Friday, September 24, 2010

Controversial me

In a recent appointment with my oldest son's occupational therapist (OT), she indicated that my son needed help with his proprioception which is defined as:  "the perception by an animal of stimuli relating to its own position, posture, equilibrium, or internal condition."  As I was contemplating my controversial beliefs about how my oldest should be educated at this point in his life, I realized that I too was struggling with a similar kind of proprioception.  Instead of being related to my body, however, mine is related to my inner self.  I need to work on my own feelings (position), learn to take a stand (posture), find inner balance (equilibrium), and my self confidence (internal condition).  I simply am affected too much by other people's opinions on how we raise our child. 

I am not a black and white thinker so I'm always receptive to new information and new ideas.  I value that I am like this but I find it difficult to emphatically state that "I know THE answer."  I'm always amazed with people who feel they know the answer to things which seem unknowable such as religion, parenting, education, politics.  My beliefs are fluid, are often reevaluated and, at the most, I have strong leanings.  With the exception of a few basic concepts such as my belief that all are equal, that there is never an excuse for cruelty, and that diversity is a blessing, I rarely make absolute statements.

At this point, I have not found a school which we feel would work for our son.  It is not uncommon for parents of children who are twice exception (2e - gifted and learning disabled) to shop around endlessly for a school which can handle their child's behavioral and sensory issues (for example) along with their being gifted.  At this point, our school district has given us two options:  the school where we have had very difficult issues with the principal or a special education class.  Neither are appropriate.  

When reading about the experiences of other parents with children on the spectrum who have decided to homeschool, I was touched by a quote from one mom:

"When Jalen was going to school, it was like trying to pound a square peg into a round hole. There really wasn’t anything in the system appropriate or healthy for him. Leaving him there while I tried to fight for what he needed seemed counterproductive to me. We just didn’t have time for that — he was fast on the way to developing mental health issues on top of his other problems because of school. It was healthier for him and me to leave it behind."

I wanted to call out, "I hear you, sister!" when I read this. 

In my humble opinion, our educational system works for most children, those children in the middle of the bell curve as well as those on the outer edges but not for those who straddle both extremes such as my son.  I can't say that there aren't some 2e students who have been fortunate enough to find a good educational setting but, it seems, that they are few and far between.  At best, parents have to fight tooth and nail to get the correct services.  My son's brief experience at school was so negative (they called the police on my 5 year old for having a typical autistic meltdown) that I'm not willing to give them a second chance.  Not only did I disagree with their treatment of my son, I was saddened by how it adversely affected my son.

Although I may be uncomfortable defending our decision to homeschool our son for the time being, I know deep down that we're making the right decision.  As time goes on, we will reevaluate this decision, we will continue to view other schools and classes and we will make any changes which we feel are necessary and in his best interest.  Institutions such as schools are important for society - for most of society.  Education, however, regardless of what form it is in, is important for all and if an institution cannot provide the right environment, then it is our duty to find the best possible way whether it is controversial or not.

As for my own proprioception-like issues, I am comfortable with my feelings (position), I'm working on taking a stand as much as I can (position), I'm aware of my need for inner balance (equilibrium) and I'm building my self confidence (internal condition).  I may not have an occupational therapist but, thankfully, I do have my husband, my family and my friends to help me regain my inner strength.  Although I'm used to having controversial beliefs and ideas, my belief that my son deserves to be educated appropriately (in whatever setting) is the most important one for which I am willing and prepared to fight.

Wednesday, September 22, 2010

Endless quest

I can sympathize with people who are on endless quests for youth, beauty, immortality and other seemingly ungraspable dreams.  The pursuit can be all consuming.  Searching for the next best thing to get you there - wherever there might be.

Thankfully, I'm relatively ok with my age and some would even say I'm young (all those older than 37 years old but certainly not those younger than that).  Beauty?  Well, what is it anyway really?  Even the beautiful have ugly days and the less attractive have beautiful days.  Why make my life harder by worrying about how I look to other people?  Granted, I want to be decent and would not enjoy being repulsive but, other than that, who cares?  As for immortality, eh.  I'm here now.  I'll be here until I'm not.  Pure and simple.

Thankfully, I'm not in pursuit of those dreams.  Instead, I'm in pursuit of the next best thing which will make our lives easier.  I can remember when this pursuit began:  when my first son was born.  Since then we have sought the help of a huge variety of professionals:  lactation specialists, psychologists, neurologists, psychiatrists, occupational therapists, autism tutors, and so forth.  This is not including all the specialists for the twins.  I won't bore you with the additional details.

In addition to the professionals, we have read a billion books with the answer.  THE ANSWER.  I don't know how many times that I have read about a book and rushed to amazon to buy it because it gave me comfort to know that this new book would make something better.  Something. 

From the days before my oldest son's diagnosis, I was already going down the correct path to helping him by creating schedules of the day - I noticed he did much better if he knew what his day was going to be like.  I spent countless hours creating schedules that not only contained an accurate picture of his day but made it fun and colorful so he'd enjoy it - until he didn't anymore and I had to create a different one.  Every time I made one, I just knew that this schedule would make everything run smoothly.  I have a library of these schedules, signs, and systems we've used over the years because I can't seem to get rid of them.  Interestingly, my son feels great nostalgia for them and occasionally finds them in their new hidden spot and drags them out to look at them.

For a person who really believes in the value of simplicity and in not indulging children in order not to create an unrealistic sense of entitlement, we have an incredibly huge amount of toys.  Toys for rewards, toys that teach, toys which help certain muscle function, toys which help with stimming and so forth.  I find myself driven to go to a store to get the next thing that will reward my child (the oldest mostly at this point but the youngest as well).  Although we have slowed down on this aspect of the pursuit, it's still there occasionally.  It's hard not to feel the need to find something to make your child happy, to help them grow when their life is filled with such stress and difficulty.  We're slowly trying to find a balance between indulgence and positive facilitation of growth.  I've also found that it also helps to hide the catalogs.

Our latest focus is on education.  What is best for our son?  (The youngest is in preschool and is doing well.)  Is it more important for him to be in a school setting in order to learn to basically do what he doesn't want to do for 3 hours or is it more important for him to learn naturally and at his level?  (He is gifted which makes things very difficult because his behavior issues are that of an autistic child but his intellect is advanced for his age.)  Today, I visited our school district's best option for my son at this point.  Although I was impressed with the professionalism of the teacher and could tell that they would likely be able to help my son with his behavior, they were seriously behind my son's academic capabilities.  How can I reconcile that?  At this point, I feel I have to give homeschooling a good try before I have him placed in what is essentially a special education class. 

It's difficult not to stress over the right thing.  There are no real answers because no one can tell the future.  I have to take a step back and focus on our goals and to consider what is ultimately important.  So much of a person's success is driven by their inner foundation, how they feel about themselves, how secure they are.  Putting my child in a class that is below him academically so that he can try to sit still for 3 hours is probably not going to do that for him.  I think I can help him with his behaviors with the help of trained professionals while subsequently teaching him at a level more appropriate for his intellect.  I'm hopeful that this will help provide him with that solid foundation and, perhaps, in the future he can return to a school but only if they see him for what he truly is which is a very bright, young boy.

For now, our pursuit for making things better is focused on education but it is also focused on socialization (via social skills classes), occupational therapy, and several other avenues for improvement.  Some things may not prove to be effective in the long run but I doubt that we'll ever stop searching for "the" thing which will make life just a little bit easier for all of us.  Of course, if it comes right down to it, like beauty, youth and all those other pursuits, I need to balance our pursuit for "better" with a healthy acceptance of where we are and to remember that what matters most for all our children is that they know that they are loved for exactly who they are right now.

Monday, September 20, 2010


Here is where I am.  Here is where my life has led.  There have been many times in the last few years when I wasn't happy with how my life had turned out.  I was confused, frustrated, angry, hopeless and depressed.  There were occasions when these dark periods would last for days and weeks which would be followed by a more peaceful and positive outlook.  Struggling with where our life had led us and our children, I was mired in grief that was disguised with emotions which I could process more easily.  As the dust is settling and our understanding of autism has ripened, I'm finding that the dark days are more manageable, predictable, and less frequent.  When clouds of uncertainty, fear, anger, exhaustion cast their shadows on my mind, I at least recognize it as temporary and deal with it as best as I can.

There will always be dark days.  There will always be times when I will be crushed with emotion.  The difference is I accept that and I won't let it stop me.

Although autism is incredibly challenging in its various manifestations, it is incredibly beautiful as well.  My children, autistic or neurotypical (NT), are all precious to me.  I am fortunate that my children are capable of affection and of speaking and I try to soak that up.  My heart is filled with love when I think of kissing each of my babies, of holding them, looking at their little hands and feet, seeing their eyes light up with delight.  I am rich.

Recently, fate has offered me clear directions as to which way my life should go.  My gut has guided me and I have listened.  I have recently begun homeschooling my oldest child and, as much as I never thought I'd homeschool my children, I'm pleased about how right this feels.  I feel that my life may have led me to this moment and it gives me peace.

I was raised in a home where the love of learning was ever present.  Even as a fickle, young girl whose attention was often elsewhere (on boys), I was influenced by my parents' constant encouragement to seek more knowledge about any of our interests.  A frequent joke in my family was, "we have a book on that."  Our family library was relatively small but seemed to contain an almost magical amount of information.  Although I wasn't always interested in committing my attention to all the information available to me, I was strongly influenced by my parents to be curious and to seek answers to questions I had.  As a result, I have always loved to teach because it's such a fun experience to share knowledge about our fascinating world.

Now, I have children who love to learn in ways that I never did as a child and, frankly, I'm addicted with teaching them.  After events made it very clear to me that my oldest is not ready for "school", I have reanalyzed what teaching and learning is all about and what going to a school really is for any child.  Although I'm a big believer in a school setting for most children (my other children are in public school now), I'm also a big believer in not trying to force a child into something that clearly does not fit.  Until I find a school which can address his autism and his giftedness, I will direct his education from home in a manner which doesn't teach him that there is something wrong with him and will instead allow him to blossom.

As I ponder my journey over the last year as well as where my entire life has led me thus far, I'm energized and determined.  Things may be rough at times but my path is clear to me and I look forward to giving all my children an exciting and enticing learning environment similar to the one in which I was raised.

Saturday, August 21, 2010

To all the friends I called before

We had friends.  We had quite a few friends actually.  It wasn't uncommon for us to have parties at our house.  We'd often spend a ridiculous amount of money on food and beer just to enjoy our friends in our home, together.  My husband and I met through friends and our friends were an integral part of our early days as a couple and, later, as a married couple.

Then life happened.  First, it was infertility which turned us inward.  Then it was our first child, a move to the suburbs, and followed by twins.  Our world of seemingly carefree, fun times was over and we struggled to get through each day and to make it until the next pay day.  We couldn't afford to have parties or babysitters.  The stress of raising an undiagnosed child with autism while caring for newborn twins made us turn even more inward.  To get out with the kids opened us up to stress (since we were incapacitated by our oldest son's unusual responses to the world) and  for us to take turns going out alone only put more stress on the one who stayed home with the kids.  There was no way to balance our role as parents and our desire to enjoy our friends. 

Then we moved out of state from Texas to Utah.  Since, by the time we moved, we rarely saw our friends while in Texas, the move to Utah only created a physical distance from our friends.  Thanks to social networking sites, we can keep a tab on many of our friends and have been fortunate to maintain our connection but the days of chilling together while drinking good beer, talking/debating about music and idle chit chat are over. 

I miss those days.  I miss my friends.  I feel I owe them an explanation for our distance but I'm not sure where I would begin.  I guess I would want them to all know that we do love them and we cherish our time together.  We will continue to try to keep up with their lives via Facebook and other means but we will likely continue to suck at emailing, calling or anything more personal than saying we "Like" their status or, occasionally, writing a brief comment on their status.  I wish we could do more.

Another sort of distance that has been inevitable although less apparent is that of how our world's are so different.  I'm sure for many of my friends I appear obsessed with autism.  Facebook status after another regularly include the "a" word.  I agree that I am obsessed.  It is such a huge part of my life these days that I feel I'm often swimming in it.  With two children on the spectrum, we are affected by autism the moment we wake up until our last child falls asleep (and then that's when I do research that I couldn't do on autism while they were awake!)  Although I try not to make all my FB statuses about autism, I'd be lying if I didn't admit that it is what is on my mind. 

For those not living with autism, my statuses must seem dreary, redundant and even boring.  I understand.  Prior to having autistic children, autism was a mild curiosity to me.  Now that my children are affected (positively and negatively) by it, my heart and soul can't help but jump in and attempt to understand it for each child's sake and for our family as a whole.  This is my life's calling.  My darling babies who call me "Mommy" and rely on me to make their world a safe, accepting and loving place need me to focus on autism - not just  because of its challenges but because I want to help their beautiful souls to thrive and to share their uniqueness with the world. 

There may be a time when I can chill out, when I can shift my focus to other things.  For now, though, less than a year after my oldest's diagnosis and only a week since our youngest's, it's my persevere.  For all my dear friends who may ponder how much I have changed, one thing I would want them to know is that my love for them hasn't faltered.  I just have a job to do which requires every ounce of my energy and, unfortunately, I am incapable of being the kind of friend I would want to be.  Hopefully, one day, our friendships will get re-energized and renewed.  Until then, though, I wish only the best for all my compadres, and I want them to know that I think of them all often.

Tuesday, August 10, 2010

Margaritas and manicures

Yesterday, I gave myself an assignment which I nearly failed. It had been another stressful day made more difficult by my youngest having a cold.  There were moments where I felt like my head would explode such as when my youngest repeatedly insisted that I pick a new show for him to watch.  When I'd ask what he wanted, he'd say, "the one I want."  I'd try it a different way, "Tell me the name of the show you want to watch."  He'd reply, more agitated now, "the one I want to watch."  I'd then pick a random show and he'd flip out because it wasn't the show he wanted to watch - the one I was supposed to already know. (For those less familiar with autism, this is a good example of his lack of theory of mind.  He does not understand that I am not thinking what he is thinking.)

By the time my husband came home, I was mumbling incoherently to myself - at least that's how it seemed.  I grabbed my gym bag and made a run for it.  I took out some of my frustrations and stress on the equipment, focusing my negative energy on each rep, "1, 2" as my feelings of frustration and hopelessness turned to anger and sadness and, finally, to kinetic force.  After releasing a lot of the stress, I rested in the spa and then the sauna.  Feeling cleansed so to speak, I left the gym with time that I could use for whatever means I desired (a whole hour before I had to return home!)  In an effort to help me nurture myself (and thus to help me through the grief I am feeling about my youngest son's recent diagnosis), I challenged myself to do something totally stupid and selfish:  I had to go and buy something girly. 

I went into the store considering buying new lipstick and came out with a french manicure set.  Go figure.  Of course, it took me ages to pace back and forth down the makeup aisle to determine what was the most cost effective yet desirable thing to purchase. For those who know me, I'm not a major girly girl.  Since I have had children, I am even less of one due to lack of time, energy and funds.  Doing my nails is such a luxury (paying someone else to do them is a luxury which I can't afford) that it made me giggle.  It's so frivolous compared to what my energy is normally directed toward that I felt almost silly.

I wasn't done yet though.  I had also decided that I wanted a margarita.  Having grown up in Texas, I am quite fond of good margaritas.  I know margaritas are available nationwide but they still remind me of home.  Before I could talk myself out of it, I ran in the state liquor store and grabbed myself a mix.  It would have to do and it did.

After having released my stress at the gym and entertaining myself with an almost childish desire to play dress up, I sat back and watched a very entertaining show with my husband.  The two of us giggled like kids while I sipped at my frozen margarita while occasionally admiring my new nails.  It was a mini-vacation and we have to remember to go on them as often as we can.  Of course, my youngest did show up during the second show but, with my patience and compassion restored, I welcomed him into my arms and held him as he slept peacefully.

Sunday, August 8, 2010

Spectrum of emotions

Little did I know that when I first started this blog that one of my twin boys would later be diagnosed with autism.  Ten months after my firstborn child's diagnosis, we find ourselves again trying to process the wide range of emotions that such a diagnosis brings about.  From denial and skepticism to relief and mourning, my husband and I each are experiencing emotions and not necessarily the same ones at the same time.  Unlike when our first son was diagnosed, though, we feel a little more equipped to handle it and have a better idea what we're facing.

As I have stated in previous posts, we have had our concerns.  As more proof to the concept that "if you know one child with autism, you know one child with autism," our sons have different presentations of the same condition.  I am truly better able to appreciate that autism is just a part of who my children are and not their entirety and that their form of autism is just as unique as they are as individuals.  Despite their differences, though, my boys' distress and frustrations and our struggle as parents to help them is the same.  When we found ourselves grappling at trying to understand our third son, we began to recognize the same emotions, concerns and frustrations we had had with our firstborn child prior to his diagnosis.  Our instincts told us that there was something similar going on with our third child and that we owed it to him and to our family to see if there was any merit to our feelings.

Heading into the evaluation, I found myself preparing for it by writing up a document of all of our concerns.  I also made sure to clearly spell out all his behaviors which were contradictory to an autism diagnosis.  Perhaps I was secretly hoping that the fact, for instance, that my son makes good eye contact would rule out autism.  I'll admit that I was hoping they'd say he just had OCD or an anxiety disorder.  Of course, even though the diagnosis is helpful (so that we may be able to help him better), my son is who he is regardless of his neurology.  He is still my little, darling boy who delights me with his funny, energetic and mischievous, little self.

As a family, we are now shifting from the idea of having one child with autism and two neurotypical (NT) children to 2 children with autism and one NT child.  Of course, now that our third has been diagnosed, I can't help but wonder if we should have our 2nd son evaluated but I seriously can't go there right now in my mind because that is just too much for me to handle.  Additionally, at this stage, we have not had the same concerns with our 2nd son that we have had with our other boys.  I can't help but worry about our NT son and how having two brothers on the spectrum will affect him.   Thankfully, the boys all love each other despite their frequent battles and, despite the difficulties, his brothers are hysterical and will enrich his life as much or more than they will challenge him.  Certainly, we have to make sure all of our boys know that they are each special and valued and that, autism or not, our boys have an equal place in our hearts.

Tonight, I sang my third son to sleep because he needed me to "teach him how to close his eyes" and to "make sure the tears don't get on his face".  One of many requests that he feels that only I, his mother, can fulfill.  Sitting near his bed, I kept my eyes open so his could close and I sang to my sweet, little boy as he slowly fell asleep.  Helping a scared child to go to sleep is certainly not unique to any parent and I'm reassured that I can do such things for him and to help him feel safe, loved and at peace with the world.

Friday, July 23, 2010


Recently, I was discussing burn out with my therapist.  When asked to describe it, the word that came to mind was complacent.  For years now we have been struggling to potty train my son who is now 5 1/2.  I have spent countless hours meeting with his psychologist, creating and following strategies and working with my son.  With the exception of a short period of relative success, my son is not trained. 

It is devastating to me.  My handsome, brilliant son seems so disconnected from his body that he can't seem to process the information his body sends him and, therefore, he seems unaware that he has had an accident.  If I hadn't been able to successfully potty train his brothers, I'd feel completely inept.  As it stands, I feel only inept when it comes to him.  It's hard not to feel that I should be able to do this, to figure this out.  I have to. If I don't, his future will be so greatly limited and I can't stand to let that happen.  Despite these strong feelings, I find myself feeling completely helpless and I almost give up.

When discussing these feelings with my therapist, she suggested that I consider my complacence more as an acceptance of my son's disability.  Whew.  Despite all the hours of working with my son, despite all the appointments with psychologists, it was clear to me at that moment that I was afraid to fully accept my son's disability as it stands at this moment because that would mean I'd have to face it.  I have to let down my protective shield of denial and see his condition for what it is.  I have to accept that he may never be trained or that it may take years and years and years.  I simply don't know and the experts don't know either.

It's so hard not to be frustrated with him and to try to explain why he needs to use the bathroom.  He simply isn't there yet and I have yet to find the solution that will get him there.  I have to acknowledge that I'm not in control here and my son needs me to accept him exactly as he is.  He needs compassion, understanding and an open mind to help him - not just reward systems, rules and consequences.  I need to expel my negative feelings and find compassion and to listen, truly listen to him, in order to help him.  I also have to prepare myself for the possibility that he may never be trained even though I find that even too hard to type much less feel.  I simply can't give up but I have to stay in the present with him.  Hopefully, with a calmer, more peaceful mind, I will find a solution that will help him or I simply have to wait until he is truly ready.  Either way, I'm working on feeling less complacent and beaten by shifting my focus on finding peace with my son's disability as it is today.

Sunday, July 18, 2010

My path

With my heart beating and all my senses alert, I continued down the rocky trail.  I was hiking alone in the Wasatch Mountains on a trail that I didn't know.  A part of me worried if this was pure foolishness.  Was I putting myself in danger by walking out here by myself?  I wasn't that concerned about wild animals although they do live in the mountains but I hoped that they (the big ones) would be farther out and not near this relatively popular trail.  I was more concerned encountering a human with bad intentions.  Just in case, I made myself hyper aware of my surroundings while occasionally patting the knife in my pocket. 

Sweating and with muscles burning from hiking, I'd occasionally find a shady spot near a rushing mountain stream to rest and to reflect.  Feeling the coolness of the mountain breezes, I'd close my eyes and pray for strength, clarity, compassion, endurance and so on.  I felt a calmness in me that I hadn't experienced in quite some time.

Since my first solo hike, I have gone several more times.  Each time, I worry about my safety but I feel that my sanity is the most at risk some days.  Quite frankly, being in our house can be maddening.  It is hard to raise a child who has extremely loud fits of anxiety over things which are simply mind boggling.   Some of my most difficult moments these days have been with my son who has not yet been evaluated.  His need for precision and for things to be just so is incredibly frustrating.  Just today, he flipped out because his measuring tape (I bought him a small, real one so he could measure things) was broken.  It wasn't actually broken I discovered but he considered broken because the metal tab from which you pull the tape out of the body of the tape measure was not centered at the opening but was slightly off to the side.  Of course, it wasn't just "broken", it was BROKEN!!!!!!!!!!!!!!!!!!!!!!  It is difficult to calm a child about a concern which seems absolutely nuts to me.  Despite the difficulty, I do try to swallow my perplexity and frustration and to respond compassionately to his anxiety but I admit I'm not always that good at doing that.

This weekend I have found myself dumbfounded by some of my son's behaviors.  I'll admit to everyone that I do not know whether he has autism.  I do know that he is showing signs of OCD (obsessive-compulsive disorder) which can be a part of an autistic diagnosis or he could simply just have OCD.  I know that it will take the evaluation of a skilled psychologist to make the determination but, regardless, I know that something is not quite right.  Not only do I owe it to him to find out what may be going on, I owe it to our family because some of his behaviors create very stressful situations that no one in our family is immune from. 

Despite my good intentions and despite the very real impact some of his behaviors are having on all of us, I find myself defending my concerns with other family members who are not around him as often as we are.  For some, the process of being diagnosed is a very rigid, precise process.  I agree it needs to be.  I also believe that a mother's instinct can be very powerful and that it needs to be (and is) a part of that diagnostic process.  It's hard not to feel angry when all the tears, the concern, the stress that we continue to experience is somehow considered somewhat invalid until a professional decides to agree with us. 

I will state emphatically that I do not want anything to be wrong with my child.  Why would I want that?  What kind of mom seeks an unfortunate diagnosis?  What I am seeking are answers - why does he repeat the same phrases frequently?  Why must he have a train with all its pieces, the cargo, the person and the remote before he can go to sleep?  Why is a slightly wrinkled piece of paper broken?  Why do any of these things cause him so much distress?  Why aren't our assurances as parents enough to counter his very precise needs?

Answers.  We are seeking answers.  We are seeking support. 

Alone on the trail, I found support within my own heart and in the vibration of life surrounding me.  In the arms of nature, I bathed in its beauty and felt peace.  Humbled by my small part in this world and awed by the mountains grandeur, I surrendered my worries to the world around me and found the strength I needed to return home and to care for my darling children who need me.

Friday, July 16, 2010

Pre-diagnostic perceptions

Tonight, I'll admit that I'm not in a good mood.  I would detail why but that would require my publicly discussing ongoing discord between myself and a family member.  Suffice it to say, the upcoming evaluation of my other son (about whom I have concerns) is triggering lots of emotions and, unfortunately for me, some of the negative emotions are being projected my way.  I may understand it and even forgive them but that doesn't mean that I enjoy it.  Vague enough for you? 

Anyway, since I can't write about what I'm dealing with currently, I thought it would be interesting to post something I had written about my son prior to his diagnosis.  The following is a description of a stressful trip to the airport with my then 4-year old son.  I find it interesting how much my perspective has changed regarding his behavior and how voluntary it is/was.  Hopefully, this will offer a perspective regarding how a parent whose child is undiagnosed reacts to one whose child is.  Enjoy.


In the grand scheme of things, the moment was trivial. Compared to the horrors being experienced by those in Mumbai and even ordinary folk struggling to live their lives anywhere on the globe, it was not even close to being a truly stressful situation; however, since I can only experience my own life (although I do empathize with others), I found myself baffled at how completely my 4-year-old could make me feel paralyzed and inept in front of countless witnesses. What a joy to behold perhaps but definitely not one to experience.

Before describing this special moment with my child, I'll preface it with a little history. The reason it was just he and I and not the whole family was due to two factors: money and maintaining our sanity. It already cost us $1000 to fly just the 2 of us so it would have been ridiculous for 5. Plus, who is seriously insane enough to fly with 3 kids 4 and under?

My son hadn't flown since he was 6 months old. He might as well never have as far as his memory was concerned. I was entering the realm of new and unknown experiences with my child which, in the past, hadn't always produced the best results. Being the "smart" parent, I thought of ways to prepare him for the trip. I made one big mistake. Thinking that going through security might be frightening for him, I thought it might be helpful for him to watch a video I found on the TSA's website regarding flying with children. It shows children happily going through security. It shows how they might use the wand to check for metals but it's all happy go lucky. No problemo.

Yeah, well. You can guess where this is heading. We get to security and he starts to panic. I manage to get his shoes off and his coat and put them in the buckets. I get his luggage up and mine. I pick up the now screaming child and walk through the metal detector. No beeps. Whew. Ok, the worst is over. . . except he runs off and down toward the guard at the end of the security area who tries to stop him which makes him even more scared so he turns back and runs BEHIND the security area where about 10 guards are standing completely baffled as this frantic, panicking, insane little 4-year old literally weaves in and out of the guards desperately trying to escape this frighteningly scary place while yelling, "no metal!"

So proud. So very proud.

Obviously, we get him out of there and we move along. We gave the guards a little something to chuckle about. It took a few minutes for my blood pressure to go down and to remind myself that patience is actually a virtue and that it is sort of in my grasp if I would stop feeling the need to strangle the little rascal.

This same child, who wove in and out of trained security guards screaming like a banshee, then boarded the plane and entertained (in a good way) the passengers nearby with his cute ways such as asking a nearby 12-year-old what he was thankful for. It was probably good that he didn't ask me that shortly after his tirade but, in the true spirit of a parent who understands the depth of a parents love, I'm thankful for that little rascal even if he can embarrass me like no other.

Thursday, July 8, 2010

Roughing It

Lately, I have found myself contemplating strength, particularly when I'm at the gym making ugly faces as I try to lift the weights just one more time.  Although my primary motivation for joining a gym about 9 months ago was to help me manage stress, another reason I joined was because I felt that I needed to be as strong as possible in order to raise my autistic son and his twin brothers (one of which may be on the spectrum).  Not all children on the spectrum are prone to aggression, but mine certainly is.  From punching me in the face, throwing chairs at me and, tonight, throwing his seemingly benign Spiderman, mechanical toothbrush in my face, I fear for the day that he is stronger than me.  I can only hope that he'll be able to manage his emotions better then and I won't have anything to fear.  Unfortunately, I know better than to assume that he won't.

Having gone to the gym as often as I can possibly go, I am stronger than I have been in a long time if ever.  Of course, I'm stronger in a physical sense but my inner strength is challenged on a daily basis and, unlike muscles which can stay strong with consistent exercise and good nutrition, my inner strength waxes and wanes.  I am definitely not always strong but, then again, some days I seriously kick butt.  Today, I wouldn't say that I was particularly weak or strong.  Up until this evening, I regret that I was mostly just resigned.

Physical strength now seems so easy to me compared to being a strong mom.  As I was considering this, I remembered reading about a mom who is an Olympic weightlifter (Melanie Roach) and has an autistic son.  I found a quote from her to which I can relate (as much as a non-weight lifter can!):  "People look at me funny when I say that weightlifting is the easiest part of my day, but it's true."  Having a child with autism does build a sort of strength to handle some obstacles or challenges (such as weight lifting) by providing a clear perspective regarding what are challenges that can be met, which ones are worth fighting and which ones are simply out of our realm of control.  Oftentimes, my home life is complex, stressful and challenging but, fortunately, all the many things that used to aggravate me (an unresolved issue with health insurance, a rude person, a bad hair day) are simply nothing.  They are insignificant.

Tonight, I found another strength - the strength of forgiveness.  After my son threw the tooth brush hard at my face, I left the room to calm down and to see if there was any damage.  My nose was swelling but it would likely only be bruised in the morning.  I'll admit that I felt sorry for myself.  It's not pleasant to feel abused by your child.  After searching for my strength and calming myself enough to understand what had just happened, I went back into my son's room.  My son truly felt bad for what he did.

As background, my son has a bad ear infection which we're treating with ear drops and oral antibiotics.  When my son is experiencing pain, he lashes out like a wild animal (no real exaggeration here).  He hates the ear drops because he claims it hurts.  I have to give him the ear drops 3 times a day.  My son weighs 50 lbs and physically resists getting the drops.  Earlier today, I did manage to pin him down and give him the drops but it wasn't fun for him or for me.  Tonight, as my husband and I were approaching him to administer the drops, he lashed out in defense of himself (as he sees it) and threw the toothbrush to keep me from getting near his ear.  Despite my throbbing nose, my husband and I gave him his drops and he screamed bloody murder but eventually settled down.

As a parent, it is my job to care for my children whether they like it or not.  Clearly, he needs the ear drops.  Despite my explanation about how the drops are making his ear better, all he knows is that the drops hurt really badly (from his standpoint which may be due to sensory issues), he's afraid of them and he panics when we're about to give it to him.  It takes that immense strength fueled by parental love to care for a child who not only doesn't appreciate you for helping him but actively and violently resists it.

As I mentioned earlier, I went back to my son's room after I had calmed down.  Sitting by his bed, I calmly explained how I loved him more than he could ever know and that nothing he did would change that.  I also explained that I understood why he didn't want me to give him his drops but it was my job as his mom to take care of him.  I finally explained how he and I needed to work on his aggression, that we needed to come up with a way for him to tell me he's feeling like he needs to hit or lash out so that we can help calm him down before he really hurts someone.  I could tell he truly felt bad about what he did but that he still felt justified for protecting himself (which is how he sees it).  I found myself comforting him, my heart throbbing more than my nose as I prayed for him.  I found the strength to forgive him, understand him and to love him even more.  Tomorrow, there will be more ear drops and more resistance, but maybe he and I will find a better way for me to help him without either of us getting hurt.


Friday, July 2, 2010

A Different Kind of Trigger

I found myself laughing as I loaded up one of my boys in our car to go shopping.  I was going to a hunting store - and a huge one at that.  Amazingly, I was doing this willingly without being held at gun point.  Hell, I had been looking forward to it all day.  I can safely say that I never saw this one coming.

For those who don't know me and my immediate family personally, we're not exactly hunting types.  It's not that we're just spoiled, naive city types.  It's just that it doesn't appeal to us.  I'd much prefer to photograph nature than to shoot it.  As for those who do hunt, I figure to each their own.  It's none of my business and I have long sense shed any self-righteous opinion about it.  Regardless, though, I have never had the desire or need to go to a hunting store and, tonight, I took one of my 3 year olds (the one who we suspect may be on the spectrum) with me to Cabela's (  Good God Almighty, there were more dead animals in that store than in the whole state of Texas.

As I led my little boy along with me, weaving in and out of the real hunter types, I wondered if they realized they had a former vegetarian, hippy freak in their midst.  I considered exaggerating my Texas accent just in case it might win me some points with some of the good ol' boys I had to talk with about their products.  Particularly, we were there to buy their sound-reducing ear muffs.  (They're over in the hunting accessories section in case you're interested.) 

Surrounded by the dead heads of an amazing number of beasts, and in the shadows of some serious fire power, my little boy and I debated over which ear muffs we should buy.  On the long drive over, my son repeatedly stated that he wanted his to be green and that his big brother's should be blue.  After finding the best shade of green ear muffs (which reduced sound by 23 dcb), I then struggled to determine which ones I should get for my older son since his hearing is a bit more sensitive than my 3 year olds.  After talking to the aforementioned good ol' boys (who humored me with my non-hunting questions) about whether these would fit small children, I finally decided on these gi-normous ear muffs that reduced sound by 30 dcb. 

Since the store is more than just a shopping experience, I took the opportunity to show my son around the place to make it more of a special one-on-one time event for us.  Avoiding explaining how all the dead heads managed to be hanging on every conceivable part of the wall and ceiling, I led him over to the fake mountain at the back of the store where full-bodied, dead animals were displayed in an educational fashion.  It wasn't too different from being at the zoo except, of course, these animals were very much deceased yet poised in quite natural poses (not natural poses for the dead but they hoped you would take a leap of faith and pretend they were still living and breathing.)

So, enough of my cynical review of the store.  I actually do appreciate that they carry good, affordable products for my children.  Once we had found our ear muffs and had sufficiently toured the enormous store, we proceeded to the check out thinking that this adventure was nearly over.  Perhaps this is where my naivete showed itself.  As a first time customer of such a popular store, I was surprised by how incredibly slow it was to check out.  Of course, if I had been alone it would not have concerned me.  The fact that my likely-to-be-on-the-spectrum child is not inclined to stand still for 1 minute much less 15-20 minutes was a little nerve-wracking.

My son is cute and people often find him adorable unless he starts to show what would be viewed as unusual or rude behavior.  At that point, people seem to silently revise their opinion.  The men who were in line with us (and, yes, there were women but mostly in the company of men), were pleasant with my son and I at first.  Occasionally smiling or tolerating his toddler-ness, they all held their products and waited patiently in the long line.

As each minute ticked by, my son began to get a little hyper.  He would walk up to the guys and try to touch whatever it was they were buying (thankfully, he didn't try to touch the bow the man behind us had).  Despite that, his behavior was still tolerable until he began to gleefully head butt me repeatedly.  Trying to calm him down and give him some sort of sensory stimulation which would offset the head butting, I squeezed him, tried to distract him and prayed the line would hurry the heck up.  The body language of the men near us began to be more distant and guarded as those around us tried to understand why this kid was head butting his mom in the gut repeatedly and why this woman wasn't beating the tar out of her kid for doing it (which I don't advocate anyway but you know what I mean).  I found myself pondering whether I should explain to those around us that he was autistic despite the fact that we don't actually have an official diagnosis.  In the end, I didn't say anything and we eventually purchased our ear muffs and left.

Sporting his new green ear muffs (which he subsequently wore to bed), he tested out how loud he could be by yelling and singing at the top of his lungs while I quickly drove home on the freeway.  As I was debating whether I should buy myself a pair of ear muffs, my heart lurched into my throat when I heard the screeching sound of a car, thinking a wreck was imminent.  Of course, it ended up being my son creaming in the back seat and I subsequently lectured him emphatically about how he COULD NOT DO THAT AGAIN!

Returning home, my older son gladly tried on his ear muffs (which he subsequently wore to bed), my other 3 year old (the one who is likely to be neurotypical - NT) began to ask for his.  Silence.  Uh.  The fact that he is the mostly likely of our children to be NT doesn't mean that he understands that his brother's aren't NT and that he doesn't need the ear muffs.  Scrambling for a way to make him feel included, I decided that I would quickly take him to buy some new Spiderman shoes he's been wanting before the stores closed.  My idea worked and the ear muffs were no longer appealing.  Whew.

Having barely put down my purse from the last trip, I quickly grabbed it again, loaded my other 3 year old in the car and drove to Payless.  They were still open!  Yes.  After quickly finding the groovy shoes he wanted, we went up to wait in line.  There was only one person ahead of us this time so I felt confident we'd be home soon.  Yet again my naivete reared its ugly head. 

In front of us was a woman who was returning 12 pairs of shoes (not exaggerating).  She was exchanging a few as well.  With a very sweet and kind voice, she put the cashier through some ridiculous loops.  With patience of steel the cashier handled her every question and request with professionalism.  I, on the other hand, who is about as low maintenance as a person can get without being pathetic, was getting annoyed.  My son, however, was awesome.  He and I talked and laughed as he looked in a mirror at himself and asked me questions about various things near the register.  His body language was calm and cute and he didn't once think it would be funny to slam his noggin into my gut.  Where did this child come from? 

After the sweet talking princess finally got every last dime she expected, it was our turn.  Confidently, I swiped my card.  Entered my PIN.  Waited.  Error.  Swiped it again.  PIN.  Error.  The cashier swiped my card as a credit card.  Error.  She called the manager.  Not there.  Swiped again.  Error.  Manager called back.  Reboot the computer.  Five minutes later, it was back on line.  Swiped it.  Error.  Meanwhile, my son was still being awesome - so awesome that the cashier gave him a sticker.

The store was going to close in 20 minutes.  Their computer was clearly down.  I had no cash.  I didn't want my darling boy who had his hopes on these shoes, the shoes which were to help make everything more fair for him, to be denied him.  Thankfully, the cashier made the suggestion that I run get cash.  Duh.  Trying not to run like a freak while dragging my little guy, I managed to herd him to the store, bought some fruit snacks and asked for cash back.  Walking as quickly as I could manage with my laid back little dude, we got back to the store before it closed, bought the shoes (with a 30% discount because we were not annoying, sweet talking people) and left the store and headed straight for home.

If the universe, God, or what have you wanted to give me a clear signal about the difference between how an NT child and a child who is not quite NT would behave in a similar situation, it/he/she sure succeeded.  The difference was so vast that I find it amazing that it wasn't so obvious before. 

As I tucked my boys in for bed (two of them wearing enormous ear muffs and one covered in his weighted blanket), I felt the strong love that I have for each of them.  Although life is harder because one, if not two, of our boys are on the spectrum, my love for each boy, NT or not, is the same:  it pulses through me.  I will have done my job well if I can make each of them know that they are special whether they have special needs or not.

Thursday, July 1, 2010

Behind the Looking Glass

From the observation room and behind a two-way mirror, we parents huddle together.  Splitting our focus between our children and on each other, we discuss what we're observing and we share concerns, tips and ideas.  In some ways, our worlds are as different as our children are and in others we all are in the same boat.  Our backgrounds are different, we come from different areas of the city - some quite far away since this is the closest social skills class to those cities outlying the Salt Lake City area.  Undoubtedly our religions, political views and life histories are different but all of us have the benefit of being able to afford a $300 class that meets once a week for an hour and a half for 7 weeks.  Despite the reason why we are all here, we are privileged that the social skills class is even an option for us.

Children on the autism spectrum have difficulty with social skills.  Prior to my son's diagnosis, I would reassure myself that my son wasn't autistic by thinking how "social" he seemed to me.  He loved to talk.  He made eye contact, I thought.  He seemed to understand emotions as far as I could tell.  It wasn't until I began to really understand autism that I realized how my son differed in his interaction with others.  For one, he couldn't seem to connect with his peers.  Being the arrogant parent we all can be, I put it off as his being smarter than his peers and that they couldn't understand him.  When he had asked a young girl at the library (when he was less than 2 years old) what her favorite letter was and she didn't respond, I laughed because most 2 year olds wouldn't have an answer to that and so, of course, she gave him a blank stare and walked off.  Little did I know that this was an early sign of autism:  the somewhat random, odd question about a special interest.  Of course, it's more complex than that but that's my simple explanation of it tonight.

As time went on and my eyes began to open, I realized that my son just doesn't have the innate understanding of social interaction.  Although he loves others very strongly and in a way that my NT child doesn't seem to, my autistic son is very self-involved and self-focused and his conversation reflects that.  As far as he is concerned, his interests are interesting to everyone and everyone wants to hear everything he thinks.  Of course, we enjoy hearing what he has to say (except when we've heard it a billion times, of course), but random strangers like the man fixing the sprinkler system or the mail man could really care less about all the seemingly fascinating details about his Geotrax trains, for example.

I have barely touched on my son's social skill deficits (which seems wrong to say since he is absolutely darling and adults think he's adorable), but this topic is too complex to discuss in one post.  Suffice it to say that we felt that our son would benefit from a social skills class.  Seeing my child (without his knowledge) interact with other children with high functioning autism has been eye opening in some ways and predictable in others.  We parents sitting and observing each know our children so well because we have to.  When any of us see a potential trigger for unpleasant behavior for our child, we immediately take notice to see how our child will react.  Sometimes, we're pleasantly surprised.  Obviously, there are times when we're not. 

During the last class, my son acted out more than he has thus far in the summer session.  I saw it coming.  The teacher had brought out a timer for them to complete a task.  I knew this was a double whammy for my son.  One, he hates to be timed at anything and my only guess is that this is because he is so terrified of not being able to complete the task in time.  Two, he hates the sound of any timer.  We are a timer-less household.  So, when the teacher announced what they were doing and held up the timer for them to see, I made my prediction and we all tensely watched my son stiffen.  As his turn approached, he became visibly more anxious and then he sprung.  He began to race around the room, yelling that he would NOT do the task with the alarm.  He went to the other side of the room and sat down while continuing to protest.  One sweet parent near me kept saying, "This makes me so sad!"  Her son doesn't have the sensory issues my son has so this was new to her but was unfortunately so routine to me that, although I know it's sad, it happens so much that it doesn't affect me the same way.  I can't afford to let it get to me.

Thankfully, the teachers figured out what was happening and made the necessary accommodations for him.  Unfortunately, the incident rattled him so much that he had a difficult time for the rest of the session.  At one point, I had to go in the class with him because he had a full blown, kicking and yelling tantrum.  He settled down soon enough though and acted like the class was great by the time we left.  Go figure.

Although we have only gone to this class for a few times, I wonder how much it will help him.  With many therapies for autism, the paybacks are often slow and subtle.  It may take many semesters of these classes for us to see real progress.  Meanwhile, we will shell out the cash and hope that he begins to learn the rules that are not innate to him.  As one therapist put it, we're building on his bank of experiences that he can pull on when he's in new social experiences.  With more and more controlled and guided social experiences in a safe environment, he may be able to learn how to interact with others in a more neurotypically acceptable way.  Until then, I expect to spend many hours behind the two-way window while hoping he'll surprise me with his new social skills.

Monday, June 28, 2010

Extra! Extra! Cargo has been found!

Sometimes I can't help but wonder what it would be like to be the mom to three neurotypical (NT) kids.  I think I know what it's like to be the parent of one NT child but there are moments when even he makes me wonder how NT he is (half joking here - he does model some of his brothers' behaviors).  Side note:  For those who have followed my blog, I have only referred to having one child on the autistic spectrum.  Diagnostically speaking, we only have one child with autism but we have serious concerns that another one of our children may have it as well.  While we await our appointment for his evaluation, we're just observing him and working with him as best we can.  There were a few moments today where my husband and I just laughed at how odd our life is.

My oldest son is incredibly energetic, creative and smart.  He constantly seeks knowledge and could spend the entire day on the computer without paying any attention to his bodily needs - seriously.  Of course, we don't let him stay on it all day and have found it to be a great tool to help improve his behavior.  Lately, we have been using computer time as a reward for certain desirable behaviors.  His current passion is creating cartoons online at  We have found his cartoons to be immensely fun and smart.  He has been writing them for a few weeks now but, today, as is so typical of him, he has added a new twist to this activity.  He has decided that he is a "newspaper boy" and it is his job to create his cartoons and distribute them to ALL of our neighbors.

So, here is my balancing act:  how do I reward his enthusiasm and his desire to share without printing out reams of paper and, most importantly, having to try to explain this newspaper to the neighbors?  For a NT child, parents could explain that he/she could just give it to a few neighbors.  They might whine or express a negative opinion but they'd move on.  Not my son.  He has made this decision and now it's my job to steer him gently in a way which is socially appropriate (since we don't know all our neighbors).  We gave two newspapers to two of our neighbors.  He wanted to print and deliver 2 more tonight but I convinced him we'd print one and then we'd deliver it in the morning (to give me a chance to figure out which neighbor we could give it to!)  Of course, true to form, he remembered my saying earlier in the day that newspaper boys have to deliver their newspapers very early in the morning (before his idea had fully blossomed otherwise I'd have kept my mouth shut) and so he went to bed claiming he was going to get up EARLY to deliver his paper.  All I can do is sigh and hope that he sleeps!

After feeling my oldest was taken care of and that he was off to bed, my husband and I then had to work with our other son.  One of his questionable behaviors is that he has certain rituals which cause him great anxiety if they're not completed at night (this could be explained by OCD too which he may have).  For him, he has to have the following things to go to bed:  his duck, 2 stories read to him, a "big" blanket (which means it has to stretch down to the foot of his bed), and - the most fun one - a Geotrax train.  Of course, it would be easy if it were simply grabbing a train.  Nope.  He HAS to have a train with parts (i.e., it has to have 3 cars), its remote, the cargo and the person that goes with it.  The critical part of this is that there are no substitutions.  If we can't find the person that goes with a particular train, the world has ended.  We can't throw in another person because THEY DON'T GO WITH THAT TRAIN!  Good Lord, have mercy on our souls.

Tonight, we found all of the train, the remote and the person but we couldn't find the cargo.  For those unfamiliar with Geotrax (consider yourself lucky) the cargo is usually a little box about 1" x 1" and they're each different colors.  We convinced him to get another train since we couldn't find the cargo.  We started pulling together all the pieces for another train and then couldn't find the last part.  BLAH!  Amazingly, I was able to convince him yet again to look for another train.  In a surprising show of flexibility, he actually accepted this train even though it didn't have cargo (it didn't come with any) because we convinced him the cargo was built into it (it's a firetruck train and we convinced him the hose was the cargo).  Now, if we did this for all the boys then a person could say it's our parenting but our other boys do not have such requirements.  They have requests but, even our oldest son, doesn't have anxiety-producing needs at night.  Thankfully, all 3 boys are sound asleep in their rooms and all is right in their worlds.

Being the parent of kids on the spectrum requires an unbelievable amount of patience and a talent for mediation.  Conflicts between their ideas of how things should be and what everybody else on the planet think happen minute by minute, hour by hour and so forth.  To survive, we have to constantly balance being a firm, compassionate parent who has to enforce rules with making compromises with our children in order to bridge that divide between the NT world and the ASD one.  We have fallen countless times but we have also risen way above our own expectations.  One thing is for sure, it's ever changing, it's complicated, and it is a challenge.

As I sometimes fantasize about being the parent of NT children, I find myself only wishing my life were easier and less stressful but I love my boys - NT, ASD, OCD, or whatever.  They are of me, from me and have been given to me.  I cherish them even when I'm stumped over why they think the way they do.  They are all beautiful in their own way - and you can quote me on that. 

Saturday, June 19, 2010


There is a reason why there are t-shirts which say something along the lines of "Autism:  Expect the Unexpected."  As much as I know this to be true, I still find myself stunned by my son's behavior even though I can usually explain it later using my "Aspie-glasses."  Of course, to pretend that autism is the only facet of life which can make life unpredictable is inaccurate since life can smack you upside your head at any given moment.  Perhaps, as is so often the case with autism, it's the degree of unpredictability, or maybe it's that the behavior exhibited by persons with autism can be so outside the norm that it is often shocking even if it is explainable later in terms of the condition itself. 

To be fair, life is unpredictable.  Things happen for better or for worse no matter who you are.  With autism, what is often a given for many people (certain established, acceptable behaviors) is not at all the norm for those with autism.  As NT parents of children with autism, we're often slapped into the awareness that our children simply do not do what the average child would.  It's that discrepancy (what we expect of a child of the same age as our child and what we actually get - usually quite outside the norm) which is truly shocking, disheartening and stressful.  To further confuse us, this same child will simultaneously do many of those things children of his/her age would do or, in the case of my son, appear older than his years. 

This past weekend we took the children camping up in northern Utah in the Uinta mountains.  Forested mountains with ice cold, mountain streams provided a perfect setting for a bonding, family camping trip.  With any trip, there is always the good and the less than good parts of a trip.  It is rare that a vacation is completely void of unpleasantness at some point, and a good trip is simply one where fewer bad things happen than good.  From that perspective, our trip was like any other.  Unfortunately, the parts that were bad on this trip would have been far worse emotionally for me if I weren't already somewhat of a veteran parent of an autistic child (and another child whose behaviors are becoming increasingly more suspicious). 

If a parent of an NT child had swapped with us for the weekend (without knowing our son was autistic), I am curious how they would characterize this trip.  How would they have reacted to being punched in the face so hard their glasses flew across the room after accidentally poking him while helping him get dressed?  Would they have been more shocked than me?  Probably, although I was quite stunned actually.  How would they have reacted to his ABSOLUTE and TOTAL insistence that he wanted to stay in "Coffee Car" (his name for a car, except it's pronounced cafe') because he was ready to go even though we had 3 hours before we were leaving?  Would they have been shocked when he screamed at the top of his lungs, cursing madly when he couldn't get everyone's attention (even though he had been monopolizing it for a good while already)?  I wasn't that shocked but he chose some particularly bad words which horrified his dear grandmother.

Of course, how would they have felt listening to him talk sweetly to his recently caught butterfly?  Would they have seen the beautiful sparkle in his eyes as he absorbed the beauty of the mountain stream?  Would his ferocious hugs and enthusiastic, heart felt "I love yous" have warmed them to his sweet, darling soul?  I'm not sure about how another would react but I am not unfamiliar with his amazingly sweet and beautiful side and his reactive, out of control side.  I know his true nature is good and loving and that his bad behavior is a result of his neurological condition.  Despite that, though, after particularly bad behavior (such as being hit by him), I found myself stunned.  When in that state of shock, I often grieve for myself, my family and my son.  I turn inward and try to heal the hurt while also trying to calm the natural, yet unproductive, reaction to lash back out at him.

Of course, his disability does not entitle him to abuse me or others.  It may explain it but does not excuse it.  After dusting myself off, mentally and physically, I then have to focus on helping him avoid such negative behaviors even if there may not be a chance for success.  I can't give up on him because, just as the imaginary NT parent I mentioned before, those who do not know and love will do just that. 

Although I had packed meticulously for this trip, I knew that autism would likely rear it's ugly head (while also showing its beautiful side as well) at some point during the camp out.  The unexpected was actually expected, but one can never fully prepare for the unknown.  In this case, it literally knocked me upside the head but, as always, I have to move on and prepare for tomorrow.

Tuesday, June 15, 2010

Spilling the beans

Tonight I found myself doing something that many a mother has done for their child, I was making a blanket.  Unlike so many mothers though, I wasn't knitting, crocheting or quilting a blanket for a young baby.  When my children were young, I didn't know how to sew and barely knew how to knit.  Thankfully, our boys' great grandmothers supplied our babies with a lifetime's worth of snugglies.  Unlike the light colored, soft blankets of infants, my son's blanket is dark blue with red stitching.  It is soft though and it was specially made for my child; however, this blanket is weighted. 

Children (and adults) on the spectrum sometimes benefit from certain sensory therapies.  For instance, children who have a difficult time remaining in their chair at school can be helped by placing a weighted cloth over their lap.  For many on the spectrum, the deep stimulation such as from such a blanket, is calming and soothing to them. 

It hadn't occurred to me until after I had spent several hours in my son's psychologist's office that my son might benefit from some sensory therapy (often a part of occupational therapy).  My best clue that my son might benefit from a weighted blanket was when I really observed him playing with his younger brothers.  What had been oddly baffling behavior, finally made sense to me.  He would ask his brothers to lay on top of him.  My oldest would be bright red in the face from having two 30-40 pound boys wiggling on top of him.  He'd laugh about it the whole time and they would too but I realized he was craving that sort of weight on him.  Clearly, this behavior won't be tolerated by his brothers once they're old enough to think he's being weird by asking. 

I decided that I would make him his own weighted blanket so that he could place it on him when he needs to calm down or when he just craves the weight.  I'm still a novice sewer but I managed to make a simple blanket for him out of soft, t-shirt material which I stuffed with beans and rice to provide the needed weight.  It was a bit tricky to sew, especially when I was sewing with the beans and rice in it.  The fabric was being pulled down on one side by the beans and was light on the other side so I'll admit that my seams aren't the most beautiful I've ever seen.  Despite how imperfect it was, though, I did feel a sense of pride as I was completing it - so much so that I got cocky and literally spilled a good cup worth of beans and rice on the carpet. 

After finishing my baby's blanket and halfheartedly cleaning up my mess (since the vacuum would wake the boys and we don't dare risk that!), I tried out the blanket on myself.  It is rather comfortable I'd have to say.  It is soothing to feel the weight on you, especially where you're tense since it helps to ease the stress in that area.  So, tomorrow, we'll see how my son likes it.  I already know my twins are already interested in their own and, of course, I can't explain that this is a special blanket just for their brother.  Perhaps when I make theirs, my seams won't be so crooked and I won't spill the beans.

Monday, June 14, 2010

Broccoli anyone?

My Mom has told me several times how, when my brother and I were just little guys, she would worry about her health.  More than once she thought she had some horrible, awful disease or illness and she would panic because she knew that my brother and I needed her.  Of course, she didn't tell me these things when I was kid.  She told me as an adult.  When she first told me I didn't have children so I couldn't really relate.  Since she was talking to me as an adult, it was clear she hadn't actually had a severe illness, only anxiety.

It's funny how life teaches lessons over a lifetime.  What once was an interesting (and surprising) story at the time, has become a part of my own reality.  I simply can't afford to not be well, physically or mentally.  Illness is not an option except it's not actually in my control or, at least, not completely.  I'll admit, I have had a few scares since I have had children.  I've even had a few surgeries but, fortunately, I have recovered and my life hasn't been in jeopardy.  Each time something like that occurs, though, it's a bit of a reality check because our life starts and ends in its own time whether we want it or not.

I'm fortunate to not have deep anxiety about my health but I am quite conscious of it, even  more so after receiving surprisingly disappointing lab work measuring my cholesterol.  After years of good results, I wasn't even awaiting the results of my lab work.  When the nurse called and told me they wanted me to try diet and exercise to see if that would lower it, it was like someone grabbed my face and made me focus.  Since I have been exercising religiously for the last 6 months or so, I knew that wasn't the problem.  It's either my diet (which is called the :left over, graze when you can diet") or my genes.  To be safe, I'm eating horribly healthy now.  I will officially say I'm on a diet which is a word I tend not to use because isn't everyone on a diet? 

I'm curious how I would have reacted to the lab work if I didn't have kids.  Would I be good for a few days then slack off, or would I stick it out the 3 months until the next time they drew my blood?  I guess there is no way to really know but I do know that, since all 3 of my boys depend on me (and some more than others), I have no choice.  I can't let them down by not taking care of myself properly.

My Mom is now in a stage of her life where she is not filled with the same anxiety about her life (at least I don't think she is).  Both her kids are grown and have their own families.  She has grandbabies who adore her not to mention her husband, my Dad, with whom she has been married for nearly 50 years.  Of course, I'm sure she has anxiety about us kiddos still and that she worries about how autism may affect her grandsons but I know she doesn't run to the doctor for every unidentified symptom as I am tempted to do these days.  As my boys grow older and more independent, I wonder how much they will need me.  Will I be able to relax about my health at some point, or will my presence be critical for their success in life?  Only time will tell but I will do my part now to improve my health in order that I will have a chance to be there for them for as long as they need me.

Sunday, June 13, 2010

Balancing act

I wish I could comfort him but I don't have much left to give.  For once, I'm not talking about any of my children but am referring to my husband.  I see the strain this weekend has had on him.  I recognize it as similar to my own and it pains me to see him feeling so annoyed, frustrated, exhausted, and miserable.  He walks with the heaviness of someone who is angry about his life, feeling as if autism has shat on our world.

It's important for me to say here that I'm not implying our children have ruined our lives.  Autism is just a part of our children (whether in its full form or in shadows).  We love each and every one of them.  Where we find difficulty is in dealing day to day with the challenges autism puts before us - the behaviors that belie explanation, those which exhaust all our faculties (mental, sensory, and so forth).  There are times when we simply don't get a mental break, where we feel sucked into this vacuum of stimming children, screaming arguments, the constant echo of phrases.  It can simply be maddening and there are times when there feels like there will never be a break.

Thankfully, I'm in a better place right now than my husband but it won't be long (probably tomorrow) when I'll find that same despair come bubbling up.  For tonight, though, I can help balance us out as parents as he does for me when I reach that same unfortunate place.  I wish I could find a magic spell which would lift this heaviness, anguish and frustration but the only thing which really seems to help is getting that precious and rare break.  If only I could build up my strength enough to give my husband a good, long break where he could reconnect with himself.  I'm hoping that as the boys get older this will become more of an option.  For now, though, I can only give him the space he needs to feel what he's feeling without annoyingly trying to make him feel better because, in truth, I can't sugar coat our life.  It's rough and sometimes it is pure hell.  Perhaps for Father's Day I will be able to give him what he needs - a break away from his family so that he can return to his flawed yet beautiful family who loves him for the wonderful father he is.

Friday, June 11, 2010

Check it out

Now that the boys are older (my oldest is 5.5 and the twins are 3.5) and since all 3 are home for the summer, I've been risking taking all the boys out with me by myself.  I've learned over the years that the key to success is preparation and I've heard other mom's of kids on the autistic spectrum repeat the mantra, "prepare, prepare, prepare."  Traveling with any kids requires some forethought, especially when they're young.  Traveling with one with diagnosed autism, one with possible autistic symptoms and one neurotypical child, requires an added level of consideration even if it's a trip to the local library.

Rule No. 1 is to know where you're going beforehand if at all possible.  When there is an option, I like to see where we're going without the children present so I can get a feel for the place (such as how loud it is), determine if there are too many escape routes for one adult to manage, and if there is anything that was a tantrum magnet (such as a toy store). 

Rule No. 2 is to have a plan.  If there are several different activities at one place then I like to let the boys know what order we'll do each activity.  For instance, at the library, I create a schedule which is simple and to the point:  1) We go to the DVD section and each boy can pick out 1-2 DVDs;  2) We go to the books and I'm more lenient about how many of them they can get;  3)  If they were good for #1 and #2 they can play in the puppet theater until it's time to go.

Rule No. 3 is have an exit plan which usually involves a "carrot" (something the boys will want to have such as a treat) to move them out of the place without a tantrum.

Sounds great, doesn't it?  Fool proof?  Well, not always.  Yesterday, I took the boys to the library.  Everything went smoothly.  The boys followed all the stages of our visit and cooperated like well behaved little boys.  Here comes the "but":  BUT I failed to prepare for the exit well enough. 

At our library, we check out our own books which frequently requires my oldest scanning the books since he's the only one who can reach the counter.  As I help my oldest scan books, one of the twins stands right by my side like a good little boy.  The other twin is being his energetic self and he has made a beeline for the sliding glass doors.  (This little guy has a thing for doors which is one reason I'm concerned he may have shades of autism.)  In front of the doors are the security scanners you have to walk through so that no one can steal the books.  As I'm watching my little one running around the scanners and opening and closing the sliding glass doors, I'm calling out to him to return (as loudly as I feel comfortable doing in a library) while subsequently shoving books to my oldest trying to finish scanning our huge stack of books.  If only we can scan them fast enough to get the little turkey near the doors.

My son goes out the door and stands just on the other side.  I can't wait any longer.  I think to myself how other parents would ask their oldest child to help them get their younger child.  I knew this was risky because my oldest lacks subtly when enforcing rules.  I also knew that these two kids are like fire and oil - an explosion ready to happen at any moment.  I was desperate though and felt I couldn't leave the scanner since there were other patrons waiting for my scanner.  Pretending that we're a normal family, I asked my oldest to go stop his younger brother from messing with the doors which were opening and closing with each little foot step.

Scan, scan, scan, as I watch the spectacle unfold.  My oldest runs and tackles my youngest who then fights back like the tough, little dude he is.  Scanning faster now, issuing futile orders from a distance, my boys are now a big tangle of flailing boys and a crowd of women have entered the library and are trying to get by them so they can return their books.  Such nice, sweet women with their jaws dropped at the violence occurring in their path.  I'm not done yet but I can't stand there any longer as I hear one woman say in a sweet voice, "Don't bite, hon!"  I grab the two by their shirts and drag them back to the counter while uttering quietly to no one in particular that "he's autistic.  I'll handle this."  I didn't specify which because, at this point, I might be talking about both of them.  I get my oldest to scan again while I try to restrain the youngest who feels totally betrayed by his older brother.  Meanwhile, my other twin, stands by my side sucking his thumb.

So, Rule No. 4 is to continue to improve your preparation and Rule No. 5 is to be prepared to live life in the view of other's misunderstanding and disbelief.  Finally, Rule No. 6 is to laugh because, well, what choice do you really have?

Tuesday, June 8, 2010

By your side

When I sit down to write a post, it helps for me to have a focus, something specific to write about but lately I have been unable to do that.  My best excuse is that too much as been going on - both good and bad.  I have felt a bit scattered and pulled in many different directions.  From the end of school (one predictably and one unexpectedly), some major success in potty training, to concerns about one of my other sons and concerns about how hormones aren't helping one bit when things are tough.  It's been the cliche roller coaster ride as is typical of our life but, lately, I have been less grounded and able to maintain my own perspective and balance. 

Meanwhile, I have been reading a variety of books and articles, pondering over "grief bursts", agonizing over well-portrayed Asperger's in books such as Jodi Picoult's House Rules, and feeling defensive about my concerns regarding one of our sons who we thought was totally neurotypical.  Meanwhile, life has been going on.  Summer has arrived.  My daily phone calls with my family keep me updated on my aging family back in Texas.  I often find myself missing my many friends around the globe.  I am fortunate to have connected with a great group of gals called the Big MAKS (mothers of autistic kids) who rock and without whom I would feel significantly more isolated.  Despite the good and partly due to the bad, I have found myself in a quandary as I search for strength when I sometimes feel I have none.  I search for the meaning of this crazy life I live without the benefit of a faith to ground me.  I have turned inward as I strive to find that balance I need, the perspective I need to keep going even when the truth of my son's disorder is shoved in my face. 

There are times I simply don't know how to keep going but I do.  I have learned to wait it out until I have a chance to get away.  I wait for a healthy perspective to overpower the negative one.  If only it could happen quicker sometimes.

Tonight, after I returned from working out at the gym (my therapy!), I was greeted by my son.  As I struggled to unload my bag while he approached me eagerly, he grabbed my hand and said, "I'll always be by your side."  Being the true, darling, little Aspie that he is, he really meant that and we struggled to get down the stairs with him next to me as he held my hand.  I finally had to tell him that he could always be by my side without actually holding my hand or walking next to me.  I couldn't help but be amused and warmed by his literalness and his sweetness.  The truth is, he will always be at my side in one way or another and, even when things are difficult, I know that I have been blessed.

Thursday, May 20, 2010


My son has always loved music, particularly classical.  By the age of three, he was already able to recognize pieces by Mozart, Beethoven and Vivaldi.  He can't sit still when listening to music as his whole body seems to participate with it.  Thanks to his lack of concern about how he might appear, he dances as one would in a house alone without any chance of being seen.  That's a sort of freedom that I envy.

Today was a very volatile and powerful day because it was filled with intense extremes of gratifying pleasure and gut wrenching sorrow and anger.  The beginning of the day was routine (no surprise there since routines are how we survive).  All the children went to school at various times of the day.  By the afternoon, everyone was getting tired and rundown, including me.  I found myself running around like a madwoman at around 3:00 when I realized that I had a ton of work to do because we were going to a rare treat in the evening:  a free concert by the Utah Symphony and the Utah Opera for children with autism and their families. 

From my trying to wash clothes so the boys would have decent pants to wear, buying a tie and shirt for one of my 3 year olds who has been begging for one, cleaning up bathroom accidents, trying to convince one whiny child that he would actually enjoy the symphony, to breaking up numerous fights over sharing a new toy, my calm began to crumble.  Twitching with anger and frustration, I stormed out of the house and into the farthest place in the backyard that I could go after my oldest, the one who is autistic, told me he'd rather stay home and play on his computer.  I was worked into quite a lather and my poor husband tried to talk my crazy self down from my tirade. 

I am not proud of the times that I just lose it, the times when I have just had it.  Here I am taking care of these children day in and day out with only occasional hours of time away and they don't seem to care.  Of course, this isn't fair and isn't accurate but there are times it definitely feels that way.  These emotions are not new to any parent because that's part of the job.  There are times, though, that I can't help but want to quit, throw in the towel, say, "Adios, you little rascals!  It's just a feeling though and not a goal obviously because I love the little buggers no matter how mad I get at them.

So the day reached a crescendo as we were preparing for the symphony.  No irony there.  After my husband convinced me to change yet again into my black dress and heels instead of my mom clothes, we gathered all the kids up, even the whining one who did not want to go, and headed downtown.  I'm glad we did.

As I have said once and I'll say again and again and again, raising a child with special needs is incredibly difficult.  One awesome advantage though is that when things are good, they are bliss.  Tonight, there was a moment when all three of my boys and my husband were sitting in a concert hall with the chandeliers sparkling above us and the orchestra onstage in their tuxedos and dresses and I felt my heart filling with gratefulness.  Our children and our family were accepted in this space without risk of judgment or embarrassment.  We were simply allowed to be us among others like us.  That feeling of ease is so rare for us and, even if it lasts for 1 or 2 minutes, it nourishes all of us more than I could say.

After my 3 year olds decided they needed to go out to the lobby with their daddy, my 5 year old sat with me in the dim lights listening to beautiful music.  He wiggled with excitement as he was filled with the beauty of the music.  At the end beau of each piece, he'd clap enthusiastically and exclaim, "Great job, guys!" or "That was the most beautiful music I have ever heard."  When the music wasn't too loud for his ears (which happened enough that we ended up leaving early because of that), he was so enthusiastic and happy that I found myself crying quietly as I held him tightly.

Although the day had some awful moments, more awful than good if measured in minutes, those few minutes where I held my son and enjoyed the music with him were priceless to me.  It was worth it to lose my bloody mind just so I could see him bask in the beauty of it all as I basked in his.

Thursday, May 13, 2010

Whale Rising

Forever ago back in college, I once had a psychology professor give me advice about my struggle with anxiety:  Make a simple life for yourself with as little stress as possible.  I find myself laughing at that advice regularly because life just doesn't make itself simple for you.  I did find a great husband who supports me.  I did complete my education and successfully worked for years.  Other than that, though, his advice seems to have fallen off a cliff.  Several rounds of in vitro fertilization (IVF), a miscarriage, complications from IVF, my first born, my twins and so forth.  I don't regret any of this but one could never characterize these life-altering events as being simple or stress free. 

This morning I woke up lower than a whale's butt (one of my Mom's awesome, west Texas expressions).  Everything was bothering me.  One child was feeling poorly and needed my undivided attention.  The other two kids were being relatively fine but they each had their needs and wants (which in years past influenced my creating the song "the needy-wants") that require attention and energy.  Hair in a wad on top of my head, eyes seeking a fresh pot of coffee, I found myself berating my life, how much I suck at it, and worrying about how to get through another day.  From finding a random booger by the tub (uh, gross), to smelling pee in my bathroom from well intentioned, early potty trainers missing their mark, to remembering how yesterday one of my son's wasn't allowed to play outside with the other kids because I let him wear shorts and forgot to give him a jacket, I kept listing off all the aggravating things in my life and kept finding proof of my failure as a competent parent.  Lest this seems like a puny list, I am not listing it all.  There is plenty more such as the undies that need cleaning BEFORE they go in the washing machine, the fact that I couldn't find snacks for the twins for school, and the fact that I am just plain worn out with my crazy world.

So after getting things moderately under control, I took a bath.  Despite my son with autism using a timer (my brush turning in circles to his own time) to try to speed me along just outside the door, I dove inward and told myself to shut up.  Using some of a good friend of mine's words, I told myself to "cut that shit out" and wo-"man up, mo fo."  Completely useless advice meant to be taken comically, I couldn't help from giggling.  It takes some courage to tell a woman like me such things without fear of being annihilated. 

Thanks to my husband, friends and family, I have found one of the only ways to shift my focus from the negativity to a more reasonable frame of mind is to use humor.  I am fortunate to have friends who knows just how to say the worst possible things that make me laugh.  Thankfully, when my husband isn't wallowing in the pit of insanity with me, he too can make me laugh and remind me that I'm more than all this chaos.  I am still the young girl in the professor's office asking for help with anxiety.  I'm just older now and can teach the professor a few things about managing stress.

If I hadn't gone to the gym the last few nights, I probably could relate too closely with the analogy of being lower than a whale's butt.  After having a few laughs and calling myself on my own bullshit, I can safely say that this, uh, whale is heading for the top.

Monday, May 10, 2010

Too much?

Having a child with special needs really forces you to confront your weaknesses and to grasp for your strengths.  I have found myself looking honestly at my own behavior, my idiosyncrasies, my habits.  Some are benign and don't impact anyone adversely.  Others are helpful and may actually help everyone in our family.  Then there are those that simply suck, those which don't help my son or anyone else for that matter.  I hate those.

One seemingly benign trait of mine is that I'm a communicator.  I like to make myself and my actions clear.  The problem is that I also tend to be an over-communicator.  Too much information.  TMI.  That's me.  You don't want to hear it, well, I'm telling you anyway.

I don't know why I'm like that.  Ultimately, I believe that relationships do best when communication channels are open.  My problem is that I communicate with too many people, not just those with whom I am close.  I think some if my need to gab may stem from my inherent enjoyment of people, the feeling of being one among many.  As my Mom reminds me from time to time, I told her as a young girl that, "I LOVE people." 

I find myself frustrated when I don't know how to balance sharing information with protecting privacy.  I'm not very concerned about protecting my own privacy mainly because I am who I am.  Nothing will change that.  What bothers me is when I feel that I'm not protecting my son's privacy enough in relation to his autism.  Being an over-communicator, unfortunately or fortunately depending on your view, is a part of who I am.  Having a mother who is an over-communicator may not, however, help my son.  Almost everyday, I make a point to say as little as is necessary but, like an alcoholic, sometimes after that first drink, I find myself saying more and more as the conversation progresses.

Today, my son was having an argument with another child in my presence.  My son was the first one to get to school.  He likes to be the first one in line or the "line leader."  Another child wanted to be the line leader for a change and the argument began.  As is typical of autistic kids, he is rigid when it comes to change.  He felt he must be the line leader period.  The other child's mother and I intervened.  Thankfully, the other mother was very helpful and we managed to defuse the situation.  Instead of playing it off, though, like my son was just being a pill, I explained the situation to her (i.e, my son is autistic and his behavior was a result of that).  From there, we briefly discussed autism and my son.

Some would say that my disclosing his autism was justified and, in some ways, I'd agree.  I don't want my son to be perceived as a jerk when his behavior is not his fault.  On the other hand, was my disclosing his autism more for him or for me or a combination of the two?  Did I feel I needed to explain his behavior so she wouldn't think I was a poor parent?  Yes, somewhat.  I struggle with finding the balance between when to disclose and when not, how much or how little to disclose and which situations deserve explanation.  If I were a more secretive person, I probably wouldn't struggle with this since I would simply operate on a need to know basis.  Although I know I simply could never be tight lipped about his autism due to my inherent nature, I need to become more discreet in situations where disclosure is simply not necessary or helpful.

My tendency to over-communicate is just one example of a trait of mine which has the potential to impact my son.  Although I'm proud of those traits which help him, I can't help but agonize over those which may not.  I  know I can't be perfect but I also can't help but try to be.
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