"A Change Would Do You Good"

It has been a while since I last sat down to compose a blog.  It certainly has not been for a lack of stories to tell, there are many.  This summer turned out to be the most difficult summer yet for Holden.  Ironically the reason it was such a difficult summer, is actually a good thing.  If you haven’t guessed it, that is going to be the subject of this blog.  Before I embark on this though, I have to say, though I am not ready to go into details about it, and may never, this summer was TOUGH.  It saw major meltdowns, that were very hard to live through, and according to a friend who visited for two days, even harder to watch as an outsider.  Holden’s meltdowns were very aggressive, and both self injurious, and directed at me.  We both had our share of bruises, lumps and cuts, that he inflicted.  I also don’t want to paint a picture that it was only that.  He probably averaged 1.75 bad meltdowns a day, so a little less than two a day.  With a few moderate ones as well.

So why was it good that this summer was so damn tough.  Because Holden was the most aware he has ever been.  Aware of everything going on around him.  This is a bit of a deceptive statement though, because Holden is always very aware of his surroundings.  What was different was that he was much more aware of the abstract.  Holden has always noticed the tiniest of physical changes to his world, and I mean TINIEST!  If you have a half inch piece of string on your shoe, Holden will notice it, and want to remove it.  This tends to be interesting while out in public, and Holden sees a leaf stuck on some random person’s shoe.  He will go diving in, and try to remove said leaf.  Meanwhile the poor innocent bystander has no idea why some kids is charging his feet.  If I make changes to the house, I have found that the best way to do so is to make the change while he is not home.  Then make sure to prime him that I made a change, then show him the change.  It doesn’t mean he will accept the change, but it is the best shot at getting him to accept it.

What was different this year was Holden’s awareness of time, and his awareness of situations.  I’ll talk about time first.  For a very long time, the concept of time has been too abstract for Holden to grasp.  Short amounts of time became more apparent to him about a year ago.  In fact he would start bargaining with me.

Holden: Nexus 5 Please.

Me: Nope, that is mine.

Holden: 10 minutes!

We had used those short time values, 5 minutes, 10 minutes, 15 minutes in therapy enough that he was starting to grasp the concept.  But things like tomorrow, next week, or yesterday still had no meaning to him.  So there was a long standing concept that he did understand, though it took a while.  I still use it today, it is “Shower, bus and school tomorrow”.  It was my way of priming him every night, because it was always such a battle to get him to willingly go to school, still can be.  So he started to modify this with “No shower bus and school tomorrow.” (By the way, the way Holden says tomorrow is so damn cute!!!) I started to see a pattern here too.  He would say this 1) when he had a bad day or bus ride. 2) He would start saying this around Wednesday night, when he felt the school week should be ending soon.  So he was beginning to grasp the idea of school week, and that it should be ending soon.  Up until about a year ago, he really seemed to have no clue when the weekend was coming.  This led to a new concept; “iPad when the sun comes up.”  He was not allowed to use his iPad on school days until he was on the bus, so he began to understand he could use it on the weekend.  The problem was, he started waking up earlier and earlier on the weekend, to start playing on the iPad.  So he slightly modified that statement, and turned it into a question; “iPad when your sun comes up?” which was his way of asking is tomorrow the weekend.  The next progression in this was the idea of sleeps to count days.  Example:

Holden: iPad when your sun comes up? (translations “Is tomorrow the weekend?)

Me: No Shower bus and School tomorrow. Two more sleeps till iPad when the sun comes up.

Well this idea of sleeps worked for Holden.  Soon he was asking/bargaining with it.  

Holden: iPad when your sun comes up?

Me: No, shower bus and school tomorrow.

Holden: One more sleep than iPad when your sun comes up!

Me: No, three more sleeps, than iPad when the sun comes up.

So over the school year last year, this idea of time became more and more concrete to him.  At the same time he was becoming more aware of other concepts.  Like Kellogg wasn’t a generic name for school anymore, it was a specific school.  Sometimes he wanted to visit GVJH, or he would remember Hidden Valley Middle School from Escondido where we used to go hang out sometimes when we lived there.  Places were becoming more generic to him.  Holden has an amazing sense of geography, and as a result he always knew where his favorite places were, like 7-Eleven, or Rusty’s Pizza, or Whole Foods, but now we could pass one he didn’t know from geography, and fully understand that they basically carried the same stuff.  In the past we would have to go to a specific 7-Eleven, or he might have an issue, but now he understood they all carry the same stuff.  He just had to find those key things in the new location to feel fine in a different place.  This was huge for Holden.  He was accepting that even if they didn’t look the same, and weren’t in the same place,he could find the same things inside.  Again over the last school year his ability to understand concepts like these skyrocketed.

So, when it came time for the school year to end, he completely comprehended what that meant.  The first change was not as bad.  It was explaining that after just 9 sleeps he would be back in school.  However, summer school was only four days a week, and only until 11:45am.  Once again, he comprehended that he was getting less time, and less days.  He was okay with this though.  The misconception is that Holden is super happy in school.  Well, for Holden, school is like diet and exercise, he gets that it is better for him, but he doesn’t always look forward to it.  Plus he really likes the social aspect of it.  He misses the people.  Then came the end of summer school.  Once again, he was very aware that it was coming to an end.  His anxiety spiked on the last week of summer school, and he came home the last day completely comprehending that he was not going back to school for a while.  In the past it would take him a few weeks to start to realize, hey I haven’t been in school for a while.  Plus I would make up a schedule, and keep this schedule all summer long.  You shower at this time, read at this time, so forth and so on.  He was like, okay this is like school, I can dig it.  Not anymore.  It didn’t matter what I did, he knew he wasn’t at school, and he knew I wasn’t his teacher, and when we visited the school, he knew it wasn’t open.  He missed his aids, and he missed the school.  We would visit the school a minimum of 5 days a week over the summer, and sometimes he requested going twice a day.  He constantly asked how many sleeps till school started, and would confirm his figures with me everyday.  Very soon just visiting wasn’t enough, he wanted me to get keys for the school. Open his beloved room 2.  Open the P.E. shed.  Open the cafeteria.  His anxiety spiked as the summer continued, and everything would set him off.  Sometimes he would start melting down within five minutes of getting the iPad, which he still has to wait until the sun is up to use.  His flexibility was getting shorter and shorter.  Sometimes he would be lying in bed, on the verge of going to sleep, and he would start kicking and biting himself, and screaming.  Completely out of the blue.  No game setting him off, no denied access to something, no having to be flexible, just instant meltdown.  I’m sure there was plenty going on in his head, but I don’t have access to that information.  The further into summer, the more he became inconsolable.  Everything led to a meltdown, because the thing he wanted was not accessible to him.  There was no redirecting him, no distracting him, and no compromising.  He wanted something very specific, and he knew, he was completely comprehending, that he could not have it.  

His self awareness, and awareness of everything around him was amazing...but it was also torture for him.  I know it is a great thing!  I was completely blindsided by it this year, and next year I will try a new strategy.  I don’t think a summer camp is the right fit for Holden, but I have a whole school year to figure out what will work.  Yes it made for a very tough summer, but this kid is aware!!!! He is so aware!  We have been working on this for so long, and it has been getting more and more noticeable.  It may cause a lot more problems in the future, but is also is a HUGE sign of hope.  It is the golden key to unlocking everything else.  I will take every damn bruise, lump, and scar I got this summer, because it was progress.  It was ugly, frustrating, emotionally exhausting, and at times pushed me way past my limit, but it was progress!!!!

"I'm All Alone"

For me, one of the most difficult parts of being a parent of an autistic child, is the extreme isolation it causes. This isolation isn't solely because I am the single parent of an autistic child, the fact that I am extremely introverted doesn't help at all. There is also the fact that I am not a very approachable looking person. I could probably make some effort to make myself more approachable, but it's pretty sad that I should have to. There is also the fact that I am not in control of when I get my free time, that is controlled by outside entities.  

Introversion is a weird thing, in and of itself. In many ways it is very similar to Asperger's. There is social awkwardness, inability to hold eye contact, over sensitivity to sensory stimulation, difficulty in being superfluous in conversation. The equally odd thing about introversion is that, yes I definitely need my alone time, but I also do crave social interaction sometimes. Yet I will do everything in my power to sabotage my own attempts at social interaction. If someone has to cancel on me, I am usually jumping for joy that I don't have to undergo the stress of interacting (or just plain acting) with someone. They usually feel really bad that they are having to flake on me, and I’m like “No Problem!!!”.  But then there are those times where you meet someone, and they make it so easy. Earlier this week I drove down to LA to pick up some gear for my old boss. The guy selling the gear was super nice, and we had a really good conversation. I found myself having to not proclaim my lifelong friendship to this poor guy that just met me. I didn't want the conversation to end, but I had to make the one and a half hour drive back to Santa Barbara, that we all know can sometimes take over four hours. It helped that he was in the music industry. When I worked in music, either as a tech, or a musician, it was always so much easier to interact. For those of us on the road, we all seek genuine connection with people, not fans throwing themselves at us. Okay, maybe we ALL don't crave that, but some of us did. It was easy to talk to local crews, other bands and their techs, because it was in the very safe world of backstage. Nobody cared what I looked like, cause I looked like I fit. Despite the fact that you could not trust them, fans too were very willing to approach me, even if their intentions were to suck information out of me, or try to get backstage, or try to get me to deliver a person message to the band. Sometimes they just treated us techs like celebrities too.  It made it easy for me to get my dose of social interaction.  As they always gave me something to talk about (“What’s it like to tour with…”) it made it easy for me to play my role as the Raodie. Tonight, playing the part of the roadie, Jonas I. Marquez (the crowd goes wild).

As a parent of an autistic child, my opportunities for social interaction are very limited, and are controlled by other people. When I do get a rare moment of free time, I often just want to be alone. Trying to achieve some kind of spontaneous social interaction by going someplace always fails. I am too shy to approach others, and too intimidating to welcome others to approach me. On the rare occasions I do get approached, I am way too awkward to keep anyone's attention. I find myself wanting to make some kind of instant connection with somebody, who just wanted to know what time it was. If I try going somewhere with Holden, I am constantly on high alert, because not only will he run off, he is very intrigued by small kids, and in his enthusiasm to meet them, will act as a bowling ball to them being pins. I'm sure I look like a terrorist about to blow something up, when I am with Holden in these situations. Also when your child is exhibiting behaviors inappropriate to the world at large, people tend to assume it is my lack of parenting, something else that does not inspire interaction. So I remain isolated.

The thing is, like eating McDonald's every day (which I don't, I rarely eat fast food, and never McDonald's), I know this isolation is not healthy for me. I have committed myself to being Holden's caretaker until he is at least 18. That means nine more years of isolating myself. I honestly am concerned about the mental impact of nine more years of isolation. I already find myself having conversations with inanimate objects, and animals. I fear imaginary friends are next. The other thing is, if I do put Holden in some kind of facility when he is eighteen, I fear I will be stacking intense guilt on top of social isolation.  I am likely to be found curled up in my bed, hugging myself, rocking back and forth.  For now, I have Donkey from Shrek singing “I’m All Alone” on permanent repeat in my head.  It can be useful for keeping cheesy top 40 hits from getting stuck in there, but after a while, even Donkey gets old.

"All Blues"

I have not put word to page in a while.  At least not in terms of this blog.  I tend to write on a daily basis, it helps me deal with things, and I am the only person that is willing to listen to me go on and on, for free.  There have been forces, for lack of a better word, pushing me away from blogging.  This is my blog, and I can write whatever I want, but I tend to want to keep things about Holden and Zane, and autism.  That is certainly plenty to write about, but sometimes issues arise that make me want to write about other things.  The first thing that transpired, that really pushed me away from blogging for a bit, was an incident that happened at Vons while taking Holden out on an outing.

Holden’s behavioral therapist and myself were taking Holden to Vons to work on some of his independence skills.  The main one we do at Vons is work on him purchasing an item through self check.  As is often the case with Holden, he became side tracked by a cage of colorful balls.  He eloped to the cage, we caught him at the cage, and he began to have a minor, all be it loud, meltdown.  After a few loud shrieks, a man sitting at a table near the cage began to yell at us to “keep that kid quiet and take it outside.”  I expressed to the man that Holden is autistic, to which the man replied “I’m sorry for that, but you know you can keep him quiet, or get him out of here.”  I would love to say that I was the perfect example of patient, and took this moment to enlighten this man on just how wrong he was about Holden and autism… but I didn’t.  Instead I got in the said man’s face and in no uncertain terms told him he had no idea what he was talking about.  I was quite thorough in expressing his lack of wisdom and compassion.  For those of you who know me, I tend to be scaring looking on my best day.  The man decided he no longer needed to be in Vons and quickly departed, and I tried to calm down and get back to the task at hand.  By this time Holden was laughing and giggling with his therapist.  We got back on task, and completed Holden’s shopping trip.  I was left wondering if I should write about this event.  I don’t really want to promote the negative, and certainly not everything is negative. I wanted to wait until I could balance it with something good.  

A few weeks later, while doing the same thing, in the same Vons, just such an event happened.  We used to give Holden a post-it note and some money before we left the house for Vons, so he could pay for his purchase.  We would prompt him to look at his list, and see what we needed to get.  At some point while in Vons, he must have missed his pocket, and the post-it and five dollars were gone.  I kind of figured it was gone.  So we looked around briefly, then went on with Holden’s shopping, and I was going to pay with a card.  When we got to self check, the self check teller came up to me and asked if a post-it note and five dollars were Holden’s.  She has seen us in there a lot, and knows Holden by now.  Someone had found the money, and turned it in, and the Self Check person recognized it as one of Holden’s lists.  I felt grateful to the unknown person who turned in the money, and grateful to the self check person, who happens to have an autistic niece.  

We have also had some really nice people at Blender in the Grass go out of their way for Holden.  There was the askew cup that was righted for Holden at the 5-points Blenders, and the cashier in Camino Real who saw Holden getting upset when I ordered him the small, and he began to insist on the “big cup”, who said she would have the person make it in the big cup for Holden.  Also the entire place was very nonchalant when Holden let out a piercing scream while waiting for his Smoothie.  Not to mention the guy sitting at the bench that Holden enthusiastically climbed onto and snuggled up to.  I rescued him from Holden’s unwanted affection, but he took it in good stride.

Sometimes it’s the little things, like after Holden screams, and I tell him “Too loud”, and by the time I look up from Holden, nobody is staring at us or giving me the “if that were my kid” look, that makes such a difference in a day.  I don’t blame the people who jump, when Holden does something really loud, unexpectedly, hell he startles me sometimes.  I don’t even mind when people have that “I wonder what is wrong with that kid” look.  But the guy in Vons, telling me that “you know you can make him stop” pushes me over the edge, especially when I am already struggling with 1001 other things.  

The absolute best, is running into other parents who have special needs kids.  We have our short conversations while wrangling our kids.  People walking by are sometimes shocked as we grab our kids shirts as they try to sprint off.  I honestly don’t know many other parents with special needs kids, but it sure is fun to talk war stories with the ones I do have.

I think I needed to write this blog, so that I could start writing again.  I need this to be about good things more than bad.  because the truth of the matter is, it can be a daily struggle to deal with everything going on in my life. There are so many things that I can’t or won’t write about.  I needed to take this one little block, and set it aside.  There are still forces pushing me away from writing, but knowing that I have finally faced one of them makes me happy.  

"Epiphany"

I was watching some videos by a really cool artists who goes by Prince Ea.  On his Facebook page he actually refers to his page, and what he does as: Fitness-Music-Inspiration.  He has a catchphrase that is “I Make Smart Cool”.  He does these 60 seconds of wisdom videos, makes music videos, and does some really cool spoken word stuff too.  ***Warning*** some of his stuff is explicit.  He did this awesome rap called “Backwards Rap” that is very creative (https://www.youtube.com/watch?v=xUcJRKVuPak).  His spoken word piece “Why I Think The World is Ending” (https://www.youtube.com/watch?v=itvnQ2QB4yc), is beautiful, insightful, honest, and motivating.  In one of his 60 seconds of wisdom videos, he finishes the video with a quote, a nugget of old wisdom. “Seek to understand, before you are understood.”  I don’t know who originally came up with the idea, but if you do a google search, you find that everybody and their brother has used it.  It shows up a lot as a good habit of mindful people, and mindful living.  I think it is an awesome concept.  I tend to be someone who listens, more than talks.  Quite often when I am really upset about something, and it is bothering me, I will call a friend, but instead of venting my problems, I will ask them how they are.  Quite often they unleash some frustration of their own, that I listen too, and offer any words that I can to help them.  I leave myself out of the conversation though, and just listen or try to help.  By the end of the conversation, I feel better about my own issue, and the friend on the other end of the phone also feels better.  It is a win/win situation.  

This quote, concept, ideal… whatever you want to call it, happens to apply very well to raising an autistic child.  Once again, it also applies to neuro typical children as well, as is often the case.  Sometimes I feel like Holden’s In Home Behavioural Therapist gets so caught up in trying to teach Holden flexibility, tolerance to transitions, and expressive and functional communication, that he forgets to try and understand Holden.  Holden has recently shown a propensity for paraphrasing his scripts.  Allow me to explain what the hell I am talking about to all of you who do not have children on the spectrum.  Scripts are phrases that Holden can use in particular situations.  We don’t make a whole lot of specific scripts for Holden, like some people do with autistic kids.  What we do is offer answers, when he is responding inappropriately.  For instance if a video doesn’t work on Youtube, rather than him screaming, yelling, and biting himself, we would suggest he say something like “I am frustrated”.  Essentially he already is saying this, but in the language that is easiest for him to communicate in i.e. screaming, yelling, and biting himself.  So we try to give him a different way to communicate.  If someone says “See you later” to Holden, we may tell him “Oh, Holden you could say ‘okay, bye (insert persons name)’” and ask him to make eye contact with said person.  Lately though, you can give Holden a script, and he says Screw you, I’m saying it my way (not literally).  For instance I can say, “You need to ask me ‘Dad, can I have a glass of lemonade please’” and he will come back with “Dad, I want more juice please”.  I think this is awesome, because 1) he is coming up with his own way of asking, and 2) it shows he completely understands what I am requesting of him.  So when he is asked by his therapist to place his shoes by the door, and Holden walks over to his shoes and puts them on, the therapist will say “Let’s try again, I said put your shoes by the door.”  If you give Holden a little latitude though, you will find he will never pick up his shoes and carry them to the door, he will instead put them on, walk over to the door, and then take them off by the door.  Is this the most efficient way to put your shoes by the door? perhaps not, but it is effective, and fulfills the requirement.  I have learned to give Holden a chance, so that I can understand him, before I need him to understand me.  Sometimes I find that he is just doing something in his own way.  That doesn’t mean sometimes he isn’t  just trying to avoid doing what he is supposed to do, but I don’t want to jump to that conclusion first.  I have learned to not get frustrated with the therapist either, he works with several kids, everyday.  For the 10 hours a week that he is here, I let him run the show, for the other 158 hours of the week, I give Holden more leeway.  Sometimes it pays off, and I get to understand him, and sometimes it doesn’t, then I help him understand me.  I just want to make sure I give him the opportunity to be understood, before I require him to understand me.

p.s. The picture below is the specific generic profile pic that Holden likes to use on some of his accounts. He will have me change out a different generic profile pic, to this one.

"Thank You For Letting Me Be Myself"

The passage of time is such an odd thing.  We have all experienced the phenomenon by where time seems to go slower, when we want it to go fast.  Like wise at times it seems that time is moving so fast, that we fear we are being left behind.  As I watch Zane go from the tiny baby I held in my arms so many years ago, to the young man he is becoming, I can’t even begin to comprehend where the time went.  I begin to wonder, have I done a good job raising him?  Will he turn into the man I hope he does?  Ironically, I can no better predict the future for  Zane, than I can for Holden.  The main difference is, that if things proceed as they have been, then Zane will be an independent adult someday, the same can not be predicted for Holden (Though still very possible).  

As Zane approaches adulthood, I find myself wondering how best to guide him.  What principals I would like to bestow on him.  The one word that kept coming back to me was gratitude.  Zane and I recently had a long talk about gratitude.  It is so easy for kids to get hung up on the things that they don’t have, that they become blind to the things that they do have.  Actually adults can be guilty of this too, but I am not burdened with the job or instilling values on the world at large, and I am SO grateful for that fact!  So I sat down with Zane when he was having a particularly negative day, and explained to him that for everything he was feeling negative about, I could tell him how it was a positive thing.  He didn’t believe me at first, but we started to go through his mental list, and was genuinely surprised to find that I could indeed give him a realistic, positive value for things that he was feeling negative about.  It was really special to see him truly take in what I was telling him, and start to watch the change in his whole body.  I went on to express how incredibly grateful I am for him and the life we have.  This was the one concept that seemed to really shock him.  He couldn’t see how my life was something to be grateful for.  I have to explain a little here, Zane has had to witness things, that I should have probably taken the time to explain at the time.  For instance:  When Zane was still pretty young, I loaned the drummer in my band at the time, an extra vehicle I had, because his had been repossessed after he hit some hard financial times.  He proceeded to get a DUI in it, and get himself, and my vehicle thrown into jail (well impound for my vehicle).  I was honestly not very happy about the situation, for one thing I was probably liable if he had killed someone.  Also, it created quite a bit of work for me, as I had to get it out of impound as quickly as possible, because impounds charge for storage by the day, and it is not cheap.  This was exacerbated by the fact that I didn’t even know this occurred, until I received a letter in the mail saying my vehicle had been impounded, because this person had gotten a DUI in it.  Yes, you read that right, he didn’t tell me, I had to find out from the police.  Less then a year later, I loaned a guy doing construction across the street from my house, my World War II Jeep trailer.  As odd as this might sound, I loved that trailer.  I used to hook it up to my Jeep, and take it out on Cruise Night in Escondido (a weekly classic car show in the summer in Escondido).  The worker had been borrowing tools from me for over a month, and had returned every tool he had borrowed, so when he asked to borrow the trailer, I didn’t hesitate to say yes.  It was the last time I ever saw the trailer.  In all honesty though, if I had it all to do over again, I wouldn’t do anything differently.  I will probably never be rich, or be able to help the world on a big scale, but if I can make someone else's life better, well then I have made the world a better place.  I’m not saying I improved either of the above peoples lives, but I continue to live my life in a way, that I will give freely of myself.  Why????  Because I am so grateful for the life I have lived.  I have friends that love and respect me...for me.  Friends who care so much about me, and send me reminder notes that tell me someone cares!  I have had some amazing adventures in life too, from the time I was a little kid.  I started playing guitar in 6th grade, and the adventures soon began to follow.  I started playing music in bars at sixteen, I toured with my high school Jazz band, out of country when I was fourteen (Including the 1986 World Expo in Canada).  I played for Ronald Reagan with that same High School Jazz band, while he was president of the United States.  I was able to attend San Francisco State University, and get my BA in music, but more importantly make friends that would change my life.  Friends that made me feel like I fit in.  I toured the US and Europe as a Roadie, mainly for Toad, but also other bands.  I got to play on National Television, National syndicated Radio, and perform in front of millions of people live.  I get to play music with my son!  These are just some of the adventures in music, there are so many more, and plenty that don’t involve music.  So I would have to be a fool to not be grateful for the life I have lived, and continue to live.  As I told all this to Zane, he actually started crying.  He was so overwhelmed by my gratitude for the life I have, because sometimes all he sees is the daily battles of life with an autistic child.  He sees the ugly bruises on my body, and thinks I must be suffering so much.  

I will admit, sometimes it gets rough.  There are days where I am running on way too little sleep, and I am being pushed well beyond my patients level.  But even on those days,  I am still so grateful.  There is always something to be grateful for.  Every night when I write in my journal, the first thing I write is “I am so grateful for all the things I have in life.  Today I am grateful for…”  My philosophy for life, is live in reality.  It seems so simple.  If I live in reality, I am forced to realize, my life is pretty damn awesome!  The one thing I hope I can instill in Zane is gratitude.  If he learns to be grateful, then everything else will fall into place.  Being grateful, forces us to look reality in the face, and appreciate all of it.  The good the bad, and the ugly.  It is all so special, because it means we are alive!

"Is There Anyone Out There"

I had a request to write on a specific subject.  I actually think it is a great idea for a blog.  I have been turning the idea over in my head for quite some time now, wondering how to approach this particular subject.  I could easily see myself going off on so many tangents, that it turns into a novel, rather than a blog.  The idea of breaking it up has occurred to me, but if I do that, do I write the whole thing first? or just fly by the seat of my pants and plunge into it, with no end in sight?  One part of me wants to tell it in a bunch of stories, but then it kind of loses the continuity.  By now most of you are probably saying just shut up, and write it.  Okay, “and here we go…”

Holden was born on May the 3rd, 2005.  From the beginning everything about Holden was easier than Zane.  His birth seemed much more routine than Zanes had by far.  He was a lot quieter baby than Zane was.  Zane had Pyloric Stenosis as a baby, which basically means he barfs up everything he eats, until he gets the condition fixed.  As new parents, people didn’t really believe us, that anything was wrong with Zane.  People would say, “All babies spit up”.  Okay, fair enough, but Zane was barfing, puking, up-chucking, throwing-up, going into turbo reverse, selling Buicks to a guy named Ralph, NOT spitting up.  Eventually people started to witness Zane the amazing human regurgitation machine in action, and these same people who were so quick to point out that all kids spit up, where now telling us to let them know if his head spun all the way around.  After some trials, and miss diagnoses, Zane was finally properly diagnosed, and had surgery at the ripe old age of 6 weeks old.  Needless to say, Zane was not very happy pre-surgery, and his first few weeks of life were quite a test for his mother and I.  

So along comes this second baby, four years later (gee I wonder why we waited so long).  He slept better, ate great, fussed WAY less.  We thought “wow, this is what it’s like to have a normal kid”.  I guess I don’t need to explain just how wrong we were.  Holden continued to progress, and make some great milestones in terms of his physical ability.  He crawled early, was standing early, and was walking by 10 months.  We were quite pleased with his progress.  There began to be some other signs though.  He did not coo as much as Zane had. When crawling around on the floor, he would pick things up, and stare at them for the longest time, where Zane would just stuff it in his mouth and move on.  I really thought we should have named Zane Hoover, instead of Zane. Also Holden would take off his diaper, as soon as he wet it.  We thought, “wow, he is going to be so easy to potty train.”  As it turns out, he did potty train earlier and easier than Zane, but he would also use his excrement as bathroom chalk.  I began to feel like there was a disconnect with him too.  I would play games like “where is daddies nose?” with him, with little result. He wouldn’t respond to his name, or make much eye contact.  This was at about one years old.  His mother and I had both worked with developmentally disabled kids, his mother WAY more than myself.  Autism was a well known term in our house.  I began to ask his mom if she thought he might be on the spectrum.  She said I was comparing him to Zane too much, and that kids progress at different speeds.  I didn’t exactly disagree with this concept, but it was more than developement.  It was a lack of connection to those around him.  He also wasn’t developing language.  Again, his mom explained that second children often speak later than the first, because the first won’t shut up long enough for the second to say anything.  Zane certainly fit this profile well! Still, I couldn’t get rid of the feeling that there was more to it.  

Holden learned to potty train at two years old, but still language was almost non-existent.  He had freakish upper body strength even as a baby.  He would push off with his arms while you were holding him, and you literally had to catch him, or he would push himself right off of you.  As a two year old he could pull himself up onto a counters and furniture, with just his arms.  By three he was able to climb a six foot chain link fence into the pool area, where he would proceed to jump in the pool fully clothed. By four he was making it over a regular six foot fence,  yet still language was nill.  By this time his mother was also in agreement that something was up.  We enrolled him in preschool at three, and discovered that he was galaxies behind his peers.  The preschool said his language (and inability to focus on anything) would prohibit him from being able to remain in that class, and recommended first five to us.  We took him to first five, and they initially thought he was just speech delayed, but after a few sessions, and one frazzled speech teacher, it was clear that that was not the problem.  This began the battery of tests, and interviews, and assessments, by every specialist you can think of, that ended with Regional Center diagnosing him with autism at four years old.

The whole process of having your child assessed is such a difficult one.  As parents with kids on the spectrum find, in the beginning, you want to believe with all of your heart, that they will find he is really not that far behind, and everything will be fine.  A few years into being a parent with a child on the spectrum, you want him to perform horribly on assessments, because that means more services.  I have written about this before, and could probably drag you all through those memories, but I think we accomplished what was asked of me, in terms of writing on a specific subject.  I will say this, if you think your child might be on the spectrum, even if it’s just a gut instinct, run with it.  The earlier you discover there is a problem, the more that can be done to help EVERYBODY involved.  If you have no one to go to, contact me!  You can contact me through my non-profit at www.artistsforautismawarness.com, I will personally respond to you, and answer your questions.  Ask anybody who knows me, I will write you, text you, call you, whatever you want!  No parent should feel alone in this!

I Have to make a quick note. The picture below is one of my all time favorite pictures of Holden and me. I use it every chance I can. I figured since this blog is about Holden's first few years, this picture works!

"I'm Free"

Another summer has come and gone.  Holden and Zane are both back in school today.  Summer is a time of choices for parents.  How much do we make our children work? How much do we allow them to play? What will their bedtimes be?  etc…. When you have a child on the spectrum, summer presents a whole different challenge.  First of all no two kids are alike, and that is so true of autistic children as well.  There is a saying in the ASD (Autism Spectrum Disorder) community: “If you’ve met one child with autism, then you have met one child with autism.”  So I don’t want to generalize here, but at the same time, there are certainly certain characteristics that not only represent ASD, but actually are used to diagnose ASD.  One of them is a strong need for structure, and the other is an inflexibility to change and transition.  These are very common traits among ASD people.  So summer presents quite a challenge for parents of kids on the Spectrum.  Lets face it ALL kids like structure, but the fallout isn’t quite as bad with neurotypical kids.  It becomes the parents or caregivers job to try and fill in the gap of that structure.  Holden went from having school everyday from 8:15am till 2:50pm and then “in home therapy” from 3:30pm till 5:15pm.  So a huge chunk of his day was structure.  As I previously stated, the first week of summer, Holden’s therapist was out with an injury, so he went to NOTHING!!!!!!!  I tried to fill the gap as much as possible, but Holden didn’t do well at all.  That was such a huge change.  When summer school started it helped a little, then his therapist came back towards the end of summer school.  However, by that time, damage had been done.  He had backslid a whole lot.  There is always a backslide at the beginning of summer, then we work our butts off, get in a great rhythm, really start making progress, then the summer ends, and there is another backslide at the beginning of the school year.  If you think this is frustrating, you are right.  We reach all time lows in the summer, and work our way out of this deep back slide (this years exacerbated by previously mentioned incidents) claw our way back to some slight resemblance of where we were, and then we climb forward.  This isn’t like climbing a ladder, or walking up a hill, this is Everest! This is ice boots, ropes, a pick, and progress of a few inches an hour, in air with no oxygen in it.  But we bunker down, we tie on our safety ropes, we harden ourselves to the climate, and we celebrate each inch we make of progress.  All the while knowing we are going to slide down half or more of this insane climb we are making.  Yet this is the gig.  This is what we do.  This is how we help our children through the summer.  

Personally every year I dread it.  I feel bad for all that have to witness it.  Zane has had to witness every single one of Holden’s summers, and I feel bad that he has too.  There are tools I use to help cope.  I journal everyday, I go for jogs, read, write, play music, all while Holden is asleep.  When he is awake… I attend him… Non stop… All day long!  You can’t relax around Holden, the minute you do, he is lighting something on fire, running out the front door, trying to grab a knife, throwing his iPad across the room, trying to punch a window our, flinging my personal belongings across the room, tearing down curtains, pulling on the dogs ears, eating his boogers, playing with his saliva, walking on the edge of the trampoline, outside the net, pouring dirt on his head, biting, kicking and pinching me… well you get the idea :).  

So when school starts, like today, we feel like we are Atlas, and somebody just took the world off of our shoulders.  Like we can breathe for a second, like we can relax for a second, like we can actually go to the bathroom and not be on high alert.  Take a long shower.  I could tell you some pretty harsh stories about our summer, but that isn’t what it’s about.  Those moments are a byproduct of a bigger picture.  What is really important, is that we made it through another summer, in which we made it past the back slide, and made progress.  We can look back and see every inch we climbed, and know that we came out above our starting point at the beginning of summer.  I know there will be a backslide over the next few weeks, but that backslide will slide down to a point higher than the end of last school year.  The work never ends, and sometimes it feels like one step up and two steps back, but we are making progress damn it!  We all have the scars from this great climb, but they were all worth it in the end.  So for now, as the kids are in school… “I’m Free” “And Freedom Tastes of Reality”.