Preface: It has taken me more than 1 full year to gather the courage and the language to agree to speak to parents on the topic of autism. I stepped into discussions with professionals with only some trepidation and managed to survive. Parents are a whole 'nother ballgame. The stakes are much higher all the way around. The language is different, the emotion is different and the perspectives are different. The language part of this parenting thing is still exceedingly hard for me to wrap my head around. I am only just now able to speak to my emotions on any level, and anyone who is a parent knows that the emotions that come with parenting are intense. My hope is that by writing, I will be able to connect my thoughts enough to make my upcoming presentation a benefit to other parents for taking the time off and spending the afternoon with me.

This story and the words within finally came forward by spending 2 full days in complete isolation on my farm, staring at pictures and connecting data. It caused me to experience partial shutdown, but I am told that this is worthwhile and that these words will have a meaningful impact.

Today when I talk about our story with my adult daughters, they both agree that there was something very different about the way they were raised compared to their peers. But that something different is not just one thing that we can easily articulate. With this article, I attempt to capture the differences while still telling the story.

This article is written as a "labor of love"... love for my children and love for all the children in the world and their parents who take the time to learn by reading these humble ramblings.


Parenting ASD-Style, Part I:

Both of my children were unplanned (I will even say “unwanted”). Before my pregnancy, I was headed for West Point. I had the paperwork completed and was well on my way. I got pregnant while in the US Army and attending the Defense Language Institute in CA . I did not desire children until well after I had an established career, and I took birth control assuming that this tactic would work. Alas, it did not, and I stared in disbelief at the paper the nurse was holding with the news. I was wondering just how I was going to get out of this now. My first instinct was to abort and I quickly started the counseling sessions to do it. I could not follow through with the process. To this day, I cannot tell you why exactly, but I do remember dreading the sessions. I think it was not a moral reason. I believe it was more because of my fear of doctors and surgery, and I figured I could avoid all of that by just not dealing with it, at least for 9 months.
And so it was that I officially became Mother.
I hated pregnancy (both times) and was not very thrilled with parenting an infant for that matter. After the delivery of the firstborn, I was told I had less than 24 hours before I would be sent home. I was so physically worn out that it was my instinct to rest during this time, so I refused the offers by the nurses for me to see my baby. I assumed she was sufficiently cared for and I needed the rest so I could take over the job after I was discharged. Apparently that is not expected behavior by new mothers and so I was visited by a shrink. I had to explain my logic. Then I yelled at him before agreeing to hold my baby. It made me very angry.
My first child was a HUGE shock to me. She was colicky and spent the first 3 months of her life on a schedule of 4 hours of screaming followed by 2 hours of sleep. I was so physically exhausted during this time that I knew I would never do this again. My entire life was turned around and nothing that I knew was anymore known. I had to work hard to adapt and to figure out all that this job entailed. I made every single mistake one can imagine, pinning her with diaper pins, banging her little head as I walked through doorways (did I mention ever how my proprioception skills suck?), but she survived and so did I and we started to really like each other. In fact, by the time she was 6 months old, I knew that this person was my liability, my responsibility, and her very life was dependent on how I developed as a person. I stepped into this role, researching everything I could about parenting and stepping outside of my own comfort zones so she could learn. I watched in fascination and with great pride over the years as she developed language and independent/critical thought skills that exceeded those of many adults I knew.
She was funny and fun, and when I held her, I had pain for how much she meant to me. It hurt my heart and my head to think of her and it nearly rendered me helpless to think of anything ever happening to her. I remember being confused by this because it was like she was a physical part of me that I had no control over. I had never before and have never since felt as I do as a parent. In fact, this is why I describe love as an intense combination of happy, sad, mad and scared.
VivaLaDifference1.jpg


Parenting ASD-Style, Part II:
Then just 13 months after my first daughter was born, I got the news that I was pregnant again. Again, I was on the pill. As I sat in the doctor’s office hearing the news, I again faced decisions. My marriage to the father was not super strong, and I did not know if I could handle the pregnancy and infant thing all over again. Again I considered abortion. Ultimately I did decide to go ahead with the birth, but I arranged for having my tubes tied at the same time since the whole birth control thing was obviously not working.
And again I hated the pregnancy, but 10 months into it, my second child entered the planet.


Viveladifference2.jpg



My first child had come a month early into the world, screaming her little head off. She was the loudest baby in the nursery. Everyone was drawn to her as she was highly active (demanding), engaging with everyone from the moment she entered the world. She essentially owned this planet from her first breath. This second one had to be coaxed out after 10 months and she came only 1 day before they were going to force her out. She came out silently with a team of concerned specialists all standing by to make sure she was okay. They whisked her away as soon as she came out and gave her breath as well as a thorough exam. She cried a little but soon stopped and was put in the nursery, where she slept most of the first 24 hours of recovery time. And she slept right away for 8 or more hours a night when she got home. What is more is that she only really bothered to make any sort of fuss or noise when she was hungry or messy. She was so much easier to take care of. She, too, was beautiful and attracted a lot of attention when we were out, but she did not engage with people like the first child. I remember telling everyone that she was a thinker, not a talker.

I often said that no two children (from the same genes) could have been more different than my two girls. Gwen came out early and was tiny. She always was in the lower percentile for her age in size. Casey (the second child) was a big baby and physically on the upper percentages of the growth and development charts. She slept at least 8 hours a night, and during the day she did not speak or make noises much at all. I had to play differently with her than with Gwen, but this did not send alarms to me. In fact, I was grateful for how easy she was after experiencing Gwen’s colic episodes.

Casey was a tiny bit different than the books all said a child should be, but I was fine with that. She banged her head and hummed every night to go to sleep or when she needed to relax. She wandered aimlessly and dangerously when we were out in public. I had to resort to putting her on a leash when we were out or I had to watch her with much care. She was never “with” a group. She did not engage in traditional ways (demand very much), choosing instead to sit in her baby seat and observe the world. Since this was something I related to, I was again fine with this. Her sister and I learned to communicate with her, and her sister actually stepped in to speak for her since others could not communicate with her as we did. She took “baby Casey’s” hand and guided her in this world that she just seemed to “own” from day one. They fought like crazy as well, but make no mistake that Gwen was protective of her sister. It was so obvious that when I asked Casey’s pediatrician about her lack of language (nearly 3 years old at the time), he was convinced it was due to her sister doing so much “for” her.

As she grew up, Casey struggled a bit. She had horrible motor skills and processed everything very slowly. Even after she started to speak words, she still did not speak very much. In fact, she did not say much all through grade school compared to her sister. My friend always said that Casey was quietly growing her roots and that one day we would see an amazing bloom from her that would surprise the world. I agreed with that assessment and respected her unique ways.

Casey was awkward physically and also apparently socially, but I did not notice the socially part. In fact, when she was bullied over and over again no matter which school she went to, I was highly confused but still held firm to the belief that it was the other kids' fault versus anything to do with my child. Even when, in 1996, she was singled out of her mainstream class by the Speech Language Department, I was confused and subsequently angry with them. How dare they think my daughter needed behavioral or language therapy? I do not remember the full conversation of that meeting, but the gist of it was that I told them (in no uncertain terms) that the behavior part of my children's upbringing was MY job. Their job was the algebra and science part. I forbade them to place her in any classes or services or to label her in any way.

It seemed that many of the parenting skills I had learned for the first child did not play exactly into this second one. I had to develop new strategies to help this one while still growing both of them into the best people they could be. And that is what I did. It NEVER even once occurred to me to do this by thinking of one as disabled and the other as “normal.” To me, they were both just different, and I accepted wholly who they were as individuals. They were my friends (my little buddies) first and foremost. I saw them as people and as with all people, I do not expect sameness. I catered to their individual strengths while ever seeking ways to help them improve in the “important” parts of their lives. Their confidence, self-esteem and self-respect were important to me. Their safety was important to me. Their development into passionate, caring, objective people was important to me.

All the rest of the stuff was the “little stuff”... (stuff we were aware of but did not spend a lot of time fussing about).
As far as language and speech milestones... I never believed (and still do not) that words are the only way to communicate. We communicate with our internal energy to one another in much stronger/more powerful ways. Casey gave me her physical attention when she had it to give, and was in her own space when she needed to be. I respected this need and understood it, so this never even once made me worried. In fact, as I watched her, I actually started to worry about my firstborn (Gwen). She was so “needy” in contrast to Casey that I wondered if she had some sort of pathology. (I swear this is true and even today, Gwen is known in our family as the “needy one” due to my initial confusion about her. It is the subject of many jokes.) The whole not speaking thing was never a weakness, as I could communicate just fine with my daughter. As such, the actual “verbalization” part was put with all the other “little stuff.”

Parenting ASD-Style, Part III:

EarlyYears.jpg

By the time the girls were 1 and 3 years old, their father and I were done. I honestly do not recall the reason for the divorce but I was fine with it. He did the weekend father thing for a little while, but eventually left us entirely without ever communicating to them. I call that abandonment, but it was intuitive somehow to me to not speak that word or any “bad” words about him to the girls, out of respect for them. His actions were just filed in with all the other “people are idiots” (or confusing to me) bucket. I figured that when they were older, they could make up their own minds about the situation since I had no good words to describe it.

So it was essentially just me and the girls in those very early years. I remember standing outside of our humble apartment in “Felony Flats” with my heart beating in my throat when I realized I was the only one liable to these two precious little lives. And I determined in that moment that I would be their rock, and that these two children would have the very best of everything I could give. And whenever the times were hard, I went back to that moment and basked in the determination and promise to these beings that were of me, but not me. These beings that were my legacy and this planet’s future. And with that thought, I was flooded with gratitude and the work was always somehow possible….

When I look back on it, there really wasn’t a whole lot “normal” about the way we lived, though at the time it seemed normal for me. For one thing, I do not watch TV as a rule so mostly there was no TV in our lives. When we did have TV in the house, it was only the very basic stuff and it was very limited. This meant that when we were together, we were most often engaged in play. I worked a LOT of hours but when I was home, my children were my priority and they had my focus, which lasted until they were in their teen years. This meant that we spent a lot of time at parks, taking walks, going to kiddie events, zoos, etc. I had no life outside of my work and my children and that was fine with me.

Another interesting thing is that there were not a lot of rules in my house that most homes tend to have (this still holds today actually). I think people call these “culture” or “society” rules. I never saw those as important. There were no rules, for example, about furniture or what you could do with it or where it went or how it was used. I actually had furniture back then (because their father had shopped for it) and we used to regularly play “don’t-touch-the-floor tag” on it. In this game, you jumped from couch to chair to coffee table, chasing one another around the house playing tag. If someone fell off (touched the floor) they were “it.” We wrestled, ran, slid, and played games in the house as we did outside. We even strung a volleyball net across the family room and played volleyball-type sports. When the girls were in grade school, I allowed them to decorate their own rooms (Gwen once did black walls) since I seriously never cared about interior decoration. One winter, I even brought my motorcycle into the house and rebuilt the engine right in the great room area. There were engine parts all over the place for several weeks. Why not? It was warmer in there and I wanted it finished by spring.
And there really were not normal social rules in my house either. My general philosophy in parenting was to treat my children with the same respect I would give any human being whom I respected, and demand from them the same very high level of respect. Of course, I instilled basic manners and ‍‍‍‍‍polite skills with black/white rules around them. But to the point, I specifically did not have this distinction that adults are superior to children because they are adults. When I had friends over, my kids joined us for our conversation whenever they felt like it. I did not really have a different language for the kids as I had for my friends. As a result, my kids talked to adults quite naturally, just as they talked with me. Respect was not granted just due to age or title to anyone. My girls joined in debates and spoke their opinions and commanded respect in my circle of friends, sometimes much to the their amazement. When I had a party, they were there, even when they were very young. Perhaps this was a bit in poor taste, but I did not see the logic in shielding them from something so perfectly natural as some responsible drunk night fun. When they were teens and had earned their driver's licenses, I actually made it a point to call them in the middle of the night for a ride home from a bar. That way I demonstrated what you SHOULD do in that situation, and as an extra bonus, I owed them one.
My children earned privileges as they were capable by showing responsibility. I gave them a voice in decisions that affected them. I allowed them to make mistakes and caught them before they fell. When they could not step up to the responsibility of a privilege, it was removed. No fuss or long-winded lectures. No drama. We primarily discussed things like grown-ups do. Consistent actions based on logic, not emotion, created a simple but effective and completely fair system.
When Gwen was about 7, she asked me why it was a bad thing to swear. I personally swore a lot, so had no problem with it, but her questioned stumped me. I had no good answer for her. (Offending other people was not a logical/good answer.) So I told her that she and her sister could swear as much as they wanted around me. Of course, that meant we had to have the conversation about how if they did it outside of our house, that they may have to pay consequences because that world (out there) was not as logical as our world/house. So swearing became one of those “little” things that we simply did not care about. Today, my kids rarely swear and they never did take advantage of this opportunity that I can remember. But that may be because I swore enough for all three of us.

We regularly had debates with one another and practiced critical thinking skills. I taught them that what they think they know is insignificant to what they can learn. Learning has always been important to me. I modeled being their teacher but also their student, and they taught me every bit as much as I taught them. I actually credit them with all my success. I would never have worked so hard if not for the desire to be a great person so they would also be great people.
I made sure to spend quality time with them whenever I was with them, and I told them each night (no matter what sort of day we'd had) that I was happy they were in my life. We were truly like “glue” and they were my best little buddies. I was far, far from perfect, but my attempt was genuine and pure. Through the years, this glue held even when times were tough. Today, we are living far apart but we share the genuine, respectful, loving relationship that we had when they were children, and they still are my best buddies and teachers.



Parenting ASD-Style, Part IV:

workhard.jpg
We worked hard to stay fit and learn new things….


I was born in a small industrial town on the East Coast to a blue collar family. I learned my work ethic from my father. Never have I met another person who is/was so “on fire” to work as my father was. And like him, I set about to teach my children that same hard work ethic that is so much of what shapes us as people. I fully grasp that luck plays a piece in life, but it is my experience that the harder I work, the luckier I am. Success in this life really is little more than multiple intersections of hard work and opportunity.
The girls were about 6 and 8 years old when we packed our bags and headed for Los Angeles, where I was to start my career in high tech. In 1991, I got swept into what I now call “the roaring 90s” in the high tech boom. It was the most amazing job I could have asked for, but the hours and commitment required of us folks "in the trenches" was nothing short of crazy. I will always be grateful that I had enough youth and health to accomplish all that I did during this time. Many weeks, I worked upwards of 70 hours to stay on top of all the things I had to learn and to do. In order to be able to do this and still be a mom, I often brought the girls with me to work. They even had cots in one of the spare offices in the building where I worked, just off the Santa Monica pier, so that they could sleep over when I was working. It was grueling but it was also fun. The girls became friends with my friends and also made friends with their children. They learned how to test computer software during those days and became comfortable with the latest technologies. But it wasn’t all just work. They had their toys and books along and we played many a game of tag in the empty aisles when I was pulling one of the many "all-nighters."

I think it can be said that my parenting style was somewhat rigid. I did not bend rules so much nor was I inconsistent in what I asked for from the girls. For the most part, if something was a rule, it was always a rule. I did ask them to work. I expected the girls to do things such as their homework and chores. I made them participate in sports and try new things, even when the new things were scary or boring. I made them practice basic “polite” skills outside of the home. (Do unto others, please, thank you, etc.) I made them learn and use proper grammar before they could use slang. I taught them to give and to have gratitude. Many of these values where somewhat old-fashioned, but they seemed "right" to me. I expected them to work to reach their potential, whatever that potential was. They were amazingly well-behaved and respectful young people. I often received compliments from complete strangers about them when we were out and about.
And every night when I tucked them in, I told them how grateful I was that they were in my life.
(And I really was….)


Parenting ASD-Style, Part V:

PlayHarder.jpg

But equally important, we played harder because if you do it right, there are infinite amounts of things to experience and learn from play.
In my view, there are two kinds of playtime activities. There are those sorts of things that you do that ultimately grow you and produce something, and then there are those that ultimately do nothing more than potentially relax you. Watching TV or playing video games would be the second kind of activity, and I tried to limit my total exposure to that sort of thing because if done properly, the other kind can also relax you. We are given a finite amount of time to be on this earth in this shell, and it does not make sense to waste any of it. Instead, it seems wise to do things that can both relax you and ultimately be productive. As an autistic parent, I was keenly aware of the importance of finding “obsessions” and made it part of my parenting agenda to expose my kids to many activities in an effort to help them find their obsessions, because in our obsessions, we find also our inner selves.
And so it was that our family spent a lot of time both outdoors and in active play….
Another one of those normal house rules that never applied at my house was about dirt and mud. I always figured that if my kids were not covered in something, they were not experiencing the world. An added benefit of embracing dirt is that dirt is cheap entertainment. I did not have much money in those early days and so we did things that cost money only judiciously. This really was not a problem for me. I happen to know that the best things in life are free if you look for them. No matter where we lived in those years, we always found parks, beaches, mountains and other natural places to explore the most amazing teacher of all, “Mother Nature.” I do not believe the girls had any clue just how very poor we were because it did not really matter. Ever since I was a very young child, I have been drawn to the earth. Every place I have lived has different smells in its soils. As a child, I would spend hours watching dirt fall from my fingers and enjoy the smell and even taste of it. Sand, clay and slime are all equally good to me.... As a child, I was outdoors more than indoors and it was not much different for me as an adult.
When the kids were younger, we took walks, went to the beach and did smaller day trips. As they got a bit older, we mostly packed our backpacks and sleeping bags and took off for the woods on Friday night, hiking far, far in (where there were no other people) to spend the weekend. We did not do any (that I can remember) typical long-distance traveling vacation sort of things (except to visit family), but we did make use of our weekends with smaller trips to all manners of places. Besides the benefit of connecting with nature and learning to respect all creatures, my girls learned to be athletic through these activities. This was especially important to Casey, who suffered from very bad motor coordination and reaction times. I am convinced that she would never have been able to drive a car if not for the bikes and motorbike activities that I set up for them and participated in with them. Biking and, later on, motor biking and four-wheeling were excellent precursors to driving. Nature provides us the perfect “gym” and “occupational therapy” type settings. We balanced our way over creeks, climbed rocks, hiked hills, walked on paths with lots of rocks, waded, swam and generally moved our bodies. Once we arrived at our campsite, we had to set up tents, fish, collect firewood, make fires, etc…. All of this stuff requires motor coordination (fine, even) and balance (proprioception). It also requires teamwork and active group participation while allowing for plenty of quiet time. Nature also provides the perfect museum. Around every corner is a chance to touch, smell, see and hear new things. It teaches us respect for other living things. This planet has so much to offer those willing to explore…. Mother Nature is the greatest teacher of all. She speaks volumes and she provides us with peace. It is no mistake that I ultimately ended up living on 40 remote acres in the foothills of the coastal range.

Parenting ASD-Style, Part VI:

RoleModels.jpg


Sometimes it happens that an incredible human being comes from really bad environments and role models. But that is not likely. It made perfect sense to me that I had to become a really, really amazing person if I wanted my children to become really, really amazing people. And so it is that during my tenure as a parent, I consistently worked to be and become the person I hoped they would one day become. This does not mean that I did not allow them their own choices or individuality or that I expected them to reach as high as I could reach. Nor does it mean that I was or am perfect (far from it, in fact). I only insisted that they reach for their own stars within their own abilities. I was a US Marine/linguist, math major and computer scientist for most of their youth, largely ignoring art and the arts. Both of them fell strongly towards the arts during their lives, and I not only allowed it but supported it in the ways that I could. They enjoyed pop culture, acting, singing and music lessons of various sorts. Gwen eventually got a degree in theater arts. Casey found her passion in language/culture and pursued her undergraduate degree in that field. I always told them that they should do what they love to do and who they will “be” will just happen. Choosing a career is not about making a living. It is about living. It is not about being something. It is about being.
My Role Modeling Values:
  • Mentoring is important (teaching, learning)
  • Giving/volunteering/community (teaching, learning)
  • Work hard
  • Play harder
  • Health matters!
  • Be outdoors. Nature teaches – go to class (outside) as much as possible (learning)
  • Try new things (even if it is scary/hard...) (learning)
  • Live life as if every day were your last

As a person, I am a learner, so most all of my role modeling values tend to center around learning and teaching, even though I have never been a formal teacher and have very little formal schooling. Interestingly, both of my daughters (now 27 and 29 years of age) are teachers/tutors/mentors with advanced degrees. They, too, live as perpetual students. And even though they have different interests than I do, they now very much model the values that I modeled to them.


Parenting ASD-Style, Part VII: