Posted by: littlez2008 | May 23, 2012

My Favorite Color on the Spectrum

Z and Z’s Mommy at Daddy’s work (where he makes stop motion animated stuff)

It’s been so long since I’ve written a post that I almost forgot how to sign in.  The features on WordPress have changed.  Maybe they’ve already changed a couple times.  But a lot of things have happened, and I wanted to get back to it.

Most importantly, what has happened is that my son was diagnosed on the autistic spectrum.  So far, we’ve heard high functioning autism and PDD NOS, but he also, according to one teacher, meets criteria for Asperger’s.  Bottom line:  stuff we thought was probably normal or okay is…well, let’s not say abnormal and not okay, let’s just say atypical, different.  Let’s just say it’s gonna be a bit of a slog in public school if we can’t teach the kid to work in groups, which seems to be the main issue.

Forgive me if I’m a bit out of practice.  Interestingly enough, the other major thing that happened this year was a complete and total change of jobs for me.  I could spend a bunch of time detailing it, but let’s try to bullet point it instead, so I can get back to Zack:

  • Budget cuts in the public school’s adult education division
  • Job as portfolio manager of apartment buildings–huge transition
  • Eventually real estate fascinates and engages me in a way few other things have, but I am working like the proverbial dog
  • With Zack’s diagnosis and my writing “career” taking off, I decide I need more time for being a mom and being a writer.

So now I’m a real estate agent.  It’s been three weeks.  I have not made a dime doing it.  I enjoy it.  I fortunately had a lot of savings from my time as a teacher, and also fortunately, my husband brings in money.  Um, sometimes.  Two parents in the entertainment industry is maybe not the best idea, but it’s the best idea we’ve got at the moment.

Making my own schedule is great.  I have an audition, I don’t have to sneak out.  I just go.  I tell everyone exactly why.  I show them a commercial of mine on YouTube.  They say good luck.  I need the morning off to finish a pilot, so I take the morning off to finish a pilot.  I don’t need to call in sick and feel guilty.  I wish I were the kind of person who didn’t feel guilty, but I’m saddled with an intense work ethic.  I’m the kind of person everyone is so grateful to have on the job, the kind of person who can do the work of two other people without complaining–and unfortunately the kind of person who does the work at the expense of finishing the pilot.

But no more!  After I got a manager, I realized if I was going to make this writing thing work, if I was even going to have a shot at it, I would have to actually DO it.  As in make time for it.

And if I was going to have a shot at this mom thing, at parenting a kid with special needs, who has to go to occupational therapy and special preschool and special social skills classes–well, I was going to have to stop working 11 hours a day and being on call for emergency plumbing issues all night as well.  I used to panic if my cell phone wasn’t on my night table, and with good reason.  I was called out of bed for emergencies numerous times while managing property.  Weirdly enough,I loved it.  I guess I love to feel needed and important, but I’m needed at home now.  So yesterday, we went to Zack’s first social skills class, and I just left the office.  I didn’t need to fill out a form.  I didn’t need to tell anyone where I was going.

See, when they’re not actually paying you, you have a lot more freedom…until the money runs out.  But let’s hope I sell a house or a script soon.  Either one would be fine.

So that’s me.  Back to Zack, here is what happened.  I hope that parents somewhere find this and that it helps someone.  As a skeptic parent blogger, I’ve been remiss in not giving the play by play.  Well, not remiss.  I just didn’t have time.  But here’s a little catchup.

For the sake of clarity, there have been four preschools.  In order:

  1. Beautiful facility that  more or less expelled Zack for aggression.  Let’s call this the betrayal preschool.
  2. Weird Montessori school that wasn’t really a Montessori school.
  3. Nice preschool that was too academic and group oriented for a kid like Zack, and where he started to be miserable every day.  Let’s call this one performing monkey school.
  4. Current crunchy-hippie, kid directed, parent involved, developmental preschool, where he is flourishing (and the place where I have met the most parents that I actually enjoy talking to).

I blogged on here about Zack’s problems with his first preschool.  They kept sending him home for “aggressive” behavior.  We never saw the aggressive behavior at home. We moved him to a Montessori school, where he cried for a week straight.  For a kid who has a fit if you try to make him use the playground swing in the “wrong” direction, changing preschools like that must have been an utter trauma.  It was terrible for our whole family.  We tried performing monkey school, where Zack managed to calm down and have a good time.  No more aggression, but the teacher did notice that he did not play with other kids, and she said his eye contact was off.  He also couldn’t focus at all in groups.  Okay, we thought, this is preschool number three, so maybe we should finally get him assessed.  We don’t see much that’s wrong…except it is really tough to have a conversation with Zack.  He has a fantastic vocabulary…but you can’t really go back and forth with him about one topic for too long.

My friends’ Facebook posts increasingly started to make me feel like something was maybe not right.  Kids younger than Zack would say stuff Zack could never say.  Stuff about the abstract, about time, about what they wanted to be when they grew up.  Those concepts are just not in his repertoire.  He was the first to learn the ABCs, the first to tell the difference between a hexagon and a pentagon (well, I exaggerate–that’s still a little tough), but try and engage him about what happened during his day, and it’s a no go.  He will go back to what’s in his hand, what’s outside the window–the concrete.  Or he’ll talk about something way off topic, usually something he’s memorized, phrases he’s heard on TV.  He would recite dialogue from video he’d seen of himself at the zoo.  It was his way of talking about that fun day at the zoo.

So we had him assessed at three places, and all three put him on the spectrum.  Why three places?  The first was a private clinic at Children’s Hospital in Los Angeles.  Since our insurance paid, we went.  There were one way mirrors, cameras, a team of specialists.  They were so thorough and so smart.  Anyone who has had experience with Children’s Hospital knows they are amazing.  They insisted that play based, developmental preschool would be more appropriate for Zack, so we moved him to his current crunchy preschool, which we all love.

Then, armed with that clinic’s thorough report, we went through the Regional Center and LA Unified School District to get all our free services for Zack.

So for anyone who suspects something is “off”, here is what happens.  Your kid will play with puzzles and answer questions and point to pictures.  Our kid “flunked” pretend play.  He couldn’t interact about a birthday party with a doll.  Since the evals, I’ve been working with him on this.  We got him a play kitchen, and he actually does interact and play with it.  He makes tea with milk and sugar for me–every single time.  Any new activity for him will quickly become scripted, and going off the script provokes anxiety.  When we have light saber fights, if we move to a different part of the room or say a different line, Zack has  a fit.  He thinks he’s George Lucas, apparently.  He directs the scene.  We’ve been instructed to throw him curve balls in an attempt to break this rigidity, or at least to soften it.  And it’s tough, because we are such accommodating parents that we will let him swing the same direction every time at the playground (until recently), and we indulge the exacting blocking of the Star Wars scenes.  But when the fits start, we’ve been advised to hold our ground and to repeat the mantra that, “Sometimes we can play a different way.”

I’m not doing a great job detailing the process.  So your kid gets a bunch of tests, and then you wait.  We started all our evaluation calls back in September, 2011.  We just got our first free class yesterday, May 22nd, 2012.  The private clinic didn’t offer any classes.  They just told us to go to the state sponsored ones to get services.  The state ones are slow.  So slow.  It makes me wish we’d started earlier.

Then finally, when the authorizations have been signed, and then mailed to you to be signed again, and then sent from one agency to another, finally you get your classes.

If you get an Individualized Education Plan from the school district, you go through a bunch of evaluations, and then you meet with a team of people who explain the evaluations to you, and then you set goals for your kid, and then you get some options for services.  They gave Zack a speech goal of 2-3 turns of conversation, on topic, several times a week.  I asked how much a “typical” kid could converse on topic.  They said maybe 4-5 turns, maybe more.  So I insisted we increase Zack’s goal to that.  The coordinator said, “That’s a LOT for him.”  And I said, “He’s not gonna know if he doesn’t meet his goal.  Let’s aim high.  Let’s see if we can do it.”

Everything else, I left alone.  In the fall, Zack will start a special preschool from 8 a.m. to 11 a.m., where there are typical kids mixed with high functioning spectrum kids, and where the teachers are supposedly experts in helping kids interact with each other, use language to learn to take turns, stay on topic, etc.

In the meantime, before this school year ends, Zack will get a little bit of occupational therapy at a local elementary school, and he will also get a visit from a teacher at his current preschool, who will coach him on interactions and talk to his teachers and give advice.  Recently, the aggression has surfaced again, but just a little.  Let’s face it–if someone has a truck that you want, hitting is easier than talking, especially if back and forth conversation is really hard for you.

There are no services during the summer.  But with what we hope to learn by the end of June, we can continue coaching at home.

This fall, special preschool will be in the morning, but we will keep Zack in his current preschool for the afternoons.  It’s expensive, but we love it.  It’s completely kid directed and developmental.  We were advised by our IEP committee that while this is wonderful, it exactly works against the kind of “compliance” we will have to encourage in Zack if he is going to succeed in kindergarten.  I bristle at the word “compliance.”  I don’t want him to ever be compliant.  His refusal to participate at times is just so completely bad ass.  We have video of him at the performing monkey preschool during the Xmas Pageant, looking in to the audience and wailing.  He didn’t understand any of it.  Why am I up here, and Mommy and Daddy are watching down there?  I don’t want to sing.  I want to be with them.  The audience, the group of kids around him:  invisible.  He’s so immune to social dynamics.  But here’s the thing:  the pageant did kind of suck, and for us he was the best thing about it.

Our new, crunchy hippy school would never make kids perform like that.  Kids get to run wild and cover themselves with corn starch.  They get to choose their activities. They come home with green hands and paint in their hair.  There is no homework.  (Yes, at the performing monkey school, 3-year-olds had homework.)  Zack is happy at his school now.  He gets to do what he wants.  The group activities are minimal, but the teachers notice he has trouble with them.

In fact, seeing him in a group was what first prompted me to get the evals.  We took Zack to the local YMCA for swimming lessons.  He did okay the first class, but increasingly, after that, all he wanted to do was shout at me about playing with the rubber ducks.  We had done that one time at family swim hour, and he perseverated on it.  He didn’t want to do swim class.  He wanted to play with the ducks.  He wouldn’t listen to the teacher.  Finally we pulled him out of there.

Also the locker room terrified him.  Echo-y, loud noises are a bit of a nightmare for him.  The swimsuit spinny drying machine thing was the catalyst for total freak outs.

I asked his preschool teacher (this was performing monkey preschool), “How do you work with Zack in groups?  Because I see in his swim class he has trouble with it.”  She said, “We don’t.  He can’t do groups.  He plays alone.  And actually…I think it’s time you have him evaluated.”

It was a shock.  It was depressing.  And the evaluations were tough and hard to take.  The news was hard to hear.  But in the end, Zack should be okay with all the intervention and the therapy.  He’s still awfully, awfully cute.

And we got him private swim lessons, and now he can swim on his own.  Different approach, more money, more time, same result.  I’m hoping it will go down the same way with:  writing (tough for him), playing in groups (getting much better), and having a danged conversation.

So there it is, my rambly first post on parenting a kid with high functioning autism, or maybe PDD NOS, or even possibly Asperger’s.  We’re not 100% sure.  But look at that red hair.  No matter what you call it, he is my favorite color on the spectrum.

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Responses

  1. Thank you so much for your post on this. Our child is just now beginning the evaluations after he didn’t exactly pass the tests the pediatrician gave. This is a stressful time, but it is good to hear from someone else who has been through it, and come out the other side.

    My thanks,
    Liam

  2. And if I was going to have a shot at this mom thing, at parenting a kid with special needs, who has to go to occupational therapy and special preschool and special social skills classes–well, I was going to have to stop working 11 hours a day and being on call for emergency plumbing issues all night as well.

    Welcome to our world! You will find it confusing, frustrating and your vocabulary will expand. Also, you will find that you get to read more while in waiting rooms, something I did during the several years of my son’s intensive speech therapy (way before smart phones to surf the net).

    I also need to come back with some posts, but have been a bit busy with an issue mentioned here. My son literally left Minnesota with less heart (specifically the part almost blocking his mitral valve).

    I do know about swim lessons! For those like your son, check to see if your public swimming pool has “special population” swim lessons. They are individual lessons given at group lesson rate for kids like yours, and others like my son’s preschool classmate who had seizures that caused him to stop breathing. My younger son teaches those classes as part of his lifeguard job, and he does understand kids like yours because he grew up with his older brother (and he is the only one who can casually converse with my older son!).

    Also, my older son has reddish blond hair, and his beard is definitely red.

  3. By the way, the crunchy hippy preschool sounds wonderful. It looks like what a preschool should be. My younger kids went to very similar preschool, with no real academic goals. The goals were that they just learn to play with other kids, but without any pressure.

    One of the best thing I did for my oldest was to have him participate in regular kid activity. He play nerf soccer and took art classes at the community center. When he was in kindergarten he spent the morning in the special ed. room, and the afternoon in a regular ed. kindergarten. He was in a mainstream classroom starting in first grade.

  4. Hi, I am also a former teacher who lives in Los Angeles raising two little boys. My oldest has autism. I am surprised RC is not giving you services over the summer! I would love to invite you to a group on facebook for moms of kids on the spectrum. These parents are so knowledgeable and there is a lot of support there. Email and I can send you the link if you wish. Best to you and your family.

  5. Yes, RC is providing services over the summer, but LAUSD isn’t. We are applying for a one on one shadow for Zack from RC as well.


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