I started handing this out when Taylor was 3 years old and going into pre-school. I've added to it as the years have gone by. I hope you enjoy it and it provides you with an "insider's" view into who Taylor is and what one story of autism is like. My favorite saying is.. "you've heard one story about autism... you've heard one story about autism." It's never "you've heard them all!" I've edited some of the stories and added to others.
Taylor was born on June 1st 1995 at Community General Hospital. He weighed 11 pounds and 11 and a half ounces. People stopped by the nursery to see this "little person" who was hanging out with the other "babies." He was a beautiful little baby and we showered him with love and attention. His development was normal.. he gave up the bottle and pacifier on his first birthday. He started eating normal food at the age of 2.
In August of 1997, Pediatric Associates recommended that we take Taylor for a hearing test. He was unable to be tested. He screamed and had a fit on the floor of University Hospital. At that appointment no one said a word about autism. We just assumed he was "willful" and didn't want to cooperate.
In December of 1997, I took Taylor for an ear infection appointment where a doctor (not his regular doctor) said it was very wrong that Taylor wasn't talking yet. She was EXTREMELY concerned and said we needed to take Taylor to a specialist. This was the first I had heard from anyone that his non-talkative status was a concern. We brought Taylor in for an early three year checkup in April and his pediatrician told us to bring Taylor to The First Look project because he was concerned about autism. These two doctor appointments are forever etched on my brain. Especially the first time someone says something could be wrong with your little angel. You don't forget a second of that conversation. I mostly remember how angry I was at the first doctor who was making judgements and she didn't even KNOW my little guy. The second conversation was with his regular pediatrician and it was over the phone. He did NOT want to tell me. But at the time I had neither the time or the patience for pleasantries. I told him to tell me what he suspected and that's when I first heard the word autism.
Rainman won the Oscar for Best Picture in 1989, and a Best Actor Oscar for Dustin Hoffman. So you know I heard the word before. I'm a bit of an Oscar nut. But my soon to be three year old didn't resemble Charlie Babbitt at all. He didn't do any "tricks." Well the disappearing language was a good one.. I have him on videotape saying apple and powder and mama. Months later those words were gone. Taylor has what many are calling "regressive autism" which means he was born typical and regressed the winter of his second year.
Hearing those words was like a bomb going off in your life. Everything is flattened. Mark and I went on... looking for any answers that may help our sweet boy. But another interesting memory for me was.. we told our families and then told them, "do not talk to us about this until three months have gone by." We needed the time to give everyone the answers they were going to be looking for.. and since there are no answers in autism, we were going to need time to research.
We took Taylor to meet the lovely and talented Nan at the First Look Project out of SU. Actually Nan came to us. Nan did not diagnose Taylor but hinted that our fears were right on. She told us to enroll Taylor in Liverpool Early Education which we did.
In February we FINALLY got in to see Dr. Kate Church who said yes .. it is autism .. and quite possibly mental retardation. Both Nan and Taylor's teacher from Liverpool considered that comment to be out of line and not reasonable at all considering Taylor was in a new, unfriendly environment and Dr. Church had spent only an hour with him. Dr. Church said on a scale of one to 10 Taylor was a five on the autism scale. This was devastating news. No one had ever said Taylor was MR along with autism. It sounded like the death knell on any future for our boy.
In December of 2000 Taylor and me went to see Dr. Karolyn Horvath at the University of Baltimore. He recommended Taylor start taking prilosec since he guessed that Taylor had reflux.
In March of 2001 Taylor had an endoscopy at the University of Maryland and it was confirmed that he had REFLUX. We tried to talk to Dr. Horvath about secretin.. but since he was not authorized to give it out to his autistic patients.. he pretty much said we were out of luck. We went to Dr. Horvath because he was one of the "founders" of secretin therapy for autistic kids. But since the FDA was still saying that was "off-label" use, we had to use other means to find a doctor who would dole it out!
The search went on and in November of 2001 we found Dr. Roberta Foss-Morgan. She is in New Jersey and was giving out secretin infusions and topical secretin. Taylor had his first infusion of secretin in late November.. and since then has had a much better digestive situation. Secretin is the second best remedy we have found for Taylor. (second to ABA of course!)
Also during the winter of 2001 we removed excess gluten from Taylor's diet. The only change that meant was removing his favorite cinnamin crunch cereal. But we found after removing it that his skin looked better and the ever-present circles under his eyes disappeared. We have been sticking with that. All the playing around with Taylor's diet early on has left him with about 20 choices of food items that he will eat.
3/18/2002 Working with the school district of Liverpool we were able to set up an ABA program with Wendy. Since then he's been receiving daily ABA instruction. In June 2002 he also started to receive home sessions of aba amounting to 10 hours a week. In Mid-August mom started doing shorter sessions but doing them daily. For six months we even hired a home consultant who came to the house two to three times a week. Taylor continues to BLOW through programs and is making huge progress.
In May of 2003 we went back to see Beth Soeder who is a speech therapist at the former Dr. Church's office. (now Dr. Roizen). She tested Taylor's language skills and was impressed with his receptive language skills. His expressive still needs work. She commented that Taylor is a 3 on a scale of one to 10 and improving towards a 2. Mind you this is a "made-up" autism scale. There is no such thing as an "autism scale." But since everything else is brand new I thought I would make the people who treated Taylor answer the question "where is he compared to others?" Now I look at that question as very unfair. Every child is different and you can't compare them!
In October of 2003 I went to see Dr. Vincent Carbone in NJ. He is a proponent of VBA, which stands for Verbal Behavior Analysis. It is based on Skinner's analysis of Verbal Behavior. The therapy focuses on manding and tacting. (asking for things and labeling). I became a huge fan of Dr. Carbone's. Since then I have attended his parent workshop in November of 2003 and then attended a two-week, 90 hour, training course to learn how to be a behavior analyst. (February 2004)
Taylor was seen at the Carbone Clinic on March 25, 2004. He has made outstanding progress using VB. His ABLLS scores have gone up 131 points since taking them in October. We are still working on high level expressive language, but his ability to get his needs met is mastered. Now we are working on the finer points of conversation. Things like pronouns, adverbs and modified verbs are a struggle.
Taylor, at this point is far from recovered. You would know he is autistic by his incomplete language skills, but he would greet you and look you in the eye. He no longer has any problem behaviors thanks to VB and Dr. Carbone.
Taylor is a happy and loving child. Sometimes you wonder what is personality and what is the autism. We are lucky that Taylor is a huggable sweetie pie who would never hurt a fly. We've had to worry about that since he is such a big child. Lucky for us in the summer he loves swimming. He's been taking private lessons for three years. He also likes bowling. He has played Challenger baseball for three years but struggles with playing the outfield. (he likes to hit!) This summer ('03) we also tried bocce ball which he liked. But most of the summer was spent in Taylor's aunt's pool.
He adores trains. He loves watching the big trains at the East Syracuse train yard. He also loves little trains. We've got to see many of the smaller train shows. He also has the entire Thomas the Tank Engine collection. We've been vacationing multiple times in Lancaster PA where there is a Toy Train Museum, a Train Museum and a large toy train track setup at the Choo Choo Barn. Taylor loves going to Lancaster to see the trains. He also has an electric train set that his dad built for him in our basement for his birthday ('03). He likes.. like any boy his age... to make the trains go CRASH!
And of course he is still very much into TV. He likes Jimmy Neutron, Fairly OddParents and lately Franklin (on Nick Jr.). It's funny to hear him come out with lines from the show. The other day he hugged me and said "Don't worry momma.. you're my best friend." We've been buying him videos since he was 5 years old. Imagine my surprise when, after a weekend project of Taylor labeling every one of his videos (my decision not his!) we counted 150 videos! Let's NOT do the math as to how much that cost!
In October of 2002 we put him in a typical basketball league.. the Liverpool Optimists. He needed an aide to get through the game and follow the action up and down the court. It was, frankly, a painful experience to see him struggle to follow the game while children his age made the quick changes from one side of the court to the other. I wanted to go back to this, but it was a little too heartbreaking. I don't blame the fabulous people who run the Optimists. They were very helpful. Sometimes I just don't have the intestinal fortitude that I need when I see Taylor with typical kids who don't know him. That's a fancy way of saying every Saturday it took everything i had not to jump in the game and help Taylor or sit on the sidelines and just cry. So this year I chose neither!
In March of 2003 he joined the Special Olympics basketball team and did very well. Their games were less structured and Taylor was one of the best members of the team. I've met some amazing people at Special Olympics. I highly recommend it for anyone with a child with special needs.
Taylor is a sweet and loving child. That has been said of him in every evaluation since his first one with Nan Songer when he was three. He also is well mannered. We've made a big commitment to Taylor learning his "please" and "thank yous."
He no longer has daily meltdowns. He has amazing empathy.. when he hears another child cry it upsets him. Music has a huge influence on him. He learned to sing songs before he has ever learned to converse. Most times he will sing on key. The first song he ever learned was from "Space Jam." He sings "I Believe I Can Fly," just as good as R. Kelly. It's a very inspirational song for us. I always get stuck on the line..."sometimes silence can seem so loud." But the follow-up line is.. "there are miracles in life I must achieve but first I know it starts inside of me." Yep, it's a tear-fest every time I hear it!
His language skills are emerging but my goal since he was diagnosed will be for him to speak english fluently. Which sounds weird.. but as long as he can talk, he'll be able to function in this world. I have no need for science, social studies, history or any traditional types of subjects. Our main goal 24/7 should be to get this child to be able to speak what is on his mind. If everything else suffers subject-wise.. I could care less. Sometimes you have to pick your battles.
This summer ('03) we also made a great friend for Taylor in MaKenzi. She is an amazing little girl who is kind-hearted and is forgiving of Taylor's outbursts when things aren't going his way. Socially I have had dreams for Taylor but I know it will take special people like MacKenzie to appreciate Taylor and love him for who he is. I still have dreams for more friends, but those children will have to be chosen carefully because Taylor still has social deficiencies. MaKenzi was a gift from god and whenever I was with her and Taylor I realized that we were blessed with her friendship.
Taylor has made really nice friends at his new school. He has kids that look out for him and work with him on basic interactions. Willowfield is a great place where kids with special needs are truly mainstreamed with typical kids. Liverpool has so much to be proud of because of this school. I know Principle Chick Quattrini also has so much to be proud of in making sure the environment stays that way.
Taylor loves his mom and dad and we shower Taylor with love and affection. We're lucky to have this little ray of sunshine in our lives. He has made my life so much richer. I am a better person for knowing him and knowing the people along the way. Sometimes working within the system is like rolling a giant boulder up hill. Talking to people about ABA has been like that. Some professionals believe it is a scam. But I've seen it work with my own eyes and frankly, that is all that matters!
Our boy continues to work hard and show progress every day. We have so much to be thankful for, especially all the teachers and aides who have come on this amazing journey.
