Elise had her first OT session today with the therapist we had before she turned 3. It was wonderful to see her again and get Elise started with the help she's desperately needed for the last 8 months when she's received no OT. The therapist noted that we were starting from square 1 again based on what she saw today, but I'm hopeful that Elise will quickly soar back to where she was before she had to go without OT. She noted evidence of motor planning issues today and that definitely agrees with the speech apraxia issue we're facing. Elise is really such a sick, healthy-looking, little girl.
I'm working hard on putting together the puzzle of what is happening with Elise. Obviously, she's autistic. I want to understand the why so that I can put the puzzle pieces together to help her best. I've been forced to address my own health recently and am very soon going to have my gallbladder removed. Sounds unrelated, but I'm actually considering that this could potentially be a piece of the puzzle. My health began noticably deteriorating when I was pregnant with the twins. That was when I first started experiencing the pain that is now identified as gallbladder disease. It's also when I developed periodontal disease, in spite of the fact that I was having my teeth cleaned every 3 months and was the most fastidious I've ever been in my life about keeping my teeth brushed and flossed well. It's always seemed weird to me, but I've brushed it aside because I've been dealing with one child or another's illnesses for the past nearly 4 years. When we moved to the house, I broke out in hives. It was miserable because it was also record highs where we live - and that means 110+. It seems like the day we moved here is the day my health really began sliding. My mouth was full of silver amalgams and I particularly enjoyed partaking in fresh lime/lemonade from our lime/lemon tree in the backyard. I've since discovered that lime & lemon and teeth cleanings would have leached the heavy metals from my mouth throughout my body. Autism symptoms are very similar to mecury/lead toxicity symptoms in children. Take that plus the made in China toys, the flu shots (they still have mercury) and God knows what else, it's a recipe for disaster in Elise. Just a far-fetched, un-scientific theory, but it's one I feel I need to examine closer. Call it mother's intuition.
Anyway, in researching gallbladder disease theories, I stumbled upon thyroid issues. I've gained 20 pounds in the year since Elise's diagnosis. I do eat too much, so I'm not looking for an excuse, but it does seem excessive. I mean, I don't think I eat that much! That made me look into thyroid. From there I saw so many unexplained things like infertility, excessive sweating, unable to handle cold, fatigue. It was weird to see and makes me wonder if there's something (obviously mild) there for me. How strange is this, we moved to this house and the dog developed hypothyroidism, I developed more symptoms for it and B had signs of it, enough that it warranted a visit to a pediatric endocrinologist. The factor that totally doesn't fit is that all the kids are growing really well. This is why anyone I brought this up to would think I'm crazy and not test further, but for some reason it nags at me and has for a long time. For this reason and many more, I want to move out of our home and start fresh.
I bought two books today to help educate myself about autism and the biomedical approach. I can't wait to dive into them and see what I can do to help ourselves. I'm really not anti-conventional medicine. It's just that conventional medicine offers me very little in regards to healing Elise and that is just unacceptable to me.
Saturday, September 4, 2010
Thursday, September 2, 2010
The Fun Never Ends
From high to low and swinging back up again... Last week when I posted, things were very positive. Elise is still potty trained, but reverts to accidents periodically. She'll go in public bathrooms now and is really learning to say and sign potty. We had a disgusting incident a few nights ago. We left her in the bath alone for a couple of minutes. When I returned to check on her, she was sitting in poop and examining it like play-dough. It was horrendous, but one of those things that we can laugh about now that it's over and cleaned-up. I'm sure Elise will one day "appreciate" that I've posted this on a blog for public consumption. That started our downward spiral that sank really fast when grandma nearly died. Fortunately, she seems to be doing well now. Needless to say, her visit here has been indefinitely cancelled. We're just so thankful that she's alive. Before that incident, I was busy feeling sorry for myself because I was informed I should have my gallbladder removed. Still making a decision on that one, but the pain I experienced last night again pretty much convinced me that I should move forward with the surgery. At least my endoscopy today showed no ulcers. See, all week has been a seesaw of emotions.
I don't have much to report on Elise. She is getting sick again. Only Elise. She definitely seems to have a weaker immune system than the rest of us. When she's sick, her learning halts. She can't afford to have her learning halted. Her JuicePlus order just arrived, so we're hoping the claims of it helping to boost her immune system are valid. At the very least, she loves the taste. I tested one today and they really are tasty. I bought enough for B and A also. They may as well have all those whole fruits and vegetables also since God knows they aren't appropriately represented in their daily diet.
I wrote some info looking back on Elise's history today in an e-mail to a new friend who is making significant progress recovering her autistic 5 year old daughter. I thought it may be useful to have documented here. I'm not sure how much of this I may have already written about, but at least it's more concise in one post here:
Now that I know Elise is autistic, I can see slight signs from birth. Her first smile was 3-4 weeks later than her twin and her eye contact was always not optimal. However, all of this was nowhere near as bad as it has become. They were born at 35 weeks after I had been on 9 weeks of bedrest with preeclampsia, the last 3 weeks in the hospital. It was a very stressful pregnancy and I was very anxious and slightly depressed during it. I think this may have been a contributing factor in Elise's development. At birth, she did need some oxygen the first day in the NICU. However, by day 2, she was in the room with me. She was 5 lbs at birth and actually quite strong. B was the scrawny and sickly one. He spent 10 days in the NICU and we really had to fight for his release. I knew he would thrive once we brought him home and he did. He was 5 lbs 2 oz at birth. With them being a bit premature, they both slept an extraordinary amount in the first 2-3 weeks. Elise really only woke to eat. The rest of the time she slept. My mother stayed with us in the first weeks and I remember her pointing out how Elise wasn't really sleeping. She would lie there with her eyes closed, but she was awake. I think she was overstimulated a lot even back then and she was shutting out the world.
I breastfed only for the first 9 weeks while we had grandparents in town helping us. I did this by pumping as I never taught either to nurse properly. Being premie, neither was able to suck well at the beginning. Once the help left, I didn't have the time to be pumping, so that was the end of nursing. I never produced quite enough to feed both fully, so I gave Elise more formula than B. Remember, he was the sickly one - Elise's sickness wasn't visible like his was. Literally 1 week after I stopped nursing, they both developed RSV and almost ended up in the hospital. It was a really rough time. They were so sick, it set back their development 3-4 weeks. Neither could hold their head up until 4 1/2 months. Elise was much stronger physically than B. Somewhere around 12 months, B started to catch up to Elise physically. He had already surpassed her verbally (not hard to do). Elise had words at 12 months, but they were few and far between. Elise hit all of her milestones in that first year. By 15 months, we noticed she was not as social as B, but we weren't overly concerned. We just thought it was because they were different people. By 18 months, her speech wasn't improving much and the doubts were starting to form for me. However, B started going bald with what we thought was a thyroid problem but ended up being from the steroids he'd had to take for a terrible asthma attack he had. The asthma was probably related to his RSV - it's virtually gone now. Our attention to health turned almost entirely to him. At their 2nd birthday, we were concerned about Elise's speech development, but still not too upset. Then, we had the croup incident.
Elise developed croup 1 month after her second birthday. I took her to the doctor that afternoon. The doctor mentioned that her cough may be a bit croup-like. She had her first ear infection and her first prescribed antibiotic at that appointment. That evening, I gave her the first dose of antibiotic. I sat with her in a steamy bathroom and walked in the cool night air with her. I'd never heard croup, but I did believe she had it. I put her to bed and came to the computer. I heard a very faint cry and went to check on her. She was lying in her crib whimpering and even in the dark I could see that her lips were blue. I yanked her out of bed and placed her on the floor. That action brought some color to her, but her breathing was very labored. I ran out of the house with her and drove to the ER (the hospital is less than 1 mile from us). We were admitted immediately. She received a steroid shot and we spent about 8 hours in the ER with breathing treatments. She wasn't recovering as they hoped, so she was admitted overnight. She had to have an IV and she was really terrified. The child I brought home from the hospital the next day was never the same. All of her very few words disappeared and the sparkle left her eyes. She no longer interacted with us. If we sat down by her, she'd turn her back and continue to "play" (e.g. line up toys) alone. That was when we started our journey and sought help for her.
I don't have much to report on Elise. She is getting sick again. Only Elise. She definitely seems to have a weaker immune system than the rest of us. When she's sick, her learning halts. She can't afford to have her learning halted. Her JuicePlus order just arrived, so we're hoping the claims of it helping to boost her immune system are valid. At the very least, she loves the taste. I tested one today and they really are tasty. I bought enough for B and A also. They may as well have all those whole fruits and vegetables also since God knows they aren't appropriately represented in their daily diet.
I wrote some info looking back on Elise's history today in an e-mail to a new friend who is making significant progress recovering her autistic 5 year old daughter. I thought it may be useful to have documented here. I'm not sure how much of this I may have already written about, but at least it's more concise in one post here:
Now that I know Elise is autistic, I can see slight signs from birth. Her first smile was 3-4 weeks later than her twin and her eye contact was always not optimal. However, all of this was nowhere near as bad as it has become. They were born at 35 weeks after I had been on 9 weeks of bedrest with preeclampsia, the last 3 weeks in the hospital. It was a very stressful pregnancy and I was very anxious and slightly depressed during it. I think this may have been a contributing factor in Elise's development. At birth, she did need some oxygen the first day in the NICU. However, by day 2, she was in the room with me. She was 5 lbs at birth and actually quite strong. B was the scrawny and sickly one. He spent 10 days in the NICU and we really had to fight for his release. I knew he would thrive once we brought him home and he did. He was 5 lbs 2 oz at birth. With them being a bit premature, they both slept an extraordinary amount in the first 2-3 weeks. Elise really only woke to eat. The rest of the time she slept. My mother stayed with us in the first weeks and I remember her pointing out how Elise wasn't really sleeping. She would lie there with her eyes closed, but she was awake. I think she was overstimulated a lot even back then and she was shutting out the world.
I breastfed only for the first 9 weeks while we had grandparents in town helping us. I did this by pumping as I never taught either to nurse properly. Being premie, neither was able to suck well at the beginning. Once the help left, I didn't have the time to be pumping, so that was the end of nursing. I never produced quite enough to feed both fully, so I gave Elise more formula than B. Remember, he was the sickly one - Elise's sickness wasn't visible like his was. Literally 1 week after I stopped nursing, they both developed RSV and almost ended up in the hospital. It was a really rough time. They were so sick, it set back their development 3-4 weeks. Neither could hold their head up until 4 1/2 months. Elise was much stronger physically than B. Somewhere around 12 months, B started to catch up to Elise physically. He had already surpassed her verbally (not hard to do). Elise had words at 12 months, but they were few and far between. Elise hit all of her milestones in that first year. By 15 months, we noticed she was not as social as B, but we weren't overly concerned. We just thought it was because they were different people. By 18 months, her speech wasn't improving much and the doubts were starting to form for me. However, B started going bald with what we thought was a thyroid problem but ended up being from the steroids he'd had to take for a terrible asthma attack he had. The asthma was probably related to his RSV - it's virtually gone now. Our attention to health turned almost entirely to him. At their 2nd birthday, we were concerned about Elise's speech development, but still not too upset. Then, we had the croup incident.
Elise developed croup 1 month after her second birthday. I took her to the doctor that afternoon. The doctor mentioned that her cough may be a bit croup-like. She had her first ear infection and her first prescribed antibiotic at that appointment. That evening, I gave her the first dose of antibiotic. I sat with her in a steamy bathroom and walked in the cool night air with her. I'd never heard croup, but I did believe she had it. I put her to bed and came to the computer. I heard a very faint cry and went to check on her. She was lying in her crib whimpering and even in the dark I could see that her lips were blue. I yanked her out of bed and placed her on the floor. That action brought some color to her, but her breathing was very labored. I ran out of the house with her and drove to the ER (the hospital is less than 1 mile from us). We were admitted immediately. She received a steroid shot and we spent about 8 hours in the ER with breathing treatments. She wasn't recovering as they hoped, so she was admitted overnight. She had to have an IV and she was really terrified. The child I brought home from the hospital the next day was never the same. All of her very few words disappeared and the sparkle left her eyes. She no longer interacted with us. If we sat down by her, she'd turn her back and continue to "play" (e.g. line up toys) alone. That was when we started our journey and sought help for her.
Wednesday, August 25, 2010
Fantastic Day!
I'm writing today because I want to seize the opportunity to post something positive on this blog. Today was a fantastic day for lots of reasons. First of all, Elise is potty trained! She still has occassional accidents, but she's really progressing well. The whole potty training experience was so much easier than I expected. It just showed me that I should never underestimate Elise's abilities.
On Friday morning at 8, 3 consultants showed up at our house; one of the agency's PhDs, our parent trainer and a consultant who has been working with Elise. They started her sitting on the potty for 5 minutes and taking 3 minute breaks. Basically, she spent most of the day on the toilet. We had bought lots of new toys for her to use while she's sitting on the potty. By the end of the day, she was up to 5 minutes sitting on the potty and 5 minute breaks in-between. By the end of the day on Saturday, she was up to 9 minute breaks. She clued in really quickly and is very proud of herself. On Sunday, we were without consultants and training her alone. I give our parent trainer a lot of credit. Things about her drive me crazy, as I've posted here before, but she was great during this potty training experience. She literally spent the entire day with Elise on Friday cramped into a hot and stuffy bathroom. Then, she did the same thing for more than 6 hours on Saturday. Even on Sunday when we were alone, she called twice to see how things were going. For Monday, she found a consultant to fill-in afternoon hours so that we wouldn't have to take off work to continue the potty training (it was too much for the nanny to do since she also has the boys to contend with in the afternoon - definitely a two person job). On Monday, Elise had only one accident during the hurried morning getting ready time when we were unable to pay enough attention to her. Yesterday, Elise had zero accidents. Today, she had one because she was engrossed in computer play and forgot. She was very upset about it. She is now up to 40 minute breaks between her 5 minute potty times. The biggest news is that she made number 2 into the potty for the first time today. This is highly exciting news for me because I want to be DONE with that type of clean-up on a regular basis! She also started learning to sign potty and say the word. This will obviously become essential, especially since school is starting for her in two weeks. She seems to be picking this up quickly also.
Today, I received the news that Elise will finally begin occupational therapy services with a non public agency. This is great news, but the fantastic part is that she'll be working with her old OT who we loved and who was really good with Elise. We had hoped that this would happen, but saw it as extremely unlikely. She's a very talented therapist, Elise responded well to her and she was a great help to us when we were going through the very difficult time of receiving and accepting Elise's autism diagnosis. She means a lot to me and I'm very happy to have the chance for Elise to work with her again. Hooray! In this case, our hard work securing appropriate therapy for Elise has paid off. It's a few months too late, but it's ideal.
I'm feeling like supermom today. After the kids went to bed, I went to work baking brownies for a potluck at the boys' school tomorrow. These brownies are gluten-free, casein-free, nut-free, and egg-free. I thought they were soy-free, but then I discovered the Parve "butter" I used contained soy. OK, the nut-free may also not be a true statement since I didn't verify that every ingredent was not manufactured in a facility that also processes nuts. I certainly wouldn't tell someone with severe allergies that it was allergen-free, but it's not bad. The boy in Adam's class who can't have nuts, eggs & milk is not so bad that he is concerned about cross-contamination. He just can't have any of that as a direct ingredient. His mother is the teacher, so we got the correct story on this. The gluten-free only happened because I was out of wheat flour. I used the All Purpose gluten free baking flour mix that we have on hand. It should be an interesting experiment. I'll sacrifice and taste them once they cool to ensure that they taste good. They definitely smell great.
Well, that's about it for now. I'm enjoying today for today, yet hoping that we can ride this wave of fantastic for a bit longer.
On Friday morning at 8, 3 consultants showed up at our house; one of the agency's PhDs, our parent trainer and a consultant who has been working with Elise. They started her sitting on the potty for 5 minutes and taking 3 minute breaks. Basically, she spent most of the day on the toilet. We had bought lots of new toys for her to use while she's sitting on the potty. By the end of the day, she was up to 5 minutes sitting on the potty and 5 minute breaks in-between. By the end of the day on Saturday, she was up to 9 minute breaks. She clued in really quickly and is very proud of herself. On Sunday, we were without consultants and training her alone. I give our parent trainer a lot of credit. Things about her drive me crazy, as I've posted here before, but she was great during this potty training experience. She literally spent the entire day with Elise on Friday cramped into a hot and stuffy bathroom. Then, she did the same thing for more than 6 hours on Saturday. Even on Sunday when we were alone, she called twice to see how things were going. For Monday, she found a consultant to fill-in afternoon hours so that we wouldn't have to take off work to continue the potty training (it was too much for the nanny to do since she also has the boys to contend with in the afternoon - definitely a two person job). On Monday, Elise had only one accident during the hurried morning getting ready time when we were unable to pay enough attention to her. Yesterday, Elise had zero accidents. Today, she had one because she was engrossed in computer play and forgot. She was very upset about it. She is now up to 40 minute breaks between her 5 minute potty times. The biggest news is that she made number 2 into the potty for the first time today. This is highly exciting news for me because I want to be DONE with that type of clean-up on a regular basis! She also started learning to sign potty and say the word. This will obviously become essential, especially since school is starting for her in two weeks. She seems to be picking this up quickly also.
Today, I received the news that Elise will finally begin occupational therapy services with a non public agency. This is great news, but the fantastic part is that she'll be working with her old OT who we loved and who was really good with Elise. We had hoped that this would happen, but saw it as extremely unlikely. She's a very talented therapist, Elise responded well to her and she was a great help to us when we were going through the very difficult time of receiving and accepting Elise's autism diagnosis. She means a lot to me and I'm very happy to have the chance for Elise to work with her again. Hooray! In this case, our hard work securing appropriate therapy for Elise has paid off. It's a few months too late, but it's ideal.
I'm feeling like supermom today. After the kids went to bed, I went to work baking brownies for a potluck at the boys' school tomorrow. These brownies are gluten-free, casein-free, nut-free, and egg-free. I thought they were soy-free, but then I discovered the Parve "butter" I used contained soy. OK, the nut-free may also not be a true statement since I didn't verify that every ingredent was not manufactured in a facility that also processes nuts. I certainly wouldn't tell someone with severe allergies that it was allergen-free, but it's not bad. The boy in Adam's class who can't have nuts, eggs & milk is not so bad that he is concerned about cross-contamination. He just can't have any of that as a direct ingredient. His mother is the teacher, so we got the correct story on this. The gluten-free only happened because I was out of wheat flour. I used the All Purpose gluten free baking flour mix that we have on hand. It should be an interesting experiment. I'll sacrifice and taste them once they cool to ensure that they taste good. They definitely smell great.
Well, that's about it for now. I'm enjoying today for today, yet hoping that we can ride this wave of fantastic for a bit longer.
Wednesday, August 18, 2010
He Lives!
The dog survived and is improving every day. He was so emaciated when we brought him home from the hospital. He was very near death and I'm amazed that he was able to fight the poison he'd ingested. Of course, now we're more broke than before, but we have our dog back. Elise seemed to acknowledge his return somewhat. I'd be more alarmed by her lack of response to his return if it wasn't for the fact that her neurotypical twin was even less interested in the dog's return home than Elise was! At least A was happier to see the dog and gave him a hug.
The saga of securing therapy for Elise continues...We contacted our lawyer about the offer we received for occupational therapy services. She contacted the school district's psychologist who drafted our mediation agreement. We discovered that Elise is supposed to have her services with a non-public agency (NPA). Hubby contacted the office that will set this up for us today. We will be able to use an NPA for Elise's occupational therapy. That will allow us to fill the hours we have been granted. We selected Elise's old therapy center from when she was in early intervention services. We would love it if we could have the same therapist. She was such a tremendous help to us with Elise, connected very well with Elise and was very supportive during the time we were learning to accept Elise's diagnosis, which must have been obvious to her from day 1. I'd be thrilled if she has some availability for Elise. The secondary bonus is that the facility is literally across the street from my work, so I could be more involved in Elise's therapy, instead of it all being handled by her wonderful nanny.
Speaking of which, we are so lucky to have her working with us. She embraces all of the therapy techniques that she sees for Elise. She genuinely celebrates Elise's little successes and pushes her gently to continue progressing. Today, she took Elise to the mall and made sure to stop in the bathroom there. Elise has become fearful of public bathrooms and the only way to improve this is to gently expose her to the situation. Not only did she get her into the bathroom, she had her dry her hands under the hand dryer. Elise is terrified of the hand dryers, but she trusts her nanny so much that she did it with only slight protest. Score one for the nanny. Her help in gently challenging Elise makes things so much better for our situation.
Elise has been stimming a lot lately. Today, she weirdly became scared in the pool and on a swing at the park. It's so frustrating to not know what is setting her off so often. She is becoming somewhat responsive when I tell her to close her mouth or that her verbal stimming is not appropriate. She's slowly developing some awareness that the behavior is not socially acceptable. We just have to keep working on it.
This Friday and Saturday Elise is having a potty party. She will have consultants working with her from 8-5 each day potty training her. I am so excited! I hope more than anyone could imagine that she will be mostly potty trained after this weekend. Please, please, please, please, please....I want to be done with diapers. She's rapidly approaching 4 - it's time.
The saga of securing therapy for Elise continues...We contacted our lawyer about the offer we received for occupational therapy services. She contacted the school district's psychologist who drafted our mediation agreement. We discovered that Elise is supposed to have her services with a non-public agency (NPA). Hubby contacted the office that will set this up for us today. We will be able to use an NPA for Elise's occupational therapy. That will allow us to fill the hours we have been granted. We selected Elise's old therapy center from when she was in early intervention services. We would love it if we could have the same therapist. She was such a tremendous help to us with Elise, connected very well with Elise and was very supportive during the time we were learning to accept Elise's diagnosis, which must have been obvious to her from day 1. I'd be thrilled if she has some availability for Elise. The secondary bonus is that the facility is literally across the street from my work, so I could be more involved in Elise's therapy, instead of it all being handled by her wonderful nanny.
Speaking of which, we are so lucky to have her working with us. She embraces all of the therapy techniques that she sees for Elise. She genuinely celebrates Elise's little successes and pushes her gently to continue progressing. Today, she took Elise to the mall and made sure to stop in the bathroom there. Elise has become fearful of public bathrooms and the only way to improve this is to gently expose her to the situation. Not only did she get her into the bathroom, she had her dry her hands under the hand dryer. Elise is terrified of the hand dryers, but she trusts her nanny so much that she did it with only slight protest. Score one for the nanny. Her help in gently challenging Elise makes things so much better for our situation.
Elise has been stimming a lot lately. Today, she weirdly became scared in the pool and on a swing at the park. It's so frustrating to not know what is setting her off so often. She is becoming somewhat responsive when I tell her to close her mouth or that her verbal stimming is not appropriate. She's slowly developing some awareness that the behavior is not socially acceptable. We just have to keep working on it.
This Friday and Saturday Elise is having a potty party. She will have consultants working with her from 8-5 each day potty training her. I am so excited! I hope more than anyone could imagine that she will be mostly potty trained after this weekend. Please, please, please, please, please....I want to be done with diapers. She's rapidly approaching 4 - it's time.
Wednesday, August 11, 2010
What a Nightmare!
For once the nightmare doesn't involve anything with Elise - hooray for that. She has been having a pretty good week so far. Today, she went to a park with her nanny and had a picnic lunch. She spontaneously pointed at a dog and said "dog". Then, she pointed again and said "big dog." Then, she pointed at a tree and said "Tree". This is huge not just because she said words without prompting but because by pointing and engaging with her nanny, she also shared an interest using both verbal and nonverbal cues. Crazy that I know this and don't take any of it for granted. Having a child with autism gives me a whole different perspective on the world.
We're calling the lawyer tonight to see what we can do with the whole occupational therapy thing. From what we understand when we read our agreement, we are to have a non-public agency provide her therapy. When I call this therapist that Elise was supposed to see, her phone number calls into a school district office and she is titled "School Occupational Therapist" on her voicemail. She sure doesn't seem to be part of a non-public agency. I think they're playing another weird game with us - sigh...maybe someday she'll receive the therapy we agreed to receive. Hopefully before she turns 4!!!
The reason this week has been a nightmare is that our dog was poisoned on Monday morning. He was on a walk and picked up something to eat from the grass before we could stop him. About 10 minutes later, he became unable to move well. I took him to the vet and he has been in the hospital since. He's improving some, but is still unable to walk or sit and has not wanted to eat. He was and possibly still is very near death. We all love that dog so much and are devastated by this. The pain he's been in is horrible to see. I pray that he's not going through these horrible days only to lose his battle in the end. We miss him so much! On the other hand, it has been strange not to focus only on Elise these past two days. I just wish our focus wasn't on a worse situation than our usual obsession with Elise's healing.
We're calling the lawyer tonight to see what we can do with the whole occupational therapy thing. From what we understand when we read our agreement, we are to have a non-public agency provide her therapy. When I call this therapist that Elise was supposed to see, her phone number calls into a school district office and she is titled "School Occupational Therapist" on her voicemail. She sure doesn't seem to be part of a non-public agency. I think they're playing another weird game with us - sigh...maybe someday she'll receive the therapy we agreed to receive. Hopefully before she turns 4!!!
The reason this week has been a nightmare is that our dog was poisoned on Monday morning. He was on a walk and picked up something to eat from the grass before we could stop him. About 10 minutes later, he became unable to move well. I took him to the vet and he has been in the hospital since. He's improving some, but is still unable to walk or sit and has not wanted to eat. He was and possibly still is very near death. We all love that dog so much and are devastated by this. The pain he's been in is horrible to see. I pray that he's not going through these horrible days only to lose his battle in the end. We miss him so much! On the other hand, it has been strange not to focus only on Elise these past two days. I just wish our focus wasn't on a worse situation than our usual obsession with Elise's healing.
Monday, August 9, 2010
Emotional Times
We're back on the rollercoaster that is life with an autistic child, or maybe it's just life in general. Elise began stimming a lot last week. I found her to be much more withdrawn and distant and much less focused. We had increased her Abilify dosage, so I was hoping to see positive changes. Instead, we saw that the things Abilify is supposed to help were becoming worse. Sigh...I actually think the two are unrelated this time. I haven't figured out why we're seeing the worsening symptoms, but I still suspect yeast overgrowth sparked by the antibiotic she was on 2-3 weeks ago. Our parent trainer also noted in our weekly meeting that they were seeing a lot more stims. The example she used was that they were increasing from 20% of the time to 70-80% of the time. Given my suspicion of yeast overgrowth, I increased her probiotic to a full capsule instead of her usual 1/2 capsule. She's returning to her usual self now, thank goodness. She's no longer irritated looking in her bottom area, the dry spot on her back is disappearing (eczema?) and she's no longer engaging in inappropriate laughter. She's still stimming, but it's mellowing. She's engaging with us better than last week, but maybe not quite as well as she has been other weeks. I believe that she is coming back.
This lastest downturn has driven me to get back on track with going gluten free again. I'm also beginning JuicePlus so that we can improve Elise's immune system. My hope is that she'll get sick less and avoid needing antibiotics. Then, we won't have to go through this constant cycle of sick, antibiotic, worsening symptoms and less ability to learn. If we can keep her healthy more often, she'll be in a learning state much more often. I had a 15 minute conversation with the Queen of Health about JuicePlus last week. It was a complete sales job, but I think there is a lot of sincerity. I trust Elise's doctor and feel that she wouldn't lead me into a scam. Plus, there is research being done at great universities that supports JuicePlus claims. Elise tried it today and really liked it. I'm not sure of the cost. I'm hoping that we can manage to get samples to start and make sure it works well for Elise. B could also really use it since he doesn't eat all that well and he's always been somewhat sickly.
I've been working really hard to set up services for Elise AGAIN. I found a speech provider that I had a really good feel about. It's an hour from our home, but the owner is willing to accomodate our restricted time availability, so we're going for it. She'll attend 2 hours per week, once on Friday morning and again on Monday or Wednesday from 5-6pm. For the Friday morning, we're hoping for the 9-10 time slot. Then, we'll just drive her to her nanny's house and the nanny will take her to speech. It's only about 5 miles (20 minutes) from her nanny's house to the speech center. It would be stupid for our nanny to come all the way out to our place only to drive an hour back towards her house to get to the speech center. We're also going to continue with her current speech provider using our insurance. Her current therapist is much more medically, clinically based which Elise really needs right now. This new place claims that they're open to working with our other speech therapist, so we'll see how that goes.
Now, OT services are a completely different story. I've been back and forth with the school district trying to find out how to get started with OT. Mind you, per our mediation agreement, Elise was supposed to spend much of the summer receiving OT. Hmmm...that really happened. Anywho, I have alarm bells going off about what is being provided now. Our agreement states that we are to have a non-public agency provide her services. They had an OT call me to schedule a time. I didn't click with the therapist on the phone. She seemed impatient and rude. Just the kind of person who would be perfect working with a young, non-compliant autistic 3 year old (this statement is laden with sarcasm). Something just didn't seem right to me, so I cancelled our first session tomorrow until I spoke with our lawyer. Well, when I called to cancel, I discovered that the therapist's phone number is the school district's office. I'm confused because our agreement says we're to have a non-public agency (NPA). The lawyer said I should ask this therapist if she is an NPA. If not, then the agreement is not being followed. She can step in at that point if we need her. This just sucks. The lady from the school district that set this up reminds me of the original one we worked with who pushed us into the most restrictive environment for Elise and pretended that she was doing us a big favor. Like I said, alarm bells are going off all over the place for me. I have to trust my intuition on this. We're being screwed. They waste so much of Elise's precious healing time with this crap and they never win. I mean, this is my child's future, I'm not going to back down from what we legally agreed to have. Anyway, this is up in the air for the time being.
That's kind of all that is happening right now, as if that's not enough. Tonight I was logged onto a Biomed Mammas group for mom's of kids with autism who are using biomedical interventions. There is a new member who posted a bit about her story. She said that until 18 months, her daughter was not autistic. By 2, she was diagnosed. She is still mostly non-verbal at the age of 4. She posted pictures of her beautiful little girl, one when she was not yet autistic and a current picture. It was like looking through old pictures of Elise. She wrote "I love her so much but I miss the sparkle and light in her eyes and face. She is still a very happy little girl but it's like part of her is missing and I would gladly give whatever I can to get even half of it back." I ache for this mother because it's exactly how I feel about Elise. What is happening to these children. Above are my pictures of Elise before and after.
This lastest downturn has driven me to get back on track with going gluten free again. I'm also beginning JuicePlus so that we can improve Elise's immune system. My hope is that she'll get sick less and avoid needing antibiotics. Then, we won't have to go through this constant cycle of sick, antibiotic, worsening symptoms and less ability to learn. If we can keep her healthy more often, she'll be in a learning state much more often. I had a 15 minute conversation with the Queen of Health about JuicePlus last week. It was a complete sales job, but I think there is a lot of sincerity. I trust Elise's doctor and feel that she wouldn't lead me into a scam. Plus, there is research being done at great universities that supports JuicePlus claims. Elise tried it today and really liked it. I'm not sure of the cost. I'm hoping that we can manage to get samples to start and make sure it works well for Elise. B could also really use it since he doesn't eat all that well and he's always been somewhat sickly.
I've been working really hard to set up services for Elise AGAIN. I found a speech provider that I had a really good feel about. It's an hour from our home, but the owner is willing to accomodate our restricted time availability, so we're going for it. She'll attend 2 hours per week, once on Friday morning and again on Monday or Wednesday from 5-6pm. For the Friday morning, we're hoping for the 9-10 time slot. Then, we'll just drive her to her nanny's house and the nanny will take her to speech. It's only about 5 miles (20 minutes) from her nanny's house to the speech center. It would be stupid for our nanny to come all the way out to our place only to drive an hour back towards her house to get to the speech center. We're also going to continue with her current speech provider using our insurance. Her current therapist is much more medically, clinically based which Elise really needs right now. This new place claims that they're open to working with our other speech therapist, so we'll see how that goes.
Now, OT services are a completely different story. I've been back and forth with the school district trying to find out how to get started with OT. Mind you, per our mediation agreement, Elise was supposed to spend much of the summer receiving OT. Hmmm...that really happened. Anywho, I have alarm bells going off about what is being provided now. Our agreement states that we are to have a non-public agency provide her services. They had an OT call me to schedule a time. I didn't click with the therapist on the phone. She seemed impatient and rude. Just the kind of person who would be perfect working with a young, non-compliant autistic 3 year old (this statement is laden with sarcasm). Something just didn't seem right to me, so I cancelled our first session tomorrow until I spoke with our lawyer. Well, when I called to cancel, I discovered that the therapist's phone number is the school district's office. I'm confused because our agreement says we're to have a non-public agency (NPA). The lawyer said I should ask this therapist if she is an NPA. If not, then the agreement is not being followed. She can step in at that point if we need her. This just sucks. The lady from the school district that set this up reminds me of the original one we worked with who pushed us into the most restrictive environment for Elise and pretended that she was doing us a big favor. Like I said, alarm bells are going off all over the place for me. I have to trust my intuition on this. We're being screwed. They waste so much of Elise's precious healing time with this crap and they never win. I mean, this is my child's future, I'm not going to back down from what we legally agreed to have. Anyway, this is up in the air for the time being.
That's kind of all that is happening right now, as if that's not enough. Tonight I was logged onto a Biomed Mammas group for mom's of kids with autism who are using biomedical interventions. There is a new member who posted a bit about her story. She said that until 18 months, her daughter was not autistic. By 2, she was diagnosed. She is still mostly non-verbal at the age of 4. She posted pictures of her beautiful little girl, one when she was not yet autistic and a current picture. It was like looking through old pictures of Elise. She wrote "I love her so much but I miss the sparkle and light in her eyes and face. She is still a very happy little girl but it's like part of her is missing and I would gladly give whatever I can to get even half of it back." I ache for this mother because it's exactly how I feel about Elise. What is happening to these children. Above are my pictures of Elise before and after.
Sunday, August 1, 2010
Good Day
We had a good week with Elise overall. She has settled nicely with her nanny's return and seems to be working really hard in her DTT (discrete trial training) sessions. On Weds, I took her to see her psychiatrist. Elise was actually quite "off" during the visit. She was fussy and fairly non-compliant. However, although she tantrumed, they were more whiny than full tantrums and she was easily comforted by me out of them. I noted that she wasn't feeling all that well, so her doctor suggested that we start using JuicePlus to boost her immune system. She also provided the name of someone doing a research study on boosting the immune system of kid's like Elise. I will be contacting this person to see if it is open for us to join. We decided to up her Abilify to .35 ml. We have seen really significant progress with the .25 ml which is a very miniscule dose. The dose she was using initially when she was falling asleep all the time was .5 ml. We're hoping that the .35 ml will really benefit her and not lead to increased side effects. We began the new dose tonight, so we'll see how it goes. Initially, the Abilify seemed to help her sleep through the night, to focus better and to improve her eye contact. We've seen a decline in these positive effects. They're still way better than they were, but not as great as after we first started using Abilify. Perhaps her body does need a bit more. We'll see. So far, I'm very pro-Abilify. It is making a huge difference for Elise and my hopes are really high for her.
On Thursday, I met with our parent trainer. She also had really positive things to say about Elise this time. She noted that Elise is verbalizing much more for them. She is recognizing and saying colors, her tantrums have declined and she is progressing well through most of her drills. They have decided to modify a couple of drills. One of these is to modify the non-verbal imitation drill where Elise is supposed to imitate two consecutive actions. Elise is not mastering this and becomes quite frustrated with it. I asked whether this was a motor planning issue. The trainer said that no, it was more of an executive planning problem. In my words, Elise's brain is just wired wrong - it's so sad. However, she's a really clever and determined girl, so I'm hopeful that we can re-wire some things since she's still so young. If not, I'm hopeful that Elise will teach herself work arounds for her "shortcomings". When I think of it this way, it bothers me less. I mean, we all have areas where we have to teach ourselves work-arounds because it's not where our talents lie. Elise's seem to be much more numerous than most, but I'm confident that she will be able to teach herself a lot, especially with all the support she is receiving while she is so young. The second modification is in teaching Elise how to play some of the preschool games, like tag. They've noticed that Elise just gets very stimulated when she runs and loses the object/purpose of running. Therefore, tag is pointless for her. She begins to chase someone and then gets excited and just aimlessly runs. They are going to have our nanny stand still and teach Elise how to "tag" her, rewarding her each time. Then, she will move some and Elise will "tag" her, and so on and so on.
Today Elise had a session with a fill-in consultant that she's never met. The woman was really excellent. We had her work with Elise for an hour in her room. Then, we went to a nearby indoor playground with her brothers. The consultant was awesome about gathering kids to play with Elise. We played duck-duck-goose, tag, ring around the rosies, follow-the-leader and other things. It was hard for Elise to wait her turn and follow along, but she was so HAPPY. It was such a joy to us to see how happy she was to be able to play with the other children. I've never seen her try so hard and enjoy herself so much in this situation. It's a beginning and hopefully a start to being able to develop some relationships with peers. During duck-duck-goose, she would get really smily and excited anticipating the "goose". I loved seeing her like this!
We finally received our letter from the school district about starting speech services. We have yet to receive anything about the OT services. I spoke with her current speech therapist and contacted the vendor she noted (she didn't "recommend" as I think she can't do that, but she did note one in particular). I am meeting with that provider at 9am on Tuesday. It's really far from where we live, like a 45 minute drive. I find it suspicious that there is no one closer. I also find it suspicious that we received the letter on 7/29 and the vendors close during the month of August. I think the school is working to ensure that we don't have the opportunity to use all of the hours we agreed to in mediation. I do sympathize with the situation that these school districts are facing. Federal mandates require much in regards to special needs children yet provide a very low actual percentage of the funding for these requirements. The state is broke and the county is also in bad shape. The number of autistic children is growing rapidly. The system is very stretched. While I understand this, I refuse to let Elise fall through the cracks. I battle the selfishness of how hard I'm working to ensure that Elise gets everything knowing that many other children like her are not receiving the same. However, if Elise gets less, it's not like those children will get more. There would just be that much less given. At least this is how I rationalize. This autism crisis is just bad. I have no answers. I just hope that there are others who are coming closer to having answers.
On Thursday, I met with our parent trainer. She also had really positive things to say about Elise this time. She noted that Elise is verbalizing much more for them. She is recognizing and saying colors, her tantrums have declined and she is progressing well through most of her drills. They have decided to modify a couple of drills. One of these is to modify the non-verbal imitation drill where Elise is supposed to imitate two consecutive actions. Elise is not mastering this and becomes quite frustrated with it. I asked whether this was a motor planning issue. The trainer said that no, it was more of an executive planning problem. In my words, Elise's brain is just wired wrong - it's so sad. However, she's a really clever and determined girl, so I'm hopeful that we can re-wire some things since she's still so young. If not, I'm hopeful that Elise will teach herself work arounds for her "shortcomings". When I think of it this way, it bothers me less. I mean, we all have areas where we have to teach ourselves work-arounds because it's not where our talents lie. Elise's seem to be much more numerous than most, but I'm confident that she will be able to teach herself a lot, especially with all the support she is receiving while she is so young. The second modification is in teaching Elise how to play some of the preschool games, like tag. They've noticed that Elise just gets very stimulated when she runs and loses the object/purpose of running. Therefore, tag is pointless for her. She begins to chase someone and then gets excited and just aimlessly runs. They are going to have our nanny stand still and teach Elise how to "tag" her, rewarding her each time. Then, she will move some and Elise will "tag" her, and so on and so on.
Today Elise had a session with a fill-in consultant that she's never met. The woman was really excellent. We had her work with Elise for an hour in her room. Then, we went to a nearby indoor playground with her brothers. The consultant was awesome about gathering kids to play with Elise. We played duck-duck-goose, tag, ring around the rosies, follow-the-leader and other things. It was hard for Elise to wait her turn and follow along, but she was so HAPPY. It was such a joy to us to see how happy she was to be able to play with the other children. I've never seen her try so hard and enjoy herself so much in this situation. It's a beginning and hopefully a start to being able to develop some relationships with peers. During duck-duck-goose, she would get really smily and excited anticipating the "goose". I loved seeing her like this!
We finally received our letter from the school district about starting speech services. We have yet to receive anything about the OT services. I spoke with her current speech therapist and contacted the vendor she noted (she didn't "recommend" as I think she can't do that, but she did note one in particular). I am meeting with that provider at 9am on Tuesday. It's really far from where we live, like a 45 minute drive. I find it suspicious that there is no one closer. I also find it suspicious that we received the letter on 7/29 and the vendors close during the month of August. I think the school is working to ensure that we don't have the opportunity to use all of the hours we agreed to in mediation. I do sympathize with the situation that these school districts are facing. Federal mandates require much in regards to special needs children yet provide a very low actual percentage of the funding for these requirements. The state is broke and the county is also in bad shape. The number of autistic children is growing rapidly. The system is very stretched. While I understand this, I refuse to let Elise fall through the cracks. I battle the selfishness of how hard I'm working to ensure that Elise gets everything knowing that many other children like her are not receiving the same. However, if Elise gets less, it's not like those children will get more. There would just be that much less given. At least this is how I rationalize. This autism crisis is just bad. I have no answers. I just hope that there are others who are coming closer to having answers.
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