The school district has managed to exceed my exceedingly low expectations by coming in even lower. Yesterday late morning, we learned that Elise will begin school on Monday in the 10:40-1:00 class. We have worked for the last two months to set her schedule with all 4 of her outside therapies around the fact that she will be in school from 8:00 to 10:20. Sometimes there is nothing to do but laugh.
While hubby then spent time in the afternoon meeting with Elise's new teacher and the vice principal and searching for the correct documentation to enroll Elise, I spent the afternoon trying to determine which schedules are now conflicting and resolving the conflict. Fortunately, it "only" effected 2 of the 4 therapies. The DTT/ABA agency was quick to respond and completely revamp Elise's schedule. Yea for them! The speech therapist is not so able to work things out for us. It's not for a lack of trying, it's just that she's also a mom with young children and her schedule was already set with all of her clients for the fall. The times she's offered aren't great because it requires B going along to speech with the babysitter. I'll have to figure out a different arrangement there.
Work has continued to be very stressful. I now have no great options but to pick up A from school each afternoon and return him home. This takes 1 hour door to door, basically a lunch hour. However, it's a very late lunch and, based on last week, work is not really all that accomodating to the schedule. It's doubtful that somewhere new would be accomodating either as I'd be a new employee. I understand that this isn't ideal, but I just don't know what else to do. I could pay for the after-school care program for A, but I hate the idea of having him in school from 8-5 each day when he's only 5, especially when I'm already paying for childcare at home. At some point, working becomes cost prohibitive, especially now that I'm looking at needing to send B to his school for longer days on Elise's afternoon therapy days. Top that off with the fact that we're being hammered by taxes and I'm not sure that I'm really making any money working. The bonuses to working are that I get something for myself that isn't entirely focused around the children and that it keeps our wonderful nanny employed. Frankly, with the challenges we face and having no family and few friends in the area to help us, losing her is very scary. Plus, she's awesome with Elise, cares greatly about all the childen and has been a tremendous help to us all throughout these difficult years. She's a single mom herself, the economy is tough right now and I wouldn't feel right "kicking her to the curb". I also fear that I'd go crazy being home alone with the kids and the therapists all day every day. It's just a really tough decision. I also feel super guilty about how little extra I can do for the boys because of my work schedule and stress and primarily because of Elise's therapies. They give up so much because of their sister's problems and now, they'll possibly have to start spending long days in school/day care before they're ready. It's a real conundrum, my word of the day.
These are the things in my head today. Given that it's only 5:00 am, it's pretty heavy material to digest.
I found a doctor very close to us who sees autistic children and examines all their issues. He works with a theory of neuro-immune problems in these children and off the fact that autism is a medical problem, not a psychiatric condition. I definitely agree with this and am hopeful that he can help us identify and possibly resolve some root medical conditions that Elise is suffering. He has not found a "cause" for autism, but has found clues and is a huge proponent/advocate of treating autism as a disease of epidemic proportions and funding research for it as such. I pray that the funding places are listening, but all signs point to the fact that they are not listening enough. In CA, autism spectrum disorder now strikes 1 in 91 children. Does it need to become 1 in 25 before it's addressed properly? Who's going to support these children in the future? I also find so much ignorance from people about this statistic. I've heard, "Yes, but how many of those children are high-functioning or 'just' Aspergers?" Wake up people, high functioning is an arbitrary label and both high functioning and Aspergers individuals can also face significant impairments in their abilities to function independently in society. Conversely moderate autistics can be taught to function independently with lots of help and finding a niche for themselves. It just depends on how the disorder manfiests. Look at Temple Grandin. I'm no doctor or diagnostician, but she certainly does not sound as though she was high functioning as a young child and she still shows obvious autistic issues. But she's amazing and a heroine. Maybe this is just the chip on my shoulder because Elise does not fit the high functioning or Aspergers label. My point is that the labels are arbitrary and somewhat meaningless. It's the individuals and the particular symptoms and behaviors that they experience. Elise is incapable of obtaining the "better" labels because of her speech difficulties. She is perpetually boxed as lower functioning because she doesn't talk. However, she has some other fantastic points above and beyond verbose autistics, who by the way may just be echolalic. For crying out loud, I wasn't very intelligible until 5 and I'm not a low-functioning autistic.
Sorry, I went off on a tangent there. This is stemming from hubby's discussion with Elise's teacher and vice principal yesterday. They both wanted to know what box she fit into and their questions seemed a bit biased to him. I fear that she is being set up to fail before she even begins and it makes me ache for her. Just give her a chance as an individual. She needs to be exposed to typical children even though she can't talk yet. How the heck is she supposed to learn to function in society and live independently someday if she's only with other very impaired children? The speech will come someday. I know it will. I just need to protect her until that time to make sure that she isn't labeled as low-functioning or mentally retarded until that happens.
This is our mission. We didn't chose to accept it, it was thrust upon us. We're not backing down. She will succeed. She has the determination and desire and parents willing and able to provide every opportunity to her and the power of that cannot be underestimated.
Friday, September 17, 2010
Sunday, September 12, 2010
Moving Right Along
We've received Elise's new schedule for the fall. She has all new consultants for her at-home therapy - 2 guys this time, I think that's more unusual. It'll be good for her to be exposed to male teachers also. She's moving along in her speech therapy and in her occupational therapy. School is still a giant question mark. It starts tomorrow morning at 8 am. However, Elise won't be there. We haven't registered her, found out about her aide or anything else for that matter. My expectations of the school district are now so incredibly low that this does not phase me in the least. We'll call in the morning and "ask" when we should show up for class that day. Of course, we know that she can't be included given that nothing is set up yet, but nothing will happen until we get really pushy again. We've tried over the last 2-3 weeks to get this set-up. However, with the school furlow days and the budget cuts, there was no one to speak with about Elise. Like I said, my expectations have been met. Easy to do when they're so low!
A's first day of kindergarten is tomorrow morning. It's pretty exciting - a new period of life for all of us. There's a PTA meet and greet from 8-9 in the morning after the kids are dropped off for the school day. I actually plan on joining the PTA. I figure that with Elise's special needs, it's best that I become well-known in a positive way by the school's administration. In 2 years, Elise will be attending school there. There's always the side issue of helping out in A's education ;-0
Tomorrow is also the day that I meet with the surgeon. I'm hoping that I can get the surgery scheduled very quickly. This week would be awesome. I was having pain today again. It's just becoming more frequent and now that I've educated myself more about the risks and know what it is, I'm more worried when the pain happens.
In addition to reading the autism book that I started last week, I've been researching gallbladder disease, thyroid issues, headaches and other such ailments. In doing this research, I've stumbled into this hypothesis that there is something off about me resulting in inflammations. I mean, I'm not severely or even moderately ill or anything of the sort, but I'm becoming suspicious that my health issues may have some sort of link to Elise's issues. I read about how unexplained infertility and pre-eclampsia is theorized to raise the risk of autism and I start to wonder if maybe looking for a cause for Elise is worthwhile. If she is suffering from neuro-immune issues, there are things that could help her. In doing this research, I've found a pediatrician very nearby who works with autistic children and neuro-immune disorders. I feel it's worth looking into because there are just enough things causing me to question whether there is more we can do for her medically. At the very least, he'll be able to order some of the DAN protocol testing that Elise has never had performed. I really don't see many metabolic issues with Elise, but I do believe there may be immune issues for her.
Tonight I went to a TACA meeting. There was a speaker there discussing how to facilitate play and playdates for our autistic children. It was a good meeting. Unfortunately, I couldn't stay and mingle after the meeting because I had to get home to put the little ones to bed. It was a friendly seeming group and I look forward to learning more from the group.
Elise seemed to have a good day today. She had no tantrums, one accident (hubby forgot she was sitting on the toilet - we've been a bit preoccupied lately) and went out with us to 4 different places during the day. We're fortunate that she is easy to take out in the community. At the 3rd place, a very crowded grocery store, she started making her odd sounds. I told her "Elise, quiet mouth" and she mimiced zipping her mouth and stopped making the inappropriate noises immediately. She is learning.
A's first day of kindergarten is tomorrow morning. It's pretty exciting - a new period of life for all of us. There's a PTA meet and greet from 8-9 in the morning after the kids are dropped off for the school day. I actually plan on joining the PTA. I figure that with Elise's special needs, it's best that I become well-known in a positive way by the school's administration. In 2 years, Elise will be attending school there. There's always the side issue of helping out in A's education ;-0
Tomorrow is also the day that I meet with the surgeon. I'm hoping that I can get the surgery scheduled very quickly. This week would be awesome. I was having pain today again. It's just becoming more frequent and now that I've educated myself more about the risks and know what it is, I'm more worried when the pain happens.
In addition to reading the autism book that I started last week, I've been researching gallbladder disease, thyroid issues, headaches and other such ailments. In doing this research, I've stumbled into this hypothesis that there is something off about me resulting in inflammations. I mean, I'm not severely or even moderately ill or anything of the sort, but I'm becoming suspicious that my health issues may have some sort of link to Elise's issues. I read about how unexplained infertility and pre-eclampsia is theorized to raise the risk of autism and I start to wonder if maybe looking for a cause for Elise is worthwhile. If she is suffering from neuro-immune issues, there are things that could help her. In doing this research, I've found a pediatrician very nearby who works with autistic children and neuro-immune disorders. I feel it's worth looking into because there are just enough things causing me to question whether there is more we can do for her medically. At the very least, he'll be able to order some of the DAN protocol testing that Elise has never had performed. I really don't see many metabolic issues with Elise, but I do believe there may be immune issues for her.
Tonight I went to a TACA meeting. There was a speaker there discussing how to facilitate play and playdates for our autistic children. It was a good meeting. Unfortunately, I couldn't stay and mingle after the meeting because I had to get home to put the little ones to bed. It was a friendly seeming group and I look forward to learning more from the group.
Elise seemed to have a good day today. She had no tantrums, one accident (hubby forgot she was sitting on the toilet - we've been a bit preoccupied lately) and went out with us to 4 different places during the day. We're fortunate that she is easy to take out in the community. At the 3rd place, a very crowded grocery store, she started making her odd sounds. I told her "Elise, quiet mouth" and she mimiced zipping her mouth and stopped making the inappropriate noises immediately. She is learning.
Thursday, September 9, 2010
How much more?
So, today I'm busy feeling sorry for myself. That is, in between intense anger, frustration and disappointment, I'm feeling sorry for myself. My work has become horrendous. Remember how I wrote that I was stressed about the time I needed off Tuesday and Wednesday? Tuesday for Elise's doctor appointment and to pick up / drop off kids since hubby was working 2 hours away in Huntington Beach. Wednesday for A's kindergarten orientation and Elise's first speech therapy session. Well, I was right to be stressed. It blew up for me. Mind you, I worked 3 hours or so from home on Tuesday night so I met all of my deadlines with quality work but apparently I need to be concerned with "perceptions". F#$* perceptions. Excuse me, that would be the extreme anger surfacing again. I'm doing the best I can do and I'm really sick of succeeding but failing because of idiot people's perceptions. Show me where I'm failing, because I'm not. I don't have time to concern myself with what idiots may think. I've got a child that's desperate for my help and the clock is ticking on healing her.
Today, I planned on spending the whole day at work, eating at my desk while working per usual. I had a tight deadline for something that couldn't be started until this morning and needed to be done by 1. I arrive to an e-mail requesting that I finish some other work by 1:30. This was a bit stressful. However, I just sat down and began plugging away at the work. I completed the first big project by 12:30. That left me enough time to adequately make the 1:30 deadline. This was a great plan, except for the fact that by 12 the stress must have kicked in and I ended up with a lot of back pain (according to the doctor this is from my gallbladder). I had chills and found it difficult to sit at the computer with the pain. It's hard to explain, but when the pain hits, it's incredibly intense. I told my boss that I had to go home for my medicine, so I probably couldn't make the 1:30 deadline, it would be closer to 2. Once I left the office, the pain eased up a bit so I just picked up some Tums at a nearby drugstore and went back to work. I finished the other deadline at 1:34. Pretty good - I was proud of myself and feeling better. Then, I get a phone call from my "boss". He talks to me about the fact that my time off isn't creating a good "perception" (remember, the Tums run to the drugstore was during a typical lunchtime which I almost never take). I asked whether there was any problem with me meeting deadlines or with my work quality. Of course there are none, it's all about "perceptions". I was furious. I explained that appointments for an endoscopy, ultrasound and surgeon visit are a neccessity and can't be done "after hours". I would expect that my "boss" could back me up to anyone who questioned my time off based on their "perceptions". Apparently, I expected him to be a person with a backbone, which he's not. I suspect that the real issue stems from the upheaval in the department and all the nasties emerging to show their true colors and secure their futures there. I have news for them, their careers are probably pretty short-lived at this place. I'm actually anxious for the new CFO to start so that the heads can begin rolling. A major overhaul is needed. If I'm part of it, so be it. There are other places out there. However, my work has a lot of substance and I'm pretty sure I won't be an immediate casualty. My boss on the other hand will be if I'm around because he handed off all his substantive work to me months ago. He pretty much attends meetings now. If I'm gone or he makes me look bad, then he can become more necessary again. I've been here before and I've always been the one left standing. I will be again - deal!
I know, this post is supposed to be about Elise and I made it into a vent session about work instead. It's so frustrating to have work distract me from my true mission - to help Elise. Hey, an employer could do worse. I mean, how much more motivated can an employee be than one who is working so that she can provide the necessary therapies and treatments to save her child? The fat cats underestimate the motivation of the working Joes who work to fill basic needs, not to buy a new yacht. OK, time to stop venting, my back is beginning to hurt again. My friend thinks I should file for a stress leave from work. I've never heard of such a thing, it doesn't sound real and it's not something I envision ever doing even if it was possible. However, fantasizing about it is pleasant in a passive-agressive way.
Today, I planned on spending the whole day at work, eating at my desk while working per usual. I had a tight deadline for something that couldn't be started until this morning and needed to be done by 1. I arrive to an e-mail requesting that I finish some other work by 1:30. This was a bit stressful. However, I just sat down and began plugging away at the work. I completed the first big project by 12:30. That left me enough time to adequately make the 1:30 deadline. This was a great plan, except for the fact that by 12 the stress must have kicked in and I ended up with a lot of back pain (according to the doctor this is from my gallbladder). I had chills and found it difficult to sit at the computer with the pain. It's hard to explain, but when the pain hits, it's incredibly intense. I told my boss that I had to go home for my medicine, so I probably couldn't make the 1:30 deadline, it would be closer to 2. Once I left the office, the pain eased up a bit so I just picked up some Tums at a nearby drugstore and went back to work. I finished the other deadline at 1:34. Pretty good - I was proud of myself and feeling better. Then, I get a phone call from my "boss". He talks to me about the fact that my time off isn't creating a good "perception" (remember, the Tums run to the drugstore was during a typical lunchtime which I almost never take). I asked whether there was any problem with me meeting deadlines or with my work quality. Of course there are none, it's all about "perceptions". I was furious. I explained that appointments for an endoscopy, ultrasound and surgeon visit are a neccessity and can't be done "after hours". I would expect that my "boss" could back me up to anyone who questioned my time off based on their "perceptions". Apparently, I expected him to be a person with a backbone, which he's not. I suspect that the real issue stems from the upheaval in the department and all the nasties emerging to show their true colors and secure their futures there. I have news for them, their careers are probably pretty short-lived at this place. I'm actually anxious for the new CFO to start so that the heads can begin rolling. A major overhaul is needed. If I'm part of it, so be it. There are other places out there. However, my work has a lot of substance and I'm pretty sure I won't be an immediate casualty. My boss on the other hand will be if I'm around because he handed off all his substantive work to me months ago. He pretty much attends meetings now. If I'm gone or he makes me look bad, then he can become more necessary again. I've been here before and I've always been the one left standing. I will be again - deal!
I know, this post is supposed to be about Elise and I made it into a vent session about work instead. It's so frustrating to have work distract me from my true mission - to help Elise. Hey, an employer could do worse. I mean, how much more motivated can an employee be than one who is working so that she can provide the necessary therapies and treatments to save her child? The fat cats underestimate the motivation of the working Joes who work to fill basic needs, not to buy a new yacht. OK, time to stop venting, my back is beginning to hurt again. My friend thinks I should file for a stress leave from work. I've never heard of such a thing, it doesn't sound real and it's not something I envision ever doing even if it was possible. However, fantasizing about it is pleasant in a passive-agressive way.
Wednesday, September 8, 2010
New Speech Therapy
Today Elise started her new speech therapy. I think she did great, but others may not agree. I'm possibly seeing the world through "rose-colored glasses". If you take away the 1/2 of the session where she was throwing fake trantrums, then she really did well. She seemed to majorly be testing how hard she really had to work. She signed more than I've ever seen her do and sometimes spontaneously said the words while signing them. I was really proud of her. I think the owner of the clinic was worried about how we'd handle hearing Elise scream like that, but, while I don't like to hear it, I'm sadly quite used to it and able to tune it out and focus on the positive. If I fell apart everytime Elise faced difficulty, I'd always be falling apart. That's not an option, so I deal with it and move on.
Yesterday, Elise was sick so I cancelled all of her sessions, including her old speech therapy. We visited the doctor and discovered it was just a cold, as I suspected. I explained that I'm overzealous about bringing Elise in because I hate having her miss out on therapy time. Her pediatrician totally understood and actually told me to call her if Elise is sick on a weekend because since she lives close by, she will try to see her then so that we can get her better quickly. She's been incredibly supportive about helping Elise. It's amazing the wonderful and supportive people we meet on this journey. In fact, they definitely outnumber the naysayers, but the naysayers really do hurt.
We survived these two incredibly busy days. I worked a couple of hours after the kids went to bed last night. I should work again tonight, but I don't feel like it. I scheduled an appointment with a surgeon for Monday. Hopefully, I can get the surgery done very soon so that I can recover and close the chapter on this gallbladder thing. It's just one more thing to deal with.
I started reading a new book last night titled "Healing the New Childhood Epidemics" by Dr. Kenneth Bock. I'm only in the beginning, but so far I really like it. I hope that I find some good ideas for helping Elise.
In spite of the 1/2 hour of screaming, I'm considering the new speech a success. I'm really excited to have Elise begin a play-based therapy focused program since she's becoming a bit robotic after learning only through ABA/DTT. While I easily see that she's needed ABA/DTT very much and continues to need it as her primary mode to learning, I think she's ready for a limited amount of self-guided treatments also.
Yesterday, Elise was sick so I cancelled all of her sessions, including her old speech therapy. We visited the doctor and discovered it was just a cold, as I suspected. I explained that I'm overzealous about bringing Elise in because I hate having her miss out on therapy time. Her pediatrician totally understood and actually told me to call her if Elise is sick on a weekend because since she lives close by, she will try to see her then so that we can get her better quickly. She's been incredibly supportive about helping Elise. It's amazing the wonderful and supportive people we meet on this journey. In fact, they definitely outnumber the naysayers, but the naysayers really do hurt.
We survived these two incredibly busy days. I worked a couple of hours after the kids went to bed last night. I should work again tonight, but I don't feel like it. I scheduled an appointment with a surgeon for Monday. Hopefully, I can get the surgery done very soon so that I can recover and close the chapter on this gallbladder thing. It's just one more thing to deal with.
I started reading a new book last night titled "Healing the New Childhood Epidemics" by Dr. Kenneth Bock. I'm only in the beginning, but so far I really like it. I hope that I find some good ideas for helping Elise.
In spite of the 1/2 hour of screaming, I'm considering the new speech a success. I'm really excited to have Elise begin a play-based therapy focused program since she's becoming a bit robotic after learning only through ABA/DTT. While I easily see that she's needed ABA/DTT very much and continues to need it as her primary mode to learning, I think she's ready for a limited amount of self-guided treatments also.
Monday, September 6, 2010
When is there time to work?
This is shaping up to be a very intense week. I'm not exactly sure where work is going to fit into the picture. Tomorrow, I need to run Elise to her pediatrician as she is showing signs of bronchitis again. Poor child. I don't understand why she gets sick so often. I do worry it's because of the intense schedule she maintains. However, when she's not scheduled, she's spinning alone in her own world. Which is the lesser of two evils?
Wednesday, I am taking a late lunch to go to A's kindergarten orientation. I'm hoping that I'll be able to sign him up for the afternoon drama club. It's one of the only programs open to the kindergarten kids and he actually really comes to life on a stage. It hopefully will be good for his confidence and occupy him for one afternoon a week. I also have to sign him up for T-Ball and karate on Saturdays with the park district. We're also signing up B for T-Ball. Both classes are attended by a parent (Daddy), so it'll be nice for them.
Later on Wednesday, Elise has her first speech therapy session at 5:00 p.m. Hubby and I both want to attend to get things started on the right track. That means leaving working by 4 since the place is a 45-60 minute drive and it'll be almost rush hour. Fun times.
The priority this week is getting an appointment with a surgeon to get my gallbladder removed as soon as possible. We had a playdate with one of A's old friends today. Her mother is a retired outpatient surgery charge nurse and her husband is an anethesiologist, so I received some recommendations of surgeons from her. I think I'll just go with her recommendation since I wouldn't know whom to choose otherwise. I checked them out on the internet and nothing stood out as a problem.
So, all of this and I need to close the corporate books for period 8 by Wednesday. See, there is no time for work. I'm exhausted thinking about it all. I just remembered that I also need to have the dog into the vet for a recheck on his ear infection and to update his shots this week.
Sorry this ended up an impromptu to-do list. My mind is just racing. Elise is not doing well. She's stimmy and inattentive. She's having lots of accidents and she's tantruming more often. I attribute this to her being ill, so I'm for once not overly worried. I just want her healed!
Wednesday, I am taking a late lunch to go to A's kindergarten orientation. I'm hoping that I'll be able to sign him up for the afternoon drama club. It's one of the only programs open to the kindergarten kids and he actually really comes to life on a stage. It hopefully will be good for his confidence and occupy him for one afternoon a week. I also have to sign him up for T-Ball and karate on Saturdays with the park district. We're also signing up B for T-Ball. Both classes are attended by a parent (Daddy), so it'll be nice for them.
Later on Wednesday, Elise has her first speech therapy session at 5:00 p.m. Hubby and I both want to attend to get things started on the right track. That means leaving working by 4 since the place is a 45-60 minute drive and it'll be almost rush hour. Fun times.
The priority this week is getting an appointment with a surgeon to get my gallbladder removed as soon as possible. We had a playdate with one of A's old friends today. Her mother is a retired outpatient surgery charge nurse and her husband is an anethesiologist, so I received some recommendations of surgeons from her. I think I'll just go with her recommendation since I wouldn't know whom to choose otherwise. I checked them out on the internet and nothing stood out as a problem.
So, all of this and I need to close the corporate books for period 8 by Wednesday. See, there is no time for work. I'm exhausted thinking about it all. I just remembered that I also need to have the dog into the vet for a recheck on his ear infection and to update his shots this week.
Sorry this ended up an impromptu to-do list. My mind is just racing. Elise is not doing well. She's stimmy and inattentive. She's having lots of accidents and she's tantruming more often. I attribute this to her being ill, so I'm for once not overly worried. I just want her healed!
Saturday, September 4, 2010
Back to OT
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.
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.
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.
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