What's the Plan Stan?

I have mentioned this in past posts, and debated in my mind several times whether I should write a post about a particular topic.  I believe the time has come to tackle this behemoth of a subject, the IEP.  Of all the things I have had to learn to deal with, having an autistic child, this is by far the most important.  IEP stands for Individual Educational Plan.  When we send our children to school, they all have an educational plan that the State has set forth for public school.  Each state is different, but within the state, you can bet that Yreka Californina’s 4th grade kids are basically doing the same stuff in school, as the kids in Chula Vista California.  For those unfamiliar with Californian Geography, those are opposite ends of the state.  Certainly there are better and worse teachers, and more and less involved communities, and richer and poorer districts.  All of these things affect the education a child receives, but the idea is they all receive the same basic stuff.  Holden has his own Educational Plan, and it is determined by his teacher, speech pathologist, occupational therapist, school psychologist, general education teacher that Holden spends some time with, doing general ed, and little ole me.  There is always a person at these meetings (at least in my case) who is looking out for the school purse.  They want Holden to be an inexpensive child.  It is my job, to fight my proverbial ass off to get Holden everything he needs to get the best education he can.  The most important thing I need to be, is informed.  Informed of the law, informed of the services, and informed of how the services pertain to Holden.  I can’t just walk in the room, and say “I think Holden needs Assistive Technology” and expect them to just give it to me.  I know, I tried the first time, when another parent suggested it.  The administrator in charge of not spending money, immediately wanted to know why I wanted that, and proceeded to tell me how AT didn’t apply to Holden’s case.  Uninformed at the time, I accepted her long technical reason behind his not needing it.  Then I spent the next few months reading up on AT, how the law deals with it, what it is, who should have it.  It turns out that like a lot of other things, the law is very open and vague, so that it can reach as many kids as possible, BUT if you don’t know how to sell it for your child, it’s also easy to show how the child doesn’t need it.  This year Holden is being evaluated for AT, I have already spoken to the evaluator, and she is confident that Holden would benefit from it, and looks forward to working with Holden this year.  Nothing is certain, and I will still have to prove his need for it, but now the person who’s job depends on kids requiring AT will be fight in my corner, to add another student to her list of kids requiring AT services.  

These are the battles we fight for our kids.  The law is on their side, the educators are on their side, but the district is looking out for it’s purse, and when they have to spend money, their rectal sphincter gets tighter then a piccolo snare drum in a ska band.  The only tool we as parents have, is knowledge, and taking the time to acquire it.  There are also advocates as well, and I am fortunate to have someone in my corner in that capacity too!

Mr. Brown can MOOOVE SB946 into law! Can You?

Gov. Brown Can Mooooove SB 946 Into Law - Can You? Call GOVERNOR BROWN AT916.445.2841. Press 1 for English, 2 for Spanish. Then press 2 to leave a message or, even better if you can wait on the line (may take 5 min.), press 6 to speak with a live person. They are counting them one by one so don't just like this picture! MAKE THE CALL!

The Perfect Grilled Cheese Sandwich.

For a long time I have used an idiom of my own making.  I like to call it “The grilled Cheese Sandwich” idiom.  The idea behind it, is that there are a thousand ways to make a perfect grilled cheese sandwich.  Which way we choose to make it, doesn’t really matter, it’s obtaining the perfect grilled cheese sandwich for ourselves, that’s what really matters.  It is a concept I use for a lot of things, philosophy, religion, music, etc.  I don’t know how other parents name their children, but when it came time for us to name the boys, there was much debate.  We essentially started throwing names out to each other.  Some were immediately rejected, “Oh no, I knew I guy in high school named such and such, he was an a-hole.”  Then there was those that we both didn’t reject right away.  We knew gender both times, so that narrowed down the names as well.  Eventually we came up with a short list.  I believe a name can have a big impact on a persons life, “Freakonomics” dedicated an interesting chapter to that subject.  For me, it was the literary connection to both names that appealed, as well as the name it’s self of course.  I wasn’t going to name my kids Ernest, no matter how much I appreciate Hemingway's body of work.  So in my mind, Zane’s name came from Zane Grey, one of the most prolific authors of Spaghetti Westerns (http://en.wikipedia.org/wiki/Spaghetti_western), before there was even such a thing as a Spaghetti Western.  Honestly, I am not a huge fan of his work, but I like the name, and liked the literary connection.  Like wise for me, Holden is named after Holden Caulfield from J.D. Salinger's book “The Catcher in the Rye”.  This book has quite a lot of baggage to it, enough to support it’s own blog, from John Lennon’s Death, to it being the conspiracy theory bible (http://en.wikipedia.org/wiki/The_Catcher_in_the_Rye), and in my opinion isn’t J.D. Salinger's best book.  However, I really liked the name, and I absolutely love J.D.Salinger’s books, including “Catcher in the Rye”.  Never in my wildest dreams did I think the name would be the absolute perfect grilled cheese sandwich for Holden.  

Mr. Caulfield becomes disillusioned with life, and all the “phonies” in it.  His goal is to become the Catcher in the Rye, and keep kids from becoming corrupt, superficial people.  In the end he seemingly succumbs to the whole process, and essentially becomes a “phony” himself.  My Holden is the real deal.  There is nothing superficial, materialistic, or phony about him.  He loves unconditionally.  Things do not appeal to him, only people.  He doesn’t even watch television, preferring videos (Often the same videos, over and over again), and could care less what the newest,  coolest toy, trend, or clothes is.  He does not lie, in fact, I think he doesn’t even understand the concept.  He is very of the moment, at all times. He is very creative, in very unconventional ways.  The best part is, no matter how much he develops, and assimilates, these are the things that won’t change.

Holden is an incredibly happy child.  He loves to play, loves to be tickled, loves to hug.  Certainly he can have bad days, or get upset by things, but his over all demeanor is always happy.  Even when he is completely destroying a room, it is all for fun in his mind.  The hardest part is that his batteries never run out.  He is always looking for his next adventure.  Whether it’s pulling all the clothes out of the dresser, or taking every book out of the book shelf, or dumping out all the shoes, he does it all while smiling.  His needs are basic, and his enjoyment simple.  As I have stated before, he can be happy being pushed on the swing for long periods of time.  He loves to go for Holden style walks and hikes, loves to drive around in the car and loves to swim.  He loves to sing to himself, or with other people.  (I recently realized that Holden writes music.  He sings little melodies that he repeats.  For instance he made up a song that is just the word apple juice sung over and over again.  There is a distinct melody and phrasing of that melody, and it is not spontaneous anymore, he sings it at different times, exactly the same way.)  

I would love for Holden to not be autistic, for his sake, Zane’s sake, and my own.  However, where Holden Caulfield failed, My Holden succeeds in being The Catcher in the Rye, at least for his own sake, and mine, and possibly Zane’s.  I am so much less uptight then I used to be.  When Holden starts singing, or being loud in public, I join right in.  people are welcome to stare, I don’t care anymore, I used too!

Can you say O.C.D.? (part 2)

After reading “Can you say OCD?” a dear friend of mine expressed how she has a lot of those tendencies.  In reality, I think a lot of us do.  I am terrible!  I feel like Sean Penn’s character from “I am Sam”, a great movie by the way.  At work I am very “particular” about how I do things, and how things are laid out.  When things have a place, and they are not in their place, that can be quite disturbing to me.  All the hangers in my closet go the same direction, and if I can, I like the color of the hanger to match the garment (whack job right?).  I don’t go out of my way on this one, and as most of my wardrobe is black, it’s pretty easy anyway.  However, there are things that don’t bother me at all, like what color hanger I use on the boys clothes.  I can obsessively pick up after the boys all over the house, but hate cleaning the bathroom.  Holden is the same as me.  He can play in mud, and have dirty hands, without any need or desire to clean them.  Somethings have a spot for Holden, and some don’t.  So is Holden actually OCD? Am I? Is my friend?  I seriously doubt it.  They are just little quarks that we all have.  Zane used to have all kinds of things when he was little.  If he touched his left knee, he had to touch his right knee.  If he rubbed his right eye, then he had to rub the left eye.  He used to have this little giggle that randomly came out, and had nothing to do with anything funny happening.  He eventually grew out of all of those things.  I think myself, and all of those concerned with Holden’s well being, have him under such a microscope, that everything becomes an issue.  There is no question that Holden is autistic, but is he really A.D.H.D.? Zane’s doctor wanted to label Zane A.D.H.D. when he was in preschool.  Just last week Zane read an abridged kids version of  Mary Shelley’s “Frankenstein” in one day.  Abridged or not, it was still over one hundred pages, does that sound like the activities of an A.D.H.D. kid?  Holden is approaching the age where Zane really started to gain focus. He already demonstrates the ability to stay on certain tasks for prolonged amounts of time.  The risk with Holden is that he is under such a microscope, that people are wanting to medicate him already.  He is only six years old, hyper activity in a six year old doesn’t sound that unusual to me.  

Yes, Holden has some definite OCD tendencies, but then so do a lot of us.  Yes, Holden has trouble staying on task, and sitting still, but again, I know a lot of adults that fit that description, let alone kids.  Would either of these things be more then a side note on a report card if Holden were not autistic?  Deciding when to put the microscope away is a constant challenge of raising an autistic child.  Knowing when to enforce things that COULD be a behaviour, but might just be a six year old, being a six year old.  Would any of us do any better when placed under a microscope?  I can tell you right now, they might have a padded room waiting for me, if I were put under that scrutiny.  I was at Fry’s with the boys the other day, Holden is happily perched on my shoulders, singing to himself as he often does.  Zane is chatting away about all the things that go through his  brilliant midsized mind (can’t say little anymore, my baby boy is growing up).  Then we get in line, and I am surrounded by people.  All the conversations start blurring together,  with the music over the intercom, there are several different videos playing in the video section, and I am in a sonic hell.  I feel closed in on, with people accidentally bumping me, and I am acutely aware of every odder, good or bad.  I ask Zane if he can stop talking to me till we are outside, so I can focus on not having an anxiety attack, and running out of the place screaming, from what?  Sensory over load!  Autistic people are said to suffer from sensory over load.  Yes, Holden is autistic, and he will spend the rest of his life trying to over come this disability, but as for all the “with’s”, with ADHD, with OCD, I just don’t know! Maybe we need a control group,  any volunteers to be placed under the microscope for a while?  

What are you looking at?

Before I was married, had children, or any responsibility in life, I worked a part time job at a group home for Developmentally disabled kids.  We had three autistic kids, two with mental retardation as well, and one with downs syndrome.  I actually met my children’s mother working at this group home, she worked there full time.  We both used to talk about how autistic children were always the most amazing of the DD kids.  It was so amazing to watch them interact with the world.  I was already big into autism awareness long before Holden was born.  I guess it was one of life’s ironies that we both worked with DD kids, and in fact Holden’s mom still does this kind of care giving work.  There were times when I arrogantly felt like I knew what the whole autism experience was like.  I believed that I “understood” more then other people about the world of autism.  I can now tell you that I didn’t have a clue!

When I worked in the group home, we took the kids out on outings.  We have all come across these outings at the mall, the theatre, parks, etc.  As a care giver on an outing, you got used to the looks people gave the kids, especially the more severely disabled kids that stemmed constantly.  You got used to the family members who would visit, and have no idea how to deal with their own child, sibling, or grandchild.  Watching them look to us for help when something triggered a melt down.  A look of pain in their eyes, that they didn’t have the tools to associate with their own flesh and blood. I arrogantly thought I understood the pain they felt, while I mistook the embarrassment in there eyes, to be the embarrassment of not being able to deal with their own loved one, not embarrassment on their loved ones part.  I never even thought about what our clients did while they were at school, or the fact that they needed someone to advocate for them.  I never knew that there were such things as IEP’s, triennials, services, assessments, private therapies, and that regional centers did more then just inspect us way too infrequently.  

The reality of it, is that I didn’t know anything!  When you are on an outing with a group of DD kids for work, what you have to get over, is your own inhibitions about having so much attention drawn in your direction.  My thoughts in that role were of myself.  I felt that everyone was looking at us, and talking about us.  I felt that I was part of us, and that meant they were talking about me.  Over time, as a care giver you grow numb to the looks, the stares, the comments you over hear.  As a parent you never become numb to it! The pain in watching your child be so completely miss understood.  I live paycheck to paycheck.  I try to shop while the boys are in school, but when the paycheck comes, and the refrigerator is empty, I have to shop, even with the kids.   On one of these occasion when I was first dealing with being a single parent, Holden decided he had to have something, right as we walked into the store.  It was expensive, and I couldn’t afford it just to make him happy, so I told him no.  He began to melt down, right there in the store.  We were out of food, and I had no choice but to spend the next twenty minutes shopping with Holden having a full on melt down.  Poor Zane was uncomfortable with everyone watching us, and It was no fun for myself either.  The worst part was at check out, he was still screaming and crying, but now knowing we were leaving the store soon, he was really going off.  I was trying to self check, with Zane helping me as best he could, while holding a kicking and screaming Holden.  I think the worst looks were the people smiling, as if to say, I know how you feel, I have kids too.  Guess what, you don’t.  I know now that I could never understand what someone else goes through on any level, for any child, with or without disabilities.  I know that, because I know nobody can know what I felt that day.  As soon as Holden got in the car, he was fine.  Zane and I were completely emotionally drained, I was shaking all over, and was thinking there was no way I could keep doing this.  I felt, without a doubt, that I had just gotten as close to an emotional break down as I had ever been.  I can’t even begin to explain the feeling of being alone I felt that day.

Things are much different now.  I have learned so much, and we very seldom have those melt downs.  I am naturally someone who does not like attention drawn to myself, nor does Zane (negative attention anyway) , but we are both learning to deal with the attention that is drawn to us.  I have learned to ignore those who stare at the way I hold Holden’s wrist when we are out and about, because they have never had to run in the street after their son, while cars are heading right for him.  I don’t care how much I inconvenience people with my safety nets, because it is my child, not theirs, who’s life could literally depend on those safety nets I put up.  I won’t even go into the political aspects of the school district, at least not in this post.  The one thing that still pains me the most, is all the friends and family, that so willingly comment on how they don’t know how I do it, but never even try to get to know Holden.  If you don’t understand the disability, you can never know Holden, because you have to be able to see around, past, over, under, and every which way around the disability, to catch glimpses of Holden, and piece those glimpses together over time.  That’s what autism awareness, this blog, and all those advocating for autism is about, finding the children intertwined with this disability.  Unfortunately for Holden, and a hell of a lot of other kids and adults, all most people will ever see is the disability.  Like their slogan says “Autism SPEAKS, It’s time to listen.”

Where the hell are we? Holden?

Holden has always had the ability to blow my mind.  There are times when he does things, so incredibly normal, that I almost burst into tears.  They can be the simplest of things, like waking up in the middle of the night and calling for me. “Daddy?” how many times has Zane done that, and with a word, fall back to sleep immediately.  That is very typical for Zane, but Holden usually wakes up for hours at a time, when he wakes in the middle of the night. Once in a while, it is that soft “Daddy?” and I say “go back to sleep buddy” and he does.  Those are such great moments!

Then there are those moments that he knocks the socks off of everyone.  Holden is quite simply amazing on the computer.  Even Zane, who is the most competitive person I know, openly admits that Holden is way better on the computer then he is.  I had created password protected accounts for Zane and I, so that Holden wouldn’t mess with our stuff on the computer.  Well Holden liked the fact that I had created different Icons for us both, and that they were password protected.  So he asked me to create a password protected account for him.  I went into the accounts manager in the control panel, and I said, “Okay, Holden, I’m going to make your password ‘google’.”  I typed in google, and thank goodness I also typed in the password on the hint line.  I then asked him which icon he would like, he picked it.  I logged out, and had him log back in, he did it no problem, and that was that.  I didn’t explain anything I did, I just did it.  Later that day, he was on the computer in his brothers room, and he had created a pass word for his account, made it ‘google’ as well and picked the same icon.  All he had to do was see me do it once, and he had it down.  Now he not only goes in and creates accounts, with passwords and icons, but he goes into Zane and my accounts and changes the icons and passwords to suit him.  As I said, luckily, I put the password in the hint, because Holden always does that too.  Just yesterday I decided to write the “Seabiscut” post on the laptop outside.  I go to log in, and my password doesn’t work, so I click on the hint, and Holden has made the pass word ‘holden’.  He loves to create accounts with unique icons and names now.  He will always make one for himself, one for “Daddy” often one for “mom”, and then all kinds of things like “dell” “Hermie” (from Rudolph the red nose rain deer) and all kinds of other things. He kept using the number 710419, as both passwords and account names.  For the longest time I couldn’t figure out what the hell was the significance of this number.  Then one day I decided to pay for Holden’s lunch money on line, instead of with cash.  The school had provided me with an envelope with all of Holden’s information.  So I started to fill out the online application, and it asked for Holden’s lunch number, sure enough, his lunch number was 710419.  I have no idea how he knew that, or why he knew that, but he knew it.

Then one day, I decide to show Holden Google maps.  I pulled up our house, and showed him “Daddy’s house” and directed the map in street view up our street.  He then asks for 7-11, where we often get slurpees on Sundays.  So I bring up 7-11.  Next he asks me for LLL Reptile another of our frequent stops.  At this point Zane calls me, and I go help him with something.  I come back to check on Holden, and he says “Albertsons” and I go, “Okay buddy you want Albertsons” and I look down on the screen, and he has directed himself to Alberstons on his own.  As I watch him, he then directs the street view back to 7-11 and goes back to LLL Reptile, naming each place as he goes.  Holden now regularly gets on Google maps and virtually drives around town.  Sometimes he pics random places in the country and drives around.  He has a great memory for places, we can drive by the Little Ceasars that we sometimes get pizzas from, and he will start asking for pizza.  Sometimes after we have been driving around, I’ll head for home, and as soon as I turn down our street, he’ll say “No!”, and I'll ask  “You want to drive around more” and he will say “Yes”. They describe autistic people as being “In their own world.”  Well I have news for everyone, Holden is very much in THIS world.

Seabiscuit to the rescue

Quite often when we are out and about, Holden will choose to ride on my shoulders.  It is not unusual to see us walking around our neighborhood, hiking all around San Diego county, walking along the beach in Solana Beach, or shopping at Frys, Albertson’s, or even the Carlsbad outlet mall with Holden riding up there..  We get some pretty odd looks, and lots of comments when we hike this way.  Here I am trekking up a mountain with a 60 lb six year old on my shoulders.  I have even had hikers ask if they can have a ride. This actually has some advantages for me.  For one thing he is controlled, he can certainly climb down on his own, but I know when he is doing that.  It also keeps his hands out of reach of things, as he will get very grabby when we are in stores.  (Actually, once Holden and I were waiting for his bus in the morning, when a girl came jogging by with her dog.  Holden was on my shoulders, and he reached out and touched her face. Understandably she got very upset.  She swung around and started yelling every four letter word you could think of.  I tried to apologize, but before I could explain anything, that I was sorry, that Holden was autistic, she was gone.  I felt terrible and the whole thing stuck with me for a few weeks.  To my surprise, about three weeks later, we were waiting for the bus again, when someone stopped and started talking to me.  It was the same jogger and her dog.  She apologized for over reacting, and expressed that she had been attracted once, and was still haunted by that.  I told her there was nothing to apologize for, she certainly deserved her person space, and explained that Holden was autistic, and didn’t mean any harm.  She felt very bad, and looked on the verge of tears, but I assured her that she had every right to be upset, irrelevant of the circumstance.  She occasionally jogs by and says hi now!).   It is also exercise for me, and lets face it, as we get older, it is harder to keep our guts from growing, while our hair is receding.  There have been a remarkable number of detractors to his riding on my shoulders.  Some people think he is too old and too big for such things.  He also is unaware that he can potentially hurt me, and has in fact done so a few times. However, I enjoy the closeness.  I am very lucky that Holden is an autistic child that doesn’t mind physical contact, and is very affectionate.  I can’t imagine what it is like to have a child fall down and scrap his knee, and when you go to put your arms around him, and comfort him, he starts freaking out even more.  That would truly break my heart.  Holden loves to be tickled, held, carried, and freely gives kisses.

Holden will often ask to go for a walk.  One would think this means that he wants to get out, stretch his legs, and see the world.  Well, some of that is true.  His idea of a walk, is to get down the drive way, and almost past our property, then say “Shoulders”.  This is my cue to let him scramble up on my shoulders, and enjoy the rest of the walk with a view.  His mom once made a great observation: when Holden’s world is still, he is all over the place, but when Holden’s world is moving, he loves to go along for the ride.  So for the most part, he hangs out, pulling leaves off of trees and trying to taste them, but I try to grab them before he can.  He pulls my hair, sticks leaves in my hair, and sometimes rocks back and forth.  There is one thing he does that drives me crazy.  He will grab my head and turn it in the direction he wants me to walk.  To which I express loudly, “Don’t steer me!”  To which he says “This way” twisting my head in the direction he wants to go.  I feel like Seabiscuit.  One day for fathers day, he’ll give me those things to limit my field of view.