We have had another whirlwind month filled with some unexpected events along with new information and progress.
After the first half day of school I was told that Cameron had difficulty transitioning in the classroom. The second day I was informed that Cameron had a "Fantastic day!" Each day that followed that week I was not informed of any problems in class. I processed each day with Cameron who seemed sadder and sadder as the week went by.
On Friday I asked him how school was and Cameron replied "I am sad." I asked him what was wrong and he replied "there are no friends. I can't find the guys (referring to his friends from his previous school)." This made us very sad. We knew that moving him back to his old school would not solve the issue. For one thing, most of his friends had moved on to other schools or classrooms as the district lines had been moved this year. The other reason was that in so many other ways our public school had not been meeting his educational needs. It seemed that we would need to discuss peer issues with his teacher and hope to resolve this issue. However, Friday afternoon Cameron came home with a note from the school director asking for us to meet with her and Cameron's teacher the following week. We were not sure what to expect from this meeting. We assumed it was for either: a general conversation to keep communication open between us and the school; a specific conversation about behavior or learning issues and processing possible solutions; to discuss the schools "brain train" which is a neuro-biofeedback program that we were trying to enroll Cameron into; or to discuss termination of enrollment (which we assumed wouldn't happen until after the second option for the meeting, especially given the school previous positive attitude).
I brought with me some articles from Montessori periodicals that discussed Autism in a Montessori settings. I wanted to share them with the director and teacher so that they could have more information as they set upon our journey with us. When we arrived we were informed that Cameron was having difficulty adjusting to the classroom and they thought it might be best to terminate his enrollment. In a bit of shock by this swift change in attitude from the director, I offered up the articles I brought, discussed simple behavior modification approaches and offered to pay for an additional teacher in the classroom to shadow Cameron. We also addressed our concerns with peer issues. It appeared that the teacher's frustrations were being felt by the other students. Instead of facilitating friendships her attitude towards Cam was encouraging the other students to shun him. We felt that all of the issues discussed in this meeting had simple enough solutions and that we had all raised our concerns early enough in the school year to be able to make a quick impact (school had only been in session for four full days at this point). The director agreed to discuss the materials and options laid out with Cameron's teacher and get back to us.
We received a call the following morning asking us to come into school and meet again with the director. When we arrived we were told that the school was choosing to terminate Cameron's enrollment but that his sister Megan could stay. We firmly explained that we were disappointed with this quick change in attitude and unwillingness for the school to work through issues. We told them that we would not be continuing Megan's enrollment for two very important reasons: 1) We were teaching our children that it is not acceptable to discriminate against people. We did not want to give the impression to Megan (or Cameron) that it was okay for the school to dismiss her brother so quickly because of his differences. 2) Megan should be allowed to be in an environment that is supportive to her as a person. Since being the sibling of a child with ASD is a large part of her life, we felt that she should be in a school that was supportive of her life and family and not display such a sharp and discriminatory attitude as they had.
When the children arrived to the van from their classrooms, I explained that we would not be returning to this school as the teachers and director had been naughty today and were not playing fair in Cam's classroom. I told them that we would begin looking for a new school this week and would find one that everybody would be happy with. Megan was very upset and cried. She had been very happy in her classroom but knew that Cam was not (her room was directly next door to his and she explained that she had heard Cam crying in class once). Cameron appeared relieved that we would not be returning and happy that he would be looking for a school with friends.
A New School
Thankfully, we found a wonderful school. A fellow ASD mommy suggested a school that she had chosen. It is a start up school (opened this year) and serves children from toddlers through 12th grade. The school has a low student-teacher ratio (6:1) with a classroom size capped at 12 students. The classrooms are all inclusive and the staff is very knowledgeable. The teaching approach is a mixture of Montessori materials, Christian materials & traditional classroom materials. No homework is given to the children ("students work hard at school all day and after school should be family time and time to just be a kid"). Both the PK and K classes are full days and Fridays are home days meant to be for incorporating lessons from the school week into family and community life. We were also pleasantly surprised that after the first student each additional sibling is given an 80% percent discount off of tuition (and that was not a typo...80% off!).
Both of the kids LOVE their new school. They both now have friends. Each of them are fond of their teachers. Their classrooms are across the hall from one another and they do some activities together (lunch, recess and motor room). They look forward to going to school each morning (Megan is actually a little sad on the weekends that she doesn't have school). Perhaps as a function of the sibling discount, Megan's preschool class appears to be mostly comprised of children with siblings on the spectrum. It is nice for her to have this aspect as I don't believe we would have been able to find this in any other local school. Cameron also has both neurotypical children and kids with ASD in his classroom. This is marvelous from him as he seems to be caught in two worlds today. He is less affected today than he was previously but he still has some symptoms remaining. Cameron has never been happier at school than he is now and he is learning so much and doing so well in his new setting.
Armed with New Information
We also had a follow up appointment with our DAN doctor, Dr Usman. This was an extremely important meeting as we were armed with a lot of new and valuable information this time. We had received the results from Cam's full genetics testing (to help us see which biological areas are weaker or more prone to damage genetically), Urinary Porphyrin Panel (to measure which heavy metals and how much the body has been burdened with), EEG results, lab results from six IV chelation sessions, and viral titers tests.
Dr Usman was able to piece each of these together to get a better picture of what is going on inside of Cameron's body and make necessary changes to his protocol. The gene testing offered information that was helpful in making supplement changes.
The porphyrin panel showed us that Cameron is still holding on to Mercury and Lead and that Mercury appears to be the dominant metal in his body (which is also the most difficult metal to pull out). The porphyrin panel along with the chelation labs let us know that the chelation methods we have been doing are indeed appropriate and that we will need to work a bit more aggressively to get to the mercury at this time.
The EEG showed that Cam's brain appears to be affected in the areas of speech, emotional processing and sensory integration but even those areas appeared less significantly impaired in relation to other children's with ASD. This may be an indication that as we've witnessed great improvements over the past year that perhaps his brain has been healing as well. The very good news was that he doesn't appear to be having any current or past seizure activity (33% of children with ASD develop a seizure disorder prior to adolescence).
The viral testing was a bit surprising to us. First, it was explained to us that HepB titers are supposed to be 1-6 to be considered immune. Between 6-12 is considered infected and 13-20 is considered an alarming number. Cam's HepB came back at 226!
Thankfully, the HepB vaccine is a dead virus. Cam does not have the disease. However, this was the first vaccine that he received when he was less than a week old (most children now receive this vaccine when they are less than 24 hours old and is given prior to discharge from the hospital) He was still jaundice and being treated with a bill light, so his liver was not fully functioning and would not have been able to process the toxins from the vaccine (of course none of this was explained to us at that time).
Cam's immune system went into overdrive when he was given this first injection and has never recovered. His body has continued to search for this phantom HepB virus ever since receiving this first vaccine. As a result, his immune system has been needlessly preoccupied with searching for a virus that he does not have and unable to acknowledge or fight off other illnesses he contracted. This is the reason that Cam has had strep throat twice and yet has no antibodies for strep; his body never acknowledge and fought the infection instead he was treated with large amounts of antibiotics. This first injection sent our baby's body into a tailspin from which he has yet to recover. It is one of the main reasons that Cam was chronically ill for his first 4.5 years of life. It also hindered Cam's ability to process any of his other vaccines and develop the intended antibodies. Addressing this HepB issue is necessary and difficult. We are relying on Cam's DAN and homeopath to help turn his immune system around and bring his HepB titers down to normal.
Cams Rubella titer also came back alarmingly high. This is a frightening issue for us because the Rubella vaccine that Cam received in his MMR was a live virus. This means that he still is holding the virus somewhere in his body. We do not know which organ system is harboring the virus or if it is active or dormant in that system. We have decided to treat Cam both with homeopaths and an immune system targeting drug to address this.
We have attempted to have Cam's measles titers tested twice and twice the lab has sent back a report that they were unable to process this request for one reason or another (lab error). So we are having to have blood drawn for this test a third time. We feel that it is likely that these titers too will be high given Cam's other titer statuses and the fact that many children with ASD appear to have high measles titers and have had the measles disease found within their intestines when fully scoped.
Since returning home from Chicago, we have been slowly implementing the changes to Cameron's protocol as directed by his doctor. Each day since Cam has progressed. He continues to blossom and amaze us on a daily basis. His teachers and therapists are testing him again soon. We are hoping to see as much improvement on paper as we know we are witnessing in life. We only wish all parents who have had their children stolen into autism could have the opportunity to have them heal and be discovered again. At the same time we seem to be holding our breath as we watch him progress and pray that he does not again slip away from us. His status is still fragile and at times we fear that a wrench could be thrown into the engine and stall us again. So we continue to be grateful for the gains he is making and pray for this progress to continue. We sincerely thank all of you who are praying along with us for Cam and all of the affected children and their families.
This site was last updated 01/10/09