About Me

Finding My Way Home...
THE INFORMATION ON THIS SITE IS NOT INTENDED FOR MEDICAL TREATMENT. IT IS SIMPLY A STORY OF REGRESSION AND ON THE WAY TO RECOVERY FROM AUTISM IN A MOTHER’S POINT OF VIEW. PLEASE CONTACT YOUR CHILD’S DOCTOR OR SEE A DAN! DOCTOR IF YOUR REGULAR PHYSICIAN IS NOT FAMILIAR WITH THE TREATMENT PLAN LISTED IN THIS STORY:

A new baby boy....

Sasha was born November 21, 2002; he was a beautiful healthy baby. He met physical milestones way ahead of schedule as he rolled over at 4 weeks, sat up by himself at 4 months, crawled at 5 months, furniture walked at 6 months, took his first step by himself at 7 months, and walked in shoes at 8 months old.

From the time he was born until present he has had many gastrointestinal problems, ear infections, and respiratory infections. I would take Sasha to the mall at least once a week to have his photo made. 1 week after his 9 month vaccination shots I swore I would never take him to have his picture made again and I have yet to take him. The second we entered the mall he started freaking out! He started screaming, slapping himself, swaying back and forth, and hitting his face. Everything went down hill from there.

Desperate for help.....

From that point we enrolled him into Early Intervention which is a state funded program for children with delays. His Occupational Therapist, Kelly Stringfellow, worked with Sasha once a week on his fine motor skills as well as helping with some SLP services to help with language. He showed some improvement as he trusted her and became patient with her. His attention span improved but it was not at the level everyone, including Kelly wanted it to be. He had speech and occupational therapy for 8 months and then he was evaluated by Glenwood who confirmed that he was Autistic. The only advice that we were given after the diagnosis was to continue the therapy and work with him as much as possible. We had not seen as much improvement with therapy as we hoped.

We did speech and OT with Sasha for one year with literally no results except she was able to sit in the floor with Kelly a little longer than before and his attention was more focused but not much. We resorted to trying an alternative treatment using diet and supplements to balance. I organized a seminar in my community called the ABC’s of Autism to help parents understand what Autism is and how to get help. Also I wanted people to be aware that if a child has a melt down in a public area don’t stare as if the parent’s are bad for not reprimanding them. Children can often behave in an unpredictable manner, because they find it hard to cope with many everyday situations and are doing the best they can. I have been a victim to the stare and whispers many many times which made me feel like a bad parent.

Biomedical Intervention Treatments .....
On January 15, 2005 we started Sasha on the Gluten Free/Casein Free diet along with many supplements and vitamins. We found out that Sasha had 13 food allergies and his diet was going to be a struggle as he was already limited to what he would eat.

His food allergies are Gluten, Casein, alfalfa, cranberries, walnuts, mustard, eggs, oats, wheat, cheese, milk, bakers yeast, and brewers yeast.

We had an Organic Acid Test done that showed Sasha had a metabolic disorder. His system was very off balance but by taking the many supplements needed we would be able to help him. In the beginning we started Sasha on Cod Liver Oil, Pro-EFA, Therbiotic-Detox (probiotics), calcium, zinc, and a good multi vitamin called Spectrum Complete. (Sasha does not swallow capsules.... we have to open them up and put them into water with Stevia for sweetner). Over time we added in more supplements that were vital to helping Sasha recover from the medical mess that he was. It is important to not give the Calcium and Zinc together as they may deplete each other fighting for absorption.

Before starting the biomedical intervention treatment Sasha did so many things that indicated that he had major gastrointestinal problems that I had no clue existed. Several weeks after starting the probiotic-detox he started to detox yeast in his stool. The yeast looked like small parasite eggs but the stool analysis confirmed that it was Candida Tropicalis; a form of yeast. Sasha had a massive yeast overgrowth in his intestines that caused tiny holes in them and undigested food proteins leaked throughout his little body making him toxic. At the time we started the Probiotic-Detox we did not realize that we were only treating the yeast and that if we did not treat the bacteria that causes the yeast then he will just get worse and he did. We then started the Grapefruit Seed Extract that treats the yeast and bacteria and he is doing much better. It is also important to not give the Probiotic-Detox and Grapefruit Seed Extract together because the Grapefruit Seed Extract will eat up all the good and bad bacteria. Probiotic is a good bacteria that helps get rid of the "gut bug". Give them about 3 hours from each other.

Signs that Sasha showed of a yeast infection in his intestines were:
Toe walking (tip toed all the time everwhere he went)
Severe constipation AND diarrhea (rotated between being constipated and having diarrhea)
Laughing in the middle of the night for no reason (awake and asleep)
Waking up in the middle of the night screaming in pain but could not express what was hurting
Waking up at 2am and staying awake until 7-8am

Sasha detoxed yeast for nearly 2 weeks. After his last last yeast diaper the very next morning he seemed to be a new child. He stopped stimming, stopped lining up toys, crayons, and blocks and hasn’t done it since. He started making perfect eye contact, giving hugs (especially to me!), playing with toys, rolling and throwing balls, jumping, playing with bubbles, using pictures to communicate, using some sign language to communicate, pointing, no more head banging, less intense tantrums, vocalizing sounds, and basically started to act like a normal child. We are certain that the GF/CF diet along with all of the vitamins, supplements, and enzymes and much intense therapy is the reason that he is now doing so well. We still have a VERY LONG road ahead of us because we do see regression in stimming with certain foods that he eats that has yeast in it and also with sugars.

It makes sense that if a child has severe gut issues and is in pain then the child will not likely pay attention to any type of instruction or therapy. We wasted 11 months on therapy that did not help where we could have helped him clean up his gastrointestional issues and get the toxins out of his body so that he will be able to learn and pay attention. His attention span went from 15 seconds (before the detox) to 30 minutes (after detox) in a very short amount of time. Therapy is very important but what good will it do if you can’t get through to the child?

Entering the School System:

In November 2005 Sasha turned 3 years old. He was able to enter into our local school system which turned into a nightmare. Our school system did not have a preschool special ed class set up for high functioning autistic children, they didn’t have a preschool classroom set up at all. A year before Sasha turned 3 the school did have a small preschool class set up that was known as Beacon. Severe mentally ill children were in that classroom and it would never have been appropriate for my son to enter the room to begin with, sadly the building burned down and those children had no place to go. With all the gains that Sasha had made there was no place for him to go within our county. He was placed in a Middle School with no teacher, kids in the class up to age 13, and no structure.

Sasha had mild autistic behaviors that I had been trying to get a hold on before entering the school system. Sasha would throw tantrums when he was not able to communicate what he needed and he still often wanted to be alone in his room at times. Once he was trying to shut his bedroom door and did not realize that his brother’s arm was in the way. He kept opening and shutting the door on his brother’s arm. He had great eye contact at the time when you were on his level but looking down at a cause and effect type situation he wasn’t good at doing. His private therapist that works with him at home noticed a dramatic change with the way he was responding to her as well as the behaviors that were developed making him “set off” in a rage at any given moment.

After entering the classroom things began to slowly go downhill. Sasha’s behavior went from tantrums that were pretty intense to being violent. Prior to being in the class he had great eye contact, responded to interventions well, had great attention with his therapists, had behaviors due to lack of communication and sensory, and did not rage into violent behaviors hurting himself or others on purpose. When he was younger many of the autistic symptoms did go away after treating the medical imbalances.

Weeks into him being in the school setting Sasha’s attention started to diminish. He started having outburst of rage and anger often resulting in him attacking me or his brother. He started lashing out at kids in the church nursery, hitting, biting, kicking and running into the walls. It seemed like he was having anxiety attacks and couldn’t control them.

After a few months of him being in the class and others recognizing the regression I had a professional expert observe the classroom. Here is her report:

Classroom Observation

Sasha *

DOB: 11/21/2002

DOO: February 2006

The following is an observation of Sasha * at ****** School. This observation was completed at the request of Sasha’s mother. Mrs. *** has expressed concerns that Sasha is not making the necessary progress as well as concerns with the classroom environment.

There are two classrooms adjacent to one another, one lead teacher, not certified in Early Childhood Special Education, two teacher assistants and 16 children ranging in age from preschool- junior high school. The lead teacher splits her time between the junior high self-contained class and the preschool class. When she is not in the preschool class, the two teacher assistants are directing the class. This occurred approximately 50% of the time.

9:40- The children are sitting for circle-time. They sing If You’re Happy and You know It and then a farm song. Sasha plays with a Mr. Crab toy while the recorder plays. The teacher assistants take the toy away and encourage Sasha to make a farm animal noise. He did not comply. The children begin the throw the animal cards and the teacher assistants end circle.

9:52- The children are asked to sit at the tables for Center Time. Sasha sits at table and is given colored spools to match. One teacher assistant works with a group of boys at one table while the other teacher assistant works between two tables (one is Sasha’s table). Sasha begins by matching the colors and then he chooses to sort the colors. When I prompt him, he names the colors.

10:20- Center Time continues…the children are becoming restless. They begin the wrestle on the floor and chase each other. Sasha plays chase with Noah. He watches him, makes eye contact, follows him and smiles.

10:25 The Lead Teacher comes into the room. She redirects the class. She gives Sasha the colored spools to match. (I don’t think she knew that is what he has already done.) Center Time continues

One of the assistants is also the school nurse. She is occasionally occupied with older students coming in for health related issues and “snacks”.

As I get ready to leave the class, I notice that the oldest student, who appears to be between the ages of 11-13 years old, walks out of the room without supervision. I notify the assistant and then run after the student. He followed a class down the hall and into the lunchroom.

11:00- Lunch

Classroom Suggestions:

Communication Notebook- Have a notebook that can go back and forth between school and home. In this notebook, Mrs. Worley would write down any comments specific to Sasha’s morning that might affect his day, the SLP, OT and Teacher would write down what they worked on with Sasha. If any of the professionals or parents have questions they could be placed in the notebook as well. This notebook allows not only for follow-up at home but also on-going communication. An example of a page in this book is included.
Create a section in the communication notebook for Sasha’s progress reports on his IEP goals. These reports need to go home at least as often as the students in regular education get report cards.
Use a visual schedule in the classroom. This schedule allows not only the teachers but students to transition from one activity to another successfully.
Evaluate the effectiveness of Center Time. This appears to be an hour long period. Look at creating developmentally appropriate centers in the class and having children spend 20-30 minutes per center. Examples of centers include, home living, reading, manipulative, art, fine motor….This time may also be used to insure that each child has time in which he/she is working on individualized goals and benchmarks and data could be taken.
Mrs. **** is not certain when Sasha gets speech and what is worked on while in speech. This needs to be clarified. Sasha is beginning to talk but on this day he was only using initial consonant sounds. In consulting with the Speech Therapist at Mitchell’s Place it is recommended that he could benefit from the Kaufman Apraxia Program.
I understand that this placement was supposed to be temporary until the new building could be finished. I do however believe that in order for Sasha to make the needed progress, there must be some immediate changes within his classroom or placement.

This exact observation was talked about during my son’s IEP meeting on that same day. No changes were made in the classroom. This classroom did not have a teacher supervising the room and children. The only special ed teacher in the school spent her time next door in another special ed class with kids up to age 21. This teacher was not Early Childhood Preschool Special Education certified and rarely came to my sons classroom for any other reason than to tell the parents good morning. My sons classroom had a school nurse as a paraprofessional and also had another paraprofessional that had worked with various aged special needs children for many years. My son’s first IEP did not have benchmarks or goals in it either. It was completely inappropriate and he started to regress for the lack of supervision, control, seeing the more severe kids functioning (which he started to mimic), no structure, no curriculum, no nothing.

The point of sharing Sasha’s story is to encourage parents to find out if there is a medical issue that can be causing your child to have more severe autism symptoms. Not all children respond to therapies and treatments as well as Sasha has but if it can help in any way then it is worth getting testing done to start the steps to being more healthy. It is important to continue the educational side of autism and fight for appropriate services when you child is placed in a completely inappropriate setting. You are your child’s best advocate and it is up to the parents to fight for the rights of their special needs children.

There is not cure for Autism but you can help your child live a happy healthy life with the possibility of growing up to attend college, get married, have children, and be independent with a career.

The Doctor’s who treat Sasha.....

Sasha’s pediatrician is Dr. Edward Lose. He is also a genetics doctor so he made a lot of adjustments when we asked him to help us with the DAN! protocol. He decided to read the McCandless, Karyn Seroussi, and Stephanie Cave books and became familiar with the protocol and what we were trying to accomplish. He helps us out to keep us from traveling to Cleveland, TN on a regular basis. On June 7th, 2005 we visited Dr. Matthew Remick Psy D in Birmingham, AL who is a specialist in Autism. He does not follow the DAN! protocol but was interested in hearing how it has helped Sasha. He gave us many ideas on new therapies we have never tried and agreed to help us when the school system wrote Sasha’s IEP. On June 16, 2005 we drove 4 hours to Cleveland, TN to see Dr. David Adams MD who is a DAN! doctor. He has a son with Autism and is using the same treatment with him as he is Sasha. Dr. Adams ordered a panel of blood work to be done: CBC, CMP, TSH, Zinc, Calcium, and Ammonia which all came back at normal levels.

Due to elevated heavy metals testing Sasha qualified for chelation. We are using TD-DMSA 3 days on/4 days off every 8 hours protocol.

We have also added the SCD diet in addition to the GFCF diet due to Diflucan not helping keep the yeast issue under control. We have eliminated all potato and rice products (and flours) and also took away all juices. He now only drinks water with stevia. You can learn more about adding the SCD diet at www.pecanbread.com
GFCF diet is very helpful but in many cases the child has such a severe yeast overgrowth that you have to eliminate several GFCF allowed items such as Potato flour which contains 136 grams of carbs per 1/4 cup. Carb’s feed yeast just like sugars do.

Sasha may never be what many people call "normal" but he has a very good chance of overcoming this and I have faith that the DAN! Protocol along with therapy and many other resources we may run into will heal my child. It is scary and amazing how something as simple as a vaccination that the FDA mandiates our children have before they enter school could possibly be the missing puzzle to Autism. We do not have any plans on giving our youngest son, Fallon, vaccinated. He has hit milestones of a 15 month old and is only 10 months old. Angie Chatwood from Wellness Pharmacy got us started on the DAN! protocol 6 months before we found a DAN! doctor to be involved. She has so much knowledge and knows exactly what these children need and will give advice to parents who are willing to listen or try the treatment program.

Thank you.....

Thank you to Dr. Adams for learning to DAN! protocol and helping parents help their children, to Dr. Remick for enforcing behavioral therapy, and to Dr. Lose for taking the time to help Sasha even though you are a Genetics doctor and the DAN! protocol is not your mainstream medical practice. Thank you to Angie Chatwood and Wellness Pharmacy for going out of your way to make sure that Sasha progresses and will hopefully fully recover from Autism. Thank you to my grandparents, Darlene and Roy, for being at Sasha’s therapy sessions each Thursday when I had to work, for creating GF/CF recepies and making him food that he will actually eat. and also Pop attending the 2005 Walk for Autism and walking 2 miles in honor of Sasha even though you have lung, liver, kidney, lymph node, bone, and brain cancer. "Hot Rod" and "Fal my Pal" will be so grateful and appreciative of you when they get older and see the video tapes of all the fun things you did together. Thanks to mom (Sasha’s Nanny) for supporting us through this and helping whenever possible. Thanks to my sister for buying Sasha groceries when things just got too expensive and to everyone else who plays a role in his life. We love you!