Since birth, my son was different than my other kids. In the hospital his sensitive skin flared and burned at the touch of any material. I was sent home with a beautiful baby that within a couple of months had lesions all over his skin that no doctor could explain more than “eczema” and could not control. He nursed , we used no soaps, cleaned the air filters, gave him steroids and kept the various creams on but after 13 doctors recommendations, we took him to a children’s hospital. The pediatric dermatologists took photos of him as they had never seen such extreme eczema and treated him as a burn victim. After a week , we came home and it was back.
This was the introduction to how my life would be raising Ridge.
One night I stayed up searching on the internet and found a slide show intended for doctors. When I saw a child that had similar skin, I was shocked to read that he had died of a staph infection soon after. The training slide was to promote a drug that had been used to prevent organ rejection. This drug was being used topically with great success as an autoimmune suppressor. I went through doctors, pharmacists and finally found a trial study in another state to get the medicine. Sadly, Ridge was too young for the trial. I shamelessly used our daughter who had mild eczema to get the medicine. I did contact a very trusted pediatrician and he could see no harm in it and so out of desperation, I broke lots of rules and the medicine was successful and he had almost normal skin within two weeks. All this happened within the first year of Ridge’s entrance into this world.
Once he was stable, I wanted to get back to work. The demands of a chronically sick baby had left me exhausted and I needed the social connections and ease of a controlled environment. I got a job teaching but the difficulty of managing three children was more than I had expected. Two kids went to a day carer that added an hour of travel time before my job and they hated it. My oldest son was able to come with me as he attended the same school but I would find myself so nervous that I had to stop shaking before walking in my classroom and pretending everything was great.
As time went on I felt more and more chaos at home and more stability at work. I started to believe that I was better at being a teacher than a mother. Ridge seemed to like being alone, he didn’t laugh easily, he fussed and had tantrums and hit people. I thought his hearing may have been damaged because he didn’t talk much. The tests showed he was normal.
By the time he started kindergarten, his testing showed “at risk”in letter recognition and sounds. I had read to him since birth, worked on letters and sounds and given him as many environmentally rich experiences as possible. We talked about everything, we played at the beach, with animals, we had no TV , and yet he was not learning like the other children.
This continued and he only really wanted to go to recess. School was not fun and he met with frustration after frustration in 1st grade. The teacher could not understand how a child with such advanced language could not even write his name. I requested testing and suddenly the teacher started giving him “Fs” to cover herself I guess. I pulled him out and homeschooled for the next year.
Being a teacher with specialized training in dyslexia, I brought out the best I had -Orton Gillingham materials. I bought a program called Fast Forword that was guaranteed to improve his audio processing. I took him to a psychologist and he diagnosed Ridge as ADHD and we started medicines. The first week was amazing as he became more verbal, was able to write better and seemed more tuned in. It didn’t last however.
My husband was deployed to the middle east, my dad was dying of cancer and so I decided to homeschool my daughter too so that we could all travel to stay with my parents three days per week. My oldest son was in high school by then and had to fend for himself. After a couple of months , my dad passed away and I collapsed. I enrolled the kids in another school and things seemed to be coming together. The counselor suggested we put Ridge back in first grade since his reading level was still so low and he had a compassionate teacher that worked with him. They school had their own Fast Forword program and used it as a weekly intervention with Ridge.
By the next year, I had rebounded and decided that it was time to take on a job again. (We were having terrible financial trouble as the real estate market had tanked and we had several investments that turned into catastrophies) I got hired to teach reading at the high school to kids that needed remediation and Ridge was right across the road at the new elementary school with his sister.
No formal testing had yet been done by the school. Here was a student that the mother requested testing since kindergarten, he had terrible grades, a retention and several interventions. They call it “RTI” and it is designed to use as a structure of help before just throwing a child into “special ed”. In this case , it was used as a hurdle to keep my son from getting the services he needed. I finally found a private developmental pediatrician and her testing showed major dyslexia. She also diagnosed him with depression, anxiety and Asperger’s Syndrome. I was sickened as well as relieved with this labelling. I have never given much stock in testing and the labels we put on kids and in this case I was embarrassed that it was my child. I bought several books about Aspergers and I was shocked to see in print many of the exact characteristics of Ridge. I felt lost because I had worked with autistic children but they were nonverbal. I had never even heard of Aspergers and yet suddenly it all made sense.
At home , Ridge frequently had melt downs if I asked him to do things he didn’t want to do. We had some animals and pastures so as long as he was exploring and tearing something up outside he was ok. Taking him grocery shopping or out to eat was a battle and he would often attack his older brother. For some reason, he found an axe in the barn and chopped up his brother’s bedroom furniture. I had to watch out because he was drawn to weapons and seemed on a road of destruction. I smelled fires in our trash cans several times.
I went to the school with the testing results, eager to get the services he needed started. Speech, OT, and reading resources were at least a start. I was told that the school did not have to accept the testing and the school refused to do anything. It was war.
Ridge’s grades were plummeting with a teacher that could not have been much worse. 2nd grade should be fun but it was a nightmare for Ridge. The teacher was inconsistent. She would not get the kids ready in time to go to recess. Her english was poor. She did not have a good discipline plan in place. Ridge told me how it was and I dismissed it but then I actually saw how the teacher acted one morning of a field trip. Several boys ran around screaming in one another’s ears, there was no assignment whatsoever and the teacher sat at her desk doing something on her computer for over 45 minutes. I was livid! The field trip was a joke as she divided up kids with parents giving me Ridge and a little boy that had serious behavior problems. She gave out her telephone number and took off at Animal Kingdom. By noon, I called her and told that we had to leave so she needed to get the other student. We waited and she showed up with NO kids but her adult friend. We blew out of there and I promised Ridge I would never doubt him again.
My students at the high school were a mix of super kids to trouble like I had never known. I surmised that all the years of pushing problems through creates monsters at the end of the line. It was sad that those kids had not gotten the services they should have had and the attitude of nurturing and care was absent from the high school staff. It was a painful learning experience but one that prepared me to not accept incompetence for my son.
It all escalated one morning when Ridge’s behavior changed his world. He was at the early morning child care program at the school (run by an inexperienced lady with no structure in place at all) sitting on the cafeteria bench trading legos with his friend as he had done all year. Something happened in the deal that went bad and he had a true melt down. He attacked the friend and had him in a choke hold. The lady in charge started screaming and he kicked her and ran away. The assistant principal was just pulling into the parking lot and gave chase. He slammed Ridge to the ground and held him there. Quite a crowd gathered to view the spectacle and when released he tried to run again and was once again physically restrained and drug to the office.I was called to come get the monster that was now expelled from school and kicked out of the early morning care program. The behaviors from home had generalized to the school and suddenly they saw Ridge differently. Sadly they wanted to punish him rather than help him and I could tell that they believed I was the real issue.
I was furious! As I gathered up the prisoner and drove home, Ridge said that he wanted to kill himself and that was the only thing he could think of to do. He said that he would never have chosen to come into this world this way. He couldn’t read, he had constant allergies, and he hated everything. There was nothing left for him.
He started to chew his fingernails, his toenails and then the dog’s nails.
Luckily, I had a niece that suggested I call an ABA therapist. Applied Behavior Analysis is the scientific method of behavioral change and is the only research proven program for autistic people to make successful changes.
I was expecting more of the same ridiculousness we had experienced with his “teachers” but things when Patrice Hay walked in the door.