The Great Pretender

I opened the inbox to my computer and downloaded my messages. 5 new emails. This should have been a milestone for me. Gone are the days of downloading literally hundreds of messages from various Internet lists. At one point, I belonged to as many as 12 different lists (of which I lurked in most of them). Two emails were basic Internet junk mails- one proclaiming that I could increase my penis size and the other letting me know that I could see two sexy women do it with a donkey. I was pleased to see a message from an “epal” of mine. I met Michelle in 1999 on a large volume list. We had both grown a little disenchanted with the list and had started emailing each other privately. We had chosen different paths (or I should honestly state that in some ways, the paths we had resources to utilize were different) but we both had an interest in the biomedical research behind autism treatment. It was a short email but one that made me smile. Someone finally was getting glimpses into what it was like to be me- the mother of a child who is a “passer”. It was a single sentence that caught my eye:

Have you managed to overcome the feeling that you are the parent of a special needs kid?

I wrote her back. This is something that I struggle with every day. She asked because she signed her son up for a sports camp and was getting the joys of hanging out with NT parents who didn’t know her child’s history.

I had bad news for her. I couldn’t give her a 12 step program to follow. There is no discrete trials in helping a parent to heal from autism- even if the child is technically recovered. There is one major disadvantage to hiding your child’s label or hiding your child’s past history- hiding his label or past history means you have to hide yours.

Very few people really know me. I am a variety of aliases. For my NT twins and the parents of their preschool aged peers, I am “A Preschool Mom”. They might think of me as the preschool mom with twins. They know I have an older child. They also know I was someone who homeschooled a while. They have vague memories of me mentioning that my son has a little ADHD and was a late talker. They are also familiar with the fact that he is gifted. They like to remind me that Albert Einstein was a late talker and gifted. I usually smile and tell them that I have heard that rumor as well. Occasionally, one might remind me how they heard that Thomas Edison was adhd.

These are all very nice women. They gather outside the school and chat for a while. They could be found in the car pick up line socializing with each other. They arrange play dates and birthday parties. I am usually able to join in on the topics at hand: breastfeeding, childbirth, wall paper. I offer “ABA” advice minus the technical jargon when they talk about their little Johnny’s tantrums. I ask strange but seemingly relevant questions when they mention that their two year old nephew isn’t talking like their child. (um.. does he point? Um.. is he not saying ANYTHING, not even babbling? What kind of toys does he like?) But it becomes harder when my past crosses with their present.

One mother, Sandra had her older son in the exact school and classroom that we pulled our son from the previous year. The teacher of this kindergarten was not the nicest of teachers. It is hard to believe that someone who acted like she didn’t like children would chose to teach kindergarten. Usually, kindergarten teachers have a personality that is designed for working with children. This teacher was not a warm personality. I thought she was an unprepared and unkind. Sandra began to tell me how this poor teacher had “all the problem children” in her class because it was only her second year teaching. I wanted to scream, “oh yeah? Who told you that? Is that what the teacher told you to gain sympathy from her? Did you walk in and see a classroom out of control and she felt a need to cover by blaming all the bad boys in her class and blaming the senior teachers for not taking the burden of bad children?” Instead, I hid like a coward and nodded my head.

Sandra told me how one child was from a divorced family and how another child was a “repeater” ( was held back for a second year in kindergarten.) I wanted to scream that these were confidentiality violations and that if that teacher gossiped about this to her, that it was ILLEGAL. Again, I hid for fear of Lukas’ past being found out. Sandra told me how the teacher was forced to cancel a field trip because of the bad behavior of three boys in the class. I wanted to tell Sandra that she had no right to know about these boys and how this teacher constantly blamed other children and other teachers for her lack of classroom management. I wanted to tell her about how this teacher said mean things to my child and how she even lost my child one day and failed to tell me. I wanted to spill out how this teacher had so rattled my rather unemotional behaviorist, that my behaviorist called me at 10 oclock at night and told me that if Lukas was her child, she wouldn’t let this teacher within ten feet of Lukas and she would not even take Lukas to school the next day. I wanted to vent about all the horrid things this woman said about Lukas and about how she even rolled her eyes when talking about him during a meeting with the school. All this anger I had towards this teacher was to be kept inside. All my struggles were to be hidden.

“Homeschooling was really good for my son. 28 children in one kindergarten class with an inexperienced teacher was not a good mix for us.” I replied… “hey, did you ever get that wallpaper off your walls?” I added quickly… in order to change the subject.

Three years of struggle. Three years of terror. Three years of stress. Three years of revolving experts, evaluations, tutors, paperwork. Three years that forever changed my life. Three years that I am not allowed to talk about.

With the preschool moms, I pretend that breastfeeding was my greatest challenge in the years of mother hood, that my greatest dilemma was how to effectively clean the grout from my bathroom, and my greatest trauma was the time that my child had colic and my husband was on a business trip. If I reveal my struggle, I violate Lukas’ privacy. This simply isn’t an option. Revelation is for Lukas to decide on when he is of age- not me. We have been burned too many times in the past to feel comfortable exposing Lukas personal medical history.

The wall that exists between parents of typical children and me isn’t there just because I have to pretend that my life was normal.

I think that there would be a buffer zone there even if we exposed Lukas’ secret. Over the last four years, I have learned valuable lessons. I have learned patience for my children, what real unconditional love is. I have learned which battles are important to pick and which are merely distractions from life. More importantly, I have learned how to value all the small blessings that have come my way. I am not the perfect image of motherhood. I still lose it on occasion. When my youngest son asks “why?” for the millionth time, I still snipe at him to stop. However, in the back of my mind, there is always a voice that reminds me how truly remarkable that someone who is only three years old can wonder, ask, and reason. I go to parks and watch typical children play and every motor imitation, every vocal imitation, every social imitation that they make, I notice. I don’t think typical parents really know how truly remarkable it is that their children do this. On the other hand, this Autism business also has changed some parts of me for the worse. I don’t think I have handled what happened with grace. Autism can bring out the best in people and it can bring out the worse. For me, it has also made me more cynical and less patient with adults. I find that I have lost the ability to sympathize with many typical parents. I have little patience for whiners.

I once had two hours to be by myself. It was a rare occasion. I chose a coffee shop and I chose to study for my night class. As I sat in this coffee shop, a MOPS (Mothers of Preschoolers) group strolled in. I was irritated. At first I was irritated because they chose a coffee shop for their meeting. It hardly seemed the place to bring in children They came in not only with their preschoolers but their toddlers as well. I was trying to escape children. I told myself to chill out because I realized that these moms still had a right to a double tall latte, even if they had toddlers. But then they started to talk. One mom began to talk about how disappointed she was that she couldn’t convince Gymboree to open a store near her home. Another mom talked about how her child’s constant talking was annoying and she was going to have to call her daughter “chatty Kathy”. I wanted to shout at the Gymboree woman to quit complaining. This was hardly a travesty. I wanted to tell the “chatty Kathy” mom to appreciate the fact that her child can even talk. There are hundreds of families who dream of such a day.

I couldn’t decide if I was bitter or if I just knew life from both sides. I went back to being annoyed that they felt this coffee house was an appropriate place to hold a loud, child filled meeting. On some level, I can see how a child’s constant talking can irritate you. I can maybe understand a desire to have a nice store nearby. But I just don’t understand how one could waste time with such trivial matters. At least I had my night class to be away from Motherhood.

Since I was enrolled in a Chemistry class, I came into contact with a number of degreed professionals who were close to my age. They began talking about times to meet for study groups. I was never able to make some of those times because that might be a time that I had an IEP meeting, or a tutor coming, or a workshop. They knew I was a mother. I couldn’t use the “I need a babysitter” excuse because they would just offer to come to my house. I can’t have them at my house during a workshop. When one woman, a nurse, began to talk about Medicaid, I slipped. I let out a groan and said that it was a huge problem with the amount of paperwork they require. She was surprised that I knew anything about it. When one public school teacher groaned about an IEP meeting he had and how this high school student was “being given everything on a silver platter”, I slipped again and mentioned that he probably went through years of IEPs that didn’t have a plan to give him independence. My cover was being blown. So I lied- kind of. I said that I worked in ABA and worked with children with Autism. I just didn’t tell them it was my child who I worked with. I was not comfortable sharing Lukas’ label with these strangers. I was now the “ABA therapist” who also happens to have three children and at one point homeschooled.. Close to the truth but not quite.

In my area, homeschoolers are plentiful. Unfortunately, the type of homeschooler is not. In some states and cities, you can find a variety of homeschooling associations- from Christian groups, Jewish organizations, secular groups, Charlotte Mason followers, classical education homeschoolers, Unschoolers, etc. I once lamented that I wished I lived in near a Wiccan Homeschooling group as surely their children would be more accepting of other children with quirks! In my area, there are only Christian homeschooling groups of a certain kind. It saddened me to find that during our 6 months of homeschooling, I couldn’t find comfort here. Even here, I was not truly safe. I was going to apply for membership into a group in hopes of finding peers for my child, in finding more information on resources, and to make our homeschool legal. I remember standing in a parking lot of a Baptist Church waiting for the monthly meeting of homeschoolers to begin. Various churches usually lent rooms to the local homeschoolers association. Homeschooling moms began to arrive and they gathered in the parking lot. In a matter of 15 minutes, I was liar.

One woman asked where my husband was from and where we lived before we moved here. She then asked if my husband was also a “believer”. She had assumed I was. How very ironic! I nodded my head rather than explain that the Christian in our family was actually my husband. I didn’t want to go into the issue of Orthodox Christianity as I didn’t feel like Orthodox Christian views were particularly cared for among this group. I think she had assumed my husband was a believer in Islam. It was hard for me to talk to her. I was the unbaptized soul who struggled every day in her faith. I was the one with a Muslim inlaw.. I was the one who bought the Koran that sat on our bookshelf (although I never could finish reading it) . It was me that would rather read the Toa of Pooh than the Bible.

Another mom began to talk to a newcomer about the reasons for homeschooling. She talked about the homosexual agenda that public schools were promoting. I smiled and she nodded her head at me. She thought I was agreeing with her. I thought she was an idiot.

I am not a big fan of the public education system but I will say this: teaching homosexuality is one of the LAST things public schools are worried about. They are worried over a lack of money, qualified professionals, and how to make Johnny read better so their state assessment scores won’t result in a cut in federal funding. I wanted to tell this woman about the homesexual friends I had and the gay coworkers I came to know. I smiled and kept silent. I was now the closet gay- loving- in –a- constant- crisis –of- faith- Muslim -lover who was pretending to be a proper Christian homeschooler. I walked out the homeschooling meeting with all the appropriate forms to sign for membership. I was ready to sign them until Michael read them. One item was a covenant of faith. You had to sign to be a member. Michael is very picky about religious statements. One item said that you must agree that salvation was found through Jesus Christ alone and could not be found through good works or deeds. Michael refused to sign.

“What about all the Jews? Are you saying they are going to hell?”

“No.” I replied. “Look. It is just a form.”

“What about your friend Abed? What about your Brother-in-law Mohammed? Are they going to hell and what about

people in remote places where there are no Bibles and are raised by their parents not knowing any differently. Do they

go to hell?”

“No. Of course not. God knows what you believe and he probably doesn’t care what’s on your baptism certificate.” I was tense. “Look Mr. Christian Orthodox. Maybe I should ask you these questions. You’re the one from the holier than thou church!”

We went back and forth- mostly because Michael was right and I hate being wrong. Michael wasn’t comfortable signing the form. To tell the truth, neither was I. Did I really want Lukas to be with their kids? Was it really that important? I delayed signing the forms and only had to pretend for a few months. To be fair, I have heard wonderful things about other homeschooling associations. It was just unfortunate that I had so few choices. The experience of that night certainly didn’t help strengthen my weakening faith. I was to struggle with my faith for even longer.

The fact is, parents of NT children can not understand what happened in the last three years. Even my own family do not really understand it. They live far away and my struggle was only relayed by email and telephone conversations. I think they have an idea that we went through some stress but I don’t think they realize the depth of what we went through. None of my closest friends live near me. They aren’t parents themselves and what they know of the last three years was mentioned in 3-5 minute conversations over the telephone. I was always very conscious of whether or not I was talking too much about autism and always tried to make sure that I asked them about their work, their vacations, their dogs. We moved to this part of the world only a few months before Lukas’ diagnosis. There were no friends close by to witness our struggle. They see how Lukas is today and think, “Everything is fine now”. My husband’s relatives also do not understand because we chose not to tell them the diagnosis. There is a very stereotypical bleak view of autism in their country and since there is so much mythology about these types of disorders, we felt it was for the best. Lukas is not the poster boy for autism. He is not here to educate an entire nation. If he wants to do that as an adult, it will be his choice. But for now, we felt that we needed to keep it at that- a choice for Lukas to decide on later.

One would think that given the fact that there is this quiet , unhealed wound in my heart, I would feel comfort among other parents of autism, autism support groups, and other parents of special needs. Surely they would understand me and I would find a home with them.

Unfortunately, this is not case.

I don’t attend any autism support groups. I don’t attend any Autism Society of America conferences. I don’t believe that autism is a life long disability for ALL children with autism. Some yes. Some will have autism the rest of their lives. Some will not.

That philosophy puts me out of the Autism Society of America. I am unhappy with ASA’s lack of promotion of good, sound, research. Their refusal to take a position gives a quiet nod of approval to the continuation of pouring money into unproven methods. One mother I know can get Art Therapy covered for her language disordered child with autism but can not get speech therapy services covered. Organizations like the ASA should be involved but alas, I feel as though ASA is there to handhold and not really change the status-quo. The recent ASA conference in my state did not have a single speaker on ABA. Not a single one. I can’t be a part of this organization. I know that many will write to me to tell me what good ASA has done. I am sure that they do some good. But my view on autism is in contrast to their view.

My pro-ABA stance alienates me from many in the autism community. I can’t respect organizations that practice “feel good, fuzzy” psychology and ignore hard science- or worse, bash it. I blame them for the rise in pseudo-therapies like “rebirthing Therapy” which resulted in the death of a young girl last year. I am also not comfortable with various support groups. Parenting a child with autism is tough. Autism is hard. But groups that simply exist to “help you in the grieving process” scare me. I felt like there was no time to grieve while you have a child in need of help.

I used to joke to a fellow mother and friend Allie, that if I were to write a book on Autism, I would start the first line of the book

“Autism sucks.”

The second line would be “Then you move on.”

Autism is cruel to parents. For me, Autism itself was a heck of a lot less stressful than dealing with all the agencies that were supposedly there to help me. Lukas was not stressful. Autism in itself was not stressful. My school district was. Egotistical and arrogant professionals were. Lukas was easy. The politics of autism was not. I have little patience for parents who want to get together every month and talk about how to accept your child’s autism. Should we talk about the stress and the pain? Oh yeah. Should we let it bury us? No. I feel like some groups allow autism to paralyze them. I feel like some parents are still waiting for that Autism Fairy that Allie spoke of. Some are waiting for a magic pill. Some are simply turning their children over to professionals hoping that someone else will fix the problem.

I also don’t entirely relate to all parents with autism- even those doing ABA. There are things I have never had to deal with. Lukas was always with us. He was always connected. Parents have described to me how their child “was not there” or “in another world”. I still don’t have a grasp of what they are talking about. Would I so completely rule out things like floortime for my child? Yes (although I did steal a few ideas from Greenspan’s Special Needs Child book- ideas that happen to have a basis in ABA.) Allie once said that she felt that she needed to use “Floortime” (aka Greenspan) because her child was aloof, disconnected. Can I judge her decision? No. Lukas was not disconnected. Perhaps, I would feel differently if Lukas was. Perhaps I would feel like Floortime was essential if Lukas had been.

I have known parents who talk about their children being nonverbal and using pecs. I can’t relate. I have no advice to give. We didn’t do this. We didn’t even use sign. Lukas was never completely nonverbal.

I read from parents about children who are “runners” and the way that they must constantly guard their children and set up alarm systems. Lukas was active. Lukas explored. Lukas was not a runner. I can’t imagine what it would be like to have a child disappear after having foiled the alarm system.

Parents have told me about children with self injurious behaviors, learning disabilities, potty training problems, and aggressive behaviors. I have found it hard to talk about how Lukas has such bad handwriting to them. I felt ungrateful for the blessings we had. If I mentioned handwriting woes or worries that Lukas only had two friends, inevitably some parent would chime in about how their lives are so much harder and how I needed to quit my belly aching. Did these parents have a right to vent their frustrations? Did they have a right to point out how much worse Autism can be? Yes. Their struggles and their battles are something that I can’t fully understand. But that does not mean that I don’t have a right to advocate and work with Lukas simply because he is “high functioning.”?

I must also admit that I don’t like the current tactics by parents and organization to raise awareness of issues in Autism and to promote ABA. It is too feel good for my taste. I look back and I wish parents with Autism would take notes from the AIDS epidemic. The gay community didn’t just make quilts, show pretty pictures of loved ones, and write letters to their senators. They lobbied hard. They held protests. They were in the streets. They were ACTIVE. They protested at the door step of Congress. They protested outside the offices of their politicians. They got noticed because they were loud and impolite. The Autism epidemic will continue to silently creep along. Parents will continue to silently fight in IEPs. One very nice organization that has done a lot of good had a slogan of “hear their silence”. I think that is the problem. The people who matter are hearing our silence. I don’t want to join a nice organization. I want to join an organization that takes loud, clear action- even DRAMATIC action. I don’t think this flies in the face of science. I think science needs us to be more active. Just as AIDS research increased when the Gay Community took charge, it will increase when parents take charge. I don’t want to be nice about autism. Unfortunately, I doubt many parents of children with autism are likely to stage protests outside their district offices or outside their state representatives or insurance companies. I am also a hypocrite. This kind of action, this kind of nonpolite activism would mean that I have to expose Lukas.

A parent once sent me a flyer on a “special needs camp” and told me how I could get Lukas into it for free. I took the flyer and thanked her. I didn’t want to explain to her that Lukas could go to a regular camp. Lukas didn’t need a special program. I didn’t want to explain to her that taking advantage of this was like stealing money from kids who had real autism. I was afraid that she would think that I thought my Lukas was better than her child. She started ABA long before me and her child still had a long ways to go. This program was a good thing for her child. It was a waste of money and fraudulent for mine. She still has not understood that our children share a label but have different issues. I feel for her. I marvel at her grace and her strength. But I am not walking in her shoes. Is it survival’s guilt? Maybe.

So, my circle of parents became even smaller. What about ABA organizations? Could they provide me with a sense of community? No. I have trouble with families that are so PRO-ABA, that they belittle all other approaches. My son has high HHV6 titers. He has celiacs. He is also slightly anemic. These are real issues. These aren’t just fads. I saw ABA as rehabilitative therapy much like speech therapy or physical therapy is for those who have had strokes. However, neither PT or ST addresses what causes the stroke in the first place. It just deals with the symptoms and after effects of stroke patients. Chronic diarrhea and ear infections still needed to be addressed. I feel disrespected and dismissed by many ABA professionals because we choose to treat our child’s low red blood count. We also need to look at facts. Only 47% of Lovaas’ kids were in the best outcome category. That is not good enough. That means that there is still 53% that are not best outcome. Work in ABA is only half done. ABA professionals should not be complacent because they have the best score of anyone else. Best doesn’t mean perfect. If my child came home with a 47% on his math test, I would not rest and say, “Well, this curriculum is the best so lets continue to work with it as is.” I would demand more. ABA needs to set up more accountability among its professionals. I have heard of school districts sending a teacher to a weekend workshop and then proclaiming that they have trained ABA professionals. ABA organizations need to step up to the plate and stop this. Yet, I don’t feel comfortable enough to raise these issues within the ABA community. If I do, I am accused of watering down the science of ABA or of “just being a parent”.

It isn’t like the biomedical groups are a safe haven either. We worked with a medical doctor who slammed ABA every chance he got. ABA was and is the corner stone of Lukas’ recovery. It deserves more respect than that.

I am also disheartened at the attitudes among the different ABA camps. You have your Verbal Behavior people, your “carbone people” , your “fluency instruction people, The “pivotal response” people, the Lovaas people, the incidental learning people, etc. All of these people are ABA. All of these people are grounded in science but they are causing harm with their “if you don’t do ABA my way, then you are against me” attitudes. We had Lovaas based consultants but I could see where Lukas could benefit from Fluency Instruction and Verbal Behavior. We , as parents, already did a lot of incidental learning in our daily parenting. Unfortunately, funding may be the major reason that we are pitted against each other. I was the parent who was mad at hell at my Lovaas consultants and basically kept a second data book with some verbal behavior hidden so that I wouldn’t have to explain myself. Was this an overreaction? Perhaps. My consultants were reasonable enough to accept good ABA as a part of their program but I was so bloody tired of justifying my every move and every act that I decided the sin of omission was easier than providing yet another set of data to prove our theory.

I also don’t feel like other parents of special needs children really know what I feel. A Down’s parent doesn’t have recovery dangling in their face. This isn’t to minimize their struggle. They have them. It is just a DIFFERENT struggle. A Downs Syndrome parent doesn’t live a lie and think their child is normal for several years. An ADHD parent doesn’t struggle with language. While these two types of special needs parents get the hardships associated with school systems, have an understanding of how your own child can drive you nuts , they don’t understand the stress associated with autism. I talked recently on the phone to a mother of a bipolar/ADHD child. She asked me about a doctor that she was going to see. I laughed when I heard his name. I had a nickname for him: Dr. Prozac. Virtually every parent of a child with autism that went to see him walked out his of office with a prescription for Prozac. I told her that he was well known for working with children with autism and giving them Prozac. She immediately chimed in “well, Jacob doesn’t have that. He isn’t one of them”

There was something in her tone. It wasn’t just a pronoun she was using: that. Them. It was a “My label is better than your label” tone. She might as well of said , “My son isn’t one of those nasty autistics. He is only a homicidal ax murder who we all know has a future when he outgrows his problems. Those retarded autistics don’t outgrow their problems. They are mental defectives.”

I have tried other lists for special needs children. I chose the lists based on descriptions of their children: problems in communication, problems with social skills, problems with nonverbal language and auditory processing, smart but don’t test well.

It has been the same. The scarlet A is so feared on those lists that the topic seems to come up in several ways and most often it ends up being an ABA bashing, Autism bashing feast where an entire population of children who are struggling are bashed just so their child with the “better label” doesn’t look bad. That was Lukas they were talking about. One woman wrote how her precious daughter who lined up her toys constantly (but she is just doing Geometry!) was to be placed in a classroom for special needs. The mother saw an autistic in the classroom and there was no way she would want her daughter in a classroom with one of those. How sad. If she knew Lukas’ label, she wouldn’t have wanted her daughter in his class. Even though her daughter had more issues than Lukas, I found myself angry with this woman. I was disgusted with her lack of empathy and her arrogance.

She is one of the reasons I hide Lukas’ label.

So, I go through life not really feeling like I honestly belong anywhere.

For the real world, the world I walk in every day, I pretend. I pretend to not be a parent of a child with special needs. I pretend that three years of my life never happened. I struggle with letting go of Lukas and not dissecting him into parts. I am learning to let go of the idea that I need to be engaged with Lukas 24 hrs a day, 7 days a week. I pretend that Lukas has always been normal. I pretend to not think NT parents are frivolous. I sometimes wonder what Lukas will do when he learns the truth. We plan on telling him when he is ready. I don’t believe a 7 year old can understand autism. Degreed Autism professionals can’t even agree on the subject, how can a small boy with a naïve belief that the world is kind and everyone really loves each other understand this? I sometimes laugh at the great lengths I have gone to protect Lukas’ privacy. When he fully learns the truth, he may decide to tell the whole word and my years of silence will have been for nothing. On the other hand, he may chose to see it like a passing illness or a private affair and he may not want to tell anyone. Either way, I hope to give him the ability to chose. This is why I go on acting as though the last few years didn’t really happen.

Perhaps, this is the reason I have not thrown out my volumes of paperwork, data sheets, and programs. Maybe this is why I am writing this website. It is confirmation of who I am and of the last three years of my life.

I am a pretender.