Wednesday, February 24, 2010

Can you see what I see?

 "Ready or not, here I come!" is a phrase that echoes around the country in house after house to the delight of many a child.  I don't know the history of the game, but I can only guess that hide and seek has been played in various forms around the world for centuries.  Requiring nothing more than willing participants, its simplicity makes it readily available to all who are mobile.  The thrill of the search and that of hiding is irresistible to young, giggling children.  Prior to having my son, I took for granted how hide and seek requires at least one innate ability and that is theory of mind.

If you delve into research about autism, you are likely to encounter the term "theory of mind" (ToM).  Simply put, it's the ability to understand another person's perspective which leads to understanding and/or predicting their behavior.  For those with autism, they often have what is sometimes referred to as "mind-blindness" because they often have a difficult time understanding or perceiving another person's perspective but their own.  See Wikipedia's explanation for more details:  From my own observations of my son, it seems that this mind blindness occurs two ways:  his inability to understand another person's perspective and his inability to realize that another person doesn't always know his perspective.

 I have played hide and seek with my son off and on for years.  Each time, I've been amused by how he plays the game.  Until today, it didn't occur to me that the reason he plays it the way he does is because of mind blindness.  When my son hides, he often hides in almost plain sight and almost routinely hides in the same place each time.  What I didn't realize until today is that, from his perspective, he believes he is hidden because he can't see me.  His hiding in the same place every time is also related to mind blindness because he thinks he is hidden and doesn't consider that I might predict that he might hide there again.  As far as he is concerned, he is well hidden. 

After discussing this with his psychologist today, she suggested that I work with him on this game, to suggest more than one place to hide and how to hide well.  As she put it, it would be "golden" if I can teach him to play the game as it is intended, thus improving on his theory of mind.  Assignment in hand, I came home and began playing around with ways to teach him the game and I stumbled upon a great website:  This free site allows you to create cartoons.  In just a few minutes, I was able to create a cartoon of a child playing hiding and seek with the reader while instructing the reader how to play.  My son read it with me and was quite amused by it.  Shortly after reading it, we played hide and seek together and, although he still has a ways to go, I could tell he had learned something about the game and I could sense that, with practice, there was potential for him to understand the game.

Having a child with autism (or any special needs child, I would imagine) highlights many things we neurotypicals (NTs) take for granted.  From our ability to tolerate sudden, loud sounds to being able to play a simple, childhood game of hide and seek, our NT world is almost blinded to that of those who lack common, innate abilities such as ToM.  As I work with my child, I find that my ToM has to be modified to understand the mind of my son's, to recognize how our perspectives differ and to help bridge the gap between our worlds.

Tuesday, February 23, 2010


Life to me is intriguing, magical and mysterious.  It can be beautiful and also brutal.  Rather than search for answers for why life is as it is, I prefer to respect it for what it is.  I feel everyone has a story about how their life crossed paths with another in ways that, at the least, caused them to pause and, at the most, led them to praise God (in whatever form they found him/her/it), the unknown, or fate for their introduction.  In my own life, I have had many of those moments.  Tonight, as I read an article my father-in-law (FIL) has just had published, I am yet again humbled by life's mysteries.  I'm also intrigued by the path that I have taken which has led me to this very moment, particularly the one that led me to being the parent of a child with autism.

My father is a retired psychologist.  My husband's father is a psychologist.  I have a BA in psychology.  You know what they say about too many psychologists in one's family?  I don't know but I'm sure it's not always good.  Seriously, though, I was raised in a family that was accustomed to self-reflection.   I'm pleased to say that my father, as a practicing psychologist, never was one to arrogantly carry his profession around with him like a stamp of omnipotence.  Not only is he too humble to think he understands everyone and all their motivations, he isn't interested in delving into people's minds for the sake of exercising his "powers."  If anything, my father has always been a tremendous resource for people seeking assistance.  He has such a natural way of helping people get through difficult times without making them feel inferior, and he helps them find their own strengths and inner guidance.

Out of respect for my father and for a love of people, I became interested in psychology only to become disillusioned by the professors I encountered and their immense egos.  Perhaps I simply didn't have what it took or it just wasn't the right path for me.  Either way, my education, albeit limited, has come in handy over the years and I find myself recalling several of my classes as I work with my son.

My husband and I were amused when we discovered that both of our fathers were psychologists.  We weren't sure if that was a good thing or a bad thing at the time.  Mostly we found it odd.  I soon learned that, unlike my father who provided therapy to people with a variety of mental illnesses, my FIL is a clinician, a data cruncher so to speak.  In one of life's interesting twists and turns, he began working in an autistic research group at the university near where we live shortly before our son was diagnosed.  The article I was reading tonight is an article in which he is the lead author.  I can't help but pause.

The article he wrote (along with a team of other psychologists which he would want me to point out) is almost indecipherable to anyone unfamiliar with genetic terminology.  I am grateful that he summarized it for me prior to my seeing it because I would have had to do some research to understand the title itself.  Although I'm tempted to explain the study, I realize that for most a description would be tedious.  To summarize the results, the study discusses how it may be beneficial to search for genetic risk markers for specific ASD traits rather than for a global genetic risk markers for ASD itself.  My understanding from him is that previous research has failed to consistently find the same genetic risk markers in different populations.  His research is focused on two specific traits ("insistence on sameness" (IS) and "repetitive sensory-motor actions" (RSMA)).  In this particular study, the genetic risk markers for each trait were linked to different regions with little overlap suggesting that perhaps these ASD traits have their own unique genetic markers and, thus, ASD may be a collection of a variety of genetic traits. 

Of course, that is my understanding of what my FIL explained to me and what I understood from the article.  Either way, I find it fascinating to think that my son's condition may be due to a variety of genes contributed from both sides of our family.  My life and my genes crossed paths with that of my husband's.  Together, our genes passed on to our son and now we know that part of that result is that our son is autistic. 

As I said previously, life is mysterious and magical yet it can be brutal.  Although I am often saddened and even angry that our son's life may be more difficult that most due to his autism, I try to accept it for what it is because this is the path we are on and the best we can do is use the tools that we have gained over our lifetime to help him prosper.

Monday, February 22, 2010

My true love

When I met my husband years ago, I had lost my way.  I had no clear future, my past was a mess and I really didn't feel like I had a lot to look forward to except more uncertainty.  Despite reports that he was a risky prospect, I fell in love with him and he eased my anxieties and banished my fears.  He earned my trust and my love.  For some crazy reason, he fell in love with me.

We married and dreamed of our life together.  We knew early on that we both wanted children.  We found out soon that having children wasn't going to be easy.  Our first struggle as a married couple was that of infertility.  We endured the stress of in vitro fertilization (IVF) several times and we now have our 3 sons who wouldn't be here if it weren't for amazing technology.

Since then, we have been in the trenches together.  IVF was very emotional, exhausting, overwhelming.  Our first son, whom we only found out at age 5 was autistic, was challenging and things just didn't go as we had thought.  Of course, all parents feel this way but we can safely say now after having twin neurotypical (NT) children, there is a difference.

Over the past 5 years, both of our hearts and souls have been poured into our family.  99% of our emotional energy has been focused on our children whether we wanted to or not.  We have been tirelessly dedicated to our children but our marriage was feeling the strain.

Our home life is often profoundly stressful, particularly when we simply can't figure out what our oldest son needs.  When we are both being challenged to our core as  individuals, it is hard to muster the energy to care for the other since we both are feeling similarly.  All along I knew that to ignore our marriage was treacherous and was ultimately unsustainable.

Now that our son's condition is being managed better by us and by professionals, we are finally rediscovering ourselves.  We are such an awesome team.  I can count on my husband like no other.  As much as I wish we had more time together, I cherish the fact that we've done this together.  I am so proud that my husband is the rock solid man I married almost 10 years ago.  I wouldn't trade him for the world.

So, for those in a similar situation, try to find the time.  It's so hard to do.  For us, what works is a bottle of wine shared together after the kids go to sleep, good music and good conversation.  For others, it might be watching a movie together or doing a project together like old times.  These moments are priceless and are essential.  I, for one, am dedicated to my husband and our marriage and I'm not going to let anything threaten that.  It's so important to just remember that love you share, to let that feeling of love fill you up.  It will radiate out to the whole family and will help lead your family down a more peaceful path no matter how difficult life may be.

Sunday, February 21, 2010


Before my son was diagnosed, my husband and I found ourselves confused, frustrated, angry, depressed.  Why was our child behaving like this?  We struggled to find ways to help him.  I'd read parenting books trying to find ways to help him.  I frequently laughed at certain suggestions on how to get him to behave.  They simply weren't writing about my son.  We often struggled with the feeling that we had no clue what we were doing, that we were creating the chaos ourselves.  We also struggled with the idea that our son just wasn't a very nice person sometimes.  When we weren't blaming ourselves, we were blaming him and vice verse.  Thankfully, we know now that there is no one to blame and we have to forgive ourselves for our previous ignorance.

In just a matter of months, our strange world began to make sense.  At times, I find myself fascinated by my son's condition.  I often step back and observe him.  I have a chance now to understand his perspective better and I am significantly more patient with him.  What before would lead me to head banging frustration, is now more easily understood.  Although our world would not make sense to many, what is important is that it makes more sense to us.  It is from this perspective that we are more prepared and equipped to support our son and his brothers.  When you have a child with autism, everyone in the family is affected even if you're only 3 years old.

Our family is and will continue to be a place of constant adaptation and compromise.  Already, his young brothers understand that certain toys scare their older brother, that the sound on a certain train is too hard for his ears.  Once they understand that a certain toy can't be near their brother, they have been very good about not playing with them near him. 

Likewise, our son with autism has had to learn that his brothers can watch certain shows even if he doesn't like how they sound.  He has to go to another room or floor if the sound is bothering him.  I will admit that he doesn't do this without a fight sometimes because hearing a sound that bothers him can unglue him somewhat and any subsequent, rational discussion gets tossed out the window once his anxiety kicks in.  If, however, we can avoid him hearing it prior to its being turned on, he often willingly leaves the room to avoid the sound.

My husband and I have had to compromise endless things to accommodate our son.  Activities that we would like to do are not possible at this stage in our son's development.  For instance, we could never take the whole family to a movie which would be terrifying to our son.  Often, it is a struggle to take him anywhere that doesn't involve trains, planets or some other interest of his.  Trying to make a child with autism do something they don't want to do is so exhausting that we intentionally don't try to do more things than entirely necessary.  We're happy if our son is pleasant and cooperative at home and we often prefer not to rock the boat unless we really need to.  Unfortunately, this limits our lives at this point but we don't intend for this to be permanent.  For now, though, we have bigger fish to fry so to speak.

Our son is learning to adapt to our family as well.  Although autism has no cure, we are doing our best to teach him to behave in a more acceptable manner.  For instance, our son is incredibly intense.  Like a flip of a switch, he can go from extremely happy to profoundly angry.  Boom.  "We're there," is a phrase we frequently throw out to indicate our son has gone into "Aspie mode" which typically involves yelling.  Although our son may not be able to control his mood swings, we expect him to change his tone with us if he wants us to listen.  Using the 1-2-3 method, we immediately say, "that's 1" as soon as he starts and usually he apologizes and begins in a better tone although he often gets worked up again right afterward and so we count some more.  Although it takes a while to communicate like this, we're making progress because he is consciously modifying his tone even if only temporarily.  Neither my husband and I can tolerate being yelled at (and we shouldn't) but people who don't know our son have no reason to tolerate it and could possibly respond aggressively to him.  For his own protection and for his chances for a happy life, he will need to continue to adapt.

Over the last few months, I have felt myself changing, and I have begun to redefine what I perceive as normal.  Our normal is not the norm for most people.  I'm learning to not only accept it but, at times, even embrace it.  There are certainly very cool aspects of having a son with Asperger's.  I love his mind, how brilliant he is.  He loves to learn and inhales knowledge like no one I have ever met.  I love to watch his face light up in wonder when he learns about something new.  It's addictive for him and for me.  I love how he is ferociously protective of his brothers even if his brothers don't appreciate it.  When he latches on to a rule, there is no way he will break it (although this can be tricky if the rule needs to be changed).  He is incredibly loving and tenderhearted with real as well as pretend people and objects.  When he is happy, his joy permeates everything. 

Would I want a cure for my son's autism?  Not if it would change him so profoundly that it took away his magic.  Of course, I would love for him to be happier, for him to have real friends instead of pretend ones, for his anxieties to lessen.  Even as I struggle to understand him and even as I worry about his future, I love him for who he is even if he tests me in ways I have never been tested before.  I can't describe how painful it is to feel so helpless, to feel so inadequate as a parent.   From that, though, comes insight and wisdom.  I owe him the strength he has given me.  I love my son autism and all.

Wednesday, February 17, 2010


One might say I have become a bit obsessed with reading about Asperger's and autism in general.  On my night stand is a rather large stack of books, some of which I have begun reading while others are waiting in line to be read.  Ever growing,  perhaps the stack of books is a visible representation of my desire to understand my son.  With each sentence I read, I find I learn a little bit more but sometimes I find myself more confused.  I have to remind myself that I will be lucky to get a rough translation of his world.

One common problem I think parents of children on the spectrum have is trying to untangle what behaviors are autism driven (and therefore unintentional) and which are completely within their control.  We frequently find ourselves struggling to determine what kind of discipline to implement.  Is it fair to punish a child for a behavior that is neurologically driven?  Are we allowing our son to manipulate us?  I doubt we'll ever feel confident that we know for sure but I believe we're finding our way slowly and will hopefully be able to differentiate which behaviors that can be managed firmly and which need to be handled with a sense of compassion and open mindedness.

Over the last few weeks, we have regularly been seeing a psychologist who specializes in autism.  She is helping us answer some of these questions.  She suggested that we read Thomas Phelan's book titled, 1-2-3 Magic:  Effective Discipline for Children 2-12.  To be honest, when I first heard the title I thought it sounded rather cheesy.  Surprisingly, we have found it to be very useful.  Since we started using the techniques, we have found that all of our children are better behaved and manageable.  Another interesting side effect of using his techniques is that we have a better idea when our autistic son's behavior is within his control and is therefore manageable.  More than once, I've tried the 1-2-3 method on my son when I seriously doubted it would work, thinking that his behavior was Aspie related and out of his control only to find that he could manage his behavior more than I realized.  As a parent, I found this tremendously encouraging.  Of course, there are certain behaviors that have proven to be beyond sound discipline tactics.

The 1-2-3 method is very simple which makes it appear bogus because parenting is anything but simple.  Essentially, for behaviors you want to stop, you simply begin to count to three as the behavior continues.  When you reach three, the child is put in time out.  The key to it working is "No talking, no emotion" so that your child is not rewarded with attention of any kind, positive or negative.  With some of my children, all I have to say is "1" now and that's it.  Of course, for one child, he has to have a few time outs before he believes that Mommy or Daddy are serious.  Thankfully, my child with Asperger's responds very quickly to the 1-2-3 method unless his behavior is too difficult for him to control. 

By having such a simple and easy form of discipline, we are beginning to untangle our son's Aspie behaviors from regular 5 year old behaviors.  By reading book after book and applying sound discipline while observing its effects, we may be able to pin point those behaviors which need more professional intervention and those which can simply be managed properly at home. 

Tuesday, February 16, 2010

His Village

I find myself frequently recalling a passing comment made by a mom of a child with Asperger's that "our kids" (meaning our kids with Asperger's) may do what neurotypical kids do only ours do times 100. It's all a matter of degree. For example, when my son was 2 and later 3 years old, he had tantrums which were to be expected except his tantrums were unbelievably explosive and persistent. Now that my son is 5, he has been enjoying pretend play except his pretend play is incredibly detailed and seemingly endless. Although he has some understanding of pretend vs. reality, I'm concerned that the difference between the two is quite blurry in his mind.

It's not surprising for a child to have an imaginary friend who may occasionally show up for dinner. On the other hand, it seems a bit unusual for a child to have an imaginary village as my son seems to have. There is Holland, his imaginary sister who lives underground, Rato, a trolley train who is his friend and with whom he frequently converses, the Handy Helpers (thanks to Mickey Mouse) that are his own hands, Little Ant (any ant he sees that he considers a part of our family), Sue (any fly he sees who is also a part of the family) and so forth.

Not only does he have innumerable imaginary friends who have birthdays every other day and require (he tries at least) birthday parties, he has special jobs. One of our play phones in the house is the emergency phone that calls him to "save the day." He also gets frequent calls from his Super Computer letting us know various things such as that the brothers are at home playing (when we're not there).

Recently, at a party, my son suddenly had a case of massive, pretend hiccups. They were so powerful that as he intentionally hiccuped, he leapt in the air dramatically. Perhaps this would not be unusual if he didn't proceed to do this for at least 10 minutes.

I'm not concerned that my son is incredibly creative. I'm concerned about the degree to which he is immersed in his many self-created worlds. So many of my interactions with my son these days are confined to his little so-called realities. To try to bring him back to our shared reality is often futile and resisted because as he frequently says, "I speak the truth." Just as I am trying to help him grasp reality, I'm also trying to educate him about the difference between being honest vs. being accurate. That's another post in its entirety.

As we struggle to help our son, we are constantly reminded that we're in a different world than he is. Unfortunately for him, he needs to be familiar with our world in order to grow and prosper. Even if we help him channel his creativity in a helpful way, he will need to communicate with people who would not appreciate hearing about Rato's, the trolley's, birthday party every few minutes, for instance.

We're hoping that this focus on fantasy is just a typical phase of development that is exaggerated but temporary. As much as I love my son, I have only so much patience with endless discussions about things that simply do not exist. If I find it difficult to connect with my son when he is immersed in his worlds, how can we possibly expect strangers to appreciate him for the awesome kid that he truly is?

Saturday, February 13, 2010

Fill her up!

Yesterday, I spent a few minutes answering a survey by the Autism Society of America and SUNY Stone Brook which will be used to assess the perception of progress in children with autism. Specifically, it "aims to identify how families view hope, change and progress for their loved on with autism." (The study is described and may be accessed via this link:

The survey lists a variety of potential goals parents might have for their child with autism, including their ability to live independently, have friends, be happy, and so forth, and asks the parent to decide how important each of these goals are. Although my intent for answering these questions was to assist their research efforts, I found myself searching my heart for some tough answers. If I were unrealistic about my son's condition and the fact that it is incurable, I would have said that every goal was very important but I found myself saying it was less important that my son marry than for him to be happy for instance. I found myself addressing my frightful concerns about his future independence, his ability to make a living for himself one day. It's not that I think he will be incapable of either of those because I think he could one day but what scares me is that there are so many unknowns with autistic children. He may be able to make friends, fall in love, and live independently, for instance, but if he adopts a stigmatizing habit/tic which alienates him from others, such as employers and employees, he may not be employable no matter how awesome his mommy knows he is.

I might have forgotten the survey today had I not been reminded again of how my son is different from neurotypical (NT) children. My son had been invited to a Valentines party by a friend of my mother-in-law's (MIL). Although my son was one of the youngest kids at the party, his behavior was clearly not related to his age. I can't say I regret having taken him to the party because I feel it is critical that he be around NT children but I did feel more than once that I was asking him to be somewhere where he was too often uncomfortable. The sound of the children laughing and talking were too much for his ears. The games intimidated him because any game that has a winner and a loser is too much for him since he is almost handicapped by his perfectionism. One minute he would walk into the quietest room he could reach then the next he would be leaping with the children for balloons intent on playing alone among the many.

I had hoped that a child would take an interest in my son and put him under his/her wing so to speak but it didn't happen. He didn't understand them and they didn't understand him. With sadness in my heart, I watched from a distance understanding them all. I had thought that my goals were realistic yesterday when I took the survey, and now I'm concerned that perhaps they weren't. Either way, we have a long road ahead of us and I'm even more determined to try to bridge the gap between my son's world to that of the majority, the neurotypicals. More importantly, I need to help my son understand what makes him truly beautiful and amazing, to help build his character and strength while simultaneously help him identify his limitations and to learn strategies which will help him navigate the NT world more seamlessly.

After the party, my son was his usual happy self because, for him, there is no place like home. I, however, came back sad, discouraged and with a heaviness in my heart. I could sit and dwell on this sadness or I can use it to fuel my determination to help my son. I vote to fill her up!

Friday, February 12, 2010

Less happy Valentines

I've always been a bit of a holiday junkie. As a child and to this day actually, my parents have laughed at my enjoyment of the holidays. From making cards and crafts, decorating the house to dressing myself up like a fool for the pure enjoyment of celebration, I have always put all my heart into my favorite holidays. Although my family shared my enjoyment, I stood out because I really liked them. It wasn't until I met my mother-in-law that I realized that I could be out done on my decorating! She and I don't hold a candle, however, to my son with Asperger's.

I can't remember when it started. Perhaps it was the Halloween when he was about to turn 2. Even though the twins had just been born, we did our best to make the holiday a fun one for him. He dressed as a pumpkin, we made tons of crafts with both his maternal and paternal grandmothers. Since our life was a tiny bit insane with newborn, premature twins, we trick or treated in the house instead of in the neighborhood but he loved it anyway and, to this day, loves to watch the videos from that Halloween.

There would be something wrong with my child if he didn't like holidays. Unfortunately, due to his neurological condition, his enjoyment of the holidays often spirals out of control. From pure bliss to misery, my son almost becomes a victim to his own happiness as he becomes overstimulated and overexcited which often then leads to tantrums, melt downs and pure stress. We have witnessed this time and time again and we have rarely been able to help him avoid being too happy or too excited during the holidays.

Before I had children, I would fantasize about sharing holidays with my kids. I'd imagine telling them stories, decorating the house, making crafts and food with them. I often hoped my children would enjoy the holidays like I did. Never did it occur to me that I would have a child who enjoys them to the point that he makes himself and often those around him unhappy. There is nothing to me more fun and fulfilling than to share with my children the beauty and excitement of life, and it makes me sad that, in order for my son to truly be happy and to feel safe and secure, we have to dampen that excitement and the magic of special times such as the holidays in order to keep the correct balance for his sensitive neurology.

As Valentines approaches, I have deliberately not talked about the holiday too much. I've stopped myself from suggesting we do a fun Valentines craft together, although we did do a few. Unfortunately, my son is showing the signs that he's getting too excited about it. He was looking forward to his school's Valentine's party all week and eagerly ran into the school on the morning of the party. When I picked him up, he was on edge, yelling to be heard and visibly agitated. He did calm down but I know from experience that this excitement will return on Sunday as we enjoy a family get together at his paternal grandmother's house.

My hope is that we as parents can resist the temptation of being pulled in with his excitement because, if we don't, we are only setting him up for misery. In order for him to have a happy Valentines, we have to tone things down and make it less than it could be. We have to resist the temptation to not get drawn in even as we look into his eyes sparkling with excitement. In order to give our son a happy Valentines, we have to make it a less happy one.

Thursday, February 11, 2010

Our Library

My son was diagnosed October 1, 2009. Since then, we have purchased a new book on Asperger's, autism, twice exceptional, or something related to those about once a week. In addition to that, we have checked out and read numerous other books and we've barely made a dent in the number of books that discuss our son's condition.

A simple query for "Asperger's Syndrome," on Amazon yields search results of 1,279 books, 36 movies/tv, 144 Kindle, 8 VHS, and so forth. If you search for "autism," hold on to your hat: 5,173 books, 177 movies, etc. Not too terribly long ago, parents whose children were diagnosed with Asperger's had very few researches to which to turn. Fortunately, parents of newly diagnosed children now have many resources at their disposal. The difficulty now lies in determining what books will help us the most. Since Asperger's and autism manifest in a variety of ways, it's expected that one book will help one family and child while the same book won't be helpful at all for another.

Although my opinion of books is subjective and dependent on how it helps us understand our son with is own unique issues, I intend to post reviews of the books I have read in order to provide some information about what issues the books address as well as what we found beneficial about them. Since money is tight for any family with a special needs child, I suggest checking books out from the library where available then, if the book proves to be useful, purchasing a used copy of it if possible.

To start, it seems only appropriate to review the very first book we read when we suspected that our son might have Asperger's. This book was recommended to us by a psychiatrist with many years of experience with autistic children who thought, prior to evaluating our son, that it was possible he may be autistic.

Asperger's Syndrome: A Guide for Parents and Professionals by Tony Attwood.

As I flip through the book now to remind myself of its contents, I'm struck by my highlights, underlines, and hand drawn stars, exclamations and comments written in the margins. The book started our journey from ignorance to understanding, from confusion to validation. Initially, we focused on the chapter regarding diagnosis where he includes the Australian Scale for Asperger's Syndrome, around 30 questions covering topics such as social and emotional abilities, communication skills, cognitive skills, specific interests, and movement skills. After completing the questionnaire, we had a pretty strong indication that our son likely had Asperger's.

As devastating and discouraging as this possibility was, the book gingerly yet honestly led us through each chapter and explained what a diagnosis of Asperger's meant as well as the many ways it presented itself in children. As I flipped each page, I repeatedly recognized my son in his descriptions and often was simultaneously tearful and relieved to find an explanation for my son's unusual and bewildering behavior. Shortly after reading the book, my son was evaluated and the psychiatrist diagnosed him as having Asperger's. So confident was he that he joked he'd bet his house on it. Between a book that described my son and a well respected psychiatrist confidently diagnosing him, we had found the answer we needed and, although things are still difficult, our son has made progress in several areas of concern thanks to his being diagnosed and being treated it for it by dedicated and competent professionals.

Would I recommend this book? Certainly. I would definitely recommend it for a parent who suspects their child has Asperger's or for parents whose child has recently been diagnosed with it. It would also be good for anyone who loves a person with Asperger's who is interested in gaining a basic understanding of Asperger's.

Tuesday, February 9, 2010


I have struggled with insecurity as long as I can remember. I'm not sure why I'm insecure but I think it's partially due to my tendency to take others' opinions into account but, instead of maintaining my own position, I often find myself allowing their opinion to eclipse my own. Oftentimes, I passively accept their ideas while my gut screams out that "this" isn't right, whatever this is.

I can't afford to be insecure anymore. My son needs me to listen to my instincts. He needs me to listen to others but to hold firm to what I know is true. I'm not sure how I will do this but I know it must be done.

My son was evaluated by our school district this week. In a matter of hours, supposed experts have run tests on him and are beginning to form opinions as to what he needs in an educational environment. My sweet, darling boy sat quite compliantly (much to my relief) answering question after question after question. I was so proud as he showed off his stuff. The psychologist repeatedly noted how she had never gotten so far in an IQ test with a preschooler because she couldn't trick him. She kept trying and trying. She also had never had to hide the answers from a preschooler either because she figured out that he could read quite well.

I smiled and sat quietly watching this expert observe what I already knew about my child. He's brilliant. He's funny. He has a sweet, tender heart.

As the testing continued for hours, he started to become challenged, not by the questions they were asking but by the length of the examination. It's a lot to ask a neurotypical 5 year old to sit still for 3 hours but it's even more to ask of a child with autism to do that. I was so proud of him for doing it as long as he had.

Just as the experts were explaining the results of their evaluation to me, my son had had too much and he began to show his Asperger's. Like the flip of a switch, my son switched from being sweet and compliant to screaming at the top of his lungs that he wanted to go. Bam. We'd reached "that" point that we parents of autistic children all know.

The psychologist explained to me that she was ignoring his bad behavior. He got louder. Pretending to maintain our conversation, she continued to ignore him (and I him to see where this led). He got louder. Finally, I'd had enough and I decided this expert's ideas weren't going to work for me. I worked with him using my methods: I offered a "carrot" as I call them by telling him that he had already earned one scoop of ice cream (I had already told him we'd go to an ice cream parlor after this appointment) but he could earn another if he could be quiet a few more minutes. He tried but he was maxed out.

As he again began to scream and the expert continued to ignore him, we pretended to have a conversation. Again, I decided that this was getting ridiculous so I tried another method. I got a notebook out and told him to tell me calmly what it was that he wanted me to know. I wrote down his feelings about wanting to leave and I wrote down my response. This calmed him down for a few more minutes.

At one point, the psychologist suggested that my giving him attention was escalating his reactions. My gut told me that, no, my son would have escalated a lot more and sooner if we had ignored him. His little system had maxed out and he needed to leave pure and simple. We were pushing him beyond his limits, and we shouldn't expect ideal behavior from a child with a neurological disability under such circumstances.

Despite my knowing this and despite my acting on my gut feelings, her comments dug into me and put seeds of doubt in my mind yet again. Was I doing the wrong thing? Does this psychologist who has spent a few hours with my child understand him better than I do? Does her education trump my experiences with my son? Alternately, am I blinded by my instinct to protect my child, to shield him from the outside world that doesn't seem to understand him? I'm not sure.

What I do know is this: I can't risk being too proud to accept good advice from knowledgeable folk yet I have to listen to my heart and what I know about my son because I know him better than anyone else on this planet. I have known him since he once squirmed in my belly. I know him now as the young boy he has become. I must learn to swallow my pride when I'm wrong and listen to my heart when I'm right even if so-called experts disagree with me. May I be blessed with such wisdom to know when to listen to others or when to trust myself.

Sunday, February 7, 2010

Interview with Aunt Jetty

I'd be fibbing if I said that I was a very concise speaker, that I often get straight to the point when discussing anything. I apparently come by it naturally since one of my first nicknames was "Aunt Jetty" after a deceased relative who was well known for her ability to talk incessantly. I rather wish I had had a chance to meet the awesome lady. We blabber mouths have a rarely appreciated gift for idle banter.

In all seriousness, though, I particularly find it difficult to express myself verbally because my thoughts are often zooming around in my head, and I tend to randomly verbalize snap shots of what is flitting around between my ears. When I am pondering a complex issue or one rife with emotion, I often have to write out my feelings because, for some reason, the process of writing lassoes my thoughts together and leads them straight into a more cohesive order. I was reminded of my difficulty with organizing my thoughts yesterday during an interview about our family's experience with autism.

Considering that lately I've been absorbed in my thoughts about autism, one would think that I could formulate a decent response to a few basic questions about the challenges we face, our reaction to the diagnosis, our hopes for our son and so forth. Granted, I did provide responses but I pity the person who has to edit my interview. Despite my having psyched myself up for the interview, I found it hard to narrow all the many thoughts in my head to concise and poignant responses to their questions. Although I'm likely being excessively hard on myself, I do regret my inability to clearly articulate what the challenges are for those affected by autism, to express the multitude of emotions a parent feels when discovering their child has a disability, and to honestly state our deepest hopes for our son and his future.

Of course, the more I reevaluate my responses, the more I realize that there is no easy way to convey these complex emotions. Our challenges occur at every level of our son's development, at every type of social interaction he has or we as a family have with others. It affects how he is and will be educated, how he is treated as a medical patient (we have to find autism-friendly physicians who understand why our son may not be the most agreeable patient, for instance). It affects what friends we all have, how close we may be with certain family members (although we have been fortunate in this regard). It affects how much energy we can devote to our twin sons who, as far as we know, are neurotypical. Finally, my husband and I experience a stress on our marriage stronger than any strain we have experienced before, and we have gone through plenty: infertility, in vitro fertilization, having premature twin babies, financial strain, and so forth. Unlike the other stresses, this stress on our marriage is chronic. Our son's autism will always be with him. Fortunately, my husband and I are both stubbornly in love with each other, we love all our children beyond words, and we both know that this is the path on which we have found ourselves. I'd be lying if I said we don't occasionally feel sorry for ourselves but, seriously, what good does that do anyone? None.

Perhaps over time I'll find a better way to verbally explain our situation to others when an explanation could help our child or others like him. Like mud settling to the bottom of a recently disturbed river, perhaps our lives and our reaction to our child's diagnosis of autism will be simpler and easier to be conveyed. One can only hope.

Thursday, February 4, 2010

What's Your Name?

I was momentarily stumped tonight as I played with my youngest son who is 3 years old. Like his older brother with Asperger's Syndrome (AS), he loves trains. He and I were playing trains together just the two of us which is a rare and special treat for both of us. At one point, my youngest took a train and blocked the tunnel my train was about to enter. In a deep voice, this train asked, "What's your name?"

Although I could not immediately recall the trains name, I hesitated answering for another reason. I realized that I had never been invited by one of my children to truly interact during pretend play. My son with AS plays pretend all the time but his idea of pretend is usually solitary and, although sometimes interactive, it is limited to very strict rules that he prescribes. My youngest son's question was so open ended that it struck me as unusual but then I realized that, no, this was the play of a neurotypical child and I had simply forgotten. I was floored by something so, dare I say, normal then floored yet again that I hadn't realized it had been missing.

Another aspect of this brief moment of play that struck me as unusual was that he was not reciting a show and reenacting it. His question was totally original (I should know since I might as well have a Master's Degree now in Fisher Price's transportation systems and their conveniently provided DVDs). This one, innocent question in the midst of play provided me with a profoundly new perspective about the nature of my children's play.

With my youngest as well as his twin, their playing together has reached a new level and I can't help but wonder how it will be received by my oldest son. My concern is that he'll reject it because it will violate his idea of what is correct. My hope is that perhaps he can learn how to play with his brothers at least for short spells in order to help him be more flexible and to adapt to other children's idea of play. If he can't, it won't be his fault and we'll adapt as we need to, but, if he can, a new world might just open up to him a little more. I can only hope.

Tuesday, February 2, 2010

Piercing Beauty

He senses things that most of us don't perceive: sunshine from a nearby window in the shape of a triangle, the melody of one song in another seemingly different one, the many instruments played in a complex song. He experiences this world acutely and, when there is beauty for him to witness, he basks in it unflinchingly. His face lights up with immense pleasure, filling those near him with pleasure. He is beautiful to me.

His senses that perceive such beauty also disarm him, sending him fleeing from sounds too penetrating, throwing his hands to his ears trying to protect himself from sounds which are unpleasant to him and him alone. Seemingly harmless sounds like a doorbell, our dog barking, the oven timer assault his senses and there is no way to fully protect him from this. We can only help him adjust.

I can't help but wonder what life must be like for him, to be tuned into the world at such a level that he practically drinks it all in in large gulps, gagging when it is just too much. We try to shield him so that our house is peaceful for him but the doorbell still rings, the dog still barks but we at least don't use timers much anymore without at least warning him that one is on so he's better prepared. We won't always be here to soften the blows that this blaring world may strike upon him. We can only hope to teach him how to cope with those things he doesn't like and to continue to bask in the beauty he loves.

Monday, February 1, 2010

Brother's clothes

One of my 3 year olds (I have twins), taught me a lesson today: we're all in this together. It's so easy for my husband and I to get so wrapped up in my 5 year old's recently diagnosed autism to forget how it affects all of us. Not that this thought is new because we regularly think about all of our children but, today, my first born of my twins almost brought me to my knees with his desire to help his older brother.

My 5 year old was having what we call an "Aspie moment" - he was having a very loud tantrum over a rigid rule he has applied to getting dressed after a bath. After my once saying he couldn't "do anything" until he got dressed he decided that meant he couldn't do ANYTHING, including go down and get his clothes. If a neurotypical child were to say this, their intent would likely be to manipulate and frustrate their parents. When a child with autism is doing something like this, it is because they are incredibly literal in their use of language. It is actually distressing to them to be told to break this rule of not doing "anything." Eventually, we'll work with him to redefine what he can or can't do after a bath but, tonight, this issue was still unresolved and my husband and I were trying (and failing) to convince our son that he could go get his own clothes. As our 5 year old was screaming that he couldn't do anything, we were responding in frustration, trying to convince him that he could get his clothes.

During this moment of tension and unfortunate arguing going on between my husband and 5 year old and I, our twins were walking around in the middle of it but neither of us were paying much attention to them. We were so focused that it took my first born twin a while to get our attention as he began to yell that he had his brother's clothes.

While we had been trying to negotiate with my 5 year old, this little one went to his big brother's room and found a shirt and pants and brought them up to us so his brother could get dressed. He was trying to help his brother and, likely, was trying to make everyone happy again. My attention shifted to this little child holding his big brother's clothes and crying because he wanted us to be happy.

My heart ached and I picked up my son and held him, thanking him for being such a good brother and son and apologizing for not hearing him sooner. My heart ached because I couldn't explain to him why his brother was yelling, that it wasn't his brother's fault or his fault or anyone's for that matter. When times are difficult with my son's autism, it is often hard to wrap our adult minds around why our son feels or behaves a certain way. Until this moment, I hadn't fully grasped how much this confusion and the need to make things right extended to his brothers who are too young to understand that their brother has a neurological condition that sometimes makes our life a little less than peaceful.

My heart ached because this child was trying to make us all happy, a burden that is too great for anyone much less for a 3 year old child. It is our job as parents to make our home stable and peaceful for all our children and, unfortunately, my 3 year old made it clear to me tonight that we haven't achieved that yet.
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