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.
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