Recovery at what price? Literally – what monetary cost?
Let’s just operate on the assumption that children with autism and other chronic conditions can get better physically. When their bodies are well, their minds improve. I have seen it happen. Several times. The value of that “recovery” is priceless. Whether it is the ability to control your bowels, or move them regularly or be potty trained. Or learn to read. Have a conversation. Or perhaps make a friend. Priceless. Ask any parent who has waited for that milestone. But what does it cost to get a child to that point – any point – of improvement?
When I entered the world of biomedical intervention for my son’s illnesses – illnesses that I believed, after some research, to be metabolic or gastrointestinal related – I turned to the big children’s hospital. They, in turn, turned me away. I revealed a little too much about our situation. My son’s brand-spanking-new 299.0 Code was not welcome in their medical clinics (299.0 is the medical diagnostic code for autism). I was then thrust into the world of DAN! Doctors because I wanted testing. I wanted answers. Answers that mainstream medicine was unwilling to investigate for me.
Entering the world of DAN! Doctors and biomedical treatments for your child with autism or other illnesses is like walking into a really fancy restaurant. You just KNOW from the look of things this is going to cost you a butt load of cash. But back when we started we really needed a guide. AND testing. Did I mention I wanted testing?
We found the best doctor for us – board certified neurologist with a love for research and information. We got our testing, consultations and treatments. THOUSANDS of dollars later we had anxiety under control, better bowel function and acceptable sleep patterns. It was just the beginning of our journey, but it was a fabulous start. But every step of the way, every check I wrote or credit line increase I requested, I thought of the families that could not see our knowledgeable doctor – something awesome to have when you first start the healing journey. I knew their children deserved it – of course they did. And here I am, six years later, with a boy who is so much healthier and functional. My bank account, on the other hand, in on life support. And that healthier, happier child still needs more physical support. More healing. Now I’m in that family that can’t afford recovery. Not a great feeling. At all.
Frequently, health insurance will not pay for testing that is not ordered by a physician in your network. Physicians in your network, won’t order the tests you need because they are done by specialty labs that they consider ‘not reliable’. This keeps doctors guessing because they don’t have the data they need. Data the science can now show point to specific dysfunctions and ways to remedy those to better function. A metabolic specialist we now see in a mainstream hospital sat with me and my son as he and a resident poured over metabolic testing that was done by a specialty lab. The doc turned to the resident and said “The problem with these ‘outside’ laboratories is that they frequently also sell the supplements that help some of the issues these tests identify”. This comment completely undermined the validity of the test results to this resident. I looked at the resident and said “This lab is CLIA certified. This lab does not sell supplements. The provider I was working with at the time does not sell supplements. I research every supplement my child takes – not by what a provider tells me to do. Most doctors get their drug information from the drug rep selling the drug, right? THAT is a problem to ME.” Not to mention that I TRIED to use the medical system. Then the medical system rejected us. Of course – that was back when nobody thought they could make money from autism.
So the system is set up to reject our kids, not take their pain or medical issues seriously because of their behavior or diagnosis; not use the latest technology and science to delve into these complex medical conditions AND THEN they mock us for going outside the system. This is a system that tells parents of the dangers of a gluten free diet, but wouldn’t bat an eye upon hearing that a child has “school lunch” everyday. This is a system that will fast track a new chemo drug, or allow it’s off label use to be paid for by insurance – but not allow a proven immunotherapy for a child with PANDAS because the old guard considers it to be a psychiatric problem. Even if it is permitted, rarely is it approved for payment by an insurance company. So it is on our backs – the leg work, the cost – all of it.
It feels very desperate. And, damn, it’s frustrating. But in my search for ideas for helping our kids bodies get better on a budget, I stumbled across a radio show by Raun Kaufman and Kristin Selby Gonzalez. Raun is the CEO of Autism Treatment Center, home of The Son-Rise Program. Kristin is the Chairman of the Autism Hope Alliance. Kristin talked about the information available for treating our children’s bodies and the ideas for assistance with some of the costs. She said something that I immediately dismissed in my sour mood – but it stuck with me all night and into the next day. She suggested that rather than give in to the feeling of desperation because a biomed therapy could not be attained financially, chose to be grateful for all the available information that exists to heal our kids. It’s a very “new age” thing to say – turning an obstacle into an opportunity. But there is something to be said for that positiveness.
And to be fair – that is what my family did. We looked at low cost options that we could implement while funds to the “biomed account” were being replenished. So, instead of implementing an expensive therapy program, I bought the book and am slowly doing some of the evaluation and exercises at home. We are implementing a low cost supplement-based therapy and cleaning up our diets (that have slipped in the past 2 years that my son’s stomach has improved so much).
And there are a TON of resources out there.
Here are a couple of them, and of course at the top of the list is Talk About Curing Autism Now (TACA).
Grants Spreadsheet – This spreadsheet list many organizations that have grants and resources for families with autism. I am not sure when it was updated, but frankly it is a great place to start.
Autism on a Budget: This whole series talks about biomed on a budget, special diets on a budget, food stamps, insurance and public assistance.
TACA Scholarships – Helping families get the medical interventions and assessments they need.
NAA’s Helping Hand Program: This grant program helps families pay for medical and therapy sessions.
Generation Rescue’s Rescue Family Grant: This grant program for families who are new to biomedical treatment.
The Autism Treatment Center: has many scholarships for their training, but they also have a lot of information about how to personally fundraise for their therapies (this information could also be applied to other therapies).
Recently, someone mentioned Bridge to Healing – an online fundraising site that is a 501c3, can help you collect donations for treatment, keeping 10% for their trouble and pays the therapy provider directly. I have not received any information from them, but their email is [email protected].
There are a couple of web-based supports I relied on a lot in the beginning. One website I spent a lot of time combing through was Dana’s View. It is an exhaustive list of all types of autism information from medical to OT, PT and ABA. It includes state resources and even links on common special interests like trains and animation.
There was no Facebook back then (I sounds like I’m 80 years old) and a lot of the action took place Yahoo Groups. To be honest, I still get a lot of the group digests – but I can’t even find my log in information now – it’s been that long since I regularly participated in those groups. Facebook is the latest area of information about resources for families. And believe me there is a group for every type of information you are looking for on it – just keep asking. Parents helping parents is one of the most cost effective ways you can help your children. In fact, our cost effective therapies we are doing this year, could have never been done without the support of my online friends.
These ideas are only a jumping off point. Please post other ideas for resources for families struggling under the burden of healing their children with chronic illnesses, including autism. Your idea could be the comment that gives another family HOPE.
~LuvBug
Thanks so much for this! I know just what you mean …
You’re welcome!
Purchase the book “Disconnected Kids” on Amazon and administer the exercises yourself at home for around $11. We’ve seen miraculous results!
That’s what we’ve done!
Another cheap tip is to purchase the book “Disconnected Kids” and administer the exercises on your own at home. It’s around $11 on Amazon. 🙂
i havent read all the comments so someone might have already mentioned it. You could check if in Pranic Healing they have already a protocol for autism. I had alopecia areata, the dermatologist in amsterdam kicked me out his office because i asked a doc in germany for a second opinion and she told me about another med that the first one didnt talk about. Well, he kicked me out and said i dont need to go to the amsterdam university clinic for another opinion because he is the head of dermatology there. So big is their ego 😀 anway, i got pranic healing sessions once a week and my system stopped attacking itself which i really didnt expect!! If they have a protocol for autism this might be one small thing you can add but i dont know how much they d charge in the US or UK. In holland i just paid 10 euro per session. These are really nice people who are more interested in healing then in making money and they tell you if they cant help. xz
thanks for the good suggestions!
I have seen some families spend a fortune on tests, biomed paths .. One family has no good results, the other family does see improvement but I have provided many options and ways that families can heal kids in Recovering Autism, ADHD, & Special Needs,” for pennies a day and right at home. Not a one size fits all approach, rather a plethora of options.
One of the best resources we do have each other, the information we’ve gathered, the experiences we’ve had. But you are right, one size does not fit all – and those decisions have to be made for your child individually. So true.
How offensive is it that NAA specifically excludes any household making over $50,000.00!!! They don’t take into account the endless out of pocket educational and medical expenses many of these parents face daily. Just because a family makes $60,000 or more doesn’t mean that their need is less than anyone else’s. Furthermore, some in this income bracket have more than one child with Autism or have been severely impacted and displaced by Super storm Sandy. Don’t get me started on that one…all of the millions collected and wasted and again, the middle class excluded and with little help and recourse. I appreciate your blog/posts and hope you continue to keep us informed, but my blood starts boiling when I am referred to resources, trying to keep a positive and open mind, read the biased criteria and see that my family is excluded because of some highly uneducated perception that “my kind” doesn’t need help.
We’ve been caught in that income loop too…it is hard to swallow.
I will add some healers Websites I’ve been made aware of. Pavevision.org is a must if your child is struggling in school. Michelle Garcia Winner’s work is where you go for social skills issues. http://Www.breathing.com is more important than any of us realize. http://Www.dr.bate.com will lead you to neurolimminal training which your child can listen to when they sleep…. Works like neurofeedback but no comparison in price. http://Www.2-b-well.org is the website of another great healer. I will end by talking about discovering electrolyzed reduced water. When your daughter drinks half clean and half 8.5 water and has an explosion in the toilet which looks like piled up wet sand it’s time to take notice the power of this water and the realization of how much constipation is in play here. Dehydration leads to constipation which leads to fatigue. Also the work of Dr. Meillio is a very inexpensive way to improve the brain. He wrote the book “Disconnected Kids”.Www.lumosity.com is a site which offers great brain training. There is so much great work going on but there are also practitioners taking advantage of us…..like paying $80 a half hour for a visual therapist to
Play scrabble with my daughter. BUYER BEWARE!
Much agreed – Buyer Beware is a HUGE thing to remember. Just as we become thinkers about mainstream medicine – use that same thinking with other therapies and practitioners.
Thanks for the ideas!!
For those new to the autism world, or just new to the biomedical side of it…get yourself a TACA mentor. Someone who, usually local to you, can help guide and help you on your way in whatever aspect you’re needing (treatment options, help finding doctors, school/iep assistance/resources available,whatever).
http://www.tacanow.org/about-taca/parent-mentor-program/
There are so many excellent groups out there (yahoo and facebook) but here’s one of my favorites.
A fabulous facebook group for people feeding themselves or others a special diet.
https://www.facebook.com/groups/GFCFKids/?fref=ts
Recovery is possible. Keep the faith. <3
http://www.tacanow.org/family-stories/zacharys-story/
Jackie – thank you! TACA rocks – even if you don’t have a local chapter. The information on their site helped me so much when starting this journey. I found some great stuff the other day, too, when digging for this post.
I would urge parents to become involved in the delivery of services within your state. There are many options for families and we have been able to get many biomedical interventions covered by doctors for their root medical causes. It is essential that you find a good doctor that will assist and treat your child’s medical illness. Though autism is medical in nature many of the illnesses missed are medical that you can bill and will be covered by insurance or Medicaid.
Also please get involved in the autism insurance bills in your state to ensure that choice options are provided in those bills. Everyone should know that behavioral interventions will most likely not assist if a child is medically unsound. These options have to be open so our children can recover. Additionally these services have to be for lifespan services because our children may have medically necessary interventions even as adults.
As parents who has fought and ensured our son’s rights we know it is difficult, but it is well worth it.
Never give up folks, the road to recovery is the one to take, it is possible, and our children do heal.
Great advice and encouragement – Thank you Carolyn!
Awesome, awesome piece. I could have written this piece. Your journey is so similar to ours. The experience of mainstream doctors turning my daughter away that was in PAIN simply because she had autism. How the money just slips away faster than you can blink when you are trying to get your kid back. In our case, it worked….but there was a big financial price to pay. Of course, I would do it all over again. I now KNOW my daughter.
As for more resources: Go to an AUTISM ONE conference! It is free and the information there is immense and valuable.
I’m glad to hear your daughter is doing better. AutismOne is a great resource. The conference has cost $25 for the past couple of years. But for folks that cannot make the trip, there is a TON of information from past conferences on the website on all types of topics: medical to legal. http://www.autismone.org
This is an awesome post! I have recently become involved with TACA and subsequently joined NAA in Arkansas where I live. I think here we are on the bottom rung when it comes to availability of bio-med. I was just telling Cindy Fong, President of the Arkansas Chapter of the NAA that while I have cleaned up our diet over the last 10 years or so, and I have implemented supplements according to what I research on my own- that for my family the idea of visiting a bio-med doctor is just about the same as a vacation on the moon. It’s just not going to ever happen. We get by without that helpless feeling by refusing to think about it. As the newly elected VP of the Arkansas NAA this is something I feel needs to be addressed. No longer refusing to think about it!
Congratulations Newly ELected VP to the Arkansas NAA!!!!! And congratulations for no longer refusing to think about it!
Hi Luvbug,
Reading this post, especially the part about parents not being able to afford treatments really resonates with me. I actually got audited a few years ago because the IRS wanted to know why I spent so much money on “medical” visits when I had insurance. Well, duh, I have a son with autism and major medical covers no DAN doctor treatments! So I had an idea to create a low cost to free holistic center. The first would be in New York but, once the concept was a working model, we would roll them out across the country. Awesome! Yeah, except it took me another 4 years to put it together(got pregnant with my second child, etc…you know life gets in the way!). I am pleased to say we are now on our way to making this holistic center a reality…a physical working space dedicated to children and young adults with autism and developmental disorders. It will be open to everyone not just low income families. Not offering a cure…just a little help! May I re-post this article on our Facebook page?–Deb
Please DO post the article to your facebook page. Please also go to TMR’s FB and post the name of your center – and post it here too. Congratulations on achieving your dream!
Thanks for the kudos LuvBug. My not-for-profit is called Pop.Earth (short for Population Earth, our slogan- We Are One), is dedicated to helping people with disabilities. Our first project is called The Om Holistic Center for Autism & Developmental Disorders. Our FB page is facebook.com/om.pop.earth
We also have a landing page at popearth.org (our new “Fancy” : ) site will be launched next week).