Happy Mother's Day to all of the Moms out there.
Sunday is the first Mother's Day without my Mom, Joan who passed away in January from Pancreatic Cancer. In the last two weeks I found out one of the best friend's Dad has lung cancer and my ex-mother-in-law is getting checked for breast cancer. I also have a college friend who is currently going through chemo.
When you have a child with autism you think the whole word revolves around autism. But, it doesn't. You think that autism is the biggest problem in the world. But, it's not. You think there is "nothing worse" than autism. But that's not true. When you find out your child has autism you think there is nothing you can do. But you are wrong.
There are so many mothers out there who amaze me. My son would not be where he is today without the help of many people. From Jo Pike in South Carolina who basically introduced biomedical treatments to me, to Mary from CA who helped me start the diet, to Julia Berle, also from CA, who inspired me to start chelation..... These Moms I will never forget.
But, there are other "mothers" who have helped my son, like his past teachers and therapists. One in particular is Jackie Rosenfeld. She was Michael's teacher from Kindergarden to 2nd grade (three years). When I first talked to Jackie on the phone I was nervous that she was very strict with ABA and wouldn't be flexible enough for Michael. Then a week later when I met her at the school I knew instantly that this woman knew what she was doing.
At 5 years old Michael entered the school district with very little skills. He wasn't potty trained. Could barely do ABA. Said about 30 words. Didn't want to play with other children. He would spin cars all day long. At one point he got so obsessed with tracks we had to take the cars and trains away- so then he started visually stimming off lines. The lines on his pants, the lines on his shoes. Holy Cow- we couldn't stop him.
I had a conversation with Jackie that first year. She said "one day we're going to lose him". What she meant was he was going to one day move out of the autism program and be mainstreamed. I laughed "no way". Honestly, I didn't believe a word she said. Jackie responded "trust me- one day he'll be gone and we'll miss him".
I didn't spend a lot of time obsessing over a future so far ahead it was impossible to control. But, I didn't think Michael would leave the autism program, graduate high school, get married or have children (isn't that the list?).
That first year a new student joined the class and Michael started picking up bad behaviors. The stimming was getting worse. So, Michael's teacher Jackie set up a program. She got a timer and said to Michael "Ok- you have 10 minutes to play with the cars and then you are finished". Then it was 8 minutes, then 6, then 4, then 2.... Finally, Michael learned how to control his stimming. It was a MIRACLE.
All I had to say to him at home was "ding, ding, ding- cars are finished". Then eventually "cars are finished". Now Michael started paying attention. He wanted to play with other kids. He went to parties and did more than put his face to the carpet and line up cars. He started singing in concerts and playing basketball. A new world opened up to him.
At the same time, Michael started learning how to read, write and do math. Slowly the words started to form sentences. Jackie used to say that Michael was a "sponge" and she was right. This kid would pick up things so quickly they would have to change his program. What took some kids a week to learn, Michael would pick up in 10 minutes.
As the years went on Michael started reading books, writing poems, pretending to be a teacher. Best of all- HE LOVES SCHOOL. He loves learning. He loves reading. He is happy with himself.
OMG- what else can a mother ask for? While we were working on cleaning up his gut, giving his brain the ability to process, and DETOXING his injured body- Jackie and the staff at his school were filling in the gaps. They came to his birthday parties. They attended my Mother's wake. They are basically family. These women have done more for me and my son then some of my own family members.
Last September the autism program "lost" Michael to a higher functioning special ed class. Michael is no longer in a class with ASD children. His classmates have ADHD and reading delays- but they are verbal. Today I stopped by the classroom and saw my son. He was sitting in his seat, following along by himself, reading the spelling words, participating.... If a stranger walked in they wouldn't even know my son had autism.
That would have NEVER happened if it wasn't for a school district that cared and put the money into the program. I know the skill level of most of the aides in school districts in this area- and the aides that worked in Jackie's class had the most experience out of all of them. I was an aide many years ago, so I know it's not an easy job. But, personally, I have never experienced anything but love, kindness and respect from my son's teachers and therapists.
I could remember days when Jackie and Gina (the main assistant in the classroom) would see me after school and tell me a story about something amazing Michael did that in the classroom- and the three of us would just cry. We were so happy. I never thought that a teacher could care THAT much about her kids. Jackie used to say that she, along with Gina and Kat (the psychologist) wanted to adopt Michael if anything happened to me.
Never in my wildest dreams did I ever think that my disabled son would contribute so much. It always hurt my heart to think that MY child would be a burden on the school district. Everyone would have to work around him. Everyone would have to sacrifice for him. He would cost sooooo much money. When Michael was 2.5 years old the district said "do you want home services in addition to preschool?" and I said no, because I didn't want to take too much. I wanted to wait and see if he needed it.
But, I was wrong. Because Michael was doing so well they started mainstreaming him. I had parents coming up to ME saying "Thank you for letting my typical child work with your son." These parents talked about how Michael taught their children patience and acceptance. This would have never happened if Michael was not at the point where he could be mainstreamed. I owe that to many people- including the staff at his school.
So many times in this blog and in life in general I'm talking about the biomedical interventions we do with Michael. They have been a HUGE part of his life and progress. And it may seem that I kinda slight the behavior side. I don't mean to. It's just that this blog was started right when we started chelation- so the purpose was more about biomedical treatments and sharing the experience with other parents. Just like Julia Berle shared her recovery story about her son Baxter, I wanted to document Michael's treatments.
But, the reality is- Michael would NOT be where he is today without Ridge Elementary and the Longwood School District. I would not have been able to organize conferences, travel to Albany to help pass laws, take pictures of events in Washington DC, talk to other parents for hours about treatments, go to conferences in Chicago, produce educational videos for autism schools, etc. if I had to fight my district for services. I was able to channel my energy into something positive. I was able to spend time researching biomedical treatments, instead of reading all the legal crap about CSE's and IEP's. I was able to take my kid to the park or a Yankee Game and not be stressed about his school.
Michael LOVES school so much that he cries if he misses the bus or is sick and can't go. He talks about his 3rd grade teacher, Mrs. Williamson, and his classmates all the time. He talks about graduating high school, going to Cortland College, becoming a teacher and just today he told me he was going to have "four" kids. (last week it was three).
I don't care if Michael never gets any better or recovers- HE IS A MIRACLE! And everyone involved- from his school district to Dr. Imam's office where he gets chelation- are miracle workers. I will always be grateful. I don't need flowers or candy on Mother's Day because I truly have the best gift in the world--- a happy child.
THANK YOU! THANK YOU! THANK YOU!
Sunday is Mother's Day, so I celebrate not only the Moms, but the women in my son's life... You know who you are.
My Mom was always so happy with Michael's progress and his teachers. There was a point where my Mom was so sick she couldn't get out of bed. I remember one day her laying there and saying to me "I'm worried about Michael after I'm gone". I said "don't worry Mom- he's in good hands". I would have never said that if it wasn't true.
Michael started playing last fall in school. It took a few weeks and then he got the hang of it. The kid LOVES to practice. He usually does about 100 minutes a week. Most times I don't have to remind him to play. It's all beginner stuff, but he gets better everyday.
