Wednesday, March 31, 2010


I wasn't always a mom of an autistic child or of twins. 
I wasn't always a mom.
I wasn't always focused on children.
I wasn't always married.

I used to be a very insecure girl who was fortunate enough to avoid the serious predators  I was a magnet for those seeking easy prey.  I was way too nice even when I knew I shouldn't be.  Being nice wasn't as scary as confronting someone who was crossing the line. 

I wasn't always in my 30s.
I wasn't always this older lady who still feels young.
I didn't always have stretch marks from my many babies.
I wasn't always so serious.

I used to worry about petty things, believing them to be important.  I used to feel tired all the time, not knowing what it was like to really be tired, to actually not have time to do the things that had to be done.  I used to have money for the basics.

I didn't always know the intense love a mother feels for her precious children.
I didn't always feel the strength that floods my veins when my children need me.

I used to never be this fierce.

I may not be perfect.  I may make mistakes daily but there is no denying that I am dedicated to each of my darling babies. 

I wasn't always this full.
I wasn't always this sure.
I wasn't always this loved.

Despite how hard things are, I am here and I am determined.  I will be my best, do my best and I will not back down no matter how hard it gets.

Tuesday, March 30, 2010


There is a woman at the gym that I see regularly.  I'm almost fascinated with her perhaps in a freak show kind of way.  She's tall, fake 'n baked, and extremely muscular.  She's a trainer at the gym but I occasionally see her working out on her own.  Yesterday, I was using weights which were located behind where she was working out and was struck by each muscle that bulged as she pulled down on the machine.  I couldn't help but compare myself to her.  I am certainly not anywhere as strong as she is - not even close.  I don't envy her physical strength because I've never found extremely muscular woman attractive yet I will say that it is striking.  Although I go to the gym as often as I can manage, I'm not interested in strengthening my body in order to get large muscles or even to lose weight.  I'm using the gym to help me be stronger inside.

There are times when the weight of my son's condition seems heavier than I can bear.  I feel so inadequate in the face of such a confusing disability that I feel myself unraveling as I desperately try to stitch myself back up.  Like a dog chasing its tail, I find myself spinning and spinning in search of something concrete and real, an answer that clearly states this is what you need to do so that he can be well.  Of course, on the other hand, there is the haunting reminder that there is no cure, only struggles to try to replace less desirable behavior with better behavior.  How can one help a child when no one can definitively explain why he does certain things?  If there is no answer to why then how can we truly help him? 

The endless pursuit of answers while subsequently caring for my son requires a strength and endurance that exercising could never help me with.  Unlike weight training, there are no breaks between reps, there are no days to allow certain muscles to heal.  I can't leave the gym and take a break when things are getting to tough for me.  Usually, when I'm the most tired is when I'm needed the most.  There are times that I struggle to find the strength that I know is there even though it escapes me, leaving me feeling as if I have failed myself, my son and my family. 

Tonight, I was at the gym.  I channeled my intense feelings through my muscles in the hopes of releasing negative emotions which were standing in my way.  I didn't feel strong.  I felt overwhelmed, confused, tired, burned out, and sad.  I still do but after focusing on lifting heavy weights despite the physical pain, I feel I may have glimpsed my internal strength again.  As my children sleep, I'll try to rest so that I may find that strength in the morning.  Perhaps one day I will be as strong as some of the other moms of autistic children which I have had the privilege of meeting.  Unlike the trainer I've seen at the gym, the moms are the true powerhouses in my mind.

Saturday, March 27, 2010


It's not unusual for a cheerleader to be flexible.  It's practically required.  I, however, was unusually flexible among this group of athletes and earned the nick name "Contortionist" from older high school boys who made me blush.  I am not naive enough to not realize what else might have crossed their minds but the fact was I was unusually flexible to the point that it was notable.  Nowadays, although I'm more flexible than some, I have lost some of the flexibility I once had mostly since I haven't focused on maintaining it.  At this point in my life, being able to do the splits isn't something that would benefit my life greatly with the exception of improving marital relations!

Interestingly, as my physical flexibility has declined, I have found that my mental flexibility has increased.  I haven't sat down to stretch in ages, but I practice stretching my mind, my endurance, my ideas of what life should be like on a daily basis.  Although there are times where I may be too flexible, I feel that this ability to go with the flow of things is an asset when raising a child with autism.  A frequent challenge for those with autism is rigidity and inflexibility.  This is manifested in a number of ways from very distinct ideas about how things must be done to the literal interpretation of words and phrases.  Their strict adherence to their ideas and beliefs can be misinterpreted easily as their being stubborn, controlling or, unfortunately, being jerks.  Their rigidity can really cramp one's lifestyle particularly if they are rigid about things in a manner which goes against the accepted norm.

Here is a recent example.  My son and I went to the grocery store yesterday.  When we entered the store, I stopped at a display of oranges that were on sale.  I was considering buying them.  I knew my son wouldn't eat them because he's a very picky eater (he would eat bread, butter and cheese with chocolate milk every meal for the rest of his life if we let him) but I explained that I might get them for his brothers.  Although he had been totally content two seconds prior to enter the store, he immediately flips out about how we could NOT buy the oranges.  Grabbing my hand, he tries to pull me away from the oranges.  As this is happening, I see a woman staring at us out of the corner of my eye (yes, here we are again.  Another public spectacle.)  Ignoring her as best as I can, I quietly talk with my son and ask him why he does not want the oranges at home.  Looking at me like I'm a mad woman, he explains, "Because MiMi has them at HER house.  We don't have them at OUR house."  So there. 

Of course, all of this is happening in a matter of seconds.  My years of experience with my son has given me an almost 6th sense to perceive where we are in my son's state of emotions.  As I tried a few of my tricks to convince him that we could have oranges at our house and at MiMi's house, my instinct was telling me that there was no winning this particular battle.  If I insisted on putting the oranges into the cart at that moment, we would have been in full melt down mode which would have led to our leaving the store in a most chaotic way with arms flailing and my child screaming.  Since we had shopping that needed to be done and since the oranges were just an impulse idea, I decided that I would wait and buy them later since it was causing him such distress. 

It would appear to those unfamiliar with my son and his condition that I've essentially given in to his demands.  I could only guess what the woman who was staring at us throughout this was thinking but, frankly, I didn't give a damn.  I didn't have time to explain the complex issues involved with my son's rigidity.  He had decided that only MiMi has oranges at her house (I have no idea why but it is very common that he makes unusual connections like this).  The idea of my buying the oranges actually challenged him in a manner that threatened his ideas, making him anxious and scared.  His reaction was not that of a spoiled child but that of a scared and confused child.  It takes an alert parent to recognize this difference.  It took me years to understand.

If I had been rigid myself and insisted that oranges could be at our house, I would have found myself in a very stressful and distressing moment with my son.  It is important to point out that there are times when I have to challenge his ideas.  This was not one of them.  My flexibility as a parent is essential when working with my son.  It gives me the perspective I need to see things from his eyes and to subsequently determine which issues are the most important. 

With time, I hope to help my son with his flexibility.  Some days, he amazes me with how well he can adapt.  Other days, I find myself doing some intense mental yoga.  As my body becomes more rigid with age, my son challenges me to mentally twist, stretch and turn in ways that give a whole new meaning of my nick name, "Contortionist."  I can only hope to pass on this flexibility to my son so that he may have a more content and happy life.

Thursday, March 25, 2010


There have been countless times I have thought about writing this post.  Each time, I find myself giggling but never organized enough to actually figure out how to do it justice.  Simply put, I want to write about how hysterical my son is, how much he makes us laugh.  Although my son can be very literal and rigid with certain aspects of language and behavior, for example, he is surprisingly creative.  His imagination is mind-boggling and, when I'm tired and need to be focused on the present moment, his tireless discussion of his fantasy world can be a bit annoying.  Despite those frustrating moments, I love his mind and often sit in awe of what he dreams up.  I simply can't discuss his humor and creativity in a manner that does it justice but I will give some examples which I hope you find entertaining.

One thing my son loves to do is to play with my phone.  I have a Sprint Instinct which is similar to the iPhone.  My son loves the touch screen and routinely changes my settings, my speed dial contacts and, oh, so much more.  Probably one of the funniest things he has done on my phone is create entirely new contacts.  Currently, he has added 30 contacts to my phone.  Here are some examples (just as he has typed them in):  Aby & Aby & Aby, Amsy Cosmos, Dilid, Dindin, Eabe, Ersmuse, Goly G Dog, Greg (au) - this is Greg in Australia, Halloween Jimmy, Jimmy Christmas, Littlemisss Lee, Qawerty, Sad Eric, Sellorn Elmo, and Digy Pooppy.  When I first discovered these, I could not help but crack up but then I discovered that that was just the beginning.  He also provided phone numbers and emails addresses for each of these contacts.  For instance, Dindin not only has a phone number he made up but my son gave him a British email address:  Not only did this make me laugh out loud, it mades my hair stand on end.  I haven't erased the contacts despite how annoying they can be when I'm looking for a real one.  Some of the ones he has added are actual names, and I find myself wondering if he put it in or if I know someone by that name but am just forgetting.  The only clue I have then is the phone number he entered since they're usually along the lines of 555-155-5151 or 111-222-3333.

Some of what my husband and I find funny isn't intended as humor but is quite humorous to those who tend to dwell in the here and now.  For instance, my son's imaginary world is experiencing severe overpopulation.  Talk about the "J" curve, I'm not sure where he finds room for all the sisters, friends, cousins, babies, parents, etc. that he lists off regularly.  Of course, there are a few that are always around such as "Holland" who lives underground.  She is ever present, it seems.  It took me a while to figure out where he came up with the name Holland but I discovered it was from a world puzzle we have that has children from various countries surrounding the planet in a circular fashion.  His Holland is the boy (that my son thinks is a girl) who represents the country of Holland. 

Amusingly Holland is related to everyone in some form or other with the exception of my son's twin brothers.  My son has decided he's the only one who is a brother to Holland.  Go figure.  Holland also speaks many languages, can build all sorts of things such as trains, cars and planes and has found a way to live underground.  If I explain to my son that, for instance, he needs to go to college and learn how to build a real train (after his insistence that we are going to build a real train that day), he'll explain to me in response that Holland knows how to build them so, therefore, we can build one with her today.  How can I argue with that?  Sometimes I want to take Holland aside and tell her to quit lying to my son about what she can and cannot do.

I also I can't forget to tell you about Coffee Car (pronounced Cafe' with Spanish accent).  Coffee Car is our lovely, almost always filthy, minivan.  My son loves Coffee Car.  He named her Coffee since the interior is brown (originally tan, it has been enhanced with various darker brown spots due to various spills and mishaps).  My son celebrates Coffee's birthday on a very frequent basis.  You would think that cars only celebrate their birthdays once a year but, apparently, Coffee celebrates hers as often as she can.  From making cards for her to creating a birthday banner, my son goes all out to make her day very special.  If a piece of machinery could love a child, I would have to believe that Coffee Car would be smitten.

I wish I could remember every instance where he has made us laugh.  He is such an amazing kid and his enthusiasm, energy and smile just fills me up.  As much as autism has its sad points, there is something so rich, pure and magical about him that is also a part of autism as well.  I never think of "curing" my son because so much good comes with the "bad" that I would hate for that to go.  His autistic symptoms are intertwined with all aspects of who my son is, and I feel that he is beautiful.  My biggest hope is that his bright spirit can shine through those behaviors that might make life difficult so that everyone can celebrate him, enjoy him and, most of all, laugh a deep belly laugh with my darling son.

Wednesday, March 24, 2010

They will sing to us

I'm going to shuck off the negativity.  I'm going to throw it to the floor and stomp on it, laughing as I shatter the negative feelings that have sapped me of my energy.  I'm going to dance . . . at least until I crumble again which will happen no matter how hard I try.  Until then, I'm shifting my focus from the problems to the possibilities, from the bad to the good.

Tonight, I just finished reading an uplifting book by a fellow resident of Utah, Kristi Lyn Stewart.  Her book titled, Dancing with Autism: Choosing Joy over Fear, is an honest, personal assessment of her experiences with raising an autistic child.  Throughout the book, she describes her own experiences and provides suggestions on how to embrace autism and to accept it for what it is.  From "tossing out the guilt" (the first chapter), "living with embarrassment, to "take what's yours," she details many of the aspects of raising a child with autism and offers ways to search for the positive throughout each experience.  "The quote printed at the beginning of the book, sums up her philosophy quite well:

"Life isn't about waiting for the storm to pass, it's about dancing in the rain."

Well said.  When I first purchased the book, I was concerned that the book would present a sugar-coated version of raising a child with autism.  I should have known better because even Pollyanna would have a hard time embracing all of autism's attributes.  Although I admit that I may not be as optimistic as Stewart presents herself, I applaud her for her strength and her motivation to write such an encouraging book.

When reading a book by a fellow parent of an autistic child, I find it hard to not try to look for our similarities and our differences, to compare our situations, our children.  With a few exceptions, our children are quite different.  Her son is not has high functioning as my son, so the challenges she has faced and is currently facing are greater than those we face.    Despite that, though, I found that she expresses many of the emotions I have experienced.  Occasionally, she references specific things her son has done that mine has done as well (such as having a negative reaction to the sound of presents being opened - the rustling of the paper) that I can identify to certain experiences she has had.  Mostly, I identify with her philosophy and I appreciate her humility.  I particularly appreciated her last chapter titled, "Taking What's Yours."  In it, she states quite honorably in my opinion to ". . . take those ideas in this book that feel right to you.  If something doesn't site quite right with you it is probably because your own path will require something different."  I value an author (and a fellow parent of an autistic child) who appreciates that our children are different despite their having autism and that we must find what works for our own children.  I agree wholeheartedly with her philosophy that:
"We need to let the good that is waiting for us come in.  We won't have to yank it in or try and widen our doors to let it through.  The things that will help us most in raising our children with autism are the things that feel like putting on a warm blanket or settling down to listen to our favorite song.  They will sing to us, they will fit into the next logical step we need to take, and they will bring with it the feeling that we are on the right path."
I personally found her book to be like a nice, warm blanket.  I found it comforting and empowering.  I believe that this book would be helpful to those who feel isolated and alone, who feel confused and overwhelmed, those needing a little inspiration.  She empowers the reader to realize that there is beauty in autism and that every day we have a choice to chose joy over fear.  Reading her book is like getting a nice warm hug from someone who understands, and we all know how powerful a really warm hug can be.

Tuesday, March 23, 2010

Searching for strength

I'm not sure if I'm brave enough to show how ugly it can get, how gut wrenching it can be to raise a child with autism.  I'm not sure if I'm willing to be that honest.  I'm not sure I could convey the struggles I have with myself to be more, to be better, saner, calmer.  I know I'm not alone because many studies discuss the depression mothers face when raising a child with autism.  It seems only logical that we would but I still fight it because I hate to be unhappy.

There are days that I crumble, when I can't take it anymore.  The rug has been pulled out from under me again and I don't know if I'm strong enough to get back up.  I find myself hating myself for my limitations, for my weakness, my inability to be what I have decided all my sons need.  I feel pulled between a son with special needs and his neurotypical, twin brothers.  They each have their needs, and they all want them mostly met by me. 

I get so tired sometimes.  My brain won't go any further.  I either can't think of another way to improve a behavior that is baffling us, or I feel so beaten down by my son's endless talking, his defiant or aggressive behavior or by cleaning yet another pair of souled underwear.  I fantasize about curling up into a ball and hiding in silence away from the chaos.  I know that this is depression but, as far as I can tell, it's not clinical.  If it were, I wouldn't get out of bed, I wouldn't feed myself and I'd shut down completely.  I'm not there because I'm still fighting.  I force myself out of bed.  I force myself to exercise and eat.  I soak up the good times when I can.  I just can't sustain that.  When I've lost my way and feel thrashed by my life, I literally or figuratively get down on my knees and search for strength.  I forgive myself for not being good enough, for hating my life despite all its blessings, for being angry. 

Long ago, I realized that my life was going to continue to be challenging - as all lives are.  In order to help myself, I came up with a few things that I turn to when I'm feeling negative and depressed.  First, I searched for quotes that I find inspirational and I put them all in one document.  When I'm feeling like dog doo, I open it up and read it.  Sometimes this is enough to help me get back on my feet.  Another thing that I have found very helpful is exercising.  I go to a local gym and "break the machines" as my husband teases me.  I think of all the things that have recently saddened me, scared me, angered me, and I direct that energy toward the machines and weights.  Afterward, I retreat to the spa, then the sauna and, occasionally, I take a quick swim.  Once I have done this, I often feel purged of negativity and filled with a sense of calm.  As I leave the gym, I know that I am returning to the issues from which I left but what has changed is my perspective and that is critical to continuing forth.

Today, my day started out ok and I even had some great moments with all my children.  Toward the end though I had a lot of stress and felt discouraged by behaviors I just felt I couldn't handle.  I simply felt inadequate and, worse, responsible.  I blamed myself for the madness.  I need to be honest with myself.  I could do better.  I do contribute to the madness at times by doing things that are unhelpful; however, I did not cause my son's autism, and I have to be compassionate toward myself just as I am with him.  I am a mom of a child with autism and I need to be nice to me too.

Wednesday, March 17, 2010

May the saint protect ye

I have a wee bit of Irish in my ancestry like many folks of European descent.  The only accent I'd trade my Texas one in for would probably be the Irish accent.  Although I have never traveled there, I fantasize about the idea of drinking some good, Irish beer in a village pub.  Despite my heritage, the celebration of St. Patrick's Day has been rather understated.  Prior to when I began consuming alcoholic beverages, the holiday was merely a day to wear green.  Today, I saw the holiday through my son's "autism glasses." 

As we prepared our children for school this morning, we dressed the boys in green like many family's around the country and internationally.  My twins' only issue was who got which green shirt since they basically wear the same clothes.  My son with autism actually found his own green shirt and put it on.  At first glance, this would seem normal for most people and, for us, quite a successful start to the day.  Overall, it was a good morning on the surface.  The only difference was my anxiety level.

My concerns about St. Patrick's Day stemmed from a comment my son made a few days ago when he realized that the holiday was approaching.  He stated emphatically that he was going to stay home in his room on St. Patrick's Day, that he would not go to school or go anywhere for the whole entire day.  My son has a history of resisting going to school.  Resisting is putting it quite mildly since what he really does is fight tooth and nail to not go.  He has recently started going to a new school which, so far, has been better for him.  He has not protested going to school, although he did halfheartedly say he didn't want to go anymore because he "knew everything already."  We have struggled for years now to help our son willingly go to school.  Him even hinting that this may become a problem for this school triggered all sorts of panic in me because I'm simply exhausted by the battle. 

Last year, my son was mortified to hear that people pinch those who are not wearing green.  This bothered him for two reasons, I think.  One, the idea of pinching someone was totally uncool in his mind and, second, it allowed others to judge whether he had done something correctly or not (i.e., another could determine whether he'd worn green).  He did manage to go to school last year on St. Patrick's Day but I do recall that it wasn't the best of days.  This year as the holiday approached, I deliberately avoided putting up any decorations.  I spoke with his new teacher to let her know he had issues with the holiday, and she assured me that they did not celebrate it in class.  

When my son willingly and quite gleefully put on his green shirt independently, I was very surprised and pleased.  I was beginning to relax when I overheard my husband, who was not wearing green, saying to our son, "Do I have green on?"  Being the freak that I am, I ran back in and tried to ask my husband to not continue down that path of conversation because I was afraid it would lead to the scary, frightening, horrible word "pinch."  Of course, since my son was right there, I couldn't explain myself without bringing up the ISSUE so I was evasive but firm in my request.  Perplexed by my reaction, my husband reluctantly quit talking and I had to call him later on my cell to explain my concerns.  If my son heard the word pinch, he might be reminded (as he so often is by slight references like that) of his anxieties and, thus, decide that he needed to stay home the whole entire day. 

Perhaps I averted some trouble or else I need to take the same chill pill that I so regularly wish my kids would take, but I was thankful that the day went fine in regard to my son's going to school.  He even greeted his Daddy with a "happy St. Patrick's Day" when he returned home from work.  Tonight, as I think about what St. Patrick's Day meant back in the days it began, to what it has become here in the United States, I find it interesting how autism has affected us so pervasively that even an innocent holiday like this becomes an issue to overcome.  I keep wondering if I'll ever quite being surprised by how autism affects us.  Just as soon as I feel that it can't surprise me anymore, I find myself jarred by yet another thing.

As I sit and enjoy a fine bit o' beer tonight, I can't help but wonder what my ancestors would think of my son.  Back in the day, he would have been misunderstood and would have likely been tormented or punished for his fearful reaction.  I'm grateful that I understand him enough to help him, that I can ease his anxieties by being understanding of his viewpoint.  One day, I hope to teach my son the history of the holiday and to gently guide him beyond his concerns about being judged or pinched.  I can only hope that one day, when he's of legal drinking age, of course, we can all toast to his overcoming his fear while consuming a wee bit of Irish beer just as our ancestors did in the motherland.

Tuesday, March 16, 2010

Parenthood: "E" for Effort

By choice, I do not watch a lot of television.  I find it often clutters my mind and distracts me from my priorities.  Occasionally, though, I will indulge in one of America's favorite pastimes for the heck of it.  Recently, I have found myself watching NBC's new series Parenthood.  I would not have considered watching the show if my sister-in-law hadn't sent me a link about it.  By looking at the pictures of the cast I would never have guessed that one of the characters is diagnosed with Asperger's Syndrome.

I find it very odd to watch a show about something very real in my life.  I have never related to a show's subject more and was struck by the mixed emotions I felt while watching it.  On the one hand, I couldn't help but make comparisons of the characters' lives and ours, of the child with autism and my son, of the parents and my husband and I.  There were times I was nauseated by the Hollywood sterility of the show (for instance, the house is clean, the parents look great, the kids don't have boogers in their noses).  Other times, I was in tears when I related to what the characters were experiencing such as when the parents begin to understand their son may have autism and may have a problem. 

The fact that a character is openly depicted as having autism is incredibly important and beneficial for the autism community as it helps to educate the public about the condition.  For that reason alone, I will continue to watch the show in support of it.  I try to avoid judging the accuracy of the depiction of autism for the simple reason that autism varies quite a lot between individuals.  My own personal experience with autism is not broad enough for me to make generalizations about how it should be portrayed.  There were times when I watched the episodes that I couldn't relate to the autistic character, Max, at all but then there were scenes in the show that were similar to experiences we have had with our son. 

One scene to which I could relate was when Max became frustrated when he was cutting out shapes with his scissors.  As he continues to get frustrated, his classmates begin to tease him which eventually leads to his attacking and biting a fellow student.  What may appear to be an explosive response to being taunted is actually precipitated by his being frustrated with his imperfect ability to use his scissors.  For quite a long time, my son frequently attacked his fellow students, often biting them.  One such attack was precipitated by a student's insistence that our dog, Patch, was actually a cow because she is black and white.  The child was teasing but my son didn't understand that, plus my son is incredibly literal and he was unable to deal with the child calling his dog a cow because it was inaccurate.  In this particular incident, my son grabbed a chair and threw it at the other student.  Obviously, my son's aggression was incredibly frustrating for all of us.  The teachers eventually learned what triggered his attacks and worked to avoided those situations which led to his explosive responses. 

Perhaps watching a show that depicts a family struggling with similar issues may give us another way to process our own lives from a different perspective.  I'm sure that there will be plenty of things about which I won't be able to relate but maybe the show will broaden my ideas about being a family affected by autism and to see ourselves as we may be seen by those on the outside.  I would recommend those interested in understanding Asperger's Syndrome to watch the show but to keep in mind that the show is limited because it is, by its very nature, unreal.

Saturday, March 13, 2010


Whether your child has been diagnosed with autism or someone close to you has, when you begin your quest for information about autism, it is inevitable you'll find yourself feeling the need to chose the camp in which you belong:  the vaccine camp or the genetic/not vaccine camp.  Prior to my son's diagnosis, I was aware of the debate but I hadn't devoted much attention to it since it wasn't personal.  I felt removed from the issues and felt secure in my distance from autism that I didn't put a lot of thought into it other than to wonder curiously whether there were any risks with vaccinating my children.  This obviously changed after my son was diagnosed.

Since every parent shares the feeling that their child is precious, it is understandable that the emotions piggy backing this debate are heightened and intense.  Anytime I find myself thrust into one of these heated, polarizing debates, I find it difficult to take sides because I feel that nothing is black or white, and I also respect people's right to their beliefs.  When a parent states that their child was fine before they were vaccinated, I feel it is unfair of me to dispute that.  As far as they're concerned, this is what they experienced. 

For my child, the signs were there from very early on even though we did not recognize them at the time.  Interestingly, one of the first signs my son was autistic involved another heated debate among parents. Prior to the birth of my child, I had read plenty about the benefits of breast feeding.  Since I obviously wanted the best for my son, I was driven to breast feed my child.  Unfortunately, my son resisted this.  He would feed for a few seconds then pull back forcefully.  He hated being held closely like that but, at the time, I misinterpreted his behavior as a reflection of my inability to feed him.  I had convinced myself that my son should not be fed formula yet my son would not feed.  We hired a lactation specialist and we were still unsuccessful.  In my drive to feed my child according to my beliefs, I instead pumped for 4 months in order to feed him breast milk instead of formula until I could no longer maintain the rigorous schedule.  When we switched him to formula, I felt that I had failed.  I had reached my limit.  At the time, I felt so inadequate because I was unable to breast feed my son but, now, I understand why and I realize that I did the best that I could have possibly done under the circumstances.

I eventually shed any guilt that I had.  My resistance to the zealousness of those who insisted that breast feeding their child is the only way was eventually validated by my son's diagnosis.  I had struggled for so long with that sense of inadequacy over breast feeding that I am now resistant to anyone suggesting they know the answer to any particular issue related to my child.  As for the issue of vaccines, I personally do not feel that vaccines had anything to do with my son's autism.  I can't speak for parents who feel that their child's autism was caused by them.  I tend to trust the research that does not support a connection between vaccines and autism.  Instead, I feel that perhaps there are different onsets of autism:  those that are early onset like my son's and those that are regressive like those who feel that vaccines caused their child's autism.  I feel for the parents who feel that there child's autism was caused by vaccines, and I hope that they are able to find answers soon because I can only imagine how painful it must be for them.

Tonight, I found myself watching a video posted by Autism News of a lecture by Dr. Robin Hansin ( about the many faces of autism.  I found the research she detailed to be fascinating.  To summarize the research does it a disservice but she describes the result of research on the possible biological and behavioral differences of early onset verses regressive autism.  The research provides details about possible differences and similarities between these two types of autism suggesting that perhaps there are different biological mechanisms influencing the disorders.  Quite interesting to me was that their research suggests an immunological mechanism that may be influencing the onset of the condition and, in particular, with that of the early onset (which goes against a theory of vaccines adversely impacting a child's immune system and thus causing regressive autism). 

I won't pretend to suggest that I understand what causes autism.  I won't invalidate the claims of parents who say their child changed after vaccines.  What I will say is that we should all be open minded and evaluate all the possibilities and to consider that, just as autism manifests in a variety of forms, perhaps the etiology of the disorder may also be heterogeneous as well.  As for the heated debate regarding the causes of autism, I plan on sitting back on the sidelines and waiting for the research to find an answer.  Over the years, I think we'll discover hints as to the cause of our child's conditions but it may or may not be what we are thinking today.  As far as my son is concerned, what created his autism is somewhat irrelevant.  Simply put, my son is autistic and it is more important that I focus on how I can help him adapt to the neurotypical world than to focus on what caused it.

Friday, March 12, 2010

Hell or High Water

Whenever I speak with a parent of a child recently diagnosed with Asperger's Syndrome, I almost inevitably end up recommending they take a look at Jeffrey Cohen's book, The Asperger Parent:  How to Raise a Child with Asperger Syndrome and Maintain Your Sense of Humor.  So many books about raising a child with autism focus just on the child and appropriately so.  Of course, when my child was first diagnosed, the first books I wanted to read were those discussing the condition and providing guidance on how to help my child.  Once I had gotten this preliminary information, though, I found myself flipping through the pages of books searching for a connection with the authors and their experiences.  My inner dialogue while looking through the books would be, "Yes, I know that.  Yes, got that.  Ok, but how does this make you feel?  Do you feel overwhelmed, sad, frustrated, angry. . .?"  More often than not most books do not answer those questions or, if they do, it's fleeting and more of a distraction from the author's real intent which is to inform. 

Cohen's book offers a lifeline to parents who feel isolated and alone, who feel inadequate or guilty for their inability to "deal" with the condition and the sometimes extremely stressful and negative impact it can have on the entire family.  I appreciated his honesty and candor, his balanced viewpoint and, especially, his humor.  He describes so many of the situations a parent finds themselves in, the good and bad emotions that parents experience randomly, unpredictably and intensely throughout each day.  Unlike the other books, his focus is on the parent.  As he states in the first chapter, ". . . this book is not about your child.  It's about you."

A woman I admire immensely once told me some of her secrets to surviving the raising of an autistic child.  One of the things she told me was that having a wicked sense of humor was essential.  I would imagine that Cohen would agree and I believe that humor is an important tool to handling many of life's ups and downs.   When I think back on my life, I can't help but feel grateful that I come from a long line of Texans who have learned to find humor in some of life's more difficult circumstances.  At the knee of many a family member, I have listened to the irreverent banter of my family, their conversations full of color and mischief.

As an adult now and a parent, I find myself falling back on those old, family patterns, finding strength in that humor and knowing that I have the strength of generations in my blood.  Reading Cohen's book has helped me grasp that sense of strength as well and to remind myself that I'm not alone, that there are good times too, to forgive myself for any weaknesses I have and to persevere come Hell or high water. 

Wednesday, March 10, 2010

My UNO, my first

When my son was born, I remember being almost numb with emotion.  There was too much to process, too many feelings for my brain to acknowledge.  Suddenly feeling weightless without my baby inside me, I was stunned by the newness of motherhood and my maternal responsibilities.  My small, healthy baby boy peering at me with penetrating eyes, held me still in his gaze as I held him with arms that had been reaching for him for years.  In the small hospital room with my husband, we began our adaptation into this next stage in our life by doing what must be done and what we'd always dreamed of doing.  From the necessary duties of changing his diaper (and his blanket and the changing pad due to our ineptness at changing a baby boy) to holding his little, tiny hand in ours wondering who he was inside this tiny, little body.

One thing that had struck me and that I've never forgotten was a strong sense of recognition.  The way he moved his arms or turned his head felt like my own movements.  I recognized these movements as the same ones that only a few hours ago I had felt within my own stomach.  Here was the child I had been nurturing within me for months, to whom I had read to every night as only a first time mother might do. 

The feelings I experienced with my son in the first few hours of his life were later followed by a lot of confusion and a strong sense of inadequacy.  From his resisting being breast fed to his being diagnosed with colic and later reflux, my husband and I were dumbstruck by how difficult it was to raise our darling boy.  Raising him became such a matter of endurance and I found myself constantly challenged to my core with fatigue, exhaustion and despair.  Of course, throughout the raising of my son, there were always beautiful moments and I will never forget them.  For instance, I remember rocking with him peacefully as snow fell outside (we were in Texas then and this was a rare and beautiful thing).  I remember holding his sleeping body and marveling at his preciousness.

For so long, our relationship with our son has been reactionary because we didn't know he was autistic until recently.  As is so common in families with an autistic child, we "walked on eggshells" to try to maintain the peace in the house.  Of course, this is impossible and leads to feelings of failure, blame and despair.  Now, though, I feel that I am reconnecting with my tiny baby who is growing up and becoming a young boy.  Less of our time has been spent cushioning life for him and has been more directed toward quality time together. 

Recently, my son and I have begun an almost daily ritual of playing UNO together.  This is such a simple game and has no inherent value other than a source of entertainment but, for me, I am filled with such pleasure as I play a game with my child and I delight in his enjoyment of it.  Though his methods are totally predictable to me (since he tends to stick to a routine way of doing things), I delight in his amusement as he puts down a card which makes me draw more.  His amusement fills the room and fills my heart and I just want to hug him and let him know how precious he is.

As he sleeps soundly tonight after another good day, I feel thankful for how things have improved since his diagnosis.  Thanks to the wonderful care that we have received and the attentiveness of the professionals assisting us.  I can only hope that this trend will continue and that there will be more times such as when we play UNO that I can cherish my son as I did when he was first placed in my arms.

Tuesday, March 9, 2010


When your child is diagnosed with autism, your concerns about your child's future changes.  It's nothing new for parents to worry about their child and what life they have before them.  As babies, you worry about their fevers or that they just put a penny in their mouth.  As they get older, your heart leaps into your throat when you find them on top of the table. . . again.  When your child acts out and is particularly stubborn, you may worry about what kind of student he or she will be, whether they will be horribly rebellious teenagers, whether they'll harm themselves with abuse of drugs and alcohol.  Will they get their heart broken?

When your child is autistic, you find that you have new worries.  Some of them are just magnified versions of the "normal" worries and others are unique to their circumstances.  For instance, some autistic children can be overly trusting and familiar with strangers which is frightening when one considers how many pedophiles could take advantage of such naivete.  Also, since autistic children often stand out from the crowd, they are often victims of bullying.  A parent of an autistic child must be vigilant to ensure that their children are protected as much as possible from such abuse but there is only so much parents can do.

One concern that particularly concerns me is how our autistic children might be perceived by law enforcement.  Although children with Asperger's are usually very law abiding and are actually likely to follow rules (almost to a fault), they are seven times more likely to have an encounter with law enforcement than a neurotypical person of the same age according to Dennis Debbaudt, author of Autism, Advocates, and Law Enforcement Professionals:  Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders.  As a parent of a child who is often misunderstood by others, it is frightening to imagine our children in a situation involving armed police officers.

Perhaps if reading that statistic weren't frightening enough, then the story about a 7-year-old who was charged with assault after attacking his teachers might be.  The young, 1st grader attacked a teacher and a teacher's assistant in two separate incidences.  The assault of the teachers was definitely unfortunate and egregious but  what concerns me from reading the story about the attacks (see: for details), is that the school was denying or ignoring the child's diagnosis of autism. 

I can't pretend to know the details of this particular story since I don't know how this child was diagnosed and why their school district was disputing the diagnosis but if the diagnosis was correct and the district was not accepting it, the child should not be held responsible for being in an educational setting that was inappropriate for his needs.  Thankfully, as the article indicates, the charges have been dropped.  The 7 year old no longer has to worry about being prosecuted in a court of law over behavior that likely was due to his condition and an inadequate environment.

One would hope that this type of situation is rare.  Thankfully for this child his age may have helped protect him from prosecution.  How would the court have treated this child if he had been a large 15 year old kid who was capable of inflicting more harm?  It's thoughts like that which send parents into a panic as they watch their precious child grow.  No one will love their child more than them.  No one understands them like they do.  How can they protect them as they enter into the world that may misinterpret their behavior and may not see the beauty within them?

Thursday, March 4, 2010

One step forward, two stumbles back

I wouldn't be doing autism justice if the post following one like My Quiet Cheer were a continuation of that sentiment.  While I was writing the previous post, my superstitious self kept insisting that I should knock on wood in order to not jinx myself.  Although nothing has changed since yesterday and the progress I was alluding to is still real, as is so painfully typical, there are so many set backs that can occur and they often seem to occur soon after feeling likes things are going well.  Sometimes the setbacks are only perceived that way and are not true setbacks but maybe just a small hiccup in progress.  Other times, though, the events really are setbacks that need to be dealt with.  At the time the discouraging events occur, it is sometimes difficult to discern whether the behavior is truly a setback or not. 

When I started this blog, I promised myself that I wouldn't discuss anything which might embarrass my son when he got older.  Although I find it hard to believe my son would be embarrassed by anything (since this would require his caring what others think of him), I have to assume that he may eventually be more self-conscious in the event that that happens.  Today, the events that have inspired my less positive mood are related to potty training issues.  Since potty training issue have the potential of embarrassing my son, I won't detail the problems we had today except to say that there is a reason why experts feel that autistic children are some of the most difficult children to train. 

Part of the struggle as a parent of a child with autism is the frequent feelings of disappointment, hopelessness, and confusion.  In order to survive, and for your child to thrive, you have to learn to accept these moments and to face them head on; otherwise, it will eat you up from the inside out.  Also, it is essential to prepare for these days by having a planned way to survive them.  As I sensed my mood deteriorating and my feeling of despair creeping in on me, I called my husband and asked if he could possibly come home earlier (which he did - he rocks).  Writing this blog helps because I shift from living this world to describing it which helps me to be more objective about a very emotional situation.  Next, I will go to the gym and take all my sadness, anger, and frustration out on the machines.  Finally, at the end of the day, I have to forgive him for what he can't control and forgive myself for wanting him to be different.

Tuesday, March 2, 2010

My Quiet Cheer

Perhaps its the medication, perhaps its the new schedules/systems we've put into place, the professional help we've been blessed with, or a combination of these but, regardless, we're making progress.  To an outsider, progress could easily be overlooked because, when raising a child with autism, progress is very subtle and is often interrupted by random regressions.  It requires focus and an attention to detail to notice the slow improvements until eventually you find that whatever goal you were seeking has mostly been reached.

What I find so fulfilling are those moments when my son goes out on a limb on something, when he bravely decides to do something that has terrified him or when he decides to trust me and does what he absolutely hates to do.  It's in those moments that I want to whoop and holler.  Unfortunately, the few times I actually did excitedly yell, "Yeah!" I unintentionally hurt my son's sensitive ears and my praise had a punishing affect on the poor guy.  Despite my godforsaken background as a cheerleader, I've had to swallow my old ways and now resort to air punching and whispering my praise.  My son doesn't trust me yet, though, and always covers his ears when he knows I'm excited about something he has just done.  (As a side note, one thing that is sad about having a child with an unbelievable memory - as is typical of children with Asperger's - they remember all the mistakes you have made vividly and recall them quite regularly.)

My son will never be "normal" because he won't ever blend in but that's ok.  If we can help him assimilate enough to have a healthy, happy and productive life, who cares if he may seem odd to people whose opinion really doesn't matter - and particularly won't matter to him.  I recently took him to buy some fish for our new aquarium and his little body was alive with excitement.  Eventually, he overloaded and began jumping around like a goof ball.  The clerk was trying to ignore him as he talked with me in his mature-I'm-ignoring-your-strange-child's-behavior.  Inside, I smiled.  He is my little goof ball and he's amazing.  I stroked his head between jumps and decided we could get our fish elsewhere and we did.

My son is happier and our home is calmer.  The challenge of autism is definitely not even remotely behind us nor will it ever be but he's making progress and I'm feeling more positive about his future.  I'm making progress too.  Before, I admit I cringed when my son acted oddly because it was embarrassing and I felt judged as a parent by those ignorant of my son's condition.  Now, I keep in my heart how hard he is working, how far he has come and I almost want to dare someone to say something to me so I can praise him for the awesome, amazing kid he is.
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