"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.