"Birthday"

Last Sunday I took Zane to what he said was “The best day of my life so far!”  We had a very fun day, that was very special.  Before I get too far into the story of our day I have to give a little background information to my newer readers.  Before I had kids, I had the distinct pleasure of working for the band Toad The Wet Sprocket, up until the day they broke up as a band.  I worked for them throughout the nineties, starting with a concert I promoted for them in 1991 for Fear, and ending with being one of their guitar techs on the Coil tour in 1997 through 1998.  I even worked a few days loading gear into a studio when they were going to start making their next record. . .  a record that ended up being put on hold for something like 17 years, because the band broke-up.  For those of you who follow Toad, that  break-up ended officially a few years ago, and unofficial even earlier.  When they started touring again, I was able to go back out on the road with them for some of their tours.  As Holden got older, it became more and more difficult to get away.  As Toad got closer to releasing their new CD, their tours were getting longer and longer.  Eventually they had some personnel changes, and they didn’t need me anymore.  Honestly I had become a huge pain in the butt anyway, because it would take me so long to commit to a tour, because I had to make sure Holden was taken care of back at home.  However, I have maintained a good friendship with the guys in the band, who happen to be among the sweetest humans alive.

So, last Sunday Zane and I had a full schedule for the day.  First we were going to stop by a very old friend of mines house, for a birthday party/house leaving party.  This friend is a touring musician himself, and for years I always hoped we would run into each other on the road.  We had some really close misses, but it never happened.  So when he invited me to his party, I decided to take Zane and go.  It was SO great to see this old friend, and his party was full of musicians jamming music.  Zane and I would have had so much fun hanging out at this party all night, but we had to leave after just over an hour, to head to our next adventure of the day.

Toad was ending an over 2 month long tour with the Counting Crows at the Greek Theater in Los Angeles.  The band was nice enough to provide me with passes for the show.  Zane and I got to watch the whole show from the side of stage, then hang out backstage, and latter on the tour bus.  My whole reason for telling you all this, believe it or not, is not to brag, but rather to express how incredibly Zane handled himself.  At both the party and the concert.  As I have stated in previous blogs, Zane is really into music, and plays a few instruments himself.  He was so comfortable sitting back and soaking in the music at the party.  At the concert, he had a great time, and honestly conducted himself better than some adults I have taken backstage at shows.  It wasn’t his first show. On his ninth birthday I worked a Toad show at Pershing Square in Los Angeles, and brought Zane along.  He had handled himself quite well that day as well, but he admitted that this one was a lot more awe inspiring of a venue, than the Pershing Square show, which was basically in a park.  I would love to take credit for how great Zane is, but in truth, I honestly haven’t been able to focus on Zane as much as I could have, owing to Holden.  I have always made it a point to spend time with Zane.  While we lived in Escondido, and I worked a regular 9-5 job, I had hired a nanny to watch the boys while I was at work. I paid for an extra 4 hours every week, so I could take Zane out, while she watch Holden.  Now that his mother and I live in the same area, I take Zane for a whole day every Saturday, and she takes him for the whole day every Sunday, without his little brother.  I have always felt that this is really important for Zane.  As I said though, I can’t always give him my attention.  I already told this story on the blog, but once I was helping Zane with his homework, we were at the kitchen table, and Holden was in the kitchen with us.  He took a dryer sheet and put it in the toaster over.  I heard him twist the power button/timer on the toaster oven, and immediately got up to check on him.  The dry sheet had slipped through the grill and landed on the heat element and had already burst into flames, just in the time it took me to walk from the kitchen table to the kitchen counter some 10 feet away.  So even when I am focusing on Zane, I have to stay focused on Holden, and can’t completely focus on Zane.  None the less, Zane is a damn cool kid.  He is happy, and communicates well with me and his mother.  He loves music, likes to write stories, and loves anime and video games.  He has his own ideas and ideals, a quirky sense of style, and loves strange things.  He is also a moody teenager from time to time, and pushes his limits.  All and all though, he is a damn good kid.  I am very proud of the person he is growing into.  As he becomes a teenager today, I hope that these formidable years go well for him.  I hope we can stay as close as we are, and have our special bond last through his teen years, and into adulthood.  

Zane has said on multiple occasions that he feels lucky to have a father like me, I don’t really know what he means by that, but I can tell him, I feel damn lucky to have a son like him.  Whenever you ask Zane about his life, he always laments that his parents aren’t together, and that his brother has autism, but then he gets this little grin on his face and expresses how our unconventional life seems like a lot more fun than other peoples conventional lives.  I have to agree!  We may not be your standard nuclear family, but we have a lot of fun in an unconventional way.  You won’t see us winning any family of the year contest, but you might very well hear us singing at the top of our lungs, driving around town, or jamming music together, or maybe even backstage at a concert.

(p.s. the title “Birthday” refers to the beatles song.)

"Good Morning"

Life with an autistic child is often about routine and consistency.  As a parent I do a lot of priming when we do anything that is out of the ordinary.  It basically consists of explaining what is going to happen, and hopefully Holden understands, and doesn’t get the wrong idea in his head about what is about to transpire.  Priming is a great tool, and works really well a lot of the time.  I even prime him when I put him to bed at night, by telling him it’s time for bed, then asking him a question he knows very well. “If you wake up before the sun comes up, what are you supposed to do?” to which he responds “go back to sleep.”  I wish I could tell you that this bit of priming always works, but unfortunately it does not!

On any given day Holden wakes up between 3:30am and 6:30am, it doesn’t matter what time he goes to bed.  If he wakes up in this range, he is basically up for the day.  Sometimes, maybe 20% of the time, I can get him back to sleep if he wakes up at 3:30ish, but it will take two hours for him to go back to sleep.  If he wakes up before 3:30am, like 2am, I have about a 75% chance of getting him back to sleep, and it will usually take around 30 minutes to an hour.  The fun doesn’t end here though, because no matter what time Holden does wake up, within about 5 minutes he is fully awake, and ready to make lots of noise.  As you can probably imagine, I can’t let him make as much noise as he would like, he would not only wake up the household, he would wake up the whole neighborhood.  So what do you do with a nine year old autistic kid full of energy, and making lots of noise?  That is a damn fine question…

Let me first set the stage for you.  Holden and I sleep in the same room.  We have separate beds, but as he is a flight risk, I really don’t feel safe with him in his own room.  Most of the time when he wakes up, and I am not in the room, his first instinct is to track me down. Let’s face it, Holden’s attention is very easily diverted though, so he may set out to find me, but end up taking a 3:30am stroll down the street, or play with the toaster oven, or the microwave, or anything else that he tries to get himself in trouble with.  I am a pretty light sleeper, but I am often running on very little sleep, so I don’t want to risk not waking up.  So we share a room (currently we also share the room with a dog, this will become amusing later).  When Holden wakes up, there is about a five minute window where he tosses and turns as he is coming out of his sleep.  He is often still breathing fairly deeply at this point.  I usually wake up, immediately check the time, and decide what I am going to do next.  Assuming I am not going to try and get him back to sleep, the following occurs.  As if they have been planning this for hours, at the exact same time, Holden gets out of his bed, and comes into my bed, while crossing the dog, who gets out of my bed, and goes to Holden’s now empty bed.  I can only assume the dog also wakes up when Holden starts stirring, and waits for that inevitable moment that Holden with transfer over to my bed, to transfer to his.  I don’t even have a clear idea when or why this ritual began, but I can tell you that Holden is already pretty hyper by this time, and will proceed to launch himself on top of me, and roll around on me, while giggling and attempting to bite me.  Here is what is so odd about the dogs behavior.  If I were lying on the couch, and Holden decided to jump on me and do the same antics, the dog would get jealous, start barking at us, and try to climb on the couch with us, while nuzzling and nipping at us.  Yet he seems to understand that in the morning, I am trying to get Holden to remain quiet and calm, and he leaves me to that task, while continuing his morning sleep.  

After they play musical beds, I spend the next few hours trying to keep Holden quiet and calm.  The magic time I am shooting for is when the sun is up, and it’s light out.  Then Holden can have some iPad time before breakfast and shower time.  I don’t want to give him the iPad when it is still dark out, because I know he will just start waking up earlier and earlier to gain access to it.  He knows he won’t get the iPad until “My sun comes up.” Apparently Holden own’s the sun, cause he always say “When my sun comes up.”  You can even ask him, when do you get the iPad in the morning? “When my sun comes up.”  Of course he still asks for the iPad every 30 seconds, and asks if his sun is up in equal amounts, but it won’t lead to a meltdown (by the way meltdowns are very, very loud), because he has been well primed that he won’t get it until “his” sun is up.  

Those early morning hours, between dark, and sun up, are some of the most difficult hours with Holden.  He gets very silly, laughing and giggling.  He tries to bite me non-stop.  This is not his usual meltdown, “I want to hurt you bites” it is his, “I really need sensory stimulus right now!” bites.  Unfortunately for me, they hurt almost as much.  So I try to keep him quiet, I try to keep his teeth off of me, and I try to keep him from leaving the bedroom.  I have the capacity to lock us in the room, which I use when I am taking a shower, but this will only keep Holden in the room. It certainly doesn’t keep him quiet, he will start knocking on the door, which will escalate to banging on the door.  So this goes on until “his” sun is up, then a whole new set of issues can surface.  

At this point I give him the iPad, and I get in the shower while he is distracted and happy.  He won’t stay distracted and happy for long.  As I have stated before, the iPad can not sustain him for very long.  Eventually he will either have something upset him, like a video that is no longer on You Tube, or won’t load for whatever reason, or he will decide that he wants to go make a video in the living room or the backyard, either way, his contentedness will come to an end.  Hopefully I am out of the shower by that point. I try to keep him reasonably quiet until around 8am on the weekend or summer.  I try to never let him be overly loud, because consistency is important.  Letting him be loud in the afternoon, will lead to him thinking it’s okay to be loud at 3:30 in the morning.  

So if we are ever talking, and I yawn in the middle of our conversation, please don’t take it personally, I have probably been up since 3:30am, after going to bed at midnight, because my only free time is from the time he goes to sleep, until the time he wakes up.  Like as I write this.

"I Love You"

There is an ancient proverb, dating back to the Liao Dynasty that is roughly translated like this: “The probability that someone is watching you, is directly proportional to the stupidity of your actions.”  Okay, well maybe it doesn’t date back that far, more like the bumper sticker era of the 80’s.  None the less, it would seem to have some merit to it.  Nobody is ever around when you pull off a really graceful whatever, but slip and fall in a pool, and it happens during a party where fifty of your closest friends happen to be in attendance.  The digital age has certainly exacerbated the situation, now there are also ten people catching it on video, and it makes You Tube, with links from Facebook, twitter, and whatever else, before we are even home from the party.  I wouldn’t be surprised if short videos have become more popular than television shows, they suit the low attention span of modern time.

It just so happens that one of Holden’s many obsessions is making videos of anything and everything, and posting them on You Tube.  Holden happens to be of the John Cage philosophy when it comes to his videos.  He is happy to have any background noise going on, it just adds to the experience.  Even if it’s something private or personal.  Nothing like having a “private” discussion with his mother about conflicts in parenting, only to find out five minutes later that Holden was filming something in the same room, and our entire discussion is now playing back, while he watches his video that he has already uploaded to You Tube.  Like the not so ancient proverb mentioned above so eloquently states, it seems to never be at the most opportune time.  At first I really didn’t think too much of it, because You Tube has millions of viewers, viewing an uncountable number of videos, and the chance of finding unpromoted videos seemed pretty low.  Then Holden started getting subscribers?!?!?!?!?  I couldn’t believe it.  So I started looking into it more.  Holden has a knack for naming his videos things that have a lot of appeal.  He will call them things like “PBS Kids Logo Mix”.  Even if the video is only of a brief video of PBS logos for about 2 seconds, while Holden sings his own background music, and then pulls the camera away from the logo and films his feet walking across the room.  Still, he gets hits, views, and even subscribers.  If you search You Tube, you soon find that there are a lot of autistic kids posting videos of the same nature.  Holden finds them all the time, and watches them over and over again.  It’s like some secret society, and they are communicating in code.  Having viewed some of these videos, it is clear that a lot of these cinematographers also don’t mind the realism of families living their everyday lives in the background.  My heart immediately goes out to the background voices, as I wonder if they know their conversations are now part of the digital universe to be perused by whomever is inclined to watch videos of the autistic underground network.  Being totally paranoid and believing in conspiracies far and wide, I have tried to decipher the videos of the AUN (autistic underground network, remember, I just said it, keep up please) with little or no success.  The best I can tell, they are forming a plot to take over the government, and install Barney the Purple Dragon (or is he a dinosaur?) as our leader.  In all seriousness though, paranoid or not, I tend to look and see what Holden is doing on his iPad now, before having any serious conversations about anything, with anybody.  It has almost become second nature.  First you begin to express something, then you stop abruptly, look for Holden, check what he is up to, then continue on.  It reminds me of the Bertolt Brecht playlet “The Spy” where two parents argue with each other, then become extremely paranoid when their son is missing, thinking he has turned them in to the SS, only to find out he went down the street for some sweets, yet they remain suspicious of him anyway.  “The Man” is always watching in my home, only he is a nine year old autistic child.

So, if you want to come hangout sometime, please don’t hesitate to stop by.  Have something, or someone, you one to vent about? If you know me, you know I am a great listener, just make sure Holden isn’t innocently singing to himself while playing a “game” on the iPad.  It could be you are under observation by the AUN.

(I now have to write “Walt Disney Home Video Logo Collection, Warner Bros Logo Collection” because Holden is in the room while I finish this, and insists that the piece will not be complete without that in it somewhere. I think it is another code word for the AUN!)

"Can You Feel The Love Tonight"

In two weeks Zane will be entering his teen years.  The flood of thoughts that enter my mind over this concept is like the Mississippi (M I S S I S S I P P I , I always feel like a kid when I spell that!) during rainy season.  Most of the fears attached to those thoughts are because of my own issues pertaining to childhood, and my teenage years.  The great thing is, Zane isn’t me. He never has been, and he never will be.  Honestly he is a much better person than I was at his age, and I have no doubt he will be a much better adult then I have been, when he reaches adulthood. The other great thing is that a lot of the time, Zane is okay with being Zane.  I am very fortunate that Zane also likes that I am his dad.  I think my own totally lack of sanity, a typicality, and predictability help him feel comfortable as he deals with his own oddities (which we all have).

We communicate...

It’s pretty damn cool!  

He sends me emails of videos he wants me to watch, I send him emails of pictures I think he would like.  We hangout and watch movies when his brother is asleep or with his mother.  Zane has recently started playing bass, he already plays drums at school, has taken piano lessons, and loves to play the ocarina.  The cool thing with him playing bass is that I am teaching him, and we have begun to play my songs together.  This was a dream come true for me.  When Zane was born, I always wanted to play music with him.  In the last month we have done just that! I have been teaching him some of my songs, and we have been jamming together (again in stolen moments when his brother isn’t around or is asleep).  This is super cool for me, because it is an interest of his that I don’t have to take a crash course in.  I believe it is important to keep up with my kids interests.  So I try to learn about the things that Zane likes so we can talk about them.  Honestly, some of the things he likes, just don’t interest me, but I learn about them anyway.  We do happen to read the same books a lot. Sometimes it’s me reading his choices, sometimes him reading my choices.  It’s so cool to have Zane walk into the living room and declare indignantly “How could they leave Tom Bombadil out of the movies!” Meaning he just read the part in the Fellowship of the Ring where the hobbits meet Tom Bombadil.  To which we enter a long conversation how movies, even great ones, can’t replicate books.  The other great thing about Zane, is that often, after he has said something in anger to me, he will come back later and tell me he doesn’t really feel that way, and he was just “pissed off”.  I greatly appreciate him communicating this to me, and I think it shows a lot of maturity.  Certainly I would love for him to have enough self control to never say those things in the first place, but that is asking a lot of a soon to be thirteen year old.  

One of the many reasons that Zane is so mature, is without a doubt, because he has had to grow up with an autistic little brother.  The things that Zane has had to witness, and live through, are honestly more than a child should have to live through.  Unfortunately, children are forced to live through things much worse everyday in countries that are at war.  In Zane’s case, I think the key has been being open and honest with him about the things going on.  To keep a dialog going about why Holden does what he does.  The interesting thing that I have witnessed, is that when other people make comments about Holden or, give Holden a condescending look in public, Zane is always very affected by it.  He often rises to Holden’s defense.  Where as when we are alone at home, Holden is his annoying autistic little brother.  My own brothers were the same way, torment me at home, but if one of their friends got too rough with me, they were quick to come to my rescue.  Almost as if to say, “Hey that’s my punching bag, leave it the hell alone!”  

So we enter this time in a boys life, when they usually start having big confrontations with his father.  It is that chest pounding age where boys try to become men.  They seek the man they know best, and begin to posture.  They push the boundaries and see if their father is man enough to push back.  I think it’s all a big load of crap, and I hope Zane does too.  Cause I would much rather sit back and jam some tunes with him, then have to play some dominance game with him.  Walking around the house metaphorically pissing on everything, marking our respective territory.  Who want’s to do that?  And the clean-up, forget it!

"In Your Eyes"

I was talking to myself the other day, as I often do.  What? You know you talk to yourself too.  Anyway we were thinking (me and myself) that August is a month of quite a bit of significance.  For one thing it is the month in which Zane was born.  He was actually born on August 22nd 2001.  Does that year ring a bell?  Zane was born 20 days before 9/11/2001, a day that will remain significant for all times.  His birth was also a very significant date in my life, it was the day I changed forever from a person, to a parent.  For those of you who have gone through said transformation, it is a significant change.  The other noteworthy part of August is that is marks the return to school for my kids. 

I think parents everywhere can appreciate that summer is a tough time in parent land.  I don’t want this to sound negative, we love our kids after all, but it certainly upsets the routine of the normal flow of life.  Let’s face it, for 9 months of the year our kids are at school.  What we believe about school, and it’s effectiveness is a different story (or perhaps a blog in the future).  So when they are suddenly cut loose for 3 months. . . well it requires some adjusting.  Most kids, whether they believe it or not, like routine.  So when the routine is thrown off, the kids are thrown off.  This is especially true of kids on the spectrum.  For Holden there was the added issue of his therapist having to take time off of work, that coincited with the end of school.  So he went from having school everyday from 8:15am till 2:50pm, then therapy from 3:30pm till 5:15pm, to nothing.  This is one of those huge nothings, like in the cartoons, where it goes from the huge crowd noise, to the sound of a loan cricket.  Holden’s reaction was equally extreme as he attempted to adjust to extreme change.  His meltdowns became more frequent, and more intense.  They also became more aggressive.

On any given day, I tend to wear a few different “Uniforms”.  I am Zane’s dad, Holden’s dad, and Holden’s therapist to name a few.  After all, the whole point of “in home” behavioural therapy is that I learn how to work with Holden in his home environment.  If I can learn the necessary skills to make daily life more connected to the world, then that is one more avenue for Holden to learn from, and grow.  My goal is to get Holden “wired in” to the rest of the world.  I don’t want to change Holden, I want Holden to be able to connect to the other “www”, the world wide world.  Holden has shown us all that he is very intelligent, funny, sweet, loving, and capable, now we just need to get him connected.  I believe if he can learn to express himself outwardly, he can overcome a lot of his “behaviours”.  I think it’s a major bummer that we all can not connect to his universe, I suspect it’s a pretty amazing place.  The few times I have been honored enough to catch a glimpse of that world, I am left in complete awe.  Unfortunately it is not practical for the rest of the world to get “wired in” to Holden. 

So this summer, I have been forced to wear my therapist uniform a lot more.  The temptation is to just hand him his iPad, and leave him to stem over youtube all day, but this not only causes him to DISconnect from the world, it also leads to meltdowns as well.  Like the Romans  of old, he consumes and consumes, until he needs to go barf it all out.  So I work with him, and work with him, and work with him.  Honestly I am bruised, bloodied and exhausted, physically, mentally, emotionally, literally, figuratively, ideologically, and mathematically (just checking if you are paying attention, not really mathematically) from our daily work.  What I can tell you is that Holden’s functional language is up, his eye contact is up, and his expressive language is up.  I like to tease Holden (I should note that I tease him to connect with him, not to be mean), so the other day when he requested a bean and cheese burrito, I asked if he wanted a bean, RICE, and cheese burrito (Holden doesn’t like rice in his burritos), he responded with “No rice” which was a totally normal response for Holden, but he followed it up with “I want bean and cheese burrito, no rice please.” Wow! That is a huge sentence for Holden. There have been similar extended sentences like this from him this summer.  Likewise there have been more times where he spontaneously makes really good, held eye contact.  Those are the great aspects of working with Holden everyday.  There are, of course, trials and rough days (a lot of rough days) and meltdowns that lead to self injurious behaviour, as well as hurting those around him, mainly me.  Like his therapists, I have learned to not take it personally.  That doesn’t mean I don’t lose my patience from time to time, or end up biting Zane’s head off for something that probably didn’t require that response.  It means that after the meltdown is over, I lick my wounds, treat Holden’s, give Holden a big hug, and we go back to work.  We re-engage, and move forward.  I don’t take it personally. 

This is my first blog in way too long.  I think there will be more to come, and more frequently.  I have allowed too many outside variables to affect me, but I hope to not allow that to happen anymore. I created a Facebook page for this blog, you can find it here: https://www.facebook.com/autismandmytwoboys?ref=hl&ref_type=bookmark 

I will always post when I write new blogs here, plus post other things that are hopefully helpful and interesting for parents of children on the spectrum.  Also stuff I am not allowed to post on the nonprofit's page.  Hope you all like it!

"Aye, There's the Rub"

Sometimes I feel as though I spend many hours of my day second guessing my actions, while parenting my autistic child.  In all honesty, I spend an only slightly lesser amount of time second guessing my actions in parenting my neuro-typical child.  It’s the minutiae of raising an autistic child that makes it so much more tedious than raising the neuro-typical one.  Those tiny, seemingly trivial details, that really don’t make a huge difference to a nuero-typical child (taking into consideration that a tiny dose of anything repeated a lot, becomes a big dose) can have a lot bigger impact on the autistic child.  Okay, so I think it’s example time, not to be confused with “Hammer Time” that is a totally different thing.

Every morning I try to time out Holden’s morning routine, so that I leave the least amount of time for him to get obsessed with anything.  The longer he has time to think about what he wants to do, the harder it is to pull him away from said activity.  This is especially true if in his own mind it becomes a very detailed agenda.  He then has trouble breaking from that agenda, he has formulated in his own mind.  So to make my life, and his, easier I try very hard to keep the morning flowing, no down time.  Of course, he doesn’t always wake up at the alarm, and sometimes other things come into play, like the bus being late.  This morning was flowing pretty good.  It is only his third day back in school, so I am trying to get the timing right still.  He ended up with a 5 minute window of time, that I thought had gone by without issue.  We went outside to wait for the bus at the appointed time.  Everything was going “normal”.  Then he began to divert from the norm.  He was riding on my shoulders, a very common place for him to be while waiting for the bus.  I think is gives him a closeness with me before leaving for the day to go school, and he quite enjoys it.  He began to direct me back towards the house while asking for “Little Thomas”.  Holden goes through cycles with this, but for a long time has liked Thomas the Tank Engine.  His battery operated Thomas disappeared recently, and while visiting him, his mom suggested it might be in the backyard somewhere.  I assumed he wanted to look for this Thomas train.  I told him we would look “after school”.  He began to get agitated, and wanted to look immediately, the problem was the bus was already coming, at that moment we both could hear it.  His agitation increased as a result of the bus coming.  Here is where my actions led to me spending the next few hours second guessing myself, and writing this blog.  He continued to ask for “Little Thomas” and didn’t want to get on the bus.  After making sure I had his attention, I again told him we would look “after school”.  He seemed to understand this and went on the bus.  However, it soon became clear to me that he thought I meant “first get on the bus, than I will go get your train.”  I would never bribe Holden with something, to get him to do anything, then not give him the thing I promised.  As soon as I went to get off the bus, he asked the the doors to the bus remain open.  That was when I knew he was thinking I was going to get the train.  I again explained to him that we would look for the train after school.  I got off the bus, and as soon as the doors closed he got upset.  The bus driver took this as his cue to go, and drove away.  While I walked back to the house, with a very bad feeling, and emailed his teacher about the situation.  I went into the house, and looked into the backyard, and there was “Little Thomas” looking at me, with a look on his face that clearly said I was the worst father ever.  About an hour and a half later I received a call from the transportation department, informing me that Holden had a difficult time on the bus.

“Aye, there's the rub”.  Here is where it gets complicated, looking back and analysing my actions.  I should have realized when he said “Little Thomas” he did not mean the battery operated Thomas, because he calls that one “Metal Thomas.”  He had clearly looked out the sliding glass door this morning, in his 5 minutes of nothing, and seen “Little Thomas” and decided while waiting for the bus, that he wanted him.  I could have just let Holden run into the backyard, and he would have gone straight to “Little Thomas” and brought him back.  At that time I could have explained that Thomas had to stay home, and he could play with him when he got home, after school.  BUT, that is not what we are trying to teach him in therapy.  We want him to be flexible when these issues come about.  He has to learn to fight that immediate impulse to do something, and wait till it is okay, or perhaps not be allowed to do said impulse at all.  So had I given in to his impulse to get “Little Thomas” I would have been enabling him to fulfill that impulse, instead of making him be flexible.  Because there are a LOT of things that he can’t have or do, that he would like to do, he has to learn flexibility.  There are times when I could prevent a meltdown, by letting him fulfill his impulse, but I am just going to create a bunch of future meltdowns, by not teaching him to be flexible.  

So then why all the second guessing?  There are two things that I really didn’t like about how this all played out.  I don’t like that Holden thought I was going to get his train, once he sat down.  Like I said, I would never bribe him, then not give him the bribe once he did the thing I wanted him to do.  I also wonder if I should have allowed him to fulfill his impulse, so that his day at school was better.  That is a double edged sword.  Yes, he would have had an easier time this morning, but it would potentially make it harder the next time a flexibility issue came up at home.  Do I sacrifice home life, to allow for better school experience? Or do I stick to the plan, and help him learn flexibility EVERYWHERE? I think he needs to learn it everywhere, but it sure isn’t fun sending him off to school, knowing that he will very likely a bad day!

"Time keeps on Slipping"

In deciding to write this new blog post, there was much debate, within my own mind, whether I should just jump right back into blog posting as if there hadn't been a huge gap since I last wrote in this blog.  Obviously, I decided that some explanation was necessary.  No, Holden has not suddenly become “normal”, he is still very much autistic.  I had been focusing my attention on a much bigger writing project.  One that took up all my writing time. Now that summer has arrived though, and my time to write has become much more finite, I have shelved that project till I can write with more consistency.  The thru line of thought is much more important in that project, than in blogging.  I also had a friend who is near and dear to me, remind me that it was time to blog by her own example.  So here I go a blogging once again.

Holden’s in-home therapy has once again shifted into the hands of a different vendor.  Our last vendor, for the most part, stopped doing in-home therapy.  One of the reasons was the change in the insurance laws.  As is always the case, the best of intentions were in mind when this new law was put into place, but the insurance companies have quickly found ways to manipulate it to their benefit.  That however is not the topic of this blog.  

Holden’s old therapy vendor had it’s issues, but it brought two therapists into our lives, that continue to touch our lives to this day.  They were two very special people that we all came to love as family members.  Ironically, even if we hadn't had to leave that particular vendor, we would have had to say goodbye to these two very special people anyway, as their own lives were going to be carrying them to different places.  I can not even begin to express how much of an impact they have had on all of our lives, and their impact on Holden’s life is truly immeasurable.   They are missed dearly, and will always be in our hearts.

Holden’s new vendor and therapists have been working with him for a few months now.  They have been doing a great job, and it is a lot more intense than the last provider was in philosophy and implementation.  This is great, but (yes there is always that damn ‘but’) it has also meant that Holden is put under more pressure and greater demands.  As with all new and challenging things, they seem to get worse, before they get better.  This doesn't mean that after a week or two, Holden will adjust to this new program, and things will be great.  It means that the intensity and demands will continue to rise, as he progresses.  Again this is great, BUT...!  

I have always been very involved in Holden’s therapy, especially if Holden wanted me to be.  This is certainly still true, but there was a situation recently where I became the thing that Holden needed to get past.  As a result I was asked by Holden’s new, and very capable therapist, to remain inside while she worked through this issue with Holden in the back yard.  Let’s remember this is Holden, so it’s not like the issue is something like me arguing with Zane why he needs to shower everyday, and Zane trying to plead his case for being allowed to smell bad all summer long.  When Holden has an issue, it means screaming, yelling, kicking, flopping on the ground and crying.  So I am trying to do what is best for Holden, and stay in the house, while he screams for “daddy” and is crying and getting very upset.  He is melting down, and constantly calling for me the whole time.  Any parent knows that horrible feeling of having their child scream for them.  Sometimes it is a necessity though, like dropping said child off at daycare.  It rips our heart out to hear them cry out for us, and be sad, and we hope, with all of our heart, that 5 minutes after we leave they are fine.  Well, with Holden, that has not changed as one would think it would for his age.  I can tell you, that his age has not decreased the heart ache at hearing him cry for me either.  I know that he is in good hands. I know that he is being made upset right now, so that he may be more equipped to handle these moments in the future.  None of that decreases my want to put an end to his misery.  

What I know though, is that my time on this earth is finite.  It is a reasonable assumption that Holden will be around long after I am gone.  The more he can advance now, while I am around, and the more he can advance, while he can still get services, the better prepared he will be for when I am gone, and he doesn't get these valuable services.  Because research has told the powers that be, that after a certain, predetermined age, “these kids” stop developing, they cut off services after that age.  Holden has not even come close to reaching the point where he has stopped developing, but in terms of his age, he is getting frightening close.  So as much as it feels like someone is stuffing their hand down my throat, ripping through my esophagus, tearing my diaphragm open,  reaching into my rib cage, and ripping out my heart, I need to let this person do their job.  I plead in my mind for Holden to understand the demand being put upon him. I hope that he figures it out with as few of these episodes as possible, but he has to figure them out, and as much as it is SO wrong, the clock is ticking.