Wednesday, April 10, 2013

5 Star Approach to Healing #FASD by Victoria Deasy




Guest Post - Victoria Deasy

Whether a child has a diagnosis of Fetal Alcohol Spectrum Disorders (FAS, ARND, Partial-FAS, or anything in between) or a suspected exposure, the few professionals who know something about FASDs, along with the literature, talk about the 'permenant brain damage" that ensues. Damage to the brain is certainly accurate but 'permenant' may no longer be true. We have learned a lot in the last 5-10 years about how plastic the brain is, how different parts can heal or take over for other parts, and how new neurons can grow over time. 

Because of these new neuro findings, we need to look at FASD a bit differently.

It should be noted that the alcohol that damages the brain damages different parts of the brain in different people. Some of this can be because of the amount of alcohol ingested, the time just before and during pregnancy in which the mother was using alcohol, the number of occasions in which the woman drank, the nutrtional state of the mother before and during the pregnancy, whether other drugs were also ingested, if the mother smoked, lived an unhealthy life-style, received pre-natal care or not, what kind of emotional life the mother was experiencing (whether she was abused, under stress, etc.) and many other things that could affect the fetus at anytime, with or without the alcohol exposure. Add these things to the alcohol exposure, and the direction of the damage is on its course. 

There are also the things that happen to a child after birth. 

There are traumas: 
  • If the infant is placed in an unstable household, the brain changes some more; if the child is placed in an orphanage, especially an orphanage where children are not held, caressed, nourished, allowed to move, spoken to and sung to, the brain has less of a chance to grow and develop properly; if the child is abused or harmed in any way, there are more doors shut to proper brain growth and development. 
  • Even if everything goes very well after birth, if the child is adopted, even right out of the hospital, there is "trauma" in the mere fact that the child has been removed from the birth parent to which there has been a nine-month bond, a bond that is now broken. We usually can't separate out all the things that make up our children, especially if they are adopted and we don't know for sure all the things that have occurred to create the brain and brain damage that is now part of the whole picture called FASD.

I often have people ask me what we have done to try to heal my son's FASD. I can tell what we have done but I cannot tell others that all of this will work for them. I feel very strongly that what we have done (some learned from the autism community) has been very effective. I also have to say that it took years and years of trial and error to get all of this put into place. I can't help but wonder if we had done all the interventions earlier, if things would be even better. But, one cannot dwell on such conjectures. We did this on our own, unable to find doctors who knew anything that would help us. Now a days, there is more help out there and I would suggest that finding doctors who can help, would be the best route. 

Some of us will need to teach some of those doctors and some of us will need to forge our own paths.


There are 5 intervention strategies that I think are vital: 
  1. Nutritional Therapies (diet, supplements, chelation, etc.) 
  2. Neuro-Movement Therapies (NeuroReorganization, Musgatova, Rhythmic Movement Training, HANDLE and the like)
  3. Therapeutic Parenting (Heather Forbes, Bryan Post, Howard Glasser, and others), including psychologists/ psychiatrists, when needed
  4. School Choice (the child needs what s/he needs, not what is apparently available; this can include Montessori, Waldorf, homeschooling, unschooling, small private school, special ed school)
  5. Belief System (not necessarily religious) and a 'village' to support such. I think if these things can be put into place so as to keep the child calm, non-anxious, feeling cared for instead of experiencing constant punishment, anxiety (of things that no one knows are anxiety-producing), and feeling worthwhile, then healing has a chance. 

Nutritional Therapies: for us, this started with eliminating all food dyes (Red#40 made my son almost bi-polar!) and to keep them out of shampoos, lotions, toothpaste, etc., because these are absorbed through the skin; eliminate all chemical sugars, all corn syrups (not just high fructose corn syrup), and to go as organic as possible, eat grass-fed beef, eat chicken and eggs that are hormone and anitbiotic free and which are free-range. A lot of children may need to be taken off casein (most dairy products) and/or gluten (most grains). For those who are nervous about their child not getting enough calcium from milk, just remember that calcium can be found in many other sources and there are many substitutions for cow's milk. 
  • Our next thing to try was Omega-3 Fatty Acids (per THE LCP SOLUTION by Jacqueline Stordy, a book I found in the library, somewhat by accident). I had to research this even more and figure out dosages but there is a lot of information in THE LCP SOLUTION, even the brands used in actual research. We chose one of those brands, but I don't really know why we chose the one we did. I was to discover several years later, that this brand has extra Evening Primrose Oil (EPO)and when we ran out and I gave my son my store-bought omegas, I noticed some regression (especially with hyperactivity, impulsivity, etc.) I went back to THE LCP SOLUTIONS and discovered some studies which showed that about 15% of boys didn't do as well on Omegas until they added the EPO and then, they came up to the levels of the other study participants. Even though we have now switched to krill oil (for more bio-availability), we buy one for women because it has the EPO in it. This may or may not work for others, as well. 
  • Over time, as I researched and researched, we eventually added stomach enzymes, amino acids, extra Vitamin Bs, extra Vitamin D (only after a blood test to determine my son's levels, showing how deficient he was)and then, added choline (per studies by Dr. Ed Riley,, at San Diego State University. It took awhile to decide on doses but per the Linus Pauling Institute at Oregon State University, I at least knew what the 'adequate' doses would be (adequate meaning enough to keep someone alive). It also listed the possible 'toxic' amounts, an amount that was so high that no one would ever get that high. Later, I learned about piracetam. This is a synthetic and not for everyone. I started my son on this at age 17-18 and his senior year in high school was astounding, compared to all his other years in school. 
  • The choline affected my son's memory...all for the good. 
  • The piracetam also affected memory but for the first time, he knew what his school assignments were, knew when to hand them in, actually handed them in, juggled his long-term projects, began to feel bad if he made a mistake, felt awful if he forgot an assignment....he actually would shake his head in disbelief when fellow students would do the exact silly things he used to do, only now he couldn't believe how 'stupid' they were being (his word, not mine). 
  • These nutritional changes helped to get the Therapeutic Parenting into his psyche.
The Neuro-Movement therapies helped to re-organize 
his very disorganized brain and nervous system. 

Each part of my star helped to fortify the other points. I chose the right schools (I only knew this for sure after the fact, of course) and found other people, at school and at a church I joined just for what my son needed, to nourish my son, to help him along the way, to understand him in all his 'differences,' to give him the examples that his 'chameleon self' needed. 

Is my son "cured" of his FASD? 

No. There is no cure, as of yet. But, healing can take place. It's like children who have polio: do we leave them in an iron lung or do we do something so they can be in a wheelchair or using a walker or crutches or even, to get through life with just a limp. We are working towards the limp! 

Is any of this easy? 

Heck no! Trying to raise a child with FASDs is probably the most difficult thing any of his will have to do. We have children no on seems to understand, we get no help, we seem to have to fight for every little thing our child needs, we are blamed for their behavior, we are blamed for not parenting them well, we are blamed for letting them get away with poor behavior....

So, let's be the change we want to see. 

We will do whatever we need to do to heal our children. We will fight for them, guide them (even as they try to get us off their backs), support them, and keep them close and safe for as long as they need us to do this. 

And then, let us give them a chance to spread their wings and try life on their own... but knowing that we tried everything we knew how to get them to that place.

1 comment:

Unknown said...

Jodie...Darlin Dee here....L love this 5 star approach graphic. Did you make the 5 star graphic? I really really love it! If you did make just wondering if the wording can be change a wee FASD is lifelong and cannot really be "healed"...I totally get what the stars in place can do in a positive way to help but just worry that some parents will think that FASD will go away if they do these things. Obviously with all those supports in place a person with FASD will be successful...but not healed. Does that make sense? You can message me on facebook if you'd like!!