I've been debating drafting this for quite some time, but what it comes down to is that there are a TON of people who have asked me what our Tool Box consists of. This has taken me a over a decade to put together, and its specifically generalized. :)
Big Disclaimer - anywhere there's a link I'm either getting a referral credit, or the product is a multilevel marketing product that we use and I am a "representative" of pretty much for the discount. Anything I make from you clicking / purchasing goes right back into therapies for Dominic and is in fact a very nice way to support us.
1. Give yourself time to grieve. This is post diagnosis, and it sounds so weird, but is a critical part of the journey. Grieve what you and your kiddo don't get. Cry, moan, and be miserable. Then take a deep breath, pull on your Big Girl Panties, and get to work.
2. Diet, diet diet. Its both the hardest and easiest part of this journey. Its the hardest because in some cases we've got to get past oral aversions, sensory stuff and feeding therapy to get them to eat anything. A referral to occupational therapy will help if the aversions are sensory. Behavior therapy can also help if its OCD/Routine oriented. Once your child will eat what is placed in front of them, period, focus on gluten, dairy and soy free, as well as artificial everything free. Yes, this means you have to cook from scratch and will use very nearly no canned/jarred/premade sauce type items. Its the hardest part of the journey because of the time you will spend cooking, shopping for the best food, etc. Its the easiest because it becomes second nature.
3. Local resources. Find them. We are on a waiver that waives our income and provides our child with Medicaid that covers his therapies and pays me to be his Personal Care Assistant for 54 hours a week (yes, that is on top of my full time job). We are in another local program that gives us $1200 a year for respite. Ask other parents and find the resources that are local to you. Rule of thumb is to never leave a resource on the table.
4. Therapies. We've done: ABA, OT, ST, HippoTherapy, vision Therapy, reflex integration... I recommend starting at your doctor and asking for a referral to a pediatric therapy clinic for eval in all disciplines. And go from there.
5. School. I recommend getting your child early intervention if they are young, and that process will flow through school. Most local agencies will point you to educational advocates if you need them. Learn your rights. Wrights Law is a wonderful online compilation. Remember - you and the school have different objectives. Yours is to create an happy, independent human being; theirs is to ensure said human being can read, write, and do math. Never forget that you have a different end goal in mind, and don't be a bully. You get MUCH further with teachers when you respect them and treat them as a critical part of the team.
Spring of 2020 - We are now in a small (kitchen table small) private school run by an adult with autism herself who is developing an exciting brain bridging program and are thrilled at Dominic's progress.
6. Providers. We've seen a lot. Right now I run our program, with guidance from the following disciplines:
Primary Care provider: We see her about once a year, basically as infrequently as possible, because - germs and I hate wasting her and our time. We have a relationship where she signs for therapies and knows that I don't ask unless I need.
MAPS doctor (formerly DAN) - These are the folks who specialize in Autism (Medical Academy of Pediatric Special needs). Ours is remote, we see her in person whenever we can, but most of our appointments are over video calls. Don't be afraid to search for the right fit. No one is the right fit for everyone
Chiropractor: Chiropractic is not only a very helpful structural therapy for our kids, its also a place where i can get a second set of thoughts about supplementation
Line Therapists: at present we have a speech therapist and 2 occupational therapists - all who are currently home based. In the past we have had Behavior and vision therapists in the mix, too.
Naturopaths and Nutritionists OH MY - we aren't currently using either, but have in the past and may in the future.
Homeopath - I've used homeopathy over the years and am very pleased with our current homeopath because she uses a machine that has thusfar been incredibly accurate for us.
Case managers galore - We currently only have 2, which is a reduced amount, one for the Waiver and one for the Respite program I mention above.
7. Supplements and regimes...
Detox.
All our kids need it. The majority of them are geneticallly detox hampered and the absolute best thing we've ever done for Detox is the IonCleanse by AMD footbath. We took part in a study between the manufacturer and the Thinking Moms Revolution 3 years ago now and it remains our foundational protocol. I wish we had started here all those years ago. Its expensive ($2K) but if I had known 10years ago we'd be out of pocket over a half a million dollars, that would've put things into perspective. They offer - and mean - a 60 day money back guarantee and I admin a facebook group of over 5K families using it for their kids. You are welcome to check it out - its called Ioncleanse by AMD for ASD.
We also regularly use a FIR sauna
Anti-Inflammatories
Whether your kid is a child who had encephalitis from either a vaccine or a virus (our case), or you kid has PANDAS... odds are very high that at some point an AntiInflammatory is going to be added to your regime. Over the years we have used enhansa, Curcumin, Advil, PEAPure, and hemp oil (cbd) in several brands.
We've done the following protocols successfully and keep them in our toolbox:
Dorfman Dyspraxia protocol (I was pulsing this one, but since we started with this Brain bridging classroom, and his brain is being asked to do so much, I've been doubling the dosing. Brains need fat)
AntiAndrogen Protocol
Nootropics:
These are controversial, but I;ve gotten great results on the way in using herbs specifically meant to enhance cognition, like a product that I can no longer find call Get Smart. I'll be looking for a new one...
AntiVirals
Our kids have underlying viruses. If you are working with a doctor, ask them to test for viral titers, specifically the herpes family, Epstein Barr, and measles and that will help you sort out which protocol might have the best chance of working. These are the things we've used over the years that have unwound them for Dominic
High Dose Vitamin A (McCandless protocol)
LDM-100
L-Lysine
Big Disclaimer - anywhere there's a link I'm either getting a referral credit, or the product is a multilevel marketing product that we use and I am a "representative" of pretty much for the discount. Anything I make from you clicking / purchasing goes right back into therapies for Dominic and is in fact a very nice way to support us.
1. Give yourself time to grieve. This is post diagnosis, and it sounds so weird, but is a critical part of the journey. Grieve what you and your kiddo don't get. Cry, moan, and be miserable. Then take a deep breath, pull on your Big Girl Panties, and get to work.
2. Diet, diet diet. Its both the hardest and easiest part of this journey. Its the hardest because in some cases we've got to get past oral aversions, sensory stuff and feeding therapy to get them to eat anything. A referral to occupational therapy will help if the aversions are sensory. Behavior therapy can also help if its OCD/Routine oriented. Once your child will eat what is placed in front of them, period, focus on gluten, dairy and soy free, as well as artificial everything free. Yes, this means you have to cook from scratch and will use very nearly no canned/jarred/premade sauce type items. Its the hardest part of the journey because of the time you will spend cooking, shopping for the best food, etc. Its the easiest because it becomes second nature.
3. Local resources. Find them. We are on a waiver that waives our income and provides our child with Medicaid that covers his therapies and pays me to be his Personal Care Assistant for 54 hours a week (yes, that is on top of my full time job). We are in another local program that gives us $1200 a year for respite. Ask other parents and find the resources that are local to you. Rule of thumb is to never leave a resource on the table.
4. Therapies. We've done: ABA, OT, ST, HippoTherapy, vision Therapy, reflex integration... I recommend starting at your doctor and asking for a referral to a pediatric therapy clinic for eval in all disciplines. And go from there.
5. School. I recommend getting your child early intervention if they are young, and that process will flow through school. Most local agencies will point you to educational advocates if you need them. Learn your rights. Wrights Law is a wonderful online compilation. Remember - you and the school have different objectives. Yours is to create an happy, independent human being; theirs is to ensure said human being can read, write, and do math. Never forget that you have a different end goal in mind, and don't be a bully. You get MUCH further with teachers when you respect them and treat them as a critical part of the team.
Spring of 2020 - We are now in a small (kitchen table small) private school run by an adult with autism herself who is developing an exciting brain bridging program and are thrilled at Dominic's progress.
6. Providers. We've seen a lot. Right now I run our program, with guidance from the following disciplines:
Primary Care provider: We see her about once a year, basically as infrequently as possible, because - germs and I hate wasting her and our time. We have a relationship where she signs for therapies and knows that I don't ask unless I need.
MAPS doctor (formerly DAN) - These are the folks who specialize in Autism (Medical Academy of Pediatric Special needs). Ours is remote, we see her in person whenever we can, but most of our appointments are over video calls. Don't be afraid to search for the right fit. No one is the right fit for everyone
Chiropractor: Chiropractic is not only a very helpful structural therapy for our kids, its also a place where i can get a second set of thoughts about supplementation
Line Therapists: at present we have a speech therapist and 2 occupational therapists - all who are currently home based. In the past we have had Behavior and vision therapists in the mix, too.
Naturopaths and Nutritionists OH MY - we aren't currently using either, but have in the past and may in the future.
Homeopath - I've used homeopathy over the years and am very pleased with our current homeopath because she uses a machine that has thusfar been incredibly accurate for us.
Case managers galore - We currently only have 2, which is a reduced amount, one for the Waiver and one for the Respite program I mention above.
7. Supplements and regimes...
Detox.
All our kids need it. The majority of them are geneticallly detox hampered and the absolute best thing we've ever done for Detox is the IonCleanse by AMD footbath. We took part in a study between the manufacturer and the Thinking Moms Revolution 3 years ago now and it remains our foundational protocol. I wish we had started here all those years ago. Its expensive ($2K) but if I had known 10years ago we'd be out of pocket over a half a million dollars, that would've put things into perspective. They offer - and mean - a 60 day money back guarantee and I admin a facebook group of over 5K families using it for their kids. You are welcome to check it out - its called Ioncleanse by AMD for ASD.
We also regularly use a FIR sauna
Anti-Inflammatories
Whether your kid is a child who had encephalitis from either a vaccine or a virus (our case), or you kid has PANDAS... odds are very high that at some point an AntiInflammatory is going to be added to your regime. Over the years we have used enhansa, Curcumin, Advil, PEAPure, and hemp oil (cbd) in several brands.
We've done the following protocols successfully and keep them in our toolbox:
Dorfman Dyspraxia protocol (I was pulsing this one, but since we started with this Brain bridging classroom, and his brain is being asked to do so much, I've been doubling the dosing. Brains need fat)
AntiAndrogen Protocol
Nootropics:
These are controversial, but I;ve gotten great results on the way in using herbs specifically meant to enhance cognition, like a product that I can no longer find call Get Smart. I'll be looking for a new one...
AntiVirals
Our kids have underlying viruses. If you are working with a doctor, ask them to test for viral titers, specifically the herpes family, Epstein Barr, and measles and that will help you sort out which protocol might have the best chance of working. These are the things we've used over the years that have unwound them for Dominic
High Dose Vitamin A (McCandless protocol)
LDM-100
L-Lysine
Colloidal silver
Enzyme Defense
Pre and Pro Biotics
we have been on approximately 11 million brands and none of them did anything until we started Liovi. Liovi is a yogurt drink that we used from early 2018 for about a year. The downside to it is that because it ships frozen its ridiculously expensive to source. Recently we have moved over to Flourish which is a ferment.
A few years ago, we started Restore, which is a prebiotic, and we love it. Its stopped Dominic's yeast flares. Some kids are so sensitive, that they need to start in drops on this too.
EFA's
This is pretty standard for Autism and we pulse in the above mentioned dsypraxia protocol once a year or so. The rest of the year we just do fish oil as per the bottle dosage. This year I've also played with Camel Hump Fat.
Binders
At one point we gave Bentonite clay daily... we don't do that anymore. I keep activated Charcoal and bentonite clay around as first aid, and i recommend everyone do the same.
Mitochondrial support
I'm rapidly approaching the mindset that all children with Autism have either Mito that caused it, or Mito that resulted from the same environmental injury that caused the autism. As in, their cellular energy is depleted and so they struggle. We didn't realize until last summer when our MAPS doc ran a genetic interpretation software using our 23andme results that Dominic's entire carnitine pathway was mutated. She suggested we try mito support. Literally the second day we were on PQQ, we realized that Dominic's eyes weren't abnormally dilated. For years we had been told that was adrenal fatigue and we'd tried a ton of adrenal supports. Well, your adrenals fire when your mitochondria struggle, so we were right, but we needed to step it back some. Now that his mito is supported, his adrenals are recovering. I wholeheartedly encourage mito screening for all kids on the spectrum.
Magic Socks
And our latest intervention which I have huge hope for - Magic socks / soles. These are wearable technology, which I cannot explain, but which has reduced SIB's and Sensory discomfort almost overnight. They advertise that they work on the brainstem and bring it to homeostasis. I can tell you that the whole family has been wearing them 24/7 now and are all seeing interesting things. My regular morning edema is gone. Daddy's stamina is noticeably increased, and Dominic, well Dominic's doing amazing stuff.
May 2020 - I've let the account with Voxx go because i got tired of having to buy something every month but I still use them for myself and believe they are the best thing we ever did for the sensory discomfort.
Below are companies / protocols we've tried, had accounts with, and let go for one reason or another....
Univera - they sell aloe and assorted supplements
Young Living - I still use lots of essential oils but am off autodelivery until I run out of my stash. These are primarily first aid here, we don't have any we use daily for Autism per say
Unique Healing
Prime My Body - I didn't like the help desk support so withdrew after a year of being an associate
Enzyme Defense
Pre and Pro Biotics
we have been on approximately 11 million brands and none of them did anything until we started Liovi. Liovi is a yogurt drink that we used from early 2018 for about a year. The downside to it is that because it ships frozen its ridiculously expensive to source. Recently we have moved over to Flourish which is a ferment.
A few years ago, we started Restore, which is a prebiotic, and we love it. Its stopped Dominic's yeast flares. Some kids are so sensitive, that they need to start in drops on this too.
EFA's
This is pretty standard for Autism and we pulse in the above mentioned dsypraxia protocol once a year or so. The rest of the year we just do fish oil as per the bottle dosage. This year I've also played with Camel Hump Fat.
Binders
At one point we gave Bentonite clay daily... we don't do that anymore. I keep activated Charcoal and bentonite clay around as first aid, and i recommend everyone do the same.
Mitochondrial support
I'm rapidly approaching the mindset that all children with Autism have either Mito that caused it, or Mito that resulted from the same environmental injury that caused the autism. As in, their cellular energy is depleted and so they struggle. We didn't realize until last summer when our MAPS doc ran a genetic interpretation software using our 23andme results that Dominic's entire carnitine pathway was mutated. She suggested we try mito support. Literally the second day we were on PQQ, we realized that Dominic's eyes weren't abnormally dilated. For years we had been told that was adrenal fatigue and we'd tried a ton of adrenal supports. Well, your adrenals fire when your mitochondria struggle, so we were right, but we needed to step it back some. Now that his mito is supported, his adrenals are recovering. I wholeheartedly encourage mito screening for all kids on the spectrum.
Magic Socks
And our latest intervention which I have huge hope for - Magic socks / soles. These are wearable technology, which I cannot explain, but which has reduced SIB's and Sensory discomfort almost overnight. They advertise that they work on the brainstem and bring it to homeostasis. I can tell you that the whole family has been wearing them 24/7 now and are all seeing interesting things. My regular morning edema is gone. Daddy's stamina is noticeably increased, and Dominic, well Dominic's doing amazing stuff.
May 2020 - I've let the account with Voxx go because i got tired of having to buy something every month but I still use them for myself and believe they are the best thing we ever did for the sensory discomfort.
Below are companies / protocols we've tried, had accounts with, and let go for one reason or another....
Univera - they sell aloe and assorted supplements
Young Living - I still use lots of essential oils but am off autodelivery until I run out of my stash. These are primarily first aid here, we don't have any we use daily for Autism per say
Unique Healing
Prime My Body - I didn't like the help desk support so withdrew after a year of being an associate
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