Just a driveby blog to post this:
1: J Toxicol Environ Health A. 2008;71(20):1349-51.
An investigation of porphyrinuria in Australian children with autism.
Austin DW, Shandley K.
Swinburne Autism Bio-Research Initiative (SABRI), Faculty of Life and Social Sciences, Swinburne University of Technology, Melbourne, Australia. daustin@swin.edu.au
Two recent studies, from France (Nataf et al., 2006) and the United States (Geier & Geier, 2007), identified atypical urinary porphyrin profiles in children with an autism spectrum disorder (ASD). These profiles serve as an indirect measure of environmental toxicity generally, and mercury (Hg) toxicity specifically, with the latter being a variable proposed as a causal mechanism of ASD (Bernard et al., 2001; Mutter et al., 2005). To examine whether this phenomenon occurred in a sample of Australian children with ASD, an analysis of urinary porphyrin profiles was conducted. A consistent trend in abnormal porphyrin levels was evidenced when data was compared with those previously reported in the literature. The results are suggestive of environmental toxic exposure impairing heme synthesis. Three independent studies from three continents have now demonstrated that porphyrinuria is concomitant with ASD, and that Hg may be a likely xenobiotic to produce porphyrin profiles of this nature.
PMID: 18704827
Supplements, Supplements, Supplements!
Yes, we can easily drown in the sea of supplements! I know, it's hard to keep them all straight and it's hard to afford them all. But here is a list of sources so if you aren't fortunate enough to live near a great health food store you can still get what you need. I have no affiliation with any of these companies other than as a shopper at a couple. I also don't hold any back because of bias. To each their own and it's up to you to decide for yourself.
Kirkman Labs
Nordic Naturals
NCD Zeolites
ASD Market
Millenium Nutritionals
New Beginnings Neutraceuticals
Houston Enzymes
Holistic Heal (Yasko supplements)
The Vitamin Shoppe
Evitamins
Vitacost
Herb Shop
Digestive Wellness (specifically for SCD)
GI Pro Health (specifically for SCD)
NEEDS, Inc.
Enzymedica
Spectrum Mart ASD mom owned, buying groups can be formed.
There are many others and as I either learn of more or remember more I'll add them.
Happy shopping!
Kirkman Labs
Nordic Naturals
NCD Zeolites
ASD Market
Millenium Nutritionals
New Beginnings Neutraceuticals
Houston Enzymes
Holistic Heal (Yasko supplements)
The Vitamin Shoppe
Evitamins
Vitacost
Herb Shop
Digestive Wellness (specifically for SCD)
GI Pro Health (specifically for SCD)
NEEDS, Inc.
Enzymedica
Spectrum Mart ASD mom owned, buying groups can be formed.
There are many others and as I either learn of more or remember more I'll add them.
Happy shopping!
Diet? What Diet?!?
Let's face it, once you enter the world of autism, nothing is sacred. Not even that yummy slice of cake or bowl of ice cream you secretly yearn for every day. With our children, diet can mean everything and in some cases, diet can mean nothing (although you still want it to be healthy). In the case of my son, we worked on diet for 2 years with no results so I stopped trying. Some would say that I shouldn't have but I have limited resources and I'd rather put those resources where I'll get the most bang for my buck. But I do suggest that everyone at least try because many children do so much better just working on diet alone. Give it 6 months to a year because it can take that long just to get it right.
GFCF (Gluten Free, Casein Free)
The Gluten Free/Casein Free diet is generally the most popular. This is hard one to implement because gluten and casein is in just about everything. You must read labels carefully and know all the "code words" for them. Hidden sources are everywhere.
Why is it helpful, you ask? Well, there are several reasons. First, many of our kids are allergic (IgE allergies) or have food sensitivities (IgG allergies). If they have them, it's toxic and places a great deal of strain on the immune system. In many cases, more than gfcf needs to be implemented such as removal or corn and soy. A poorly functioning immune system equals a not so great functioning brain and body. Gluten and casein can also have an opioid effect where it creates a "high". Hyper, brain fog, aggression, etc. In some cases, it may also be that the gut simply can't break it down and metabolize it and causes/contributes to leaky gut.
10 Weeks To GFCF
SCD (Specific Carbohydrate Diet)
Also a difficult diet but again, another one in which many people find success. This involves exactly what the name implies and was originally developed for ulcerative colitis and IBD. It's very restrictive but many kids with severe gut issues find help with this diet.
Breaking the Vicious Cycle
Feingold Diet
This is much simpler but some kids may find it too lenient. Still, it can be effective and there are some that do just fine with this diet alone. Especially used in ADHD.
Feingold Association of the United States
Other diets?
Yes, of course there are other diets to choose from but I mention these because these are the most prominent. And yes, in some cases, diet isn't needed. Each child is so different and has such individual needs that it's hard to say if a diet will be effective. The only way to know is to try. As I said earlier, we did diet for a couple years before we dropped diet altogether. We never saw any changes, good or bad and these diets can be costly. So we chose to place our money where it was actually being effective. We still avoid the basics - artificial dyes, artificial sugar, preservatives and processed foods. We try to eat as much organic food as possible and basically do our best to keep food as healthy as possible. But my suggestion is to always try dealing with diet first. You don't know if it's going to work until you do. There's no test more accurate than just starting and watching. You need to give diets time to work, too. Give it at least 6 months and some say 1 year. We went over 2 years with diets so we definitely put in the effort and the time and I always recommend others do the same before giving up. They can be hard to implement and for the first few months, mistakes will be made as you discover all the many words for gluten, casein, etc. Reading and understanding labels is essential and you have to take your time figuring it all out.
Good luck!
GFCF (Gluten Free, Casein Free)
The Gluten Free/Casein Free diet is generally the most popular. This is hard one to implement because gluten and casein is in just about everything. You must read labels carefully and know all the "code words" for them. Hidden sources are everywhere.
Why is it helpful, you ask? Well, there are several reasons. First, many of our kids are allergic (IgE allergies) or have food sensitivities (IgG allergies). If they have them, it's toxic and places a great deal of strain on the immune system. In many cases, more than gfcf needs to be implemented such as removal or corn and soy. A poorly functioning immune system equals a not so great functioning brain and body. Gluten and casein can also have an opioid effect where it creates a "high". Hyper, brain fog, aggression, etc. In some cases, it may also be that the gut simply can't break it down and metabolize it and causes/contributes to leaky gut.
10 Weeks To GFCF
SCD (Specific Carbohydrate Diet)
Also a difficult diet but again, another one in which many people find success. This involves exactly what the name implies and was originally developed for ulcerative colitis and IBD. It's very restrictive but many kids with severe gut issues find help with this diet.
Breaking the Vicious Cycle
Feingold Diet
This is much simpler but some kids may find it too lenient. Still, it can be effective and there are some that do just fine with this diet alone. Especially used in ADHD.
Feingold Association of the United States
Other diets?
Yes, of course there are other diets to choose from but I mention these because these are the most prominent. And yes, in some cases, diet isn't needed. Each child is so different and has such individual needs that it's hard to say if a diet will be effective. The only way to know is to try. As I said earlier, we did diet for a couple years before we dropped diet altogether. We never saw any changes, good or bad and these diets can be costly. So we chose to place our money where it was actually being effective. We still avoid the basics - artificial dyes, artificial sugar, preservatives and processed foods. We try to eat as much organic food as possible and basically do our best to keep food as healthy as possible. But my suggestion is to always try dealing with diet first. You don't know if it's going to work until you do. There's no test more accurate than just starting and watching. You need to give diets time to work, too. Give it at least 6 months and some say 1 year. We went over 2 years with diets so we definitely put in the effort and the time and I always recommend others do the same before giving up. They can be hard to implement and for the first few months, mistakes will be made as you discover all the many words for gluten, casein, etc. Reading and understanding labels is essential and you have to take your time figuring it all out.
Good luck!
Sunday, September 7, 2008
Broken Links?! Not anymore!
I didn't realize I had broken links on my earlier posts. I've found them and corrected them. If anyone finds anymore, please let me know.
Behavioral Therapies & Other Useful Therapies
The merits of each therapy may be discussed in the future but at this time, I'm just going to give you the information to research since there are so many options. I have a few more "basic" blogs to post and I have limited time to do them so discussion on each isn't on the table for me right now. I hope that, for now, this is will help you in your research.
ABA:
CARD What is ABA?
Bright Tots ABA Therapy
TACA How To Start An In-Home Therapy Program For Your Child
Verbal Behavior Analysis This is still ABA but with a focus on language and communication. There is a good, detailed explanation of it that is downloadable in PDF from Coast ABA. I would have added a hyperlink directly to it to view as an html but I'm just not that computer savvy yet.
Floortime/DIR
RDI
TEACCH
Cognitive-Developmental Systems Approach
PRT:
UCSD Explanation
Training Manual
The following are not behavioral therapies but fit in nicely and may also help to alleviate behavioral issues:
The SCERTS Model
An educational model for social communication.
The Hanen Program
A speech and language program.
Michelle Garcia-Winner/Social Thinking
Also a speech and language program centered on social thinking and communication.
Social Stories
Focuses on social learning and understanding.
And now we have some other therapies that aren't behavioral but can have a great impact on behavior by treating some of the sensory and cognitive processing problems:
Visual Therapy
Auditory Integration Therapy:
Vital Links Therapeutic Listening home program
Tomatis Center based program
Berard Center based program
The Listening Program Home Program
Samonas Home program, click on the blue "Samonas" folder with the colored tabs.
Interactive Metronome
Hippotherapy
Neurofeedback
ABA:
CARD What is ABA?
Bright Tots ABA Therapy
TACA How To Start An In-Home Therapy Program For Your Child
Verbal Behavior Analysis This is still ABA but with a focus on language and communication. There is a good, detailed explanation of it that is downloadable in PDF from Coast ABA. I would have added a hyperlink directly to it to view as an html but I'm just not that computer savvy yet.
Floortime/DIR
RDI
TEACCH
Cognitive-Developmental Systems Approach
PRT:
UCSD Explanation
Training Manual
The following are not behavioral therapies but fit in nicely and may also help to alleviate behavioral issues:
The SCERTS Model
An educational model for social communication.
The Hanen Program
A speech and language program.
Michelle Garcia-Winner/Social Thinking
Also a speech and language program centered on social thinking and communication.
Social Stories
Focuses on social learning and understanding.
And now we have some other therapies that aren't behavioral but can have a great impact on behavior by treating some of the sensory and cognitive processing problems:
Visual Therapy
Auditory Integration Therapy:
Vital Links Therapeutic Listening home program
Tomatis Center based program
Berard Center based program
The Listening Program Home Program
Samonas Home program, click on the blue "Samonas" folder with the colored tabs.
Interactive Metronome
Hippotherapy
Neurofeedback
Wednesday, August 20, 2008
Where to begin? Know your Treatment Protocols...
When I first started researching autism I had to search the web like a mad woman. I found a lot of information but it was scattered all over the place. I had bookmarks galore and I also relied heavily on many of the listserves. I remember thinking how nice it would be to have all that information in one spot so I didn't feel like I was just blindly searching for something when I didn't even know what to search. I'm hoping this will make someone else's search a little easier.
Not all protocols work for every child. And then there's the understanding that within most protocols are "mini protocols" that could possibly do wonders even thought the overall protocol wouldn't. Finding the right protocol can be time consuming and costly so my suggestion is to not waste 5 years on a protocol that isn't working. Give yourself 6 months to a year on a protocol and then reevaluate. Are you seeing any results worth continuing? Is there something you could be doing that you think would be helpful and aren't? Are there labs pointing you to a direction you haven't gone yet? Constantly reevaluate what you are doing to get the most out of any given protocol and give it a sincere chance. If it's not working, move on down the line to another protocol.
Also keep in mind that sometimes you don't get results from one thing until you do another. I've had many parents tell me that "x didn't work and we gave up on it but then we did y and then revisited x and suddenly it was working." Some things just need a foundation before you can build.
Protocols can be expensive. Many of the doctors don't take insurance and many of the labs aren't covered by insurance. But there is a glimmer of hope. Some do take some insurance but you'll have to search them out. For the rest, you'll find that a lot of parents are one their own trying to do the best they can without help. Medical reform is needed but that's another blog topic. Here are some different treatment protocols below.
DAN! (Defeat Autism Now!)
The most popular and well known protocol is the DAN! protocol. This is the protocol that the recommends much of what you hear about such as the GFCF (Gluten Free Casein Free) diet, MB12, HBOT, chelation and more. It was created by the Autism Research Institute, a non-profit that has been around for 40+ years conducting research. You can read more about ARI and DAN! here.
They focus heavily on metabolic issues, gut and metals but they are starting to grow and implement more on the immune side but it's a slow transition. Not all DAN!s are created equal so ask around for recommendations.
Yes, this can get pricey but if you go slow, you will discover ways to make it more affordable. I'll post a blog on that sometime in the future.
To find a DAN practitioner click here.
NIDS
NIDS (Neuro-Immune Dysfunction Syndrome) is almost entirely immune related. You can find more info here and here. This is the protocol my son had been on for almost 2 years and we've had great success although not full recovery. The basic protocol is antiviral, antifungal, SSRIs and the NIDS diet. There are only 3 places to see a NIDS practitioner. Dr. Michael Goldberg in Tarzana, CA, the Northern New York Autism Center in NY and they also have an office in TX. To my knowledge, if you go to NNYAC in either location you'll be seeing Dr. Russell. There is a NIDS listserve that can be very helpful if you are considering this protocol. Dr. Goldberg does take some insurance and I'm not sure about NNYAC.
Yasko
Dr. Amy Yasko bases her protocol on the expression of certain metabolic genes. It's actually quite hard to understand on your own because if you are anything like me, you feel like you need a doctorate in biogenetics and biochemistry to understand what she is saying! Parents manage to push forward with it, though. It's quite expensive but enough people have tremendous success with it and figure it out via her listserve to which she and other parents communicate and help. I've heard most people have to read her books about 2 or 3 times before they even start but many are thrilled with the results. Dr. Yasko does not see patients anymore so most parents are on their own unless they want to see (or have phone consults with) the few doctors that implement the protocol. Dr. Nancy Mullan in Burbank, CA is one that no longer uses the DAN! protocol and is fully Yasko and Dr. Rachel West in Santa Monica still implements DAN! but now also uses Yasko. A few other Dr.'s use some parts of her protocol. While most DAN!s are familiar with her protocol, most don't use it so there are only a few doctors that actually implement her full protocol.
You can learn more here and her listserve can be found here. The store can be found here.
Pfeiffer Treatment Center
The PTC is similar to DAN! but they tend to focus more on the copper/zinc ratio. Not a whole lot to say here as much of it is covered under DAN! but do understand it is their own protocol, not a DAN! protocol. Very similar, though.
Homeopathy
I must admit, I don't know much about homeopathy. It would be a sad explanation to hear it from me! When parents start talking about homeopathic remedies it all goes right over my head as I haven't even attempted to learn since we just aren't using it but suffice it to say that many find success here. I know that they work under the premise that "like cures like" although it's probably too simple of an explanation. I would caution that if you choose this route, make sure you use someone very familiar with autism. Get recommendations. Here is a link to a reputable place but I'm sure there are others. Google it for more info or a place near you.
Aside from the above protocols, there are many other types of protocols that are little more specialized. Yes, some of them could fall under other protocols as more of a "sub protocol" but they are good to know so I'm adding them.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections)
PANDAS, in it's simplest terms, is the overproduction of Strep antibodies. It's based on the work of Susan Swedo and is starting to gain mainstream acceptance although it's not quite there yet. I don't have a PANDAS kid but I know of many so it's always good to at least run the titers to check. More info on it can be found here and here.
Lyme Induced Autism
Some cases of autism are aggravated or even caused by Lyme. I don't have a Lyme kid so I don't know much about it but you can find more info on LIA through the LIA Foundation.
NAET and BioSet
NAET (Nambudripad's Allergy Elimination Techniques) and it's offshoot, BioSet, are becoming more and more used within the autism community. No personal experience but I hear a lot of good things.
Gastrointestinal Doctors
There are two doctors in the US that are acutely aware of autism and it's GI issues. Dr. Arthur Krigsman at Thoughtful House and Dr. Buie at MassGen.
Stan Kurtz's Anti-infection & MB12 Spray
This would generally fall under the DAN! protocol but Stan asked me once to put it on my "Introduction to Autism" file that I sent to people so I'm adding it here, too. You can read about it here, here, and here. Stan is also on the Board of Directors for Generation Rescue as the Executive Director.
I want to make sure that I take the time to say that just because a protocol isn't mentioned on here, it doesn't mean it doesn't have value. It simply means that I either overlooked it, forgot about it or just plain don't know about it and no one has ever brought it to my attention. Keep researching, keep learning and don't give up. If a protocol doesn't work for you, try another. And there will always be a section of people that do nothing at all and their children are fine. There's no guarantee that any of the protocols will work and there's no guarantee that if you do nothing your child will be okay. Do what you are comfortable with and do it as best you can. That's all anyone can ask of you as a parent. Don't give up on your children no matter what your choice because they aren't dumb, mentally retarded or unaware. They are people and they do have feelings, emotions, and intellect whether they are able to express them in a way that you understand or not.
Not all protocols work for every child. And then there's the understanding that within most protocols are "mini protocols" that could possibly do wonders even thought the overall protocol wouldn't. Finding the right protocol can be time consuming and costly so my suggestion is to not waste 5 years on a protocol that isn't working. Give yourself 6 months to a year on a protocol and then reevaluate. Are you seeing any results worth continuing? Is there something you could be doing that you think would be helpful and aren't? Are there labs pointing you to a direction you haven't gone yet? Constantly reevaluate what you are doing to get the most out of any given protocol and give it a sincere chance. If it's not working, move on down the line to another protocol.
Also keep in mind that sometimes you don't get results from one thing until you do another. I've had many parents tell me that "x didn't work and we gave up on it but then we did y and then revisited x and suddenly it was working." Some things just need a foundation before you can build.
Protocols can be expensive. Many of the doctors don't take insurance and many of the labs aren't covered by insurance. But there is a glimmer of hope. Some do take some insurance but you'll have to search them out. For the rest, you'll find that a lot of parents are one their own trying to do the best they can without help. Medical reform is needed but that's another blog topic. Here are some different treatment protocols below.
DAN! (Defeat Autism Now!)
The most popular and well known protocol is the DAN! protocol. This is the protocol that the recommends much of what you hear about such as the GFCF (Gluten Free Casein Free) diet, MB12, HBOT, chelation and more. It was created by the Autism Research Institute, a non-profit that has been around for 40+ years conducting research. You can read more about ARI and DAN! here.
They focus heavily on metabolic issues, gut and metals but they are starting to grow and implement more on the immune side but it's a slow transition. Not all DAN!s are created equal so ask around for recommendations.
Yes, this can get pricey but if you go slow, you will discover ways to make it more affordable. I'll post a blog on that sometime in the future.
To find a DAN practitioner click here.
NIDS
NIDS (Neuro-Immune Dysfunction Syndrome) is almost entirely immune related. You can find more info here and here. This is the protocol my son had been on for almost 2 years and we've had great success although not full recovery. The basic protocol is antiviral, antifungal, SSRIs and the NIDS diet. There are only 3 places to see a NIDS practitioner. Dr. Michael Goldberg in Tarzana, CA, the Northern New York Autism Center in NY and they also have an office in TX. To my knowledge, if you go to NNYAC in either location you'll be seeing Dr. Russell. There is a NIDS listserve that can be very helpful if you are considering this protocol. Dr. Goldberg does take some insurance and I'm not sure about NNYAC.
Yasko
Dr. Amy Yasko bases her protocol on the expression of certain metabolic genes. It's actually quite hard to understand on your own because if you are anything like me, you feel like you need a doctorate in biogenetics and biochemistry to understand what she is saying! Parents manage to push forward with it, though. It's quite expensive but enough people have tremendous success with it and figure it out via her listserve to which she and other parents communicate and help. I've heard most people have to read her books about 2 or 3 times before they even start but many are thrilled with the results. Dr. Yasko does not see patients anymore so most parents are on their own unless they want to see (or have phone consults with) the few doctors that implement the protocol. Dr. Nancy Mullan in Burbank, CA is one that no longer uses the DAN! protocol and is fully Yasko and Dr. Rachel West in Santa Monica still implements DAN! but now also uses Yasko. A few other Dr.'s use some parts of her protocol. While most DAN!s are familiar with her protocol, most don't use it so there are only a few doctors that actually implement her full protocol.
You can learn more here and her listserve can be found here. The store can be found here.
Pfeiffer Treatment Center
The PTC is similar to DAN! but they tend to focus more on the copper/zinc ratio. Not a whole lot to say here as much of it is covered under DAN! but do understand it is their own protocol, not a DAN! protocol. Very similar, though.
Homeopathy
I must admit, I don't know much about homeopathy. It would be a sad explanation to hear it from me! When parents start talking about homeopathic remedies it all goes right over my head as I haven't even attempted to learn since we just aren't using it but suffice it to say that many find success here. I know that they work under the premise that "like cures like" although it's probably too simple of an explanation. I would caution that if you choose this route, make sure you use someone very familiar with autism. Get recommendations. Here is a link to a reputable place but I'm sure there are others. Google it for more info or a place near you.
Aside from the above protocols, there are many other types of protocols that are little more specialized. Yes, some of them could fall under other protocols as more of a "sub protocol" but they are good to know so I'm adding them.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections)
PANDAS, in it's simplest terms, is the overproduction of Strep antibodies. It's based on the work of Susan Swedo and is starting to gain mainstream acceptance although it's not quite there yet. I don't have a PANDAS kid but I know of many so it's always good to at least run the titers to check. More info on it can be found here and here.
Lyme Induced Autism
Some cases of autism are aggravated or even caused by Lyme. I don't have a Lyme kid so I don't know much about it but you can find more info on LIA through the LIA Foundation.
NAET and BioSet
NAET (Nambudripad's Allergy Elimination Techniques) and it's offshoot, BioSet, are becoming more and more used within the autism community. No personal experience but I hear a lot of good things.
Gastrointestinal Doctors
There are two doctors in the US that are acutely aware of autism and it's GI issues. Dr. Arthur Krigsman at Thoughtful House and Dr. Buie at MassGen.
Stan Kurtz's Anti-infection & MB12 Spray
This would generally fall under the DAN! protocol but Stan asked me once to put it on my "Introduction to Autism" file that I sent to people so I'm adding it here, too. You can read about it here, here, and here. Stan is also on the Board of Directors for Generation Rescue as the Executive Director.
I want to make sure that I take the time to say that just because a protocol isn't mentioned on here, it doesn't mean it doesn't have value. It simply means that I either overlooked it, forgot about it or just plain don't know about it and no one has ever brought it to my attention. Keep researching, keep learning and don't give up. If a protocol doesn't work for you, try another. And there will always be a section of people that do nothing at all and their children are fine. There's no guarantee that any of the protocols will work and there's no guarantee that if you do nothing your child will be okay. Do what you are comfortable with and do it as best you can. That's all anyone can ask of you as a parent. Don't give up on your children no matter what your choice because they aren't dumb, mentally retarded or unaware. They are people and they do have feelings, emotions, and intellect whether they are able to express them in a way that you understand or not.
Thursday, August 14, 2008
We're back!
We had a wonderful vacation and now we are trying to get settled back in here at home. As soon as we are all settled, I'll be posting like a mad woman.
Lots of things to discuss but before that happens, dh and I have to finish our countertops since he goes out of town again on Sunday.
Expect to see the posts start rolling in this weekend. Monday at the latest.
Lots of things to discuss but before that happens, dh and I have to finish our countertops since he goes out of town again on Sunday.
Expect to see the posts start rolling in this weekend. Monday at the latest.
Thursday, July 31, 2008
I know, I'm supposed to be packing...
I am. And I know I am. I'm supposed to be letting this all go for the next couple weeks but I have to share something wonderful.
My son is currently in a typical summer camp with an aide and it's been a dream. He has done so well and today was, sadly, his last day since we are getting on an airplane in just a few hours. His aide has been giving me glowing remarks every day and thankfully, she also gives me a detailed daily report. I swear, this is better than his past school year as far as communication. Today he had a new aide as his usual aide wasn't available and she said the most amazing thing to me.
"I never would've known he was anything other than a typical 4 year old with a lot of energy!"
That's right. My son. I nearly cried. I nearly cry just thinking about it and I'm holding it back as I type this right now. My son is so close to recovery and I can't wait to tell you all about how we've done it when I get back.
Have a great couple of weeks!
My son is currently in a typical summer camp with an aide and it's been a dream. He has done so well and today was, sadly, his last day since we are getting on an airplane in just a few hours. His aide has been giving me glowing remarks every day and thankfully, she also gives me a detailed daily report. I swear, this is better than his past school year as far as communication. Today he had a new aide as his usual aide wasn't available and she said the most amazing thing to me.
"I never would've known he was anything other than a typical 4 year old with a lot of energy!"
That's right. My son. I nearly cried. I nearly cry just thinking about it and I'm holding it back as I type this right now. My son is so close to recovery and I can't wait to tell you all about how we've done it when I get back.
Have a great couple of weeks!
Sunday, July 27, 2008
Wow, I've actually got some comments!
I guess I have to actually start blogging more even though the store isn't finished. I'll try to manage my time better since at least 2 people have read my blog! :) Thanks to both for the comments!
I'm going on vacation next week so I may not be able to blog until I return but who knows, maybe I'll toss some around while I'm there.
I've gotten most of the informational blogs started - mostly to remind me of what I'm doing - so I'll start with finishing those up first when I get back.
The boys are doing great and after 3 years, I finally have kitchen counters in!!!! Yes, folks, no more temporary melamine counters! We poured our own concrete countertops and they came out beautifully. We still aren't completely finished, though. They still need to be sealed and topcoated and then we need to put the trim and backsplash in but once it's done, I'll post pics! I'm very excited, in case you couldn't tell. 3 years of living with a not so well attached faucet to a temporary countertop that wasn't made for an undermount sink wasn't fun.
I'll be back with some real information on autism soon. Hearing about my countertops isn't exactly edge of your seat reading, I know.
I'm going on vacation next week so I may not be able to blog until I return but who knows, maybe I'll toss some around while I'm there.
I've gotten most of the informational blogs started - mostly to remind me of what I'm doing - so I'll start with finishing those up first when I get back.
The boys are doing great and after 3 years, I finally have kitchen counters in!!!! Yes, folks, no more temporary melamine counters! We poured our own concrete countertops and they came out beautifully. We still aren't completely finished, though. They still need to be sealed and topcoated and then we need to put the trim and backsplash in but once it's done, I'll post pics! I'm very excited, in case you couldn't tell. 3 years of living with a not so well attached faucet to a temporary countertop that wasn't made for an undermount sink wasn't fun.
I'll be back with some real information on autism soon. Hearing about my countertops isn't exactly edge of your seat reading, I know.
Thursday, June 12, 2008
Gryffin's Tail - Setting the stage...
I was sitting there, pregnant and in an old 24' travel trailer in the driveway of my house which was torn apart. On purpose, even. When we first bought our house, we took one look at the view and knew this was our house. We couldn't remember what the inside looked like which was quite apparent when we bought our "grown up" furniture but the view was exactly right. We knew that no matter what the house looked like we could make it better. And thus, we bought it, went back to our rental and simply waited to be able to move in. We bought furniture. Furniture that turned out to be much too big for our house but furniture that didn't fold, wasn't used and cost us a small fortune and we felt proud. We were newlyweds and we could now count ourselves as homeowners in a suburb.
We moved in and imagined all the wonderful plans we had for our house and we couldn't wait to afford them. Of course, we had things to fix and inevitably a leaky faucet would somehow turn into almost a whole new bathroom but that's another story... Anyway, we dared to dream. We decided to try for a baby. I was pregnant immediately. This pregnancy didn't last long or end well but we tried again and in 2 months we were pregnant. This one stuck. It wasn't an easy pregnancy but I managed. During this beautiful time we had the brilliant idea to move forward with our renovation plans. We got the home improvement loan and plugged it all into place.
So that brings me back to pregnant and sitting in an older 24' travel trailer in my driveway. 2/3 of my house torn down to bare studs. I could see straight through from the front of the house to the view out the back. We had been "living" in this travel trailer and the one room in our house that hadn't been touched which was soon to be formerly the master bedroom. My son, Gryffin, had just qualified for Regional Center Services. I still wasn't quite aware of autism, though. My husband was worried about autism from the beginning. Me, I had a strange absence of thought regarding autism. Even when I looked up symptoms of head banging there was enough on the web to make me feel, "No, it's not that". So many sites simply said many boys do it. When I told our pediatrician our concerns I was poo pooed. "Oh, he's a boy" or "Oh, it's no big deal" or "Oh, he'll grow out of it" or "Oh, it's okay that he doesn't eat a lot" or any number of "Oh's" you can think of so I felt pretty confident that my son was fine. This went on for months. As long as I had a "professional" telling me my son was fine I was more than happy to believe.
Our pediatrician never even referred us to the Regional Center when she finally did say he should be looked at by someone else after passing a hearing test when he 2. She tried to send us to a developmental pediatrician which would have been fine if they took insurance. So I called her back and told her that they didn't take insurance and asked if she knew what else I could do. She had me call a speech therapist which turns out doesn't take insurance either. The speech therapist proceeded to tell me all about why she was better for me to take my son to than the Regional Center. This was the first time I had heard anything about the Regional Center. I had no clue what it was or what they did. But I continued to listen to her and said, "uh huh" in all the right places knowing that as soon as I got off the phone with her I would be researching the Regional Center. As it happens, the Regional Center should have been the first call I ever made and I will be eternally unhappy with our pediatrician for not referring us there in the first place the very first moment we started mentioning concerns. While we waited for RC, we went to a speech therapist through our insurance. Speech Therapy was recommended but the hassle to get through it all and get it started was horrendous. By the time we got everything taken care of through our insurance we had Regional Center services so we never even went through our insurance.
When Gryffin was evaluated his speech was zero, his cognitive skills couldn't be measured and when our OT did her eval she said he was the hardest child she's ever evaluated. She literally could not breathe in order to keep him sitting in her lap to see what he could do. If she took a breath he felt it, would be reminded that he was in her lap and would take off running around the gym area. He simply couldn't stop moving. He ended up with about 12 hours a week of various services. 2 sessions of OT, 2 sessions of ST, 2 sessions of Group Therapy at 2.5 hours a piece and in home Child Development services.
I thought, well, maybe this is what ADHD is since he couldn't keep still and he just has ADHD and is a late talker. But as we started our services I saw all the other kids there, many with autism. I saw how he was very similar to them and I learned about stims and how to recognize them. He certainly had stims. But they were also very different from the other kids so I still had a little doubt that he had autism. He didn't bang his head the way the other kids did. He would bang his forehead and not the back of his head by rocking. It wasn't a soothing head bang. He would bang his forehead on the floor, wall or any other surface but only when he was angry or frustrated. He would try to make himself cry in order to manipulate me into getting what he wanted so I saw that as something all kids do and not a sign of autism. He didn't rock, spin or flap. He didn't finger posture, his eye contact wasn't horrible (but it wasn't great, either) and he wasn't rigid or routined. The stims he had seemed so minor and he certainly seemed to me (at the time) that his symptoms were "lesser" symptoms. Knowing what I know now, there is no such thing as "lesser" symptoms but hey, we all live and learn. He would stare at ceiling fans, blinds, put things up to the corner of his eye and stare down the line, speak in jargon, hold wheels up to his eyes, spin wheels on cars, line up toys, felt no pain, no concept of hot or cold and he had such high proprioceptive needs it was insane. He starting jumping constantly, I kid you not, at about 4 months old. He would sit in his jumper and jump, jump, jump till the cows came home. We initially didn't like for him to be in his jumper for too long because all those lovely parenting books like to tell you how they shouldn't be in an entertainer for too long but rather should have plenty of interaction. Well after a while of doing nothing but holding him while he jumped in our laps our arms were too tired to keep up with that bit of advice and into the jumper he went. His vestibular system was completely out of whack. He never felt like he was moving and he was constantly searching for that feeling. My parents and grandmother noticed that he didn't smile much. This was something that I never noticed as he seemed to smile and laugh with me all the time. But then I realized that in comparison to other typical children it just wasn't the same. What very few words he had disappeared before he even started RC services. I hadn't even noticed. I asked myself over and over, "When did that happen?"
He didn't start his services until just under 2.5 years old and at that point we knew for sure there was something wrong we just didn't know what. But as the days went on to weeks in Early Intervention I knew it was autism. They had given me a CARS worksheet and a copy of the DSMIV criteria. He scored right on the borderline between moderate to severe on CARS and as I went through and wrote all of his "symptoms" right next to each category, I totaled them up only to discover, yup, he qualifies for the diagnosis.
I accepted it immediately and went to work on figuring out what was next. My husband, on the other hand, had a much harder time accepting it. He never fully accepted it until we had our RC Psych eval at 3 years old. Once he got that diagnosis from the RC he had a difficult time coming to terms with it and it took him over a year to fully come to a place of acceptance and even out his emotions. It was a hard transition for both us to adjust to the news and how we both handled our reactions and our reactions to each others' reactions. He would seem to get mad at me for having such an "easy" time accepting it and I would get mad at him for having such a "hard" time accepting it when he was the one with the suspicions in the first place. The truth is, it wasn't easy for either of us and we simply handled it differently. He's more emotional and I'm more pragmatic. He would dwell on the fact that this was his worst nightmare and I would set out to learn what to do about this nightmare. The clash of the two polar opposite personalities wasn't easy to navigate.
Our beautiful and happy new baby, Tynan, had arrived and we were finally able to move back into our house after 6 months of living in our driveway. Somewhere along the line of deciding to remodel our house we had made the decision to do the finish work ourselves. Really dumb. It was bad enough that we got Gryffin's diagnosis after our house was torn down (something we would never have done had we known beforehand) but now we were moving back into a house with no kitchen, no floors and just barely had insulation and drywall. We made a temporary kitchen while we waited for our cabinets to be built and pulled out our much too expensive appliances that we bought before we knew our son was going to need a lot of therapy that costs a lot of money. We painted the bare drywall and slowly put our house together as best we could but we knew our progress would be a lot slower than we had originally anticipated since our funds were now being split into several different directions.
That didn't help our situation any. The financial strain, the emotional strain and just trying to get through it all was heinous on both of us. I was constantly searching for signs in Tynan and it was driving my husband nuts. I felt relatively comfortable that my son was typical but I also didn't trust that feeling since I obviously didn't hit the mark with Gryffin. I felt like I must be missing some mommy gene that controls mommy intuition and I didn't have a full set. I could handle kissing the owies, loving and caring for my children, playing and hugging but when it comes to something as serious as knowing when something was wrong I was lacking some intuitive connection with my kids. Why was I not connecting? Did that mean I wasn't truly bonding? What kind of mother could I possibly be if I don't have the intuition to know if my kids aren't okay? So I watched him like a hawk. It was the only thing I knew how to do. Before Gryffin graduated out of Early Intervention I had them evaluate Tynan. He had one thing that I thought was incredibly odd and was terrified that if I didn't act I could lose precious time like I did with Gryffin. He would throw himself upside down in your arms and wanted to be upside down all the time. I felt a huge weight taken off my shoulders after the evaluation came back at age level or better. I felt like maybe I could trust myself a little now. I finally let it go with him but I don't think you ever stop looking. I did manage to stop stressing. My husband was thankful that I was able to stop worrying about Tynan as it didn't help him to get through his feelings with Gryffin at all. It just added more to the weight he was carrying.
But we made it through. We have come out on the other side as a team working to recover our child and raise our children as best we can. As I worked through all the biomedical interventions my husband slowly starting wanting to know more and more. He had always been supportive of my efforts with Gryffin but just wanted me to fly the plane while he sat in the passenger seat and worked his fingers to the bone to pay for the fuel. He didn't complain about the cost or the effort although sometimes he did fell I was "obsessed". I'll admit I was and I still am obsessed. I research constantly. As time has passed, so has his passenger status. He is now becoming closer and closer to being my co-pilot and the love and appreciation I feel for his efforts is immeasurable. He won't get full co-pilot status until he knows what meds and supplements Gryffin is on, when he takes them and why takes them but he's getting there. Until then he will remain a "co-pilot in training" and I will continue to write a schedule down on a piece of paper and be grateful that he is involved and more importantly, wants to be involved.
Through this blog, I hope to help others navigate through the web of autism and all that it entails. Everything from biomedical interventions, therapies, politics, vaccines and IEP's. From birthday parties to sleepovers.
By the way, my house still isn't finished but we're getting there. You may read posts occasionally on the progress of my house - assuming we don't ever lose it. We still have a hard time financially but we manage to pull through. You may read posts on Tynan. You may read posts on just about anything. But my goal is to help others, especially those who are new to an autism diagnosis that have an interest in trying to recover their children through biomedical intervention. Gryffin is doing well and recovering every day. He's not fully recovered but he's getting there.
Gryffin's Tail is Gryffin's tale. His tail is broken but he is not. We will tend to his tail and with time it will mend. It may have a kink or two but don't we all?
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