By Mary Romaniec
Upon hearing the dreadful “A” word in association with your child, most parents begin a period of mourning the loss of a childhood imagined. Some remain helpless within the diagnosis, others begin to take CHARGE of educating themselves on what it takes to help their child RECOVER from autism.
Yes, there is RECOVERY from autism. There is also improvement of autistic symptoms in varying degrees depending on the child. Most often it will require an extraordinary amount of effort by the parents to uncover every stone in the quest to help their child.
So where to begin. . .
1. Begin the education process!!
No time for sympathy now. Your child does not benefit. You will hear over and over again how TIME is of the essence. The earlier the better in both diagnosis and treatment. The value of research, networking and autism conferences cannot be understated.
2. Hook up with an Autism doctor –
No, there is not a title for doctors who specialize in autism (yet). However, there seems to be a list of reputable doctors who have educated themselves in the latest treatments for autism. They can begin by ordering the tests that will let you know where your child needs to begin in treatments. These doctors can be VERY expensive, but a good one is worth his weight in gold. Recommend you check the autism.com website for a list of DAN doctors in your area (Defeat Autism Now).
3. Buy the following books. . .
“Special Diets for Special Kids” by Lisa Lewis
“Unraveling the Mystery of Autism” by Karyn Seroussi
Both of these books are available on BN.com, Exceptional Resources, and at most book stores. The good and bad news is that these are best sellers. Both women run a website called Autism Network for Dietary Intervention (ANDI.com). They are mothers of autistic children. Karyn’s son is fully recovered and Lisa’s son is improved. They explain in detail the dietary and biomedical interventions that have helped their children.
4. Get educated on the gluten free/casein free diet –
THIS IS KEY!! When you begin the quest to help your child you will hear over and over about the GF/CF diet. At the autism conferences the diet is referenced by virtually every physician who speaks. The two books mentioned cover this diet in DETAIL.
You may hear naysayers who will tell you that the diet is too hard or that it has not been proven (doctors are the biggest naysayers). However, for the majority of parents who learn about and try the GF/CF diet in earnest MOST report vast improvements in their children. Improvements can range from behavioral to physical or both.
5. GET GOOD AT THE GF/CF DIET –
This area is added as an extra step because of how difficult it is to begin and maintain this diet. It is a lot of effort and money but the rewards are worth it. Lisa Lewis’ book devotes an entire chapter on how to start the diet and stay on it. It often takes a parent months before they consider their child 100 percent gluten free. Unfortunately, the 99 percent we often achieve is NOT gluten free enough. Hook up with a mentor or group of parents who are educated on the diet. The Autism ANDI website has a list of “educated and good at the diet” parents who are willing to help any other parent who wants to help their child.
6. Educate your spouse –
In some families the spouses become educated on autism and the GF/CF diet simultaneously. But in most families it is probably one spouse who must take the lead and then educate the other spouse. The diet and interventions will be so much harder without cohesive understanding and support. If they resist (as they often do) then bring them to an autism conference or education meeting where the GF/CF diet and interventions are mentioned at length.
7. Educate your family members and anyone who has contact with your child-
Yes, you will begin to look like a “ninny” to some of your family members until they realize how committed you are to helping your child recover from autism. They will especially look at you with different eyes once they start to see the improvements with your child. Do not take resistance from anyone. There may come a time when firm conversations are in order. Just remember that you are protecting your child from further damage to the nervous or immune system (evidence in the books mentioned).
8. Look into biomedical treatments –
Absolutely explore at length any treatments that may help your child in their recovery process. There is NO MAGIC bullet for all children. Your child will respond better to one treatment over another. There are books written on biomedical treatments available but I hesitate to include the information because the evidence changes so quickly. Again, do the research thoroughly and network with parents who have tried the treatments for their child. Autism.com offers articles on various treatments and the conferences always have a variety of doctors who speak on their research of a particular therapy.
9. SUPPLEMENT, SUPPLEMENT, SUPPLEMENT –
You will soon learn that the autistic child does not absorb or assimilate vitamins and minerals in the way a “typical” child does. Prior to running out and buying expensive or large dose of vitamins, consult with the DAN doctor or biomedical treatment specialist who can give you an idea of what your child needs. This is a category that is more challenging than initially imagined. First, once you are fully on the GF/CF diet your choices of vitamins are limited to gluten free. Then you want to find those that are kid-friendly and yet have the proper dosage of what your child needs. Kirkman Laboratories specializes in providing high dosage vitamins geared for children with autism. Their unflavored items seem to be less offensive in taste. There are other sources that your doctor may direct you too as well.
You will hear a lot about Kirkman from doctors and at the conferences. Again,do the research and network with parents who have supplements that work for their child.
10. Other therapies –
Along the education road you will run into parents who have paved the way of validating the other intervention therapies. You will learn about Applied Behavior Analysis or Discrete Trial Training interventions that are mostly conducted at your home . Some parents do ONLY behavioral interventions and have achieved success without biomedical interventions. However, the catalyst of both biomedical and behavioral therapies simultaneously applied is the route that seems to work for most children (sorry, no medical evidence to support this theory, just anecdotes).
In summary, you are about to begin an odyssey that will change your lives in ways you never dreamed. There will be days that you cry in frustration over the setbacks, and days when you dance for joy on the successes. In the beginning you WILL experience two steps forward, one step back. . .but it is still progress.
There is no absolute time line on when the good days will begin to outweigh the bad. The theory of many is that you need to give yourself anywhere from 3 months to a year to truly monitor the success of your efforts. That day may come with one huge milestone from your child or just the overall feeling that life has an element of “normal” in the day.
As hard as it is to fathom any element of normalcy reappearing in your life, it may happen for you and your family. The final thought would be to seize your experiences and pass them on to the next parent desperately seeking help for their child. It is the parent who will help the next parent (like the one who wrote this note).
Mary Romaniec
Parent Mentor
Dietary Intervention for Autism/ADD/ADHD
Mromaniec@aol.com
Footnote: My son was diagnosed with autism in January 2000. We spent an enormous amount of time and effort to find the clues that would lead us through this maze. We found the answers FINALLY. I wish we had this checklist to get us started. It is offered only as basic information and advice to get you started helping your child. It is not to be construed as medical fact in any way. Every child is different and becomes their own laboratory. YOU must decide what works for your child.
To focus you on the HOPE, we were told in August 2002 that our son would FULLY recover from autism. Today, he is indiscernible from children in his peer group. We still are continuing the battle until we are certain it is won. Now we are passing on the hope to the next parents in the same fight to recovery. The road is difficult but WORTH THE EFFORT.
Feel free to contact me should you have any questions along the way.