Our Family’s Journey

 The following is the story of our road to recovery with our son and the blessing that was given to us in having a child with autism.  I know that this is something that may be hard for you to realize now, as it was for me initially, but these children truly are blessings.  Additionally, while no one can guarantee complete recovery of your child, I can guarantee that if you fully invest your life in your son or daughter’s recovery, while keeping your family unit in tact, some individual measure of success is ensured!  That is where partnering with Butz & Associates comes in.  We will come alongside you and coach you to set yourself up for success.  We can ensure that you will gain knowledge faster to treat your son or daughter and get you along the road of recovery.  Time is working against you as the earlier the intervention, the better.  Don’t worry, our job is to work ourselves out of a job as you become comfortable moving forward in your family’s recovery.

Developmental concerns

Our son was born in November of 2000.  We were truly blessed to have him as we had been fighting my infertility for a couple of years and had finally gotten pregnant through donor artificial insemination.  Boy, did we have no clue as to what wild road lay ahead of us!  McGuire started out into this world as a colicky child (so we thought) who was never settled.  We could not love on him as he sought no comforting or settlement.  He would constantly arch his back, not respond to his name and had an empty look when he did look at you.  McGuire would repetitively play with shape sorters and had some arm flapping.  He would bang his head against the wall some; although not enough that we saw it as unnatural.

As he approached 1 year old and later, his condition didn’t get better.  He continued with self-stimulatory behavior and, if he was in an environment that was way too over stimulating, would either throw a tantrum and might bite his hand to try and settle down and control the craziness of his life.  McGuire didn’t develop any language and had no way to communicate with us.    He was lost in his own world and needed us to pull him out!

Now, please don’t think that we saw all of this behavior as a cause for concern.  It was not until the fall of 2002 when my wife Angie and I realized that there was something not right with the development of our McGuire.  Thank God that his daycare provider noticed and recommended that McGuire be tested for developmental delays.  We had had our concerns and began investigating what might be autism.

Angie and I both have biology undergraduate degrees and mine is concentrated in the ecology and environmental areas.  Therefore, we began researching through reputable sources.  I immediately knew to look at the DSM-IV (a tool used by psychologists to diagnose medical conditions) and could just go down the line checking off qualities of our beautiful son.  It is at this time that you began to feel loss and start a grieving process, do you not?  You may think that your son or daughter will never be the child that you thought he or she was going to be.  So you think!

We knew that the formal diagnosis was something that could come later, and something that each family has to decide as to whether they want to get.  However, through our research, we knew two things:

1.         We were going to treat our son naturally first and exhaust all natural and therapeutic options before using drugs.

2.         We knew that diet and scientifically proven therapy where the answers. 

Start the recovery!

Note:  The following all occurred at about the same time as we believe in a comprehensive and holistic approach to treatment.

Spiritual treatment

The first (and in our opinion the most important) area that we began to treat McGuire was spiritually.  Thankfully, we have a strong faith, one that has grown and matured even more through this wonderful journey.  Therefore, we told everyone in our family, church, small group, and accountability groups that we needed prayer for strength, guidance, endurance and for McGuire’s healing.  God can do anything and we knew that he could heal our son.  Please, if you are not involved in a faith community, find a church that speaks to you in a manner that you are comfortable with, and jump into the loving arms of the faith community.  If you need help, we can assist you here!

Therapeutic treatment

Next, we began investigating Applied Behavior Analysis (ABA) therapy and schools that provided such therapy.  ABA therapy is behavior modification therapy originally developed by B.F. Skinner.  It uses the natural environment to and things that “reward” and “reinforce” your child to promote positive behaviors, while extinguishing those that are negative.  If your child is noncommunicative or nonverbal, he or she will start off using sign language to remove the communication barrier and then move to identifying (tacting) objects and things and then on to requests (mands) for the same.  It is the only scientifically proven therapy for individuals with autism and other developmental delays.

In our situation, the only local school for us in Indianapolis , Indiana was full and so we decided to start a home therapy program while we looked at other schools across the nation and the possibility of relocating.  As a side bar, I had an executive coaching practice at the time and also was practicing some law.  Therefore, I was going to need to “commute” by plane each week.  Finally, we decided that we were to move to Chicago (so we thought) and help a well-qualified consultant there start the RACE school.  However, at the last moment, we were accepted into the local Indianapolis school.  Yet, that was not the end of our walk as that school immediately went into a business model change that was contrary to what we believed our son needed.  So, a group of parents, including my wife and me, left to start the Verbal Behavior Center for Autism (VBCA) in Fishers, Indiana (a suburb of Indianapolis ).  Additionally, Dr. Carl Sundberg, PhD, joined our Center as a location from which to run his practice.  Dr. Sundberg is one of the top 5 consultants, in my opinion, in the nation and oversees our kids’ programs, as well as starting in-home programs around the country.

In starting the VBCA, another couple and we spent many hours in forming the corporation, filing as a 501(c) (3) and setting up the business model and plan.  We also served as first and second presidents of the organization to get the VBCA to where it was ready to move to the next level where our present and capable president is taking it.  I will always remain on the Board of Directors of the VBCA to advise and see through its conduction of business.  This wonderful blessing of an endeavor, however, WOULD NOT EXIST without the parents of the children that attend the Center.  This is one other example of how important it is for parent to constantly be involved in their child’s therapy and program.

Dietary and supplement treatment

While investigating the therapy for McGuire, we also investigated diets and their affects on treating autistic children.  We didn’t know what, if any, allergies our son might have, but understood the gastrointestinal (GI) tract issues of these children.  Therefore, we knew that we needed to treat McGuire’s diet and choose the gluten-free casein-free diet.  We investigated everything that we could find on the diet.  We also decided to follow a biomedical approach supported by the Defeat Autism Now (DAN!) group as supplementing the diet.  Finally, we attended some support groups, and while they were good, we quickly moved past them as we knew the direction we were going.  We started the diet and traded in our pediatrician (who didn’t think that this could be autism), or a DAN! doctor that had a daughter on the spectrum.  As a side note, the one thing that our pediatrician did do was help us find out whether any of McGuire’s immunizations had thimerasol in them!  Ironic, isn’t it!

In starting the GFCF diet, there are many things to consider other than just what your son or daughter is eating.  You need to have your home’s water quality tested to find out if there are heavy metals or other dangerous substances in it, find out what allergies your child may have and look at what environmental insults might be harming your child like volatile organic compounds (VOCs) or other toxins.

I will not sugar coat it, the GFCF diet is a commitment! However, I promise you that IF you COMMIT to it, you have a high likelihood of seeing some improvement.  And, if you are one of those in the extremely small minority that don’t see much change, it is a better diet for all of us.  Also, please do not talk yourself out of this diet, because no matter what your child’s age is, it is NOT impossible.  While older children may be accustomed to certain food, there IS good tasting GFCF food out there.  We can direct you to these manufacturers and keep you committed to the diet and supplements.

Treating the Child’s Environment

The last area that we continue to treat is the environment and its toxins that our son is exposed to.  This area of treatment is gaining more and more notoriety as science continues to expand into the thousands of toxins that we come into contact with and their affects on our bodies.  Just as these children are so sensitive in the gastrointestinal and immunological areas, they are also typically sensitive to the toxins and chemicals surrounding them.  After we discovered McGuire’s situation, we had our water (city water) tested and found out, to our horror, that it had high levels of arsenic, among other things in it.  At the same time, we had had McGuire’s blood tested and found a correspondingly high amount of arsenic there, too.  Therefore, we knew that it was time to further investigate this area.  Upon further investigation and my scientific background with concentration in environmental work, I was continually horrified at what our children are exposed to.  Volatile organic compounds (VOCs) from carpet, insulation, wood paneling, cabinets and toxins like formaldehyde gas, toluene to mention a few are in most every house to some level.  And, while your levels in your house of each of these (and other) chemicals, along with the chemicals that you use on your lawn, may not seem like a lot, together they pose a huge attack on your child’s system.  This is a biological concept called bioaccumulation.  It states that while the small affects of certain chemicals, toxins, etc. might not individually be too dangerous, the combined effect of the many insults together magnifies the low levels of each individual afflicter.

Due to this, I investigated how we could minimize further exposure and started down another path investigating healthy home construction.  Here again, I was assisted not only by my environmental undergraduate studies, but my family’s over 30 years in the real estate business.  As I write this, we are almost half way completed with construction of our healthy home.  It is a home that has been constructed to maximize every dollar spent towards developing the safest indoor air quality for our family, while also being environmentally conscious for minimizing future toxins, too.  Butz & Associates can assist you in this area through its residential and commercial construction consulting arm, Eco Healthy Construction.

 Burden to Blessing (Burden>>>Blessing) – It’s a mental shift