Autism-Changing Tomorrow

November 13, 2007 at 2:05 am 5 comments

Autism – Changing Tomorrow!  What does it take to change tomorrow for my child with autism?  Am I doing everything I can do to make tomorrow better for my child?  To bring health, healing, and restoration to him?  Do I have what it takes to help him to go down that path of healing and recovery?  It only takes me a few seconds to think about it, and I realize that I come up lacking.  I always seem to need more patience, more time, more money, more understanding, more energy.  But then I know that I have the greatest of all things and the things my son needs most:  love and hope! 

Love, of course, is the driving force behind all I do as a mom.  A love that goes beyond ability to describe.  Perhaps that love is even greater as a result of the challenge of dealing with autism.  Love comes easily to me as a parent.  I love my children so much I want the best…and even better for them.  And because of that love, I hang on to hope.          

Hope for Tomorrow

Hope – a feeling that what you want will happen.  What do I want to happen?  What do you want to happen?

Do you remember the feeling when you were told your child had an autism spectrum disorder?  I do.  It felt as if every moment I had had with my son went flashing before my eyes in a rush.  In an instant, I recalled all of my son’s strange behaviors (that I now know as autistic behaviors) that I tried to make sense of for two years.  I recalled the criticism I heard from others that I must be doing something wrong with my son because he was different from other children.  I began remembering all the different pieces to the puzzle, and suddenly, it was as if someone put the puzzle together. 

At that moment, I knew what I wanted:  for my son to be healed and completely recover from autism.  Now, please understand – I love, accept, and highly value my son with or without autism.  He is valuable and precious for who he is, just the way he is.  However, I knew that I could not take the position that I would merely manage or navigate my way around autism.  I hoped and believed for complete healing, complete recovery!  I had hope and I just knew there had to be something I could do today that would make tomorrow and the next day better for my son.     

In that instant, I couldn’t see the challenges in the journey to healing lying ahead for us.  I certainly could not anticipate that I would many times feel as if I had not one tiny bit of strength or determination left.  But, somehow during those trying and exhausting times, I have been able to hang on to hope.  At those times that have seem the most difficult, somewhere deep, deep down inside of me is hope for my son – that things can and will be better for him. 

The Search That Led to Answers

Although I recognized the importance of traditional therapies (Applied Behavioral Analysis, Occupational Therapy, Sensory Integration Therapy, Floor time, etc.), I knew that these therapies would only manage autistic behavior.  I was looking to reverse the causes of autism.  I then decided to break it down to individual physical problems my son was experiencing – major sleep disturbances, painful gastrointestinal problems (including failure to digest foods and severe constipation), painful skin rashes and eczema, and hypersensitivity to certain foods.  I began researching and finding solutions to these problems first.  As I searched for answers, I learned about “biomedical treatments” for autism.  Basically, biomedical treatments target certain biochemical imbalances in the body to help it function better. 

Some of the first treatments we tried first and found helpful were probiotics, herbal laxatives, melatonin, amino acids, magnesium, digestive enzymes, vitamins and avoidance of problem foods.  One week after beginning a gluten-free, casein-free diet, my son’s skin rashes went away.  Two weeks after stopping apple juice, his eczema disappeared. Within three weeks of beginning digestive enzymes, my son’s behavior changed, and not just a little bit – it changed dramatically!  He stopped the majority of his “stimming,” he threw fewer tantrums, he stopped making mean faces at people, he stopped crying when he saw relatives, he stopped violently shaking his head back and forth when he was upset.  We noticed his speech improved – he no longer had problems with the use of pronouns, and his pronunciation of words improved.  We also saw physical improvement – he stopped constantly complaining of stomachaches, and he began actually digesting his food.  After a few weeks on vitamins, my son’s hands and feet were no longer ice-cold, and his face was no longer pale. 

I was so excited to see such drastic improvement in my son in such a short time!  I knew we had only just begun, though.  Because each child is unique and there is no “one size fits all” approach with biomedical treatments, I knew it would take time, patience, and a willingness to try various approaches until we found just the right combination of treatments for my son.  I also discovered that we had to reevaluate his treatment every few months to determine what was working and to target any new issues or changes that had taken place.

I was encouraged, and the progress my son made increased my hope!  I saw major improvements, so I knew healing was a possibility!  I made it my mission to read as much as I possibly could about biomedical treatments.  Thankfully, I found fantastic information published by the Autism Research Institute and the Defeat Autism Now! (DAN!) Project.  Their website is www.autism.com, and it contains more information on biomedical treatments for autism than I have seen anywhere else.  The DAN! Project has also published an amazing book called Autism: Effective Biomedical Treatments, by Jon Pangborn, Ph.D. and Sidney M. Baker, M.D.  It is quite comprehensive and detailed in its explanation of biochemical pathways.  Although I highly recommend the DAN! book, I suggest reading other books on biomedical treatments first, especially if this area is new to you.  One of my favorite books on biomedical treatments is Children with Starving Brains, by Jaquelyn McCandless, M.D.   

Challenges Along the Way

One challenge we faced was finding a doctor with expertise in the biomedical treatment of autism.  The DAN! project of the Autism Research Institute holds conferences every year and physicians (and parents!) can attend the conferences and learn how to use biomedical treatments with autism.  I knew we needed a physician who had attended the conferences and had been trained in biomedical treatments.  We traveled almost four hours to see this doctor.  The experience was incredible!  I felt we finally had a medical professional who truly understood and offered solutions to the problems my son was experiencing.  We had already begun the gluten-free/casein-free diet and some nutritional supplementation prior to meeting with the doctor, so we were able to focus on fine-tuning the precise nutrients my son needed.  We saw more progress from the treatment protocol given to us by the doctor, and again, my hope increased! 

My son also experienced major regressions along the way, as can sometimes happen when you are working to eliminate yeasts and harmful bacteria from the digestive tract.  On the worst days, I was so thankful when it was finally my son’s bedtime because I was physically and emotionally drained from dealing with a day full of tantrums.  I am thankful to say that the regressions do not last forever! 

Perhaps one of the biggest challenges we experienced was the lack of understanding and support from family members.  Some criticized and even got angry over our use of vitamins, nutritional supplements, and the gluten-free/casein-free diet.  Some even tried to give our son foods he was not supposed to have.  But the hardest thing from family was dealing with a lack of understanding of our son’s behavior.  Thankfully, as our son has progressed in his healing, the misunderstood behavior has gone away, but some relationships were hurt by the criticism.   

Today is the Better Tomorrow I Hoped For!

I feel like shouting it with joy!  Today truly is the better tomorrow I hoped for!  As I look back now over the past two years, I am so excited by the progress I have seen in my son!  The healing that I hoped for when we first began this journey has begun.  I believe my son is well down the road to recovery, and I continue to hope and believe that he will one day fully recover from autism. 

One thing I have truly come to know through this journey – I must continue to have hope!  I must continue to believe that the complete healing and recovery that I so desperately want will happen. 

Help Along the Way

Another thing I have discovered that makes a significant difference in this journey is support.  I wish every family struggling with autism would have the emotional and physical support they need.  I encourage extended family to show understanding and compassion to the child and to always remember what a blessing the child is!  I encourage family and friends to lend a hand to parents of children with autism – babysitting, help with dishes, laundry, errands.  The extra time and energy spent in dealing with special diets, treatments, and sometimes difficult behavior can be exhausting!  When family and friends lend a hand, it provides much-needed relief! 

I encourage parents of children with autism to share their hope and support with each other.  Come join us here as we encourage each other!  One thing I want to mention – I know some try to debate issues regarding biomedical treatments such as mercury and vaccines, and many attempt to disparage treatments like chelation, special diets, or anti-yeast therapies.  I know there are forums where you may express your views, but please, not here.  This will be a forum that is friendly and open to talking about using biomedical treatments.  If you are treating with special diets – come find support here!  If you are taking steps to eliminate toxins – come find support here!  If you are pursuing or want to pursue other biomedical treatments for autism – come find support here, and join us in the journey.  Let’s offer hope and support along the way! 

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5 Comments Add your own

  • 1. R Frazir  |  November 14, 2007 at 3:33 pm

    Curious if anyone has thoughts on what enzymes help with? How do I know if they are working?

    Reply
  • 2. anne101  |  November 14, 2007 at 10:56 am

    Do I really need to change my child’s diet? The gluten-free/casein-free diet seems so difficult! My son loves milk (and drinks a lot of it). Also, he is very, very picky and will only eat pizza, pasta, and cheese.

    Reply
  • 3. acttoday  |  November 14, 2007 at 8:22 pm

    Many parents find that their children improve in lots of ways through the gluten-free/casein-free (GF/CF) diet – for example: improvements in behavior, expressive and receptive language, less stimming, fewer tantrums, and fewer digestive complaints. In fact, according to information from the Autism Research Institute, parents report that the GF/CF diet is one of the most helpful therapies – over 65 percent of children showed improvement on the diet!
    The problem with gluten and casein is that many autistic children do not break down these proteins and the incompletely-broken down proteins (peptide chains) cause neurological disturbances and autoimmune responses.
    Casein is found in milk products and gluten is found in many grains such as wheat, oats, barley, rye, and others.
    The best way to determine if a GF/CF diet will benefit your child is to try it for a minimum of three months, preferably six months. It is probably best to start slowly. You may want to eliminate casein first, and then gluten. Your child will probably protest, especially if these are his favorite foods. (Many children with gluten and casein intolerance do crave milk and gluten-containing grains.) Be prepared with gluten-free and casein-free alternatives. Many grocery stores now have sections devoted to gluten-free/casein-free products. You can order products online too. Also, try experimenting with traditional recipes, substituting the wheat flour with buckwheat flour, rice flour, and tapioca flour. The butter can be replaced with hardened coconut oil.
    Since there are many hidden sources of gluten and casein, you will have to become an expert label reader, and I suggest doing some reading about GF/CF diets. Some helpful resources are “Special Diets for Special Kids” by Lisa Lewis and “The Cheerful Chemist’s No Casein, No Gluten, Sugar Optional Cookbook” by Sally Ramsey.

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  • 5. Rosie  |  December 4, 2007 at 10:33 am

    A note to Anne’s comment regarding the GFCF diet. When my daughter in law and I initiated the diet, we went cold turkey-all at once, we noticed an immediate change in my grandson, within 2 days! His fog seemed to clear and he was more in the moment and interactive with us.
    Of course, it takes more planning as to what we feed him, but it is well worth the effort! I buy boned, skinned chicken breasts, slice them up for chicken fingers and have tater tots with them. We are very fortunate that Johnny will eat anything, so we do have an advantage there.
    Go on line to KirkmanLabs.com… we buy a product called Dari Free to replace the milk, you can also use Rice Milk which even the Wal Mart supper centers carry. Rice Chex, rice pasta, are all readily available. I am experimenting with making non dairy yogurt for him. Soy works well, also Almond milk. So don’t be overwhelmed by the diet, you just have to rethink everything that goes in his mouth. Please feel free to email me if you need help with planning his meals.

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Autism-Changing Tomorrow (ACT) blog is maintained to provide a place where ideas and thoughts relating to autism and treatments for autism may be exchanged. The information on Autism-Changing Tomorrow is of a general nature and is provided with the understanding that ACT or any individuals or entities associated with ACT are not engaged in rendering medical advice or recommendations. Any information in the postings, messages, articles, comments, and publications in or on the ACT blog must not be considered medical advice or recommendations and such information should not be considered a substitute for consultation with a board certified physician to address individual medical needs.

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