"Labyrinth"

Occupational hazards can be associated with probably every job there is.  My father is a retired plumber.  When he was an apprentice they had plumbing and heating school.  Many of the people my father went to school with, who chose heating as their career, succumbed to asbestosis due to the asbestos in early insulation.  At that time people didn’t realise the effects of long term exposure to asbestos.  My father had hip replacement surgery that I am sure his years as a journeyman plumber contributed to.  My old manager had surgery for carpal tunnel syndrome on both hands.  When I was in high school, I worked at Kmart, I remember a security guard getting a major back injury while dealing with a shoplifter that tried to attack his boss.  Certainly I could go on and on with all the occupational hazards that jobs can create.  Some of these hazards can happen suddenly, like when a line worker gets electrocuted.  Some take much longer, like asbestos exposure in insulation or break dust for older mechanics, before asbestos was made illegal for automotive use.  Medical workers deal with all kinds of occupational hazards in their daily lives of trying to help people.  Then there are the emotional occupational hazards of certain jobs, high suicide rates, or the stress of a Wall Street trader.  Every career probably has some form of occupational hazard.  Some are obvious, like a trapeze artist, some are less obvious, like nodes for singers.  

Being the sibling of an autistic person can have it’s own set of “occupational hazards”.  Just like the occupational hazards in the work place, they come in lots of forms, and transpire over different durations of time.  Obviously they are not actually occupational hazards, as they are not associated with an occupation, but the same principle applies, except that they didn’t choose their relatives,  like most people choose their occupation.  These family hazards can be potentially physically damaging.   Some example would be the time Holden pulled a knife on his brother.  There was also the fun time when Holden set the toaster over on fire.  The other day we were driving in the truck, and Holden asked to sit up front for a change.  Zane was nice enough to oblige his little brother, and as our truck is older, and doesn’t have air bags, I thought nothing of it, until Holden recognized where we were and grabbed the steering wheel, trying to direct us to Vons.  There are also emotional hazards, like Zane feeling neglected and less important than Holden, because I have to stop helping him with his homework ,so I can put the fire out in the toaster over.  I joke about it, but I am always putting out some figurative fire, and often having to interrupt something I am doing with Zane to do so.  Often where we go is dictated by how difficult it would be to take Holden with us.  For instance Zane loves Chaucer’s Books store, as do I, but with it’s narrow paths, and books staked everywhere, I literally have to put Holden on my shoulders and hold his hands, otherwise he is grabbing everything.  For obvious reasons I prefer not to go there with Holden.

The one family hazard that I never expected, was Zane’s over sensitivity to labels, and the need to label himself.  The other day he told me that he thinks he is ADHD.  I asked him why, and he explained why to me.  I assured him that he was not ADHD, and that the things he was regarding, are things that everybody has to deal with.  I further explained the effects of ADHD, and soon enough he agreed that he was not.  He also once thought he might be OCD.  Once again, at the time, I explained that everyone has OCD tendencies, and explained the difference between tendencies and clinical OCD.  The fact is he would probably have no idea what any of these terms even are, if he didn’t have an autistic little brother.  As parents and advocates for our children with autism spectrum disorders, we are constantly talking about these conditions as they apply to our children, we have to.  It is part of the process of helping them deal with their behaviours, by isolating the reason for each behaviour and replacing it with an appropriate behaviour.  It means dissecting all of Holden’s behaviours so as to know why he is doing them.  Is he stemming? In sensory over load? Is he obsessing? Is he seeking attention?  We all talk about it, Holden’s teachers, his therapists, his mother and me.  Zane hears us discussing all this minutia about Holden, and try to label this minutia everyday.  It’s no wonder he starts to see them in himself.  When dealing with Holden’s issues at the micro level we have to deal with it at, it is easy to take it out of context.  When I explain to Zane why Holden is having a melt down, I do it so he understands, but by doing so in a situational instance, it is easy for Zane to take it out of context.  It is a tricky balance, wanting Zane to understand his brother and empathize, but at the same time not make him into a neurological hypochondriac.  

As is often the case, information and education is always the best solution.  Zane has to live with these terms around him all the time, so it is important to give him a general understanding of the terms, so that situational usages don’t get misconstrued.  When he thought he might be OCD, his mother and I explained how debilitating  clinical OCD is, and that someone with clinical OCD often requires therapy just to interact in society.  His mother has worked with OCD people before, and explained the daily battles those clients face.  Likewise, I explained the condition, and how it presents for ADHD and ADD.  With this general understanding, Zane was able to easily remove these labels from himself, and not worry about them anymore.  It may not be the same as being a crab fisherman on the Bering Sea, but the Hazards that Zane is exposed too can be very devastating to his mental and physical health.  They are hazards that all families face, but with special circumstances.  They are all part of the ever changing saga that is Autism and my two boys.

"Put One Foot in Front of the Other"

As I have stated on so many occasions, consistency is so important to Holden.  However, Holden has shown some remarkable flexibility at times, to changes that I thought would be difficult for him.  For instance his mother moving back into town has proven to be something he is adapting quite well to.  To give credit where credit is due, his mother has also made this change in Holden’s life easier to deal with by working around Holden’s wants and needs, and appreciating Holden’s need for consistency, and being a part of Holden’s team of support.  There were some melt downs and misunderstandings in the beginning, but we have all learned from them, and things are going well.  I wish I could say the same for all aspects of Holden’s life.  A recent event, that I really would have thought was minor, really set Holden off, and created quite a bit of anxiety for him.

Holden takes the bus to and from school everyday.  Currently I do not require this service, but I have continued to use it for two reasons.  The main one is that by Holden taking the bus home everyday, I don’t have to make Zane wait to be picked up from school, Holden and Zane attend different elementary schools.  Because Holden can’t be left alone, and Zane can, I was making Zane wait for me to get Holden first, before picking him up.  I only did this while we were getting the bus set up for Holden, and I didn’t like it at all.  Zane was a good sport about it, but he certainly likes it better now.  The other reason I chose to have Holden take the bus, is that he really enjoys riding on the bus.  There have certainly been situations, and drivers, that made Holden not enjoy the bus.  In Escondido, there was one driver that “wrote Holden up” five times over three years.  No other bus driver ever wrote Holden up, so to me, it is pretty clear that this was a driver issue, not a Holden issue.  As the bus company is a separate entity from the school, even some of the teachers have had problems with the drivers.

As I stated in my last blog, there have been a lot of inconsistency in the morning bus drivers.  Earlier this week there was yet another new driver to Holden’s route.  We live on a horse shoe shaped street.  The bus drivers route sheet clearly states to enter our street from the second entrance.  Many new drivers have missed this note, and come from the wrong entrance, leaving them across the street from our house, instead of on the same side.  In the past the drivers have seen the error in their way, and driven to the corner, and turned around.  The new driver earlier this week made that same mistake, but instead of driving to the corner and turning around, performed a U-turn in the middle of our street.  I thought is was an odd move, and didn’t really think much of it, until Holden completely freaked out.  He turned away from the bus, and when I tried to pull him towards me, dropped to the ground and started crying.  I tried to pick him up and assure him it was okay, but instead he ran to the house, away from the bus.  It was pretty obvious to push this was going to get ugly, so I sent the but on it’s way, and found Holden in my room, on my bed crying.  I told him it was fine, and I would take him to school.  He calmed down after a little bit, and we went to school.  I explained to the surprised teacher what happened, and left him at school.  He came home on the bus, and seemed fine.

The next day, when he woke up for school, he immediately complained of a stomach ache.  He did so with his usual smiling face, so I didn’t think it was too bad.  Throughout the morning he mentioned it a few times, and burped a few times.  I thought maybe he just had some gas.  As per usual, we took Zane to school, and dropped him off, but for the first time ever Holden asked me to take him to school, instead of going back home to wait for the bus.  I explained to him that he was going to take the bus to school and drove home.  He complained a few more times about his stomach, but still seemed to be fine, and happy.  As we waited for the bus, his anxiety grew.  He kept pointing in the direction the bus is supposed to come, and would say “bus”.  Everything fell into place for me.  Holden was anxious the bus was going to come the wrong way again.  He was quite agitated, and kept pointing up the street and saying “bus”.  I wanted to assure him the bus would indeed come that way, but in all honesty I could not.  I am willing to bet his stomach issue that morning was either a stress related stomach ache, or even more likely, butterflies.  Thankfully the bus came from the correct end of the street, and his anxiety immediately vanished as a huge smile came across his face, and he started jumping up and down in excitement.  The next morning, today, it was the same thing, to a lesser degree.  No stomach ache this morning, and a lot less anxiety, but still pointing up the street and saying bus.  I told him yes, that is the direction the bus SHOULD come from, hoping, fingers crossed, that it did for his sake.  Once again it was one of the semi regular drivers, and Holden once again was very happy and relieved when the bus came from the correct side of the street.  

It can be such a delicate balance all the time.  Never knowing what will make Holden anxious.  I hope to never repeat the anxiety he had when we moved, it literally broke my heart to watch.  All I can do is continue to try and prepare him for any changes I can for see, and hope he handles them well.  I am so grateful when he does handle change well, and shows flexibility, and often taken by surprise when something seemingly minor sets him off.  I am constantly trying to learn  when to push a little, and when to give.  I knew immediately earlier this week it was time to give.  I am so thankful for being able to take him to school, and not have to force him on the bus, because I have to run off to work myself.  I have had to do that in the past, and it is heart breaking.

"Communication Breakdown"

I went out to breakfast with a really old friend of mine the other day.  He has worked the majority of his working career with developmentally disabled adults, a lot of his clients were and are autistic.  I mentioned something about trying to explain the importance of consistency and structure, and he said that’s  “Autism 101”.  It got me thinking, if there were an “Autism for Dummies” book, chapter one would be “Consistency and Structure,” and chapter two would be “Communication.” Yet still these issues comes up time and time again.  With it being so easy to damage progress, these three concepts become so very important.

Holden takes the bus to school everyday.  For some reason the afternoon bus driver is consistently the same person, in the same bus, but the morning person has changed so many times, as has the bus.  Holden handles this change pretty well, to him a bus is a bus. However, the afternoon bus driver is very strict with him, only letting him unbuckle his seat belt when he tells Holden it is okay to do so, and only seats Holden in the “big boy” seats on the bus.  The morning drivers were putting Holden in what ever seat he chose, and Holden preferred the child seat type seats.  The afternoon bus driver was having a hard time getting him to sit in the “big boy” seats because he had been allowed to sit in the other seats in the morning.  Not only was this frustrating for the bus driver, it was very confusing for Holden.  Also the main afternoon bus driver was out a few days, and the sub bus driver was not only letting Holden unbuckle himself as the bus pulled up to the house, but then reinforcing him to do so by telling him “good job” for knowing where he lived.  It was an innocent mistake, but still caused more confusion for Holden, especially when the regular bus driver came back, and was making him re-buckle himself, and wait for the okay of the driver before removing his belt.  These little inconsistencies and breaks in structure are very hard for Holden to understand, and take a while for Holden to adapt too.  The afternoon bus driver has attempted to communicate with the morning driver to get consistency, but with the driver always changing, it has been difficult.  I have taken to putting Holden in the “big boy” seats myself in the morning, rather then let the bus driver seat him, despite some of the drivers not appreciating the help.

Once a friend was visiting us, and Holden had picked up this behaviour of clearing his throat.  It was actually the sound one makes when about to “hock a loogie”.  Holden has huge tonsils, and I believe the behaviour started due to post food phlegm, but turned into a behaviour.  It would increase with agitation or anxiety, irrelevant of food consumption after a while.  Prior to this Holden had had the far worse behavior of spitting.  He never made the hocking sound then, he would just spit.  For obvious reasons, his teachers and I worked very hard to eliminate this behavior.  While our friend was visiting she was convinced that Holden just needed to spit out the phlegm he was trying to hock up, and encouraged him to “spit it out”.  Once again this was a totally innocent thing our friend did, but all I could think was, “Oh know, he going to start spitting again.”  Once again, these inconsistencies, caused by people truly trying to do good, can cause Holden to digress and can be confusing for Holden.

One summer Holden spent a two weeks with his mother out of state.  His grandmother was helping to watch him while his mother worked.  His grandmother tried to take on a behavior, and quite innocently made it worse by drawing attention to the behavior.  It is so important for everyone who is dealing with Holden to understand how to deal with these behaviors, and that if they are going to try and teach Holden, to make sure they are not accidentally undermining his progress.  Behaviours don’t just disappear, they have to be replaced with other behaviours.  The level of communication between all of Holden’s teachers needs to be very thorough.  We all look for behaviours as they appear, and compare notes on them.  We look for possible obsessive behaviors before they become full on obsessions, and we all try to use the same methods to help Holden work through the behaviors and find better behaviours to take their place.  

Recently a friend was in town visiting, and she was very sensitive to the fact that it is very important that Holden use language to communicate, and express his wants and needs.  She was great about making Holden use his words, and prompting him to speak when necessary.  However she also wanted to improve upon his pronunciation.  She tried to get him to repeat something he said clearer.  Certainly it is important that Holden speak clearly, but right now we are a lot more concerned that he speak at all, so we are always trying to promote speech, and when possible reward it.  It is a major goal in his behaviour therapy to be able to express his needs, rather then act out in the form of a bad behavior, or even worse a melt down.  So if we can understand him, even if it is not perfectly clear, that is the goal right now.  At this point in Holden’s development, especially in terms of speech, we are only going to address pronunciation issues when his communication improves, not at the cost of it.  So sacrificing pronunciation at this point for the sake of encouraging communication is a small price we are all willing to pay, to keep him talking.  

Autism 101, chapter one, consistency and structure, and chapter two, communication, these things are so important to Holden.  The more he knows what is going to happen, the better he can handle it.  The more all of us who deal with him everyday can be “on the same page” the better for him and ourselves.  Communication is not only vital for Holden to learn, it is something so important for all of us working with him to use to keep working on the same goals, and not cause contradictions.  We all want what is best for Holden, and we all have to use Autism 101 in the same way, with the same goals in mind.  Holden has shown us all, if we can give him the tools to learn, he will use those tools, so long as we are consistent and structured in using them.

"Hello, Goodbye"

Priscilla Gilman wrote an amazing and creative reflection on the differences and similarities between her two boys http://www.huffingtonpost.com/priscilla-gilman/ernie-and-berts-mother_b_914541.html , where she compares her two boys to Bert and Ernie from Sesame Street.  For the most part, her children are polar opposites of each other.  In fact, as you read the article, it turns out that they have two different syndromes that truly are polar opposites of each other.  Certainly as parents, or siblings, of two or more children, we have all seen these potential difference for ourselves.  As I have stated on this blog, my brothers are very different from each other and myself, from style, to taste, to ideology.  Certainly there are similarities between my brothers and I as well, but I think they are fewer then the differences, especially in terms of myself.  I have always wondered why there is not more research on mono-zygotic twins, who are genetically identical, to find out what things are truly in our genes, and which things are learned behaviours.  I have known quite a few twins and some of them are very different from each other, even in appearance, despite sharing all the same genetic information.

Holden and Zane are very different from each other in many ways.  From the moment Holden wakes up in the morning, to right before he goes to sleep, Holden is always smiling.  I would say that Holden has more smiles, then any other facial expression.  That is to say, that Holden has way more different smiling faces, then he does say angry faces.  Holden smiles so much, and for so many different reasons, that it would take someone who doesn’t know him, a long time to recognize all the different smiles.  Quite often the smile I find on him first thing in the morning is a very mischievous smile.  Almost like he is thinking, “alright, a new day, what havoc can I cause the world today!” where as the smile he wears before he goes to sleep at night is more like, “This was a great day, and I am so at peace with everything.”  I could probably dedicate a whole blog just to Holden’s smiles, and who knows, someday, I just might.

Zane on the other hand, can be very moody.  He may wake up happy, but almost anything can set him off.  I was waking him up for school every morning, and he would immediately ask me why I was waking him up so early, in a very annoyed voice.  I would tell him it was a school day, and he had to get up, take his shower and get ready for school.  To which he would start telling me that who ever had come up with school, “invented it”,  and the amount of days, and when it takes place, should be tracked down and told a thing or two.  I would try to explain that, first of all, there is not one person responsible for the way school is, and that school is one of those things that pretty much everyone has to do.  He wouldn’t like this answer, and move on to his next argument about it.  His mother bought him a phone for Christmas, and thankfully he has taken to setting his own alarm, and much more happily gets up and takes his shower now.  The potential for his mood to change in either direction though is always there.  It sometimes seems very ironic to me that the autistic child with ADHD is much more emotionally consistent than the nuero-typical one.  Zane gets defensive quickly, gets very mad if he thinks you are laughing at him, and can swing moods so fast, that you are left wondering what just happened.  Holden just cruises a long in life, happy and content, granted his pace is fast and furious, but less affected by people in the way Zane is.

Unlike most big brothers, Zane quite often does not lead the play activity.  Holden’s tendency to do things his own way, has made him a little brother who is very independent, and doesn’t need his big brother to entertain himself.  In this way, Zane is more needy of people around him to be a part of his entertainment, where Holden is very happy by himself, or just having me in the same room as himself.  Quite often it is Zane who tries to engage Holden in play, requiring a playmate.  Also, Holden may grab a toy of Zane’s that Zane hasn’t been interested in for years, but as soon as Holden shows interest in it, Zane suddenly has a renewed interest in it.  He will claim he never lost interest in the toy, but his actions of the past year have been complete apathy for that toy.  I was the little brother that followed his brothers around everywhere, and wanted to be like them.  I would stand up for them, sometimes to the point of creating problems.  So to me it is quite interesting to see Holden often be the leader in their play.  If Holden doesn’t want to play, there is no engaging him.  As is always the case with brothers, when Holden does engage Zane, Zane usually doesn’t want to play with him.  Holden often wants to give his big brother a kiss, and Zane doesn’t like that either.  They are both very affectionate children though.  

Also, Holden has always been more physically coordinated and better at climbing fences, trees, and the like.  Holden walked at a younger age then Zane did, and is much more physically stronger than his big brother. This is odd anyway, but when you consider autistic kids usually have bad balance and coordination, this is really odd. Holden loves to go on hikes, and when set to is own devises, will run up and down trails.  Zane often gets tired quick, and if it is sunny, he will complain if there is no shade for him.  Once again, he thinks it is bad “design” if the trail doesn’t have any shade. Ironically Zane has always been much more healthy than Holden.  Zane went a whole school year without missing a single day of school, where Holden seems to always be fighting a cold.  Colds and flu viruses also seem to last much longer in Holden than in Zane.

The one thing that they have always both loved is music.  They both love to listen to it, play it, watch live concert videos, and sing.  We always have music going, either in the car, or the house.  It is always fun to hear Holden sing, he may get a lot of the words wrong, but that is part of the charm of it all!  It seems that one of us is always singing something, and pretty soon the other two are joining in with the same song.  Right now Holden is stuck on “Shot through the Heart” by Bon Jovi, having heard it on Lego Rock Band.

"If It Makes You Happy"

There are times when parenting a child with ASD (Autism Spectrum Disorder) that we have to put our emotions aside, and make decisions on what is best for our children, rather then what makes them happy.  That is not always an easy thing to do as a parent, after all isn’t the parent credo, “I just want my children to be happy.”  It feels as though we have to force ourselves to see what is best for our kids, and turn off that instinct that wants to shield and protect them against unpleasantness.  It feels so wrong to not want to let our children be happy, so why do we have to do this?  The best example of why being happy can be bad, is a rather extreme example, but it works.  A heroin addict doesn’t initially take heroin because they want to end up strung out, enslaved to a drug. They take it as an emotional shut off valve.  They take it to feel good, by not feeling bad emotionally.  Unfortunately, that only works for a short time, then they have to take the drug, to not feel heroin sick.  The drug stops shutting off their emotions, and simply takes over the person, making them feel sick if they don’t take it.  With ASD kids, certain behaviours are like this, they start out doing it, because they enjoy it, but when they start obsessing on it, they begin to do it because they have to.  Some of these things can seem very trivial, and harmless, but over time become quite an issue.  They are painful behaviours for the kids to have to eliminate.  

A client I used to work with years ago was obsessed with Disney movies.  He would start out just wanting to watch a movie, but pretty soon he would get to the point where he had to rewind and re-watch a certain part of the movie over and over again.  I am not talking about a scene, but rather a small ten second piece of the movie repeated 20 or 30 times, really until we stopped him.  Then like the Heroin addict he would totally “Jones” for that movie for a few weeks.  There have been things that used to bring Holden great joy, that I just had to remove and never bring back, because they became such issues.  It’s really sad to have to take something away from him, that for quite some time would comfort him, and make him feel safe.  He would take it to school with him, and have that sense of security, that sense of home, while away from home.  Then over time it becomes an obsession, making him need it, and at the same time not want it anymore.  He struggles with it, throws it away, then digs it out of the trash.  Gives it to me, to take into another room, then comes screaming into the room wanting it back.  It is very clear that it is a painful obsession, one that he wants to “kick” but at the same time can’t.  The same thing applies to behaviours, where if you let him indulge in the behaviour because he enjoys it, and is seemingly harmless, it can go from being a benign behaviour, to an obsessive behaviour that becomes bad by it’s repetition and necessity, rather then it’s actual action.

One of the things that often comes up when I meet with Holden’s teachers are these obsessions.  We compare notes, and try to decide if a behaviour is bad enough to address, and if it is becoming an obsessive behaviour.  Sometimes we are so close to our children, that we miss that the behaviour, or toy or whatever, has become an obsession.  Holden picks at all his scabs obsessively, making things take super long to heal.  It gets to the point where you have to put band aids on him, and keep them on him, in order for things to heal.  There is nothing more frustrating then keeping a band aid on him for two days, and have a cut get close to healing, only to find him picking at it, and make it bleed again.  Clearly this is a very easy obsession to spot, and  the repercussions of it are very obvious, greater chance of infection, great chance for scarring, and prolonged healing time.  Other behaviours or activities are harder to spot sometimes, and can reach the point of being problematic before they are identified and resolved.  

Another problem is trying to decide how best to address an obsessive behaviour.  Bring attention to a behaviour can often make it worse.  Now it becomes an obsessive behaviour that he knows he can elicit a reaction from.  This, in essences, encourages the behavior.  However, simply ignoring the behaviour isn’t gong to make it go away, because it has reached the point of obsession.  When the object of obsession is an object, at least it can be removed.  This will lead to melt downs and tantrums, but over time the obsession is broken.  As it can be imagined, it is greatly beneficial to keep on the look out for potential obsessions, and try to eliminate them before they reach the point of being a full on obsession.  There is nothing fun about eliminating these obsessions, and they are truly damaging to his, ready for it, happiness.  So that is the complicated, delicate, nuance filled dance we dance as parents, we make our children happy, by denying them certain things that on the surface appear to make our children happy.