so i was able to spend a little time away this weekend. i went to see a movie and "chill" by myself. it was nice. i needed it. i feel better than i did when i posted the last post. we chelated on friday night. a combination of EDTA & DMSA (2 suppositories). he was able to tolerate the DMSA this time, so that's great. i know we get better pulls when we do the combo. i worried a little that we'd have to go back to only EDTA after the first 2 tries, but this time, it was fine. so, next weekend, we'll do the same. saturday was rough, as it always is the day after chelation. thankfully, that's the day i had some time for myself. it's hard to watch him when he's having a tough time. yesterday (sunday) was better. he was more aware, and more verbal - whereas on saturday, it was tough to get him to say the things he always says ... without prompting. and yesterday evening, we were back to the 6:30, 7pm bedtime, so that was nice.
we'll see what this week holds, but i'm optimistic once more.
3.30.2009
3.26.2009
one of those days. the ones i hate having.
So, I just sent this to a friend of mine. I'm posting it here, too, because I know there are other moms out there feeling the exact same thing. And somehow that makes me feel a teeny tiny bit better. Lucky friend, huh?!
I'm afraid I'm not much (good) company today. Today's one of "those" days. I'm questioning everything about Holden and his hopeful recovery. Are we doing enough? Should we have stayed with our doctor in Tampa? Even if we wanted to, we couldn't, because he doesn't file insurance so we couldn't afford $300 visits each month. They see patients all over the world, so being here isn't a problem. We could have phone appts. But, like I said - we can't afford them. Is there something I'm missing? A therapy? Supplement? Treatment? Did we make the right decision to leave Dr. Berger's practice? I mean, isn't it worth living out of a paperbag if we have to, to get him the best treatment possible? I feel like we're dragging along now...not making much progress at all. What am I doing wrong? Why isn't he making more progress with speech? Why is he up everynight this week til 9pm, stimming away in the bedroom until his little body gives up and finally goes to sleep because it has no choice?
I guess it's just been a tough week, transitioning back to school. I keep telling myself that it's because he just needs to get back into the "groove" and that he'll be fine and we'll continue on the road to recovery and making progress.
But he will be 4 in exactly 15 days and that scares me. I had hoped we would be so much further along when he turned 4. Two years ago, I looked at "4" and thought that he would definitely be able to understand it was his birthday by then, surely, right? And, he would be talking in sentences, and telling me he loves me, right? And he would be playing with his little brother by then, and enjoying others, right? At least a little. Those are the thoughts I had and none of them are coming true and it just really really sucks.
I'm afraid I'm not much (good) company today. Today's one of "those" days. I'm questioning everything about Holden and his hopeful recovery. Are we doing enough? Should we have stayed with our doctor in Tampa? Even if we wanted to, we couldn't, because he doesn't file insurance so we couldn't afford $300 visits each month. They see patients all over the world, so being here isn't a problem. We could have phone appts. But, like I said - we can't afford them. Is there something I'm missing? A therapy? Supplement? Treatment? Did we make the right decision to leave Dr. Berger's practice? I mean, isn't it worth living out of a paperbag if we have to, to get him the best treatment possible? I feel like we're dragging along now...not making much progress at all. What am I doing wrong? Why isn't he making more progress with speech? Why is he up everynight this week til 9pm, stimming away in the bedroom until his little body gives up and finally goes to sleep because it has no choice?
I guess it's just been a tough week, transitioning back to school. I keep telling myself that it's because he just needs to get back into the "groove" and that he'll be fine and we'll continue on the road to recovery and making progress.
But he will be 4 in exactly 15 days and that scares me. I had hoped we would be so much further along when he turned 4. Two years ago, I looked at "4" and thought that he would definitely be able to understand it was his birthday by then, surely, right? And, he would be talking in sentences, and telling me he loves me, right? And he would be playing with his little brother by then, and enjoying others, right? At least a little. Those are the thoughts I had and none of them are coming true and it just really really sucks.
3.25.2009
missing the 6:30pm bedtimes
It's 8pm and Holden's still awake. SO not like him. Not sure what's going on, but I'm giving in a few days and hopefully I'll have my sleeping little angel back! uggg.
regressions? transitions?
Holden went back to school on Monday after Spring Break and a visit with grandma. She was in town the whole week. He cried when I dropped him off on Monday, but was okay Tuesday and today. He STILL has not used the bathroom at school. He's holding it all day and going when he gets home. The kid must have a bladder of steel. I just wished he'd go...just once, so he could get some praise and reinforcement and know that it's "okay" to go there.
He's been coming home from school and stimming, pretty much constantly until dinner/bath/bed. He used to be out like a light by 6:30, 7:00pm. The past 2 nights, he's been up till 8, 8:45pm. He'll go to bed, but seems to lay there and stim for hours before he falls asleep.
I'm hoping this is all due to the transition of going back to school and that by tomorrow, or Friday, he will be back on track. I haven't done anything else differently, so its all I can come up with that may be causing his current issues. He's a little more withdrawn, spacey, and less verbal. He's not labeling his language builder cards as much, but merely stimming off of them - flipping through them over and over again.
Please God let this end soon! Here's to another ride on the rollercoaster that is autism...
He's been coming home from school and stimming, pretty much constantly until dinner/bath/bed. He used to be out like a light by 6:30, 7:00pm. The past 2 nights, he's been up till 8, 8:45pm. He'll go to bed, but seems to lay there and stim for hours before he falls asleep.
I'm hoping this is all due to the transition of going back to school and that by tomorrow, or Friday, he will be back on track. I haven't done anything else differently, so its all I can come up with that may be causing his current issues. He's a little more withdrawn, spacey, and less verbal. He's not labeling his language builder cards as much, but merely stimming off of them - flipping through them over and over again.
Please God let this end soon! Here's to another ride on the rollercoaster that is autism...
3.17.2009
(appropriate) spontaneous language
I noticed today that Holden's saying more things without prompts. Some things he's saying now, spontaneously:
"pee pee in the potty"
"undies up!"
"pants up!"
"juice"
"cookie"
"cake"
"cards" (for language builder cards - loves these)
"book"
"tree" (while we were riding in the car and driving by trees)
"all done!"
"wash" (for washing his hands after potty)
"flush" (for the toilet, obviously)
"iggles" (wiggles)
He's labeling lots of things now, too. And taking objects and counting them (like he's doing now with GFCF pretzels). He's also copying Jackson alot. Jackson says "sissy, bubba, sissy, bubba". Holden looks at him and starts doing the same thing now. And sometimes, it's spontaneous and he just says it on his own.
Right now, he's outside sitting at a table, counting pretzels with his grandmother.
And his eye contact today? Insanely great!
OHHHH, and today, I took this picture of him. Playing with a firetruck - yes, appropriately. AND without prompting. He just went to it and started playing.
Today's a good day.
"pee pee in the potty"
"undies up!"
"pants up!"
"juice"
"cookie"
"cake"
"cards" (for language builder cards - loves these)
"book"
"tree" (while we were riding in the car and driving by trees)
"all done!"
"wash" (for washing his hands after potty)
"flush" (for the toilet, obviously)
"iggles" (wiggles)
He's labeling lots of things now, too. And taking objects and counting them (like he's doing now with GFCF pretzels). He's also copying Jackson alot. Jackson says "sissy, bubba, sissy, bubba". Holden looks at him and starts doing the same thing now. And sometimes, it's spontaneous and he just says it on his own.
Right now, he's outside sitting at a table, counting pretzels with his grandmother.
And his eye contact today? Insanely great!
OHHHH, and today, I took this picture of him. Playing with a firetruck - yes, appropriately. AND without prompting. He just went to it and started playing.
Today's a good day.
3.15.2009
Blinders Won't Reduce Autism - By Jon Poling
Dr. Jon Poling, an Athens neurologist, is an assistant professor at the Medical College of Georgia. His daughter, Hannah Poling, has been a successful petitioner in the National Vaccine Injury Compensation Program.
Blinders Won't Reduce Autism
Friday, March 13, 2009
For the million plus American families touched by autism, like mine, there is real urgency to find scientific answers to help loved ones and prevent future victims. Unfortunately, some doctors still fail to even accept the increasing autism rate as real, rather than their own better diagnosis. The collateral damage of 'better diagnosis', the idea that we are simply better at detecting autism, is the abandonment of families coping with autism by the medical establishment, government and private insurance companies.
Beyond the high emotional toll autism takes on a family, many have been financially ruined. Public school systems are drowning in the red ink of educating increasing numbers of special-needs students. Fortunately, the 'better diagnosis' myth has been soundly debunked. In the 2009 issue of Epidemiology, two authors analyzed 1990 through 2006 California Department of Developmental Services and U.S. Census data documenting an astronomical 700 to 800 percent rise in the disorder. These scientists concluded that only a smaller percentage of this staggering rise can be explained by means other than a true increase.
Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear -- genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities.
We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes ” vaccines” are all in the research agenda.
An inspiring new text, "Autism-Current Theories and Evidence" has successfully navigated the minefield of autism science without touching the third rail, as Dr. Sanjay Gupta aptly describes the vaccine-autism debate. Dr. John Zimmerman, who has studied autism for decades, prophetically writes, "The clinical heterogeneity of this disorder, together with the inherent dynamic changes during children's growth and development, confound static, linear models and simplistic, unilateral approaches."
Zimmerman's book is dense with cutting-edge science on cell biology, metabolism, oxidative stress, neuroinflammation, auto-immunity and brain pathology. That's right, autism isn't simply a genetic program for brain development gone awry. Dr. Martha Herbert, of Harvard Medical School, writes the final chapter defining autism in the larger framework of a multiple organ system disease with potentially reversible impairments.
As an affected parent, I am left with a sense of hope that these professionals will produce results to stem the tide of new autism cases and ameliorate symptoms of those currently suffering. On the other hand, Dr. Paul Offit, the vaccine inventor whose Rotateq royalty interests recently sold for a reported $182 million, has written a novel of perceived good and evil called "Autism's False Prophets" The tome is largely a dramatic account of why Offit, who self-admittedly is not an autism expert, feels vaccines should be exonerated in the autism epidemic. In the story, Offit takes no prisoners, smearing characters in the vaccine-autism controversy as effortlessly as a rich cream cheese. "False Prophets" has curiously garnered support from several senior physicians in respected medical journals.
After Offit's drama is complete, these cheerleaders fail to realize they have traveled the road labeled "Dead End -- No Through Traffic". In his epilogue, Offit credits autism parents who have likewise gone down the dead end path to autism acceptance, without search for cause or cure.
As both parent and doctor, I cannot fathom turning my back on a child nor science, in order to avoid inconvenient questions about vaccine safety or any other reasonable environmental factor.
President Obama has recognized that we've seen just a skyrocketing autism rate and plans to appoint an autism czar to coordinate his policy efforts. Science is moving forward to connect the three dots of environment, genes and plasticity of a developing child's brain circuitry. In the end, logic and reason will prevail over politics and profits.
Blinders Won't Reduce Autism
Friday, March 13, 2009
For the million plus American families touched by autism, like mine, there is real urgency to find scientific answers to help loved ones and prevent future victims. Unfortunately, some doctors still fail to even accept the increasing autism rate as real, rather than their own better diagnosis. The collateral damage of 'better diagnosis', the idea that we are simply better at detecting autism, is the abandonment of families coping with autism by the medical establishment, government and private insurance companies.
Beyond the high emotional toll autism takes on a family, many have been financially ruined. Public school systems are drowning in the red ink of educating increasing numbers of special-needs students. Fortunately, the 'better diagnosis' myth has been soundly debunked. In the 2009 issue of Epidemiology, two authors analyzed 1990 through 2006 California Department of Developmental Services and U.S. Census data documenting an astronomical 700 to 800 percent rise in the disorder. These scientists concluded that only a smaller percentage of this staggering rise can be explained by means other than a true increase.
Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear -- genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities.
We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes ” vaccines” are all in the research agenda.
An inspiring new text, "Autism-Current Theories and Evidence" has successfully navigated the minefield of autism science without touching the third rail, as Dr. Sanjay Gupta aptly describes the vaccine-autism debate. Dr. John Zimmerman, who has studied autism for decades, prophetically writes, "The clinical heterogeneity of this disorder, together with the inherent dynamic changes during children's growth and development, confound static, linear models and simplistic, unilateral approaches."
Zimmerman's book is dense with cutting-edge science on cell biology, metabolism, oxidative stress, neuroinflammation, auto-immunity and brain pathology. That's right, autism isn't simply a genetic program for brain development gone awry. Dr. Martha Herbert, of Harvard Medical School, writes the final chapter defining autism in the larger framework of a multiple organ system disease with potentially reversible impairments.
As an affected parent, I am left with a sense of hope that these professionals will produce results to stem the tide of new autism cases and ameliorate symptoms of those currently suffering. On the other hand, Dr. Paul Offit, the vaccine inventor whose Rotateq royalty interests recently sold for a reported $182 million, has written a novel of perceived good and evil called "Autism's False Prophets" The tome is largely a dramatic account of why Offit, who self-admittedly is not an autism expert, feels vaccines should be exonerated in the autism epidemic. In the story, Offit takes no prisoners, smearing characters in the vaccine-autism controversy as effortlessly as a rich cream cheese. "False Prophets" has curiously garnered support from several senior physicians in respected medical journals.
After Offit's drama is complete, these cheerleaders fail to realize they have traveled the road labeled "Dead End -- No Through Traffic". In his epilogue, Offit credits autism parents who have likewise gone down the dead end path to autism acceptance, without search for cause or cure.
As both parent and doctor, I cannot fathom turning my back on a child nor science, in order to avoid inconvenient questions about vaccine safety or any other reasonable environmental factor.
President Obama has recognized that we've seen just a skyrocketing autism rate and plans to appoint an autism czar to coordinate his policy efforts. Science is moving forward to connect the three dots of environment, genes and plasticity of a developing child's brain circuitry. In the end, logic and reason will prevail over politics and profits.
3.10.2009
update on language, etc...
I haven't posted much lately about Holden's speech and how it's improving. I wanted to create a post to remind me of what's he's done lately.
About 3 weeks ago, I started something new - supplement wise. A friend told me about a "mitochondrial cocktail" and what she had done with her son - who's DAN doctor suspected a mito-disorder. Now, a while back, we had Holden screened for mito issues. His tests did show a severe carnitine deficiency. His other tests did not point to any major mito issues. However, due to the delicate nature of the tests - and the fact that they needed to be processed IMMEDIATELY to produce accurate results - I think we may have gotten a false negative. We had his bloodwork done and they had to ship off the blood to another lab - which took at least overnight. These tests needed to be done in-house, however, we couldn't find a local hospital that would do the tests in-house. So, we settled for the next best thing.
Anyway, Holden displays a lot of symptoms of a mitochondrial disorder. A list of symptoms can be seen here: .
So, a friend told me how she had started supplementing with CoQ10 & Riboflavin (Vit B2). I decided to give it a try and started about 3 weeks ago. Only giving a very small dose of both at first to make sure Holden could/would tolerate both.
Now, I'm not sure if it was just a coincidence, or if it has anything to do with it, but it seems that he's much happier, more engaging, eye contact is better, and his speech is noticably improving. He's singing along with the TV. He's using a LOT of echolalia now, and even has some appropriate responses to questions. He's labeling like crazy - language builder cards are his favorite, but labeling pictures in books, on tv, etc. Labels I've heard lately: baby, dog, pants, shirt, ball, duck, kitty cat, grass, chair, and the list goes on and on and on. He even knows his brother's name now when asked "who is this?" and pointing to Jackson. He also says "Hi Zoe", and "Bye Zoe" when she's dropped off at school and picked up. Those 2 things are prompted, but that's okay! The labeling is not prompted though.
So, who knows if it has anything to do with the CoQ10 or B2, but I'm going to continue, just in case.
About 3 weeks ago, I started something new - supplement wise. A friend told me about a "mitochondrial cocktail" and what she had done with her son - who's DAN doctor suspected a mito-disorder. Now, a while back, we had Holden screened for mito issues. His tests did show a severe carnitine deficiency. His other tests did not point to any major mito issues. However, due to the delicate nature of the tests - and the fact that they needed to be processed IMMEDIATELY to produce accurate results - I think we may have gotten a false negative. We had his bloodwork done and they had to ship off the blood to another lab - which took at least overnight. These tests needed to be done in-house, however, we couldn't find a local hospital that would do the tests in-house. So, we settled for the next best thing.
Anyway, Holden displays a lot of symptoms of a mitochondrial disorder. A list of symptoms can be seen here: .
So, a friend told me how she had started supplementing with CoQ10 & Riboflavin (Vit B2). I decided to give it a try and started about 3 weeks ago. Only giving a very small dose of both at first to make sure Holden could/would tolerate both.
Now, I'm not sure if it was just a coincidence, or if it has anything to do with it, but it seems that he's much happier, more engaging, eye contact is better, and his speech is noticably improving. He's singing along with the TV. He's using a LOT of echolalia now, and even has some appropriate responses to questions. He's labeling like crazy - language builder cards are his favorite, but labeling pictures in books, on tv, etc. Labels I've heard lately: baby, dog, pants, shirt, ball, duck, kitty cat, grass, chair, and the list goes on and on and on. He even knows his brother's name now when asked "who is this?" and pointing to Jackson. He also says "Hi Zoe", and "Bye Zoe" when she's dropped off at school and picked up. Those 2 things are prompted, but that's okay! The labeling is not prompted though.
So, who knows if it has anything to do with the CoQ10 or B2, but I'm going to continue, just in case.
potty training
We started potty training, hesitantly, on February 23rd. Needless to say, I was extremely stressed even thinking about potty training. It was written into his IEP with the school district, so thankfully, I had the expertise of his teacher (ABA therapist). They follow the Azrin & Foxx method of potty training and she explained everything to me in detail before we started. There's a punishment component to this method, which is what had me the most nervous. I prayed and prayed and prayed there would be FEW accidents so that we didn't have to implement "positive practice" very often.
Well, I am happy and proud to report that 3 full days after starting the program, he initiated on his own. Meaning, he went into the bathroom (without prompts), pulled his pants down (without help), sat on the potty, and went! All unprompted. All on his own. We still had a few accidents even after the 1st initiation. And the 1st weekend at home with him was ... really really stressful for me. We only had 1 accident, on Saturday morning, but after that, he insisted on sitting on the potty for what seemed like hours at a time. I finally gave up and just let him come out when he was ready. I think, looking back, that he was trying extremely hard to avoid "positive practice" and figured if he just sat on the potty, there would be no accidents.
We made it through that weekend and by Wednesday - he brought home his official "potty training certificate"! So, he was officially potty trained. In order for it to be "official", he had to have 20 initiations (like what I mentioned above) WITHOUT any accidents. He did it! Goodbye pullups! And, technically, it only took 9 days. NINE days to potty train. It took me 9 months (or that's what it felt like) to potty train Zoe. Now, mind you, he's still not entirely BM trained ... but that's coming. And, he has gone poop in the potty plenty of times over the past 2 weeks, so he knows what he's supposed to do. He's just a tad bit scared and nervous to sit on the potty and actually go, I think. But, if he picked up on the "pee-pee in the potty", as he says, then it shouldn't be much of a problem to get everything in the potty.
I'm so proud of him.
Well, I am happy and proud to report that 3 full days after starting the program, he initiated on his own. Meaning, he went into the bathroom (without prompts), pulled his pants down (without help), sat on the potty, and went! All unprompted. All on his own. We still had a few accidents even after the 1st initiation. And the 1st weekend at home with him was ... really really stressful for me. We only had 1 accident, on Saturday morning, but after that, he insisted on sitting on the potty for what seemed like hours at a time. I finally gave up and just let him come out when he was ready. I think, looking back, that he was trying extremely hard to avoid "positive practice" and figured if he just sat on the potty, there would be no accidents.
We made it through that weekend and by Wednesday - he brought home his official "potty training certificate"! So, he was officially potty trained. In order for it to be "official", he had to have 20 initiations (like what I mentioned above) WITHOUT any accidents. He did it! Goodbye pullups! And, technically, it only took 9 days. NINE days to potty train. It took me 9 months (or that's what it felt like) to potty train Zoe. Now, mind you, he's still not entirely BM trained ... but that's coming. And, he has gone poop in the potty plenty of times over the past 2 weeks, so he knows what he's supposed to do. He's just a tad bit scared and nervous to sit on the potty and actually go, I think. But, if he picked up on the "pee-pee in the potty", as he says, then it shouldn't be much of a problem to get everything in the potty.
I'm so proud of him.
2.27.2009
2.21.2009
I Love You
I've been waiting sooooo long to hear "I Love You" from Holden, unprompted. He'll say it, if we say..."Say I love you". Or, if we say "I love you", we'll get echolalia and he'll repeat.
Today, I made him come to me and I told him I wanted a hug. So he threw his arms around my neck. While I was hugging him, he said "I tuh you". My response? "I tuh you too!"
I love that kid.
Today, I made him come to me and I told him I wanted a hug. So he threw his arms around my neck. While I was hugging him, he said "I tuh you". My response? "I tuh you too!"
I love that kid.
They're Autistic -- and They're in Love
click on the title of the post - it's worth reading, when you have time.
2.12.2009
vaccines didn't cause autism - or so they say, yet again
Click on the title to link to the CNN story.
This burns me. Someone on CNN made a comment about the story and it's so true. Just like he said ... Pharm companies will always win when it comes to these battles. Because, you can't fight the system with the system. They'll win everytime.
For those of us who live "autism" everyday, we know there's a reason our TYPICAL child regressed after being sick immediately following a set of vaccines. It's just that simple. There are millions of us. Yet, they still refuse to listen. Instead, they post stories like this because (hopefully) the pharm companies are finally taking a hit because people are choosing not to vaccinate. Look at the billboards - they're all over the place. Commercials about vaccinating your babies. You wouldn't have seen these, not even a year ago. So, at least we're making an impact as parents of children affected by vaccines. As Jenny says ... STUDY OUR KIDS. Test kids to make sure they can tolerate the vaccines. It seems so simple, yet they refuse, and instead, publish stories like this so that we all look crazy.
Me = pissed.
This burns me. Someone on CNN made a comment about the story and it's so true. Just like he said ... Pharm companies will always win when it comes to these battles. Because, you can't fight the system with the system. They'll win everytime.
For those of us who live "autism" everyday, we know there's a reason our TYPICAL child regressed after being sick immediately following a set of vaccines. It's just that simple. There are millions of us. Yet, they still refuse to listen. Instead, they post stories like this because (hopefully) the pharm companies are finally taking a hit because people are choosing not to vaccinate. Look at the billboards - they're all over the place. Commercials about vaccinating your babies. You wouldn't have seen these, not even a year ago. So, at least we're making an impact as parents of children affected by vaccines. As Jenny says ... STUDY OUR KIDS. Test kids to make sure they can tolerate the vaccines. It seems so simple, yet they refuse, and instead, publish stories like this so that we all look crazy.
Me = pissed.
2.11.2009
hopes, dreams & wishes
When I pick Holden up from school, they bring him (and other kids in his class) out before the chaos of the actual dismissal bell. So, I usually pull up around 2:30pm, and they bring him out around 2:55pm. Normally, Jackson sleeps while we sit and wait. There's either a middle school or high school in the area as well, and everyday, I watch kids walk by - walking home from school. They're older. Probably in the age range of 12-16 or so. Typically, it's the same kids, sometimes they're different. Today, I realized that I do the same thing each time I see them. I watched one boy, probably 14, 15 years old today, and thought to myself ... God, I pray Holden will be able to do that. I pray he'll walk home from school like other "normal" kids. I hope he'll be independent and be a "typical" teenager. I watched as this kid listened to his iPod, with his backpack on, and typical teenager jeans and tennis shoes. I wondered if he were going home to do homework? Was he going home to get online and talk to his friends? Was he going home to help out around the house (yeah right!)? What was a typical afternoon for him? And I thought, and wondered...does his mother have any idea how incredibly lucky she is that she has healthy (I'm guessing), typical children?
I have to say that I feel a little guilty for thinking these thoughts. I think it's because I've had people tell me that I should love Holden "just the way he is", and not "try to change him to be something he's not". To "accept him!".
My response to those people who think that is I DO love him just the way he is. I love him, unconditionally. How could I not? He's my child. However, I refuse to believe that my little boy is the same inside as he is on the outside. Before he regressed, he was there. The light was on. His eyes sparkled. He laughed. He smiled. His eyes lit up when he saw us come through the door after a day out. He loved his sister. He loved our dog. He played with them both. He tried to communicate.
After he regressed, it all went away. No eye contact. No happiness. No interaction. No hugs. No sparkle in his eyes. Nothing.
I know that my son is still in that little body and mind and soul. I know that the sparkle is there, the love, the hugs, kisses, interaction and sense of humor. So, I refuse to "accept him" the way he is. I will fight to get him back until I do. In the meantime, I appreciate so much, his little triumphs and accomplishments. I savor the hugs (although not often), the kisses. And, I hope, dream, and wish for his recovery, and for the day I can watch him walking home from school with his iPod, backpack, and know that he's going home to be a "typical" teenager.
I have to say that I feel a little guilty for thinking these thoughts. I think it's because I've had people tell me that I should love Holden "just the way he is", and not "try to change him to be something he's not". To "accept him!".
My response to those people who think that is I DO love him just the way he is. I love him, unconditionally. How could I not? He's my child. However, I refuse to believe that my little boy is the same inside as he is on the outside. Before he regressed, he was there. The light was on. His eyes sparkled. He laughed. He smiled. His eyes lit up when he saw us come through the door after a day out. He loved his sister. He loved our dog. He played with them both. He tried to communicate.
After he regressed, it all went away. No eye contact. No happiness. No interaction. No hugs. No sparkle in his eyes. Nothing.
I know that my son is still in that little body and mind and soul. I know that the sparkle is there, the love, the hugs, kisses, interaction and sense of humor. So, I refuse to "accept him" the way he is. I will fight to get him back until I do. In the meantime, I appreciate so much, his little triumphs and accomplishments. I savor the hugs (although not often), the kisses. And, I hope, dream, and wish for his recovery, and for the day I can watch him walking home from school with his iPod, backpack, and know that he's going home to be a "typical" teenager.
2.03.2009
holden's "report card" / iep update
Instead of a "report card", Holden receives an IEP update every 9 weeks. Here it is, in a nutshell:
Goal: Holden will master the skills needed to effectively communicate.
Comments: Holden can independently mand for juice, movie, cookie, raisin, bubbles and beads using sign language and vocal approximation. We require him to sign because his vocal approximations are not clear enough for his teacher to understand what he is asking for. His prompted mands are chips, candy, pins, beads, fish and cake. He has mastered "mama" from the Kaufman Speech Praxis and is working on 3 more words. He is also working on increasing his vocal approximations of mands "movie", "candy", "cookie", and "juice". He is a star at motor imitation having mastered 9 objectives this nine weeks.
Goal: Holden will improve fine and/or gross motor skills.
Comments: Holden has done exceptionally well climbing up and down the step stool to wash his hands and rinse his toothbrush. He is already learning now to pinch the clothespins to get them on the cup and should master this objective in the next nine weeks. Holden can string 5 beads on a string and we will now work on stringing smaller beads on thinner string.
Goal: Holden will improve cognitive skills.
Comments: Holden is very compliant now, he occasionally will tantrum when asked to sit down or blocked from doing his "stimmy circles", but that is no more than 2-3 times a week. Holden has mastered matching 3 items in a field of 3 and is working on several more objectives. Holden responds appropriately when told to "come here", "get a chair", "put away your toy", and "line up at the door" with minimal prompting.
Goal: Holden will improve personal-social skills.
Comments: Holden sits for the entire circle time with minimal reinforcement and participates in at least 50% of the songs and fingerplays. He sits at the table and tolerates playing alongside the other students. He will occasionally become interested in a toy another child is playing with and touch it or move it, but if offered his own toy, will not tantrum to get it.
Goal: Holden will improve daily living skills.
Comments: Holden has made great progress with the backpack routine. He comes in the room, takes his backpack off, attempts to hang it on the hook (he is offered little assistance), unzips with help and then takes out his lunch box and walks it over to the shelf where it goes. Will will start potty training the next 9 weeks.
Goal: Holden will master the skills needed to effectively communicate.
Comments: Holden can independently mand for juice, movie, cookie, raisin, bubbles and beads using sign language and vocal approximation. We require him to sign because his vocal approximations are not clear enough for his teacher to understand what he is asking for. His prompted mands are chips, candy, pins, beads, fish and cake. He has mastered "mama" from the Kaufman Speech Praxis and is working on 3 more words. He is also working on increasing his vocal approximations of mands "movie", "candy", "cookie", and "juice". He is a star at motor imitation having mastered 9 objectives this nine weeks.
Goal: Holden will improve fine and/or gross motor skills.
Comments: Holden has done exceptionally well climbing up and down the step stool to wash his hands and rinse his toothbrush. He is already learning now to pinch the clothespins to get them on the cup and should master this objective in the next nine weeks. Holden can string 5 beads on a string and we will now work on stringing smaller beads on thinner string.
Goal: Holden will improve cognitive skills.
Comments: Holden is very compliant now, he occasionally will tantrum when asked to sit down or blocked from doing his "stimmy circles", but that is no more than 2-3 times a week. Holden has mastered matching 3 items in a field of 3 and is working on several more objectives. Holden responds appropriately when told to "come here", "get a chair", "put away your toy", and "line up at the door" with minimal prompting.
Goal: Holden will improve personal-social skills.
Comments: Holden sits for the entire circle time with minimal reinforcement and participates in at least 50% of the songs and fingerplays. He sits at the table and tolerates playing alongside the other students. He will occasionally become interested in a toy another child is playing with and touch it or move it, but if offered his own toy, will not tantrum to get it.
Goal: Holden will improve daily living skills.
Comments: Holden has made great progress with the backpack routine. He comes in the room, takes his backpack off, attempts to hang it on the hook (he is offered little assistance), unzips with help and then takes out his lunch box and walks it over to the shelf where it goes. Will will start potty training the next 9 weeks.
1.20.2009
a little less suck-age
I had an appointment with our DAN last week regarding Holden. We went over his OAT, bloodwork, and French test. The OAT showed very high markers for yeast (surprise, surprise). His French test showed elevated levels of Mercury and Lead (again, surprise, surprise). His bloodwork showed low zinc, normal liver function, and something else very interesting to me...he's NOT protected against Polio. Hello vaccines!! He was vaccinated against Polio, but apparently it did no good.
Seeing the test results, I just don't understand how people can dismiss the biomedical treatment for autism. How much more scientific evidence do you need that our kids systems are off? More so than typical children? Doesn't that mean anything to the medical community?? I don't get it.
Anyway, off my soap box. Our next plan of action is to start Zinc (1 cap per day, 20 mg), Therabiotic Complete (probiotic), and Nizoral. He's been on the Nizoral for 1 week now and there's definitely a difference. He's happier, doesn't seem to be "hurting", and his eye contact and socialization has increased. We started Zinc just yesterday, so nothing to report yet on that...as well as the new probiotic. I'll do the challenge test in the next few days. Then, 2 weeks later, we're to do an EDTA + DMSA challenge test. Our next appointment is February 23rd, where we'll discuss the challenge results and determine which chelation agent to use and how it will be administered. I'm hoping for at least twice monthly IV's, at least. The other 2 weeks, we will use suppositories.
Honestly though, it all depends on the costs of each. We want the most effective, obviously, but we have to choose the most effective that we're able to afford. I'm VERY anxious to start chelating on a regular basis though. He will be 4 in April and I have such high hopes for him by his 5th birthday. I've heard chelation takes anywhere from 12-18 months to be most effective.
On another note, Zoe and Jackson are doing great. Zoe amazes me everyday with all she's learning and the words that come out of her mouth! Good and bad. Jackson is 17 and a half months and seems to be developing completely normal thus far. He's pointing to pictures, labeling, very social, great eye contact, talking, talking, and more talking. I'm hopeful that he will be spared any developmental delays. In the meantime, we will continue to NOT vaccinate him.
More later!
Seeing the test results, I just don't understand how people can dismiss the biomedical treatment for autism. How much more scientific evidence do you need that our kids systems are off? More so than typical children? Doesn't that mean anything to the medical community?? I don't get it.
Anyway, off my soap box. Our next plan of action is to start Zinc (1 cap per day, 20 mg), Therabiotic Complete (probiotic), and Nizoral. He's been on the Nizoral for 1 week now and there's definitely a difference. He's happier, doesn't seem to be "hurting", and his eye contact and socialization has increased. We started Zinc just yesterday, so nothing to report yet on that...as well as the new probiotic. I'll do the challenge test in the next few days. Then, 2 weeks later, we're to do an EDTA + DMSA challenge test. Our next appointment is February 23rd, where we'll discuss the challenge results and determine which chelation agent to use and how it will be administered. I'm hoping for at least twice monthly IV's, at least. The other 2 weeks, we will use suppositories.
Honestly though, it all depends on the costs of each. We want the most effective, obviously, but we have to choose the most effective that we're able to afford. I'm VERY anxious to start chelating on a regular basis though. He will be 4 in April and I have such high hopes for him by his 5th birthday. I've heard chelation takes anywhere from 12-18 months to be most effective.
On another note, Zoe and Jackson are doing great. Zoe amazes me everyday with all she's learning and the words that come out of her mouth! Good and bad. Jackson is 17 and a half months and seems to be developing completely normal thus far. He's pointing to pictures, labeling, very social, great eye contact, talking, talking, and more talking. I'm hopeful that he will be spared any developmental delays. In the meantime, we will continue to NOT vaccinate him.
More later!
1.12.2009
today sucks
I try pretty hard to get around the self-pity stuff when it comes to Holden and autism. For the most part, I'm motivated, dedicated, and optimistic for his recovery. Every once in a while, there are days when things don't seem to be going right. I think this process has really taught me to be "in-tune" with him...what he's feeling, if he's hurting, happy, etc. And today, my gut tells me that something's just not right with him. He's been off anti-fungals, probiotics, and MB12 shots for almost 2 weeks now. It's really taking a toll on him, I can tell. He's not sleeping. He's crying, as if he's hurting. He's holding his stomach. And I know that if he could just TELL me how he feels, he would tell me that he's a mess inside.
I have an appointment with our DAN today at 4:30. I have to get him back on track. I need my boy back.
I have an appointment with our DAN today at 4:30. I have to get him back on track. I need my boy back.
1.07.2009
New Year
Happy New Year! Late, I know, but I haven't had much time to post any updates.
My mom was here for 2 days over the holidays. I can't tell you how much help it was to have her around. And of course, the kids loved it.
Holden's been going through a "rough patch" I guess you could say. He ran out of his anti-fungal (Sporonox - which I think was making him worse anyway!), and we also ran out of our probiotics (bifido-complex). We had an appointment with our DAN scheduled for December 29th, so I decided to wait until the appointment to discuss possibly changing his anti-fungal and to find out if we needed to start something for clostridia. His OAT test, French test, and bloodwork are all back, so I assumed we would be making some changes based on the results. Well, they had to reschedule our appointment to January 12th. And I haven't been able to reach the doctor since before Christmas...so he's had some rough days. I'm assuming the kid has yeast like crazy now, being off anti-fungals all together for a few weeks. His tantrums have been horrible, he's had trouble falling asleep (not like him), he's stimming like crazy. He has gotten a little better over the past 3 days or so. I started him on S Boulardii from Whole Foods last Friday. I don't know if it's making a difference. Maybe. His behavior seems better and he seems happier overall. He's sleeping a little better. Hopefully next week, after his appointment, we can start him on a new anti-fungal, and whatever else he needs. I also hope to start ongoing chelation treatments again. Not sure yet if we'll do IVs or suppositories (again). I would like to do IVs, but it's so traumatic for him, and I need to see what our insurance will pay. This is all soooo expensive, it's tough. But much needed.
Zoe's good. 9, going on 16. I'm just waiting for her to hate me everyday, instead of just every other day.
Jackson's developing normally, or so it seems thus far. He loved Christmas, and all the lights. He's talking up a storm, and I love it! Hate the screaming, but love the talking and laughing and interacting with us.
Here are a few pictures from December. Holden LOVES the camera now.
My mom was here for 2 days over the holidays. I can't tell you how much help it was to have her around. And of course, the kids loved it.
Holden's been going through a "rough patch" I guess you could say. He ran out of his anti-fungal (Sporonox - which I think was making him worse anyway!), and we also ran out of our probiotics (bifido-complex). We had an appointment with our DAN scheduled for December 29th, so I decided to wait until the appointment to discuss possibly changing his anti-fungal and to find out if we needed to start something for clostridia. His OAT test, French test, and bloodwork are all back, so I assumed we would be making some changes based on the results. Well, they had to reschedule our appointment to January 12th. And I haven't been able to reach the doctor since before Christmas...so he's had some rough days. I'm assuming the kid has yeast like crazy now, being off anti-fungals all together for a few weeks. His tantrums have been horrible, he's had trouble falling asleep (not like him), he's stimming like crazy. He has gotten a little better over the past 3 days or so. I started him on S Boulardii from Whole Foods last Friday. I don't know if it's making a difference. Maybe. His behavior seems better and he seems happier overall. He's sleeping a little better. Hopefully next week, after his appointment, we can start him on a new anti-fungal, and whatever else he needs. I also hope to start ongoing chelation treatments again. Not sure yet if we'll do IVs or suppositories (again). I would like to do IVs, but it's so traumatic for him, and I need to see what our insurance will pay. This is all soooo expensive, it's tough. But much needed.
Zoe's good. 9, going on 16. I'm just waiting for her to hate me everyday, instead of just every other day.
Jackson's developing normally, or so it seems thus far. He loved Christmas, and all the lights. He's talking up a storm, and I love it! Hate the screaming, but love the talking and laughing and interacting with us.
Here are a few pictures from December. Holden LOVES the camera now.
12.12.2008
"kooooool"
That's Holden-speak for "school". When we turn down the road that his school is on, I always ask him "are you ready to go to school?" So this morning, in the same place I usually ask - he beat me to it. He said "koooooool", and smiled. Spontaneous!
When we dropped of Zoe at "kooool", he said "bye-bye sissy".
Our next DAN appointment is December 29th. My mom will be in town, so that'll be nice to have her there with me. We'll discuss his latest blood test results, OAT results, and French test results. Then we'll decide on which chelation we need to use and if it will be suppositories or IVs. I'm leaning towards IVs, but we'll see what Dr. Rao thinks.
He's been doing okay, however, I'm beginning to think that the Sporonox he's taking for yeast is bothering him (in a negative way). I only give it every other day now, and it seems that on the days he gets it - in the evenings - he's VERY stimmy and very grumpy. More prone to tantrums and stims. I'm considering taking him off all together, but would like the OAT results before I do that; so that we don't have to go through another major die-off phase.
He loves: being tickled by daddy, his sister's keyboard, and the Christmas lights.
He hates: his little brother taking things from him, us stopping his stims, and not getting what he wants (pretty typical huh?!).
More later.
When we dropped of Zoe at "kooool", he said "bye-bye sissy".
Our next DAN appointment is December 29th. My mom will be in town, so that'll be nice to have her there with me. We'll discuss his latest blood test results, OAT results, and French test results. Then we'll decide on which chelation we need to use and if it will be suppositories or IVs. I'm leaning towards IVs, but we'll see what Dr. Rao thinks.
He's been doing okay, however, I'm beginning to think that the Sporonox he's taking for yeast is bothering him (in a negative way). I only give it every other day now, and it seems that on the days he gets it - in the evenings - he's VERY stimmy and very grumpy. More prone to tantrums and stims. I'm considering taking him off all together, but would like the OAT results before I do that; so that we don't have to go through another major die-off phase.
He loves: being tickled by daddy, his sister's keyboard, and the Christmas lights.
He hates: his little brother taking things from him, us stopping his stims, and not getting what he wants (pretty typical huh?!).
More later.
12.05.2008
DTaP
I haven't had time to post much lately, but will update this weekend on Holden's progress. Things are good though for the most part. Moving along, slowly but surely.
Also, we received his French test back, but am waiting on someone to tell me what the hell it all means.
I had to post this though about the DTaP vaccine. This is straight from the CDC and Department of Defense:
http://www.vhcinfo.org/subpage.asp?page=vaccines/vaccine_dtap
So, yeah. Wow, finally they're admitting that autism is an "adverse event" from this vaccine. What do you know?! We're not all crazy!!!!!
Also, we received his French test back, but am waiting on someone to tell me what the hell it all means.
I had to post this though about the DTaP vaccine. This is straight from the CDC and Department of Defense:
http://www.vhcinfo.org/subpage.asp?page=vaccines/vaccine_dtap
So, yeah. Wow, finally they're admitting that autism is an "adverse event" from this vaccine. What do you know?! We're not all crazy!!!!!
11.21.2008
I think I love Holden's School
But, I'm afraid to say it out loud for fear of jinxing it!!!
For the past few days, when he's done with dinner, he's been bringing me his plate. The first time he did it, I said "Oh, you're all done?" and he handed it to me. Then, the 2nd time, I realized there was something to this. So, for 4 days in a row, he's brought me his plate when he's finished with his dinner. He will LOOK at me and say "done". It's not that clear, obviously. But I know what he's saying.
His teacher told me tonight that they make him pick up his plate after lunch and throw things in the trash. He has to pick up after himself and put his things away. So, he's learning, AND generalizing things to the home environment.
When I picked him up from school today - they told me the school had a pep ralley for the Dallas Cowboys at the end of the day. She said it was very loud, kids screaming, singing, etc. I asked how he did with that and she said he was great! That he loved it. He sat on their lap and smiled through the whole thing.
After school today, he was soooo social. He watched the Wiggles and sang with them. He danced and jumped up and down and made animal sounds when they did. He smiles and just looked happy. He kept coming up to me and saying "hiiiiiiii!", and he would look me in the eye and smile and wait for me to say "hiiiii!" back.
Today. Was an awesome day. I do have to add that I started MB12 shots again last night. He had been off of them for a few weeks. I have no idea if it has anything to do with it...but, I have to make notes of anything we do differently. Any changes we make. We've also been on Culturelle for about a month now. And this may be too much info, but he's had normal poops for an entire month!!
I can only pray that this will continue...
For the past few days, when he's done with dinner, he's been bringing me his plate. The first time he did it, I said "Oh, you're all done?" and he handed it to me. Then, the 2nd time, I realized there was something to this. So, for 4 days in a row, he's brought me his plate when he's finished with his dinner. He will LOOK at me and say "done". It's not that clear, obviously. But I know what he's saying.
His teacher told me tonight that they make him pick up his plate after lunch and throw things in the trash. He has to pick up after himself and put his things away. So, he's learning, AND generalizing things to the home environment.
When I picked him up from school today - they told me the school had a pep ralley for the Dallas Cowboys at the end of the day. She said it was very loud, kids screaming, singing, etc. I asked how he did with that and she said he was great! That he loved it. He sat on their lap and smiled through the whole thing.
After school today, he was soooo social. He watched the Wiggles and sang with them. He danced and jumped up and down and made animal sounds when they did. He smiles and just looked happy. He kept coming up to me and saying "hiiiiiiii!", and he would look me in the eye and smile and wait for me to say "hiiiii!" back.
Today. Was an awesome day. I do have to add that I started MB12 shots again last night. He had been off of them for a few weeks. I have no idea if it has anything to do with it...but, I have to make notes of anything we do differently. Any changes we make. We've also been on Culturelle for about a month now. And this may be too much info, but he's had normal poops for an entire month!!
I can only pray that this will continue...
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