Recovery from Autism is a journey… here are a few tips

Recovering a child from autism is a journey. A journey that is long and can take you many places where you never thought you would have ever gone. It is also a marathon, requiring many breaks to gain perspective and many changes in route to accommodate stormy weather. It is not, nor should it be considered to be a quick trip or a race to the finish line.

Nicholas has been healing, recovering for quite some time now. We’re almost to the three year mark in his recovery and I am thankful for the tremendous progress he has made. None of this has been a “quick fix”; none of this has come without a price in one way or another. And not one of his accomplishments to date has been overlooked – we are thrilled with each step forward. Actually thrilled is not a strong enough word.

I’d like to share some things that I feel should be part of “Biomed for Autism Recovery 101” – I hope this list is helpful….. I have picked up from experience along the way and I hope these spare you with having to figure this out for yourself. This post is not aimed at anyone – it’s just my way of trying to be helpful to anyone who is in the beginning of this journey.

In no particular order….

“This is a marathon, not a sprint…”
I know I used to get tired of hearing, “this is a marathon, not a sprint” – because let’s face it, we want our kids back NOW. But, it’s true. This is not a sprint. We are repairing our children’s bodies, their brains and many of us are cleaning up our lives with our new found knowledge. I wish recovery could happen overnight, but it takes time. It is important to pace yourself and not rush into anything. It is also important to research one area and understand it to the best of your ability before moving on to the next and the next and the next and the next.

For many children, recovering from autism is not a one-year deal. We’ve been doing biomedical intervention for three years and while my son, who has come a tremendous distance in that time – we still have a distance left to travel.

Recovery means different things to different people
Understand that different people view “recovered” differently and do not make assumptions based on your definition without taking their definition and circumstances (cause and severity of their child’s injury) into account. What do I mean by this? Recovery means different things to different people. There is wide range of opinions out there on the definition of recovered. Here are a few:

  • – Some believe “recovered” means that their child has lost their ASD diagnosis, but has to maintain their supplement/diet routine in order to be recovered. (This is considered by many to be “managed recovery.”)
  • – Some believe that their child’s ASD diagnosis wasn’t dependent any other issues, (GI issues, toxicities, immune dysfunction, etc.,) so when their child loses that diagnosis, they consider them recovered, even though they are still toxic, still have major GI issues, etc. (Even though, for many, recovery is happening because these other issues are dealt with.)
  • – Some believe that a child can be recovered if they have lost their diagnosis, but are still grossly not age-appropriate. (A 10 year old who acts like a 3 year old.)
  • – Some believe that recovered means that no diet is necessary, the child has lost his/her diagnosis, is age appropriate and needs only a few supplements, if any at all – and that being recovered doesn’t require you keeping up with a strict supplement protocol in fear that the child will regress.
  • These are just a few definitions of recovery I have heard – but until you are immersed into this world, it’s hard to understand the differences – but when researching treatments and supplements and talking to parents who have gone through this before you – this is one thing that having an understanding of will help you in the long run. Do not make any assumptions just because they use the word, “recovered.”

    Pace yourself when adding supplements
    Go slow… Adding supplements one after another and another and another is not a wise choice. Starting a new supplement on Monday and then adding a new supplement on Wednesday is not a good idea. Why? Well, for one, supplements are expensive and the cost adds up quickly. So why spend money on something that is not working when there are other things that you could spend it on that might work? Two, why give your child a supplement he/she clearly does not need? It’s just more for their bodies to process and if it’s unnecessary, then why put your child through this?? Three – sometimes bad reactions to a supplement could take more than a day or two to be evident. Four – if you start a new supplement too soon and then start seeing good gains, which supplement did it? The new one you just started today? or the one you started 2 days ago? Knowing which supplements that don’t work for your child is as important as knowing which ones that do/did. (There are going to be supplements that your child may need regardless if you see any improvement or not – and these supplements should also be given an adequate amount of trial time before moving onto the next one.)

    Here’s an example…. you start supplement X and after 3 days, the child is doing some new stuff. So you start supplement Y and you see even more great things. Which supplement caused the 2nd boost? X or Y? Problem is, you don’t know until you remove Y and see if you lose gains or keep gaining. So, after a week or two of removing Y and watching – then adding it back and watching it again, you figure out it was Y, but then, X might have done all it can and you don’t need it, but because you added Y so quickly, you keep giving X because you think it’s still needed when if you had just done x for 2 weeks in the first place, you might have seen that it was a fluke that he/she was doing great stuff for those three days because by the end of the 2 weeks, it had fizzled out.

    Don’t buy tons of new supplements at one time
    When placing supplement orders, do NOT buy more than ONE (or two) NEW supplements at a time. You will save yourself $$ – because more times than not, if you buy a bunch of new ones to try – you will probably end up changing your mind or seeing something else that you want to try FIRST. Buy a new one and try it. Decide whether or not it’s a keeper and move on….

    Do not RUN OUT of current supplements when starting new ones
    Do not let yourself run out of current supplements when you are starting new supplements. If you run out of x and then start Y and see your child regress, why did he/she regress? Was it because he/she is missing X? or was it because Y isn’t right for him/her?

    Supplement Breaks & Restarting After a Break
    Take a supplement break every once in a while. If you have the opportunity to stop all or most of your child’s supplements for a little while, do it. Sometimes their bodies just need a break – and sometimes you will find that a supplement that was once needed is no longer needed or that a lower dose would work just fine.

    When you decide to restart, you want to add one back at a time just like you originally did – but SLOWLY and at smaller doses than what you were at before. Don’t take 2 weeks off and then put back everything at 100% of the doses the next day. If you start seeing regression, then add them back more quickly than if you do not see regression, but don’t just put everything back in place in an instant.

    Don’t write off supplements forever
    If your child reacts poorly to a supplement, don’t write it off forever. It might be that at this point in time, he/she cannot tolerate it or it might mean that he/she needs another supplement with it. Or maybe they don’t need it now, but might need it in the future.

    Find out why they reacted poorly to a supplement
    If you child reacts poorly to a supplement, try to find out why – He/she not doing well on something could provide you with some insight or a hypothesis as to what’s going on with your child’s body.

    Never assume supplement formulas don’t change
    Do not assume supplement formulas do not change from bottle to bottle. It is always best to compare the ingredients on bottle you just bought with the one you are throwing away.

    Changing supplement brands
    Changing supplement brands should be treated in the same way as adding a new supplement. And only change one at a time.

    Work on swallowing capsules
    For the longest time, Nicholas was drinking his disgusting supplement cocktail. Even though every day was a challenge to get him to drink it all, I would eventually prevail. Well, at some point, he flat out refused and who could really blame him? Having him not take his vitamins was not acceptable and me being stressed out constantly trying to get him to drink it was also unacceptable, so I started working on getting him to swallow capsules. And it was one of the best things I did. I started him on the tiny Oil of Oregano capsules – one per day – they are smaller than a raisin, but bigger than a tic tac. After a week or so of him being comfortable with him swallowing one of these, I moved up to the smallest regular capsule size and did this until we hit the large fish oil gelcaps. Right now, he swallows 2 of the big ones at a time with no problem whatsoever. This was one of the biggest life changing, freeing moments we had. And there was a visible difference in him going from drinking supplements to swallowing the capsules. So, all that time – how much money were we wasting on supplements that had either no effect or a lesser effect because they were mixed in liquid? Free yourself from the nasty smoothies, shooting syringes down their throats and teach them how to take their supplements. After all, it is something they are going to need to do along with putting on their clothes and shoes.

    MLM Schemes
    Watch out for MLM (multi-level marketing) schemes and bias from parents involved with them. I have come across warrior parents who are just looking to sell me something, telling me that it “pushed their child into recovery”, that it is the “magic bullet”, etc. And maybe for their child it was what pushed them into recovery – or maybe they would have gotten there without it and it was merely a coincidence. Or maybe it’s just a flat out lie.

    I have friends who are representatives/distributors for various supplement companies and I trust them when they tell me that they became a distributor for a product because of how it helped their children/themselves because I know details about their children, their on-going recoveries, etc.

    So don’t interpret this as me saying MLM supplements are bad, because that’s not what I am saying. There are a lot of good companies out there. Do your research is all that I am saying – don’t take someone’s word for something just because they are a fellow warrior parent.

    Parents getting kick-backs for treatment referals
    Don’t let one child’s progress or recovery lead you into spending mega-bucks on a therapy or treatment for your child. I have heard of parents getting kick-backs for referrals, which I am sure were not disclosed to those paying for their child to receive the treatment/therapy.

    Do your own research! Don’t blindly follow one parent’s advice
    Do your own research. I cannot stress this one enough. Each group, message board, etc. has a parent or parents who seem to be the ones answering all the questions. This does not mean that they 1) have all the answers and 2) have recovered a child anything like yours. So, make note of what they’re telling you – then use that as a direction to start your own research and make your own decisions.

    Do not compare biomed progress
    Try not to compare your child’s progress (biomedically) to another child. Some children are easier to recover than others. What caused autism for one child may not be the same reason as to why your child has autism. They all have different issues and may recover in different areas at a different pace. What may bring language in one child might bring increased cognitive awareness in another. Also, the level of injury of each child varies, so this needs to be taken into account as well.

    Spinning in Circles
    Don’t let other parents, who you think are more knowledgeable than you spin you in circles. Your child is your child and you are the only one that knows everything about them. So if you mention you want to research A and they suggest B – make sure you research both A & B – don’t just drop A to run after B because of what they said.

    Massive Healing Regressions are Unnecessary
    Pushing your child through massive healing regressions constantly is unnecessary in most cases. It’s one thing for them to regress a little when starting anti-fungals, anti-virals, chelation, etc. but it’s completely another story to push them through something that makes you lose a year’s worth of gains in a matter of days. Starting low and going slow is always a good idea. I had pushed Nicholas through a “healing regression” over a year ago and while we saw good things, it was unnecessary to put him (and us) through that and I would never do it again. At the time, I was blinded by all of the progress and new language that came along with the massive regression, so I pushed through, but it was stupid and almost cost me my marriage. Don’t misunderstand what I am saying – sometimes you have to deal with some negatives to get to the positives and sometimes moving forward and getting to the next step means pushing through some regression – which especially happens when starting anti-fungals for the first time. Sometimes you have to deal with a moody, cranky, tantruming, etc. kid for a few days – this is not what I am talking about. What I am referring to is a major, major regression.

    Research Tips
    As you are researching, make a list of other research you want to do so you can go back to the new subject later. This is helpful in keeping you on task so that you can thoroughly research the area you are on before moving to another. It’s very easy to jump from one thing to another and another and miss a crucial detail that could mean all the difference to your child.

    Journal Everything
    I cannot stress this enough…. Keep a journal of all things about your child. Include what food they eat, poop, mood, new things they say/do, behaviors, etc. Also be sure to keep a supplement journal noting what supplements were missed, new supplements, changed dosages, etc. You would be surprised how helpful this will be.

    The right doctor for your child isn’t necessarily the most expensive DAN doctor
    Just because the DAN charges the highest rate doesn’t mean they have the most knowledge – or even the appropriate knowledge to help your particular child. Talk to parents in your area about who the local doctors are that can help – and ask as many parents in your area as possible because everyone has a different experience. And ask the parents questions such as what their child was like before they started with that dr and what they’re like now. Ask how much the doctor contributed to the brainstorming process or if it was mostly the parents. Ask how much knowledge the dr has on supplements and if he/she often made recommendations for their child. Ask if that doctor keeps on top of the current treatments. Ask if the doctor writes prescriptions in between appointments or requires a pricey office/phone visit just to get a refill. Ask the parent what they think that doctors strongest areas are. Ask if the doctor is accessible in case of emergency.

    Co-Pilot your child’s recovery with his/her Doctor/DAN
    We learned our lesson the hard way with putting our children’s health in the hands of our pediatricians. DAN’s want to help our kids, but that does not mean that they are all knowing. Let’s not forget that all of our children’s issues are unique, so the best way to get the most out of your DAN is to be co-pilots in your child’s treatment. Work WITH your child’s doctor(s) towards recovery. And yes, that includes doing your own research.

    And finally….

    Don’t wait for recovery for life to start.

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    2 Responses to “Recovery from Autism is a journey… here are a few tips”

    1. T Critch says:

      I loved this, thank you. It is nice to have all those little reminders that keep us on track. I know I often get side tracked or tunnel vision. These are great tips, I know they refocused me.

    2. Mom says:

      You’re welcome. Thank you so much. I end up typing these so many times in one form or another, I figured I might as well post about it.

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