises to be yet another experience.
This morning we had Elise's reconvened IEP. It was uneventful. We told them why we didn't want to accept the offer and what we instead wanted. They told us that they were standing by their offer. End of story. We sat there for about 30 minutes while they typed in the information to their forms. Since it was taking so long and we had to get back to work, we arranged to return tomorrow and pick up the forms. They think we're coming to sign in disagreement, but our lawyer has told us to let her read through them before we sign. We'll just pick up a copy so that we can share it with the lawyer. Fun stuff. We said that we wanted to proceed to mediation, skipping the informal dispute resolution step. We're so divergent on what we want versus the offer right now that I think the informal dispute resolution would be a waste of everyone's time. We have decided to push for a preschool setting with typically developing peers for approximately 10 hours per week. The entire time in school should be spent with a 1:1 BII (Behavioral Aide) from Elise's ABA agency. This BII service will include 6 hours per month of BID services. This is the director / supervisor of the behavioral interventions for Elise at school. We also want 2 hours of speech per week and 2 hours of occupational therapy per week. I don't know if we can get all of that, but we're sure going to try our hardest to receive this.
Not much else to report. I'm really hoping that Elise continues the progress that she has been on for the last week. Here I go again, fantasizing about the magic solution that will heal her. Could B12 really be a key for her? I know it won't cure her on its own, but it may be a real key in propelling her forward. I just want her speech to progress!
Thursday, April 8, 2010
April already...
Time is going by so quickly. It's shocking to me that we've only been dealing with Elise's diagnosis for a little more than 7 months. It seems like a lifetime, even though time is flying. It's hard to remember life before autism invaded every aspect of everything.
Elise has had a rough week. It started going downhill last Sunday. She ate a lot of Easter candy, especially jelly beans. She became really irritable and, well, just addicted to the candy. She would point at the counter asking for the candy. When I'd tell her no more, she would drop to the floor and throw a tantrum. I guess this isn't all that unusual for a child her age, except that this continued for literally hours, endless hours. She would do nothing else but obsess about the candy. It was seriously disturbing. I have since confiscated all the kids candy and hidden it. I've told the boys that if they ask for it in front of Elise, the answer is no. I let them have some of it when she's not around. I've suspected for a long time that her behavior worsens when she has sugary things. After Easter, hubby has now bought into my theory on sugar also. She also spent some time when she was on her sugar high laughing inappropriately. We've been there before and sugar was big on those days also. A common link is finally discovered. Maybe diet will make a difference for her. We'll just have to try and see.
Since Sunday, Elise has been battling a cold. Therefore, she's returned to being very clingy with me and throwing big fits when I'm out of her sight. It's quite stifling and controlling. Augh! We've also discovered that she's becoming lazy about working. She tries hard to get away with doing the minimum required of her. Smart, but not helpful in continuing to push her development.
Elise is doing well in speech. She has a speech book where we've added pictures. She loves to look through it and practice the words. She seems to be trying really hard, but she's incredibly difficult to understand. For some reason, she has a super difficult time completing a word. For example, Ball is Ba, Cheese is Chi, Adam is Am, Me is Mm, Juice is Ju, you get the idea. She has a really hard time putting together two syllables. For example, Bubble is B unless you remind her to make two sounds. Then, she'll say B-B, but it's very disjointed. Same with Choo-choo (train is too hard for her to say). She'll say it, but the two syllables don't flow easily. I'm so proud of how hard she's trying but at the same time I'm so disappointed to see how difficult this is for her. It tears me apart to deal with the two strong emotions simultaneously without letting on to Elise that I feel any sort of disappointment. The disappointment is not in her, it's in the reality of seeing so plainly how impaired she truly is. Seeing her struggle in speech like that slams home the reality of how truly severe her situation can be.
Today was a really rough day for Elise. Her poor nanny. I think she was really upset by all the difficulties Elise had today. Her reaction to Elise's rough days is not much different than mine. It brings us both to tears. I know that she loves Elise because why else would she stay in such a difficult situation. When she told me about her upcoming surgery, her chief concern seemed to be how we would find someone who would be patient and supportive enough for Elise. She is an extraordinary person.
So today was rough primarily because Elise has such a hard time with changes in routine. I went into work late because I was taking Elise to visit a potential new preschool for her and Brendan. That broke her precious morning routine. On top of that, she shows up with her nanny, me & later her dad to sit in this strange school where everyone is talking about her. Then, she gets to go to a classroom where she meets lots of other grown ups and sees other kids and lots of fun toys. She sat down to have a snack with the other children and attempted to join in circle time (kind of, sort of). She was pretty much in her own world while we were there which drove the point home to me that she can only attend school with a 1:1 teacher student ratio. That includes the special education classroom settings. She threw a semi-tantrum about leaving a toy she was holding when we left and then threw a tantrum when we wouldn't let her play in the playground there. At least she showed her true self so the school knows how she really is.
We liked the school. The teachers seemed willing to work with her and include her in their classroom. We explained that she'll only attend if we have her behaviorist aide with her at all times. They appeared fine with that situation. The director seems willing to work with the situation also, although I don't think they're very experienced in handling a child like Elise. That makes sense though since that's not their job and we don't expect it to be. As long as it's a safe, nurturing environment that works to include her, we'll be very happy. I think Brendan would really like it there, but then Brendan likes it everywhere.
We're actually attempting to buy a house soon. We've finally gotten together all of our paperwork for the mortgage guy. We have a definite weakness in that we don't have enough savings right now, so probably we won't be able to buy for a few months. We were hoping to be under contract by 4/30 so that we wouldn't have to pay the exhorbitant taxes we owe on the 15th, but that's most likely not going to happen. We'll miss the federal first time homebuyers credit, but we should be able to get the state's credit and that'll help us a lot in the future. Either way, it's been a stressful week. Now, we have to figure out how we'll manage to pay our taxes next week with no money. I refuse to pay penalty and interest, so we'll scrounge around to make it happen somehow. I have to remind myself to stop throwing a pity party for myself and just be happy that we probably will be able to make this happen if we scrounge hard enough. It would be worse if we truly had no options. However, we're getting dangerously closer to that prospect. It cracks me up that we can't afford a home, but we can't afford not to have a home. I guess we're just the people who don't fit the mold and slip through the cracks of the tax code. Anyway, with taking care of all this home buying thing this week, we have managed to be extra stressed and less attentive to the kids. Not good for them, but a person can only do so much. This too shall pass. I seem to say that far too often.
Elise began taking GABA last Sunday night. It seems to be doing wonders for her insomnia. She's regularly sleeping the night now as far as we know. On the flip side, she's much more spacey and stimy during the day. My theory for this is that she used to take 2-3 hours each night to unwind and have her alone, down-time. Now that she's sleeping, she never has this opportunity, so she spaces more during the day. Still, it's more important to have her sleeping well. Hopefully as she adapts, she'll learn how to need less time to unwind and have alone, down-time.
Tomorrow I'm going to pick up B12 vitamin for her. We're hoping this will help with her expressive language skills. At this point, our number 1 concern is to help her develop expressive language. There's a lot more to tackle, but this is at the top of my list. Let's hope we're one of the lucky ones who see good results with B12. Some children apparently get very hyper and stimy on it and therefore can't use it.
After we spend a week on the B12, we'll start eliminating casein from her diet. Then, it'll be gluten. She'll spend at least 3 months on a gluten-free, casein-free diet. We'll then evaluate whether the diet helps her or not. If it does, it'll become a way of life. If it doesn't, well, we'll know that we tried it and we'll never have doubts that we missed something obvious like diet as a way to recover her.
Enough of this, I suppose that I should get some sleep now. Tomorrow I contact our new realtor & the advocate we plan to use. Elise has her IEP rescheduled for the Thursday after next. We need to have a game plan in place by that time so that we ensure we're on the right path to getting Elise the option we want of private preschool with a 1:1 aide.
Good night.
Elise has had a rough week. It started going downhill last Sunday. She ate a lot of Easter candy, especially jelly beans. She became really irritable and, well, just addicted to the candy. She would point at the counter asking for the candy. When I'd tell her no more, she would drop to the floor and throw a tantrum. I guess this isn't all that unusual for a child her age, except that this continued for literally hours, endless hours. She would do nothing else but obsess about the candy. It was seriously disturbing. I have since confiscated all the kids candy and hidden it. I've told the boys that if they ask for it in front of Elise, the answer is no. I let them have some of it when she's not around. I've suspected for a long time that her behavior worsens when she has sugary things. After Easter, hubby has now bought into my theory on sugar also. She also spent some time when she was on her sugar high laughing inappropriately. We've been there before and sugar was big on those days also. A common link is finally discovered. Maybe diet will make a difference for her. We'll just have to try and see.
Since Sunday, Elise has been battling a cold. Therefore, she's returned to being very clingy with me and throwing big fits when I'm out of her sight. It's quite stifling and controlling. Augh! We've also discovered that she's becoming lazy about working. She tries hard to get away with doing the minimum required of her. Smart, but not helpful in continuing to push her development.
Elise is doing well in speech. She has a speech book where we've added pictures. She loves to look through it and practice the words. She seems to be trying really hard, but she's incredibly difficult to understand. For some reason, she has a super difficult time completing a word. For example, Ball is Ba, Cheese is Chi, Adam is Am, Me is Mm, Juice is Ju, you get the idea. She has a really hard time putting together two syllables. For example, Bubble is B unless you remind her to make two sounds. Then, she'll say B-B, but it's very disjointed. Same with Choo-choo (train is too hard for her to say). She'll say it, but the two syllables don't flow easily. I'm so proud of how hard she's trying but at the same time I'm so disappointed to see how difficult this is for her. It tears me apart to deal with the two strong emotions simultaneously without letting on to Elise that I feel any sort of disappointment. The disappointment is not in her, it's in the reality of seeing so plainly how impaired she truly is. Seeing her struggle in speech like that slams home the reality of how truly severe her situation can be.
Today was a really rough day for Elise. Her poor nanny. I think she was really upset by all the difficulties Elise had today. Her reaction to Elise's rough days is not much different than mine. It brings us both to tears. I know that she loves Elise because why else would she stay in such a difficult situation. When she told me about her upcoming surgery, her chief concern seemed to be how we would find someone who would be patient and supportive enough for Elise. She is an extraordinary person.
So today was rough primarily because Elise has such a hard time with changes in routine. I went into work late because I was taking Elise to visit a potential new preschool for her and Brendan. That broke her precious morning routine. On top of that, she shows up with her nanny, me & later her dad to sit in this strange school where everyone is talking about her. Then, she gets to go to a classroom where she meets lots of other grown ups and sees other kids and lots of fun toys. She sat down to have a snack with the other children and attempted to join in circle time (kind of, sort of). She was pretty much in her own world while we were there which drove the point home to me that she can only attend school with a 1:1 teacher student ratio. That includes the special education classroom settings. She threw a semi-tantrum about leaving a toy she was holding when we left and then threw a tantrum when we wouldn't let her play in the playground there. At least she showed her true self so the school knows how she really is.
We liked the school. The teachers seemed willing to work with her and include her in their classroom. We explained that she'll only attend if we have her behaviorist aide with her at all times. They appeared fine with that situation. The director seems willing to work with the situation also, although I don't think they're very experienced in handling a child like Elise. That makes sense though since that's not their job and we don't expect it to be. As long as it's a safe, nurturing environment that works to include her, we'll be very happy. I think Brendan would really like it there, but then Brendan likes it everywhere.
We're actually attempting to buy a house soon. We've finally gotten together all of our paperwork for the mortgage guy. We have a definite weakness in that we don't have enough savings right now, so probably we won't be able to buy for a few months. We were hoping to be under contract by 4/30 so that we wouldn't have to pay the exhorbitant taxes we owe on the 15th, but that's most likely not going to happen. We'll miss the federal first time homebuyers credit, but we should be able to get the state's credit and that'll help us a lot in the future. Either way, it's been a stressful week. Now, we have to figure out how we'll manage to pay our taxes next week with no money. I refuse to pay penalty and interest, so we'll scrounge around to make it happen somehow. I have to remind myself to stop throwing a pity party for myself and just be happy that we probably will be able to make this happen if we scrounge hard enough. It would be worse if we truly had no options. However, we're getting dangerously closer to that prospect. It cracks me up that we can't afford a home, but we can't afford not to have a home. I guess we're just the people who don't fit the mold and slip through the cracks of the tax code. Anyway, with taking care of all this home buying thing this week, we have managed to be extra stressed and less attentive to the kids. Not good for them, but a person can only do so much. This too shall pass. I seem to say that far too often.
Elise began taking GABA last Sunday night. It seems to be doing wonders for her insomnia. She's regularly sleeping the night now as far as we know. On the flip side, she's much more spacey and stimy during the day. My theory for this is that she used to take 2-3 hours each night to unwind and have her alone, down-time. Now that she's sleeping, she never has this opportunity, so she spaces more during the day. Still, it's more important to have her sleeping well. Hopefully as she adapts, she'll learn how to need less time to unwind and have alone, down-time.
Tomorrow I'm going to pick up B12 vitamin for her. We're hoping this will help with her expressive language skills. At this point, our number 1 concern is to help her develop expressive language. There's a lot more to tackle, but this is at the top of my list. Let's hope we're one of the lucky ones who see good results with B12. Some children apparently get very hyper and stimy on it and therefore can't use it.
After we spend a week on the B12, we'll start eliminating casein from her diet. Then, it'll be gluten. She'll spend at least 3 months on a gluten-free, casein-free diet. We'll then evaluate whether the diet helps her or not. If it does, it'll become a way of life. If it doesn't, well, we'll know that we tried it and we'll never have doubts that we missed something obvious like diet as a way to recover her.
Enough of this, I suppose that I should get some sleep now. Tomorrow I contact our new realtor & the advocate we plan to use. Elise has her IEP rescheduled for the Thursday after next. We need to have a game plan in place by that time so that we ensure we're on the right path to getting Elise the option we want of private preschool with a 1:1 aide.
Good night.
Saturday, March 27, 2010
Decisions, decisions
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.
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.
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.
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