Chapter One- The Never Beginning Story

THE NEVER BEGINNING STORY

In the beginning…

It all started when…

At first…

How do you write a story with no beginning and no end?

I used to think that I was a bit like Bilbo Baggins in The Hobbit, willing to take a journey but often longing for the comforts of home. I once thought that I would entitle our story “There and Back Again.” The only problem is that I am not sure if we are really back again or if we have just taken a new and better path than the path we were headed down. I don’t know what could have been, all I know is where we are. LIFE’S FACT NUMBER ONE: Lukas is doing very well, he is fine, he is happy, he is functioning, he is unique, and I have never met anyone like him. He is creating his own destiny and where he will travel is not up to me. I can only give him tools he might need to get there. He is the one who is most in control of where he is going.

There is no beginning to our story because there was no one single day that Lukas woke up autistic. I know he wasn’t born autistic. Ah. Did you hear that? I did. It is the snorts of a few autism experts. I have now offended several “autism is genetic” scientists and believers. The way I see it, our genes are innocent until proven guilty. Until these researchers can show me definitive scientific proof that this is a genetic epidemic occurring in several countries, I can say that my child wasn’t born autistic. As of this date, there is no proof. Some are playing around with the notion that between 10-20 different genes could be responsible or could act together- maybe. They are no more closer to the truth than the researchers who are blaming stealth viruses, wacky immune systems, vaccinations, or mercury. If there comes a day that there is a definitive genetic test for autism and Lukas tests positive for it, I will stop saying that he was not born autistic. Until then, the vast majority of research money will continue to go into finding a genetic cause that may, or may not be present.

Again… There will be some naysayer who will say that the signs of autism were there and we, well meaning but uneducated parents, just missed those signs. I can not tell you the number of times I have seen some little news blurb about how “scientists” have now discovered that autistic babies crawled differently or played with their hands or babbled differently. Of course, these news blurbs always sent me to our old home movies only to find that no…he did not crawl funny. He did not babble differently. No. I did not fail to realize how withdrawn he was. He saw me enter the room and lit up because mamma was here.. He crawled like any other child. He saw things around him and had joint attention. I do know a handful of parents who say that there children were different from birth, or as infants. I also know a large group of parents who tell me that there were no signs that first year and there were minimal signs the second year. I believe them all. The spectrum is so wide. Autism experts tend to focus on what all these children have in common that they ignore the fact that all these children are also so very different that it is amazing that they have the same label.

Autism is a neurological, possibly neuroimmunological disorder diagnosed by a list of behaviors as defined in the DSM. A list of behaviors determines whether or not you will get to be card carrying members of the Autism Society of America and have well meaning, but very annoying people ask you if your child reads phone books like in the movie Rainman with Dustin Hoffman. A simple list of behaviors is what your neurologist, your pediatrician, your psychologist , or your “team” of experts have to give a name to your child’s problems. Again, until the so called autism experts can show a scientific, definitive test for autism not based on subjective observation, I can say that my son lacked enough symptoms to be autistic when he was younger.. He hit all major developmental milestones on time. He walked at 10 months. He spoke his first words at 10 months. He waved “bye-bye” at 6 months. He had dozens of words at 14 months. He played with toys. He looked around and saw the world before him. I have very distinct memories of walking down a crowded city street with him in our backpack and he would stand up and shout “pooh bear!” and point to a t-shirt with pooh bear on it. We have video of him at 16 months playing at the dog park. You can hear an airplane roaring overhead and he looks up, points, and says “airplane” in his father’s native tongue (we are a bilingual family).

Demand Number One:

If someone want to proclaim his or herself an autism expert, he or she better start coming up with more real science and quit pushing observation as fact, theory as fact, and negating other possible ideas simply because it doesn’t mesh well with his or her own unproven hypothesis. Lukas deserved better than the current state of affairs. It was , after all, the same associations and groups that brought us Bettleheims’ Refrigerator Mother. I still see the harm that was done by this theory and the field of psychology and the field of medicine has yet to redeem itself. I expect more from them. Now they must deliver.

The one thing I am hesitant to write about is the fact that Lukas knew his numbers, letters, and colours in two different languages by 18 months. He could also count to 10. One autism group will say that this automatically points to high functioning autism or Aspergers and that this is very common in hyperlexics. After being around enough typical children now, I did not think so. I also do not think this is a “budding genius” symptom either. While Lukas certainly learned these things with minimal effort, my neurologically typical (NT) twins learned them before the age of two. I have also been on enough parenting lists to see that quite a number of toddlers know these things. It saddens me sometimes to read about how a parent who has an older child with autism will freak out because the younger NT sibling can spot the letter B at 14 months. I remember dreading the fact that one of our fraternal twins, Anna, knew how to logo read Lowes Hardware stores and most fast food restaurants. Rather than taking that as a criticism of our consumerism, my husband and I put her on “autism watch”. It doesn’t take a disorder to be intelligent!

Anyone can be intelligent. While it doesn’t prove autism, it also certainly doesn’t disprove autism either. I have been on many internet lists where children with very obvious problems socially, academically, and cognitively were getting minimal services and intervention merely because they could read: “He can read this Dr. Seuss book! He can not be autistic”. Apparently, I missed the Dr. Seuss Autism test when I began researching autism.

It is very fitting that two myths currently circulating about autism are in direct conflict of each other: Autism is full of contradictions, so why shouldn’t its myths be? Myth 1: children with autism are unusually bright and intelligent and often learn their numbers and letters and even to read with little direct instruction. Any visit to a gifted and talented class or a school for the gifted will turn up plenty of children who learned to read without instruction and who are totally normal. You do not have to be autistic to be smart. Myth number one made me ignore my child’s love for learning and made me want to hide his reading abilities from autism experts. I became the closet book buyer. I would cringe when he would skip count by threes in preschool because I knew the image he would project. If he did not have the scarlet A (for autism) glued to his forehead, he would be Gifted and Talented. The scarlet “A” turned him into Rainman.

Myth 2: Children with autism are totally retarded and cannot learn. I guess all those successful autistic adults who do exist just do not count in the eyes of those hell bent on presenting a worse case scenario view of autism - from Hollywood to parents in serious denial over their child’s lack of typical development. For whatever reason, these people refuse to consider Temple Grandin, Donna Williams, or any of the children who were found normal functioning in the early intervention study by Dr. Ivar Lovaas. I often used myth number two to prove that my son couldn’t be autistic. THOSE children were retarded MINE was not, therefore, he wasn’t autistic. How horrible it is that I felt the need to tear down a population of children with autism just because I did not want my son to be a part of their group.

It is now time for a confession. I have to put a dirty little secret to put out in the open: Our child was in love with Thomas the Tank Engine. HA! I can hear the choir singing now! Many people will automatically jump on this as “an autism red flag” When our son was a toddler, he found “James the tank engine” on a playground. We let him keep it and we began to buy Thomas trains. I even planned a Thomas the tank engine birthday party. I bought the trains, I bought the videos, I read the books. I pushed this. Toys with a lifetime warrantee and no violence? I must admit that listening to Ringo Starr’s sexy voice over the TV (he was the voice of Thomas) was far more preferable than one more dopey laugh from Barney. I stopped buying only poohbear toys and started buying Thomas. Lukas’ love of Thomas finally died out when he was about 5 years old. I have to admit, I was glad to see it go at the time…I was relieved. It is not because I hated the Thomas character itself but because of a single public special education teacher and a public school speech therapist who was evaluating Lukas before he got his disagnosis, laughed when I mentioned how much Lukas loved Thomas. “We were just talking about how all autistic children love trains and Thomas (myth number 3) .” I remember looking at these two women, who were laughing and smiling and realizing that their nods to each other was a silent confirmation that they now thought Lukas autistic. I was crushed. I hated Thomas from that moment on. Thomas the Tank Engine represented a life long disability. I apparently hadn’t read in the DSM-V that liking Thomas the Tank Engine or having parents who regularly buy the trains rather than power rangers or Nintendo games is a red flag for autism. I guess most of Great Britain’s youngsters are closet autistics.

Now that I am older and wiser, I have let my fear of Thomas the Tank Engine go. Although…. I did silently snicker at two typical preschool boys I recently observed who could name every engine and every engine colour. The two preschool moms commented about how their children just love Thomas the Tank Engine. Little do these moms know that if they could throw in a language delay or a tantrum, a special education teacher might recommend a self contained classroom for their child in the future.

Already this talk of toys has thrown a monkey wrench into someone’s perception of autism. Not all children with autism are head banging and rocking in a corner. Some even play with toys. Lukas would slide down slides on the play ground even when he was at his worst developmentally. He liked pooh bear and Thomas as a toddler. He loved his dinosaurs. He loved his books. He loved to dig in the dirt. He loved to be swing.

I am also hesitant write about what a beautiful baby and toddler he was. Many in certain autism camps will jump up and down and say “ah-ha! There is the sign you missed. We all know that children with autism are extraordinarily beautiful.” Apparently, if you do not want your child to be autistic, he needs to be ugly. Unfortunately, this logic will run a label shopping parent into another quagmire: Asperger kids are ugly. (Myth number4) Hollywood must be full of undiagnosed actors and models because there are far too many self absorbed beautiful people there. The silicon valley must be over run with Aspergers because we can all spot those badly dressed, not so good looking geeks. Even a recent article by Wired Magazine has weighed in on the autism issue by proclaiming that this is a Geek Gene epidemic. My only response to any of this is that until those so called autism experts can prove to me that there really are an unusual number of beautiful autistics and an unusual number of ugly Aspergers, my child’s charming good looks are just that- good looks. I am no longer afraid to say that my child is a pretty good looking kid. Autism’s Lesson Number One: when someone says, “autistics are” I will remember that there is always quite a number of exceptions to the rule. I have met several children with autism over the last few years and NOT A SINGLE ONE OF THEM HAS BEEN THE SAME. They are as individual as neurotypical children. We would never allow someone to say that “blacks are” or “women are” or “jews are” and yet, it is perfectly acceptable for Hollywood, Scientists, Medical professionals, Schools, Educators, and anyone working with children who have autism to stereotype them.

With this developmental history, I am afraid that there is no real inside scoop for anyone when going over the first two years of Lukas’ life. The first two years were relatively normal behaviorally, socially, and cognitively. Perhaps that is why Autism can be cruel. Parents are allowed to experience normalcy. They are allowed to stop worrying that something might go wrong because the pregnancy and birth are long behind them. Many have children who meet all checklists, even at 18 months. I almost felt lied to when after several years, it became apparent that all was not okay. It is this lie that has sent me back, searching. That is why I feel compelled to mention one area that was not necessarily normal.

Lukas had some health issues. He is like many children in that he had chronic ear infections. He also had skin problems. He had eczema all over his chest and arms and legs. He did not sleep well. He would often wake up in pain and cry. He also had diaper rashes and explosive bowel movements. Our pediatrician wasn’t worried though. I doubt he even realized this was a problem. I often had to wait an hour past our appointment time to see him for well baby check ups. His office was packed and all the exam rooms were packed. He would flutter in, make an quick hello, open the chart, grab his stethoscope, look in his ears, make some notes, tell the nurse to give the jab or to give him the needle , and flutter out. So, it doesn’t surprise me that he saw these things as of no particular importance. We were one of many patients in his assembly line practice. Which leads me to the MMR.

MMR stands for measles, mumps, and rubella. It is a standard vaccination for children given sometime between 12 months and 16 months. It has saved many lives and protected children from the complications that can arise should they have contracted any of these diseases.

A few days before the MMR shot, our son had a really bad case of the flu. I told the nurse that he had just recovered the day before and I wasn’t sure if he should get his shot. I also told the doctor who glanced at Lukas, glanced at the chart that showed no fever, and he said, “Oh, he is fine.” He then gave him the jab.

That very night, he woke up screaming. He had spiked a 103.5 fever and was shaking. My husband and I debated the merits of going to the emergency room. I stripped Lukas down, ran a lukewarm shower, and stood in the shower at 1 in the morning with Lukas. He seemed to be soothed by it. I then put a diaper on him and held him in our bed. He shook some again. I thought that he must have the chills from his fever. We decided to give him some fever reducer and watch him until morning. In the morning, we called his pediatrician’s office as soon as the office opened. We couldn’t speak the doctor. We asked to but the receptionist told us that we could only speak to the nurse. She put us on hold and came back and told us that this was a coincidence, that it had nothing to do with the MMR shot and to give him some Tylenol and only call back if he developed a rash.

I was surprised by this response. I told my husband to write down that our child had an MMR reaction in the baby book. My gut told me that this was all wrong- VERY WRONG.

Lukas was lethargic for a few days. He slowly seemed to recover.

Looking back, I question myself. I should have gone to the emergency room and insisted it was an MMR reaction. I should have not asked the pediatrician if we could see him, I should have TOLD the pediatrician that we were coming in. I should have required that he fill in the paperwork necessary to report an adverse reaction or I should have reported it myself. I wonder if the shaking he experienced was the chills or if he had some sort of febrile seizure. I wonder if that was the point were there was a slow down in the progression of real language. Unfortunately, I will never know the answer the latter questions. I did not spend my days going over this time. I cannot travel back in time. For whatever reason, my mind has driven me forward. Autism’s Lesson Number Two: Looking back can help piece together what went wrong or where things went wrong but I need to always keep looking forward because the future is where my son will BE.

The medical system failed me. Until the medical community can police itself better and come up with a more reliable system of reporting adverse reactions to vaccines they have lost credibility with me. The current system of hoping that a doctor will voluntarily fill out the necessary paperwork and report an adverse reaction is insufficient. It is wrong that I allowed my son to follow his vaccination schedule and was never informed that many of his shots contained mercury in the form of thimersol. I myself have issues with thimersol. It used to be used in contact lens solutions. Whenever I bought such solutions, my eyes would burn so badly, I was unable to wear contact lenses for several days. It is amazing that we spend so much time debating what preservatives are in our children’s foods and do not give a second thought to what we are injecting into our children’s bodies merely because it came from a doctor’s office. I do not call this informed consent. I was not informed that his shots contained mercury. I was not informed that the manufacturers of vaccines clearly state that ill children should not be vaccinated. I was not informed that doctors routinely receive financial incentives to keep their patients up to date on their vaccinations. I was not informed by the very people who should have had a moral obligation to do so.

Until doctors, the CDC, an “ autism is genetic” theorists can admit that my son had a reaction to the MMR shot (which he clearly did), they have no credibility with me.

My son had a reaction to the MMR shot. Period.

It is not a coincidence. He had a reaction that was unreported.

He had a reaction.

Deal with it.

I have had to deal with it. I have dealt with all the what ifs, the if only, and I should haves. I trusted my doctor. I did what was expected of me as a parent. I wish I hadn’t given the MMR shot that day. I wish I had waited a month until his illness was completely gone. Since my family has a history of autoimmune disorders, I also wish I had asked for the vaccine to be broken into its separate parts. I wish I had put my child on a delayed vaccine schedule. I would still choose vaccinations. I just wouldn’t let a doctor who receives financial incentives to follow a vaccination schedule dictate when my ill child should be vaccinated. I admit that there is SOME guilt on my part. My gut told me that this wasn’t the day for the vaccine because his immune system was compromised. My gut told me to take him to the emergency room. I do not know if delaying vaccinations and waiting until he was healthy to vaccinate would have changed the course of his neurodevelopment. I can not prove that it would. My gut though tells me that in the very least, it would have been the medically safe thing to do.

Autism’s Lesson Number Three: trust your gut, not a degreed professional who often has many undisclosed conflicts of interest.

A bitter lesson to learn but one that actually helped me as I waded through all the self proclaimed experts who said that they could help my child.