Why I Hate Homeschooling

Look.  Let’s be honest, I never wanted to homeschool.  I did it out of love because I didn’t want to subject the love of my life to any further stress or anxiety of being in the wrong placement in our inept school district.  I love this child dearly, deeply, with a love I have never known until he stirred in my tummy in 2009, But I HATE homeschooling.  Ok, hate is an awfully strong word.  (My mom always used to get mad when we used the word “hate.”) Maybe I don’t HATE hate it, but there are lots of things I don’t enjoy about homeschooling … and a handful of things I actually do enjoy about homeschooling. Maybe I just despise it, but I’m focusing on the things I hate right now.

REASONS WHY I HATE HOMESCHOOLING:

  1.  Not My Cup Of Tea: I’m not made for homeschooling (personality-wise.)  I’m too type-a, too stressed out, I’m not laid back enough.  I try, believe me, I try. I see my friends who homeschool — they are sooooo laid back, so easy-breezy, so ‘type-b’.  But me?  I’m a planner, and while I can be fun and say “let’s have a ditch day today” every once in a while, I’m constantly stressed out about what comes next. And I won’t let The Boy slack off more than once in a while because I know how important a routine is for him.  And if he thinks he can take a day off every Friday, he is expecting it every Friday!  So I try not to.  Weekends aren’t even fun for me.  By mid-day Sunday, I’m stressing out because I need a block of 3 hours to lesson plan for the following week.  A block of 3 hours ALONE.  The Husband considered this “me time.”  That makes me grind my teeth & want to give him a swift kick to the nuts.  Lesson planning is TIME CONSUMING and guess what I have very little of?  TIME!
  2. Time Consuming: Speaking of TIME & how little of it I have to prepare for what-comes-next, I now have pretty much ZERO “me time.”  (You should see my nails!  You should see my *once organized* closet, or any of the kitchen drawers!)  Why was my last blog post 9 months ago?  GUESS!  I was busy homeschooling!!  Who has time to blog at the end of the day.  I mean, homeschooling is like a full-time job on top of my already full-time job of being a stay-at-home-mom / boss-of-the-house!  If I could connect a wire from my brain to my laptop, I could blog around 11pm, because I have things to say, believe me … and they all come flooding into my head when it hits the pillow and I’m too exhausted to move, let alone blog!
  3. Not An Educator: What the hell am I doing?  I feel overwhelmed pretty much constantly because I have no clue what I’m doing.  I have a degree in Acting & Theatre Arts … and a second degree in English.  What don’t I have?  A Masters in Education.  So I struggle.  Seriously.  I have no clue as to what the hell I’m doing half the time. I mean, there’s no one place where you can go to find everything you need.  (Can someone please make this!?) I have to collect stuff from this book and that one, this website and that one, then I have to streamline all of the subjects so that it’s one cohesive over-arching theme … EVERY FREAKING WEEK!  And it has to be fun, interesting, engaging … and educational.  And really, some weeks I just can’t, I just don’t feel like doing it at all … It actually reminds me of my own plight with homework in high school, so I wing it, which I hate.  I’m not a wing-it kind of woman. Because when I wing it, I end up feeling like more of a failure.
  4. My Student Is An Aspie: The Boy, of course, isn’t a neuro-typical kid, so I can’t ever leave him to his own devices while we’re doing school – he needs constant behavior management & supervision.  I have stickers, mini cookies, jellybeans, fuzzies & owls.  He completes a small part of one task = cookie; completes more = cookie & sticker; completes a segment or a lesson = fuzzy & owl. Immediate rewards, long-term rewards, short-term rewards, yes, we have them all!!  Laptop, iPad, worksheets, white boards?  Yes, yes, yes, and yes.  Maybe if he were a neuro-typical child, it would be easier.  Maybe if I weren’t his mom it would be easier.  I don’t know.  He fights with me on every.little.thing, most of the time, and views himself as my “equal.”  He wants to call the shots, he wants to be the teacher.  And I do let him have a say about curriculum and schedule … to some extent.  But holy moly.  I feel like I’ve survived a battle most days.  Honestly, it’s exhausting.  I have to think at least 3 steps ahead of him all the time!  I prepare for every moment of our day, school and beyond. .sigh. Did I mention that it’s exhausting?
  5. Melt-downs:  Have I mentioned my kid has epic 45-minute, physical / verbal / emotional violent meltdowns?  Have I told you that these meltdowns are directed at me?  Have I explained that it’s mentally & physically exhausting to deal with a 5-year-old Aspie’s aggressive attack at 9:16 in the morning?  It’s intense.  It makes you want start chugging wine at 9:42am.  It makes you want to put his shoes & socks on, and drag him down to the shitty school I pulled him out of last December, and say “good luck, dude!  Be someone else’s problem!”  But you know I won’t do that because I love him too much, and I won’t ever give up on him.  But it isn’t always easy.

To be fair … I have to be fair because I was born on the cusp of Libra & fairness is a big deal to me.  I have to be fair, so I have to tell you that a) I’m totally bleeding right now & just in a bitchy, hormonal mood (but my reasons for hating homeschooling are valid!) and; b) there are some things I legitimately like about homeschooling, (which is what I focus on when I want to throw the towel, drive to a winery in Santa Barbara and just be done.)

OK, OK, REASONS I ACTUALLY ENJOY HOMESCHOOLING:

  1.  I Never Miss A Thing: I love that I get to have him here, around me, all of the time.  We (usually) have a lot of fun together – he is so damn smart, and so much fun. I love knowing what he is doing, what he is learning, who he is listening to … I love being the BOSS of what he is doing, learning and listening to!  He is no longer influenced by some unknown, happy-meal-loving, junk-food-eating, crap-manners kid with absolutely no personal hygiene.
  2. Our Day Is Our Own: There is no one lording over us with a schedule and a common core curriculum, or standardized tests, (which I do NOT believe in!)  Or homework, (which I also do not believe in … especially for a child his age.) We can go down rabbit holes of subjects that are of real interest … like, when I started teaching science this year, I opened the book and it started with earth science, which The Boy was like “meh.” Ok, clouds, yay.  But that wasn’t what he was really excited about.  He was really excited about sea animals.  He was totally into Octonauts at the beginning of the year, and so I said to myself, “hmm … let’s just close the book and make up our own curriculum for science.”  I printed out a bunch of blank “animal reports” and each week we picked a different sea animal to study & write a report about.  We went to the aquarium, we watched videos on youtube.  We went to the library & researched a different sea animal each week … He was so engaged in our science studies.  We did our own thing.  You can’t do that in any other school besides your own.
  3. Fundraisers:  THERE ARE NONE!  Enough said : )
  4. Parent-Teacher Conferences:  Oh, they happen … with me, my hubby and a glass of wine : )  Waaaay more fun than the alternative!
  5. Creativity & Playfulness:  I love that I’m able to foster a creative environment where we are playful & silly … where we use story-telling and silly voices to educate.  That is important to me & no way in the world would a typical school district create a classroom designed to stimulate the innate creativity in a child and really figure out how that child’s learning style can be utilized.

See … when I look at the (2nd) list above, I think – yeah, this is ok, i can do this homeschooling thing!  I get all pumped up.  Then Sunday comes and I start stressing about the week.  But then I take 3 hours and get ready.  Then Monday comes, and it’s a struggle to get him to engage and focus, and I think “this sucks.”  It’s like 6 of 1, half dozen of another.  It’s a conundrum.  I’m so torn.

And then I think about The Boy … and I think about what all of the professional psychologists have said to us … He should be in a small classroom environment with typical children (or children who are JUST like him.)  And I know how social he is … how much he loves to have friends and be around other kids.  I tried to find homeschooling co-ops, but there are no appropriate groups that are near us that would work for our schedule.

So I went to see a special education attorney (finally) and she thinks I have a case against the district & long story short, I’m suing the school district on behalf of The Boy to get the services I believe he deserves: A small classroom setting with typical peers & possibly a therapeutic companion for a (hopefully) short-term time period, to get adjusted.

In the meantime, we’re still homeschooling : ) and I’m still going back and forth with my love / hate relationship with homeschooling.  But I want you mamas (and dads ) to know that it is totally ok to not love homeschooling, to think you suck at it (you probably do not!) and to doubt your decisions.  Look … at the end of the day – our kids need US.  And they will learn the stuff they need to, but developing the “whole child” is more important than having them be able to recite facts back to you. Don’t stress out.  Try and have fun (I need to take my own advice!)  Just do the best you can because that’s really all you CAN do!

Each week I set a goal & when The Boy gets 20 fuzzies, he can pick from the grab bag!

Each week I set a goal & when The Boy gets 20 fuzzies, he can pick from the grab bag!

The fuzzies!

The fuzzies!

Giving Up On The IEP & Putting Faith In Me

overcomeWell, we’ve been in school for almost 3 months now, and I’ve already had to call an IEP.  This is the wrong placement, but it’s the best one we can get right now, all things considered.  Not only is The Boy on the spectrum, (High-Functioning Autism / Aspergers,) but he’s also very intelligent & tests way above average, so that’s called a “Twice Exceptional” “2e” or “Twice Gifted” child.

He’s only 5, so he’s technically in Transitional Kindergarten (TK) because he has a late September birthday, and that’s the law here – kids have to be 5 by September 1st to enter Kindergarten no matter your intellectual ability.  He is currently placed in a Core Autism classroom with 10 boys (all boys) ranging in severity, (the majority are non-verbal, low-functioning kids.)  The ages of the kids range from 5, (The Boy is the youngest one in class,) to age 8.  TK – 2nd grade.  Wrong placement for him because of the severity of the behaviors in his class, but the best available option because he is able to work above his grade level with the 1st & 2nd graders.  In his current IEP, The Boy is supposed to push out to general-ed, but for what?  He would tear a “typical” “gen-ed classroom” apart in about 30 seconds if left to his own devices.  He’s way beyond “A makes the ‘aaaaahhh’ sound.”  He’s reading, spelling, doing math, learning geography, etc.

He needs a one-to-one aide, someone who can be with him in a typical (but advanced) classroom … not forever, but for the time being until he can learn to self-regulate.  He’s over-stimualated & easily influenced by these low-functioning kids.  He’s picking up behaviors and trying them on for size.  Behaviors that had taken a long time to eradicate are now resurfacing.  He needs to be around his more typical, higher-functioning, bright peers.  I have told the school district this for over a year now, and my assertions fall on deaf ears.  I know what they hear when I ask them for an aide, they hear the sound of money being pried out of their sweaty, bureaucratic hands.  It costs approximately $100,000 a year to have an aide for a child.  It’s no wonder they have denied me time and again.

This was my 4th IEP and I’m pretty much a pro at these now.  I read several very helpful, (and very dense,) special education books from “Wrights Law.” I have my notebooks all properly prepared, each paper at the ready in case I need to reference something.  I have my secret advisors within the district, who, (of course,) shall forever remain nameless.  I have my outline of what I’m going to discuss placed in front of me, I’m dressed professionally, and I am ready to confront them, even though “we’re all on the same team.”And, sorry, but I don’t buy that for a second.  Sure, they all say they have The Boy’s best interest at heart. And I believe that they want to believe that, but at the end of the day I’m not the person signing their paycheck.  Their loyalty lies with the school district.

We’re at an impasse here.  They basically told me that they don’t think he needs an aide, and to even get to the point where they will even consider an aide, they would have to do (another) Functional Behavior Assessment, (FBA.) Which is a time consuming process of collecting data on The Boy – what triggers behaviors, and why. So, let’s just assume they do this FBA & determine he IS eligible for an aide, the placement of an aide would not even happen until the end of this school year.  And that’s IF they decide he qualifies, which I’m here to tell you that will not ever happen without me taking them to due process.  They’re just stalling for time, trying to wear me down & honestly, I can’t deny that it’s working.  I’m tired of dealing with them!

See where I’m going with this?  How much longer do I give them to get it right?  How much longer does The Boy have to suffer from their lackadaisical, bureaucratic gridlock?  I don’t have the resources to fight them – we cannot really afford to hire a high-powered attorney & sue them, (even though I threaten that time and again.) And even if we did – who is to say that having an aide would even solve the problems he is facing?  He is riddled with anxiety that manifests itself in various ways – physical outbursts, nail-biting, aggression toward himself and others.

I can see the toll that daily “failures” are taking on The Boy.  His teacher uses a star-sheet for the day where the kids have to earn a certain number of stars for making safe choices, respecting others, participating in group activities, completing assignments, etc., and if they earn a specific number of stars, they are rewarded by being allowed to choose a treat from the treasure box.  After 60 days of school, he has had 8 treasure box days where he’s earned enough stars to be rewarded.  EIGHT.  Out of SIXTY.  Tell me that isn’t destroying his self-esteem.

I can’t fault him for not having good days – he doesn’t have the tools to be successful!  I mean, of course I will reprimand him for acting out physically toward his teachers or peers – I think he is smart enough to know how to control his impulsivity.  But how can I punish him when a big part of it isn’t his fault?  This is really wearing all of us down: The Boy, The Husband & Me.

I’ve been pondering homeschooling for a little while now – the past few months it’s been rolling around the old brain cage, as sort of a last resort option.  But I’ve been thinking about it more and more lately.  A few friends of mine home school their (typical) kids, but they seem much more cut out for the challenge – both are a lot more laid back than I am, and make it look easier than it probably is.

Well, as I was driving this weekend, (alone,) I was flipping through satellite radio, and on one of the channels, a woman was talking about homeschooling.  And, it just really struck me, that, with all the blood, tears and sweat I’ve put into fighting the school district to try and get The Boy the tools he needs to be successful in school, I’m still not even close to accomplishing this!  And all the time I spend fretting about Common Core & IEP’s, I could be teaching him myself instead of trying to find ways to convince the district to try my ideas.  steve_jobs_quote_Think_Different

Instead of fighting them, why not throw the towel in & flip the script?  Why not remove the obstacle (The School District) & empower myself to be in control of the way my child is educated?  Educated in my comfortable, loving, supportive home environment, where he could focus & receive 100% of my attention.  And, bonus: I could kick Common Core to the curb.  It’s not that I don’t have the fight left in me to battle the school district, but for what?  And for how long until I have to do it again?  It just struck me so deeply that I may be fighting the wrong battle, I may be spinning my wheels, I may be wasting my energy.  And that maybe homeschooling is something I need to seriously consider.

I sat on this idea for a day.  I didn’t tell anyone because I thought maybe it was a fleeting feeling, maybe it was a hormonal thing, maybe I was fired up by the talk radio segment I had heard.  I mean, I was on my period – maybe this wild hair would work its way back out of  me, but instead the thought of homeschooling kept gnawing at me.

Without alerting him to my objective, I started a casual conversation with The Boy about school.  Lately, he has been complaining that he doesn’t want to go … he doesn’t like that they do the same thing every day, he feels overwhelmed with all of the distractions in class, he wishes it was just him alone with me as his teacher.  I explained that I wasn’t his teacher, and he relented and said, then he would be better off alone with his 5 teachers.  So, wow, he said it, he wants to be homeschooled.  That was another a-ha moment.

Then, I went to The Husband.  He’s heard me talk about the possibility of homeschooling before, but between him and my mom, they pretty much dismissed it as a passing thought, brought about by my frustration with the school district.  They thoughtfully pointed out that homeschooling would be really, really tough & I would be exhausted by the end of the day, probably not up for the task … After all, dealing with a very willful Aspie is really hard to do all day.

The thought is actually frightening, I’ll be honest here.  I have no idea what I’m doing, true. And selfishly, where’s my “me time” going to go? I can kiss coffee with the girls good-bye.  Our entire lives will have to change – our routines, our priorities.  I’m petrified, nervous, overwhelmed … and excited.  I feel like this is the beginning of an amazing adventure & I can chart the course.  I feel like this could be really great.  Or be really awful.

outsidethbox

But, don’t I owe it to him to try a different approach?  Even if it is going to be challenging for me?  He is my only child & he deserves this.  I cannot think of anything more important than the well-being, overall health and education of my child. There is no job, no hobby, no community service that I can think of that inspires my passion more than my only little boy.

I’ve been reading some stories from parents who waited too long, and now in a crisis are forced to realize, all too late, that their child would be better off being educated at home.  I don’t want to wait until it becomes a tragedy.  I want to be that intelligent woman who sees the writing on the wall early enough on, and says, “let’s do this.”  If it doesn’t work, then it doesn’t work and we will know that we gave it our best effort.  But if I don’t try it, it will continue to gnaw away at me, this feeling that we can do better.  Maybe it won’t be forever, maybe it’s only for a little while, and maybe it won’t work.  But shouldn’t I at least try?

Courage

Friends, mommies, homeschoolers, teachers, anyone who wants to chime in, please do!  I’m looking for input from those of you in the trenches.  Give me a shout out!  I need some words of wisdom & inspiration 🙂

Love, The Fairly Good Mother

 

Silent No More

photo credit: neuro-atypical.com

photo credit: neuro-atypical.com

No, I’m not going to be quiet about it anymore.  The Boy has Aspergers.  He’s an Aspie.  He has been diagnosed with High-Functioning Autism now because they no longer have Aspergers Syndrome listed in the DSM V.  Hearing this last Friday was not “news,” but I think I have finally accepted that this is our life.

Two years ago, I got the diagnosis of “Aspergers Syndrome” from a psychologist who contracts for the Los Angeles County Regional Center.  A psychologist who had met with me and The Boy for all of 2.5 hours.  Her diagnosis made sense to me, but at the same time I wanted to dismiss it because I felt like she just conveniently made that assumption based on The Husband’s family history.

Everyone that we had talked to leading up to that diagnosis had told us that The Boy was a “perplexing” case.  I was told that he may “outgrow” his diagnosis by the time he started Kindergarten, so I kinda believed it and kinda hoped they were right.

And so I didn’t tell too many people about The Boy’s Aspergers Syndrome.  Only close friends and family. And you, dear Reader. I kept quiet because I thought that this diagnosis was The Boy’s, and it was not for me to share with anyone beyond his immediate family until he came to an age where he could determine who he wanted to tell what to and when.  I didn’t want him being labeled.  I didn’t want him being judged.

That decision kept me isolated from my friends, and from the parents of his typical friends.  Even more isolated that his diagnosis had made us.  I kept quiet about it because I figured if he did indeed outgrow his diagnosis, I didn’t want people to be confused.  I didn’t want to have to explain.  I just wanted to work quietly on this without everyone knowing, and I think subconsciously I was hoping that the diagnosis would just disappear from our lives & fade away into the background; becoming something we would just say was a “phase” that he outgrew.

The fact is, this is our life, and it has been every day for the past two years.  Even if he does overcome some of the diagnosis, he will always be an Aspie – he will have his quirks & his mind doesn’t work like most everyone else’s.  So, this is our life.  This is his life.  This is perfectly fine.  It isn’t the way I had envisioned things when I was 8 months pregnant & reading baby books about “what to expect,” but that’s ok.  The lesson is: Expect The Unexpected.  And, make no mistake, I wouldn’t trade this for “typical” EVER.  I love The Boy just the way he is; he is perfect.  I only want him to have the tools he needs in life to have the best life he can – to be as happy and healthy … but this is our journey, and it’s an ever-changing one. There are no books to help guide us on our way.  Expect the unexpected.

I also kept quiet also because I felt like I wasn’t entitled to have the feelings I have had: confusion, frustration, isolation, exhaustion, sadness.  How could I complain when The Boy’s case is mild – look at him one moment & he seems like a typical child, but in another setting you might say there’s something off, but can’t put your finger on it.  He is extraordinarily verbal, loving, outgoing … not like some of the children I’ve met with severe autism who are non-verbal & have never given their mother a hug or kiss.  So how can I justify feeling anything other than gratitude for this?  I must be a shallow, horrible person to feel frustrated with our situation at times.  How would anyone even understand?  Surely my friends with typical kids wouldn’t be able to relate.  So I said nothing.  Until now.

Now I’ve changed my mind.  I’m not going to be quiet about this anymore.  I am allowed to feel how I feel & that may change from one day to the next.  Yes, of course I’m grateful that The Boy is high-functioning, that he is affectionate and playful, curious, intelligent, creative and engaging.  Yes, his case is “mild.”  And I tend to focus on his strengths rather than his weaknesses.  But it’s not always easy.  Every day is different; some days are great, some are challenging.  And I didn’t even realize how much I work with him until a friend visiting from out of town pointed it out to me.  But that’s my job; he is my heart & I am his voice.

And I’m really going all out with my vocalization.  After two years of searching for my “tribe,” other moms who are parenting an Aspie kid around The Boy’s age, I have yet to find an active group near where we live, so I just went ahead and created a meet-up group yesterday.  I figure if I build it they will come, right?  I hope so!  There have to be other parents who are feeling stressed out, tired and in need of sharing experiences.  I’m here for you, mamas, and I’m ready to talk.

The Karate Kid

I think we’ve finally found the key to The Boy, and slowly we’re unlocking a serious breakthrough.  The breakthrough comes with a hearty “Hi-YA!” and a karate kick in the face of Autism.

Aye-Yah!

Aye-Yah!

A little over a month ago, I called the local karate studio & spoke with the instructor of the class.  I explained that The Boy had been diagnosed with Aspergers but we were in the middle of getting him re-assessed & aren’t certain it’s AS.  We think he’s definitely somewhere on the spectrum, and thought that karate might be right up his alley.  We tried gymnastics & soccer, too much waiting around, not enough discipline.

“We have a couple of guys here with Autism who are black belts now.  Bring him in – we’ll run him through a trial and see if it’s a fit.”  The Instructor said.  I was careful not to get my hopes up.  This program didn’t accept everyone.

That Saturday, we brought him to the studio.  He was full of energy & a little unorganized, but he seemed to enjoy the physicality of karate, and he caught on to the routine pretty quickly.  I loved the structure & discipline that this class offered, and it was only 30 minutes – perfect for my little guy with the short-attention span.

The Instructor was a tough guy.  Just as The Boy began to act out & I hissed his name, The Instructor walked over to me and said “No, let me handle him.  You just sit here and watch.  He needs to know that I’m the boss here & if you’re doing the discipline in my studio, he won’t ever respect me.”  Word.  I was totally on board, but also on the edge of my seat, waiting to see how much of a spectacle this would turn into.  To my delight, The Boy didn’t buck too much, just tested the waters a little, but I loved that The Instructor didn’t let him (or any of the other kids) get away with a single shenanigan!

The Instructor told us to bring The Boy back again to the next class.  And again, and again, and again.  The Boy was in try-outs for almost 3 weeks!  He had to “earn” his “jacket.”  That totally motivated him.  He loved the challenge, he got the hang of things, (addressing his instructors as “Ma’am & Sir,” keeping his hands to himself, staying quiet & following directions – for the most part.) And although he struggled with controlling his body, he really made an effort.  After 9 sessions, he had finally earned his jacket!  He was a proud little boy, and I was a proud mama.

Yeah, I cried a little.  I don’t think I’ve ever seen the distinct look of pure pride on The Boy’s face.  He had accomplished this all on his own & he knew it! He glanced over at me & smiled, we exchanged the “thumbs up” sign.

I know it might sound silly, but I think he may have found his place.  This might be his sport.  I can’t see soccer as his sport, or baseball … He needs something that is more of a solo “team” sport.  In this class, he’s part of a team, but his success is solely based on his own merits.  And quite frankly, I’m a little relieved about this for several reasons – I mean, of course, I’m happy for him, but selfishly, I’m happy for me, too.  The thought of early Saturday soccer games out in the hot sun & weekday practices out in the hot sun don’t appeal to me.  I would do it, sure, and I even had envisioned him having the “All-American” childhood, replete with a position on the soccer & little league teams when he was growing inside of me.  But  maybe I’m not going to be a soccer mom.  Maybe I’m going to be a Karate Mom … or a Tennis Mom … or a Golf Mom.  I’m cool with that.

It’s been really spectacular to see the change in him … And it’s not just me & The Husband who see a change, his teachers commented to me that The Boy has been making big strides lately.  It’s a tough class & it’s three times a week, but it’s something that The Boy looks forward to – he enjoys the challenge & the routine, knows what’s expected of him & when he pushed back (which the instructor said he’d do,) he got his belt taken away for 2 classes!  He earned it back & learned the lesson: can’t clown around in karate.  There’s a time & a place for messing about, but in karate class, you act professionally, take it seriously & do your best.

Warning: MOMMY BRAG Ahead!

Yesterday, after being in this class for less than 6 weeks, he did this entire series called “Appreciation Form” which is a 12-step series of different hand movements FLAWLESSLY without any assistance from an instructor!  He even showed up a camouflage belt (highest belt in the class!)  The Instructor praised him “never seen a white belt do that series all on his own without any help!  Well done!”

We’ll see how it goes, but I think we’ve finally found his sport 🙂

 

 

April 2nd: World Autism Awareness Day

a new world | the fairly good mother A year ago my life was flipped on its head, and I had no idea that April 2nd was World Autism Awareness Day.  I still don’t quite understand how “awareness” brings about what I am really hoping for, (understanding & acceptance,) but hey, I’ve only been doing this for a year, so who am I to start demanding changes?

It’s been a long, interesting road full of growth and challenges since that day when I was told we were probably “looking at Aspergers Syndrome” for my then 2 year old son.  And reflecting back over the past year, I see how many big strides The Boy has made.  I see all of the things I’ve learned about myself, my son, my family & my world as it relates to Aspergers Syndrome.  Here are some of them:

1.  Two steps forward and one step back, that’s what progress looks like in my world.  We have good days & we have challenging days.  It doesn’t mean anything when The Boy has a day of challenges & seeming regression, (well, except that the wine comes out at 5:01pm,) but it means everything when he has a day of good choices, focused concentration & positive play.

2.  I don’t always display Mother Theresa-like patience & that’s ok.  I’m not perfect.  I’m just a woman who happens to be a mom of a child with Aspergers Syndrome & I’m doing the best I can … usually.  I’m not a Doctor, nor a trained therapist & I don’t always have all the answers.  Sometimes I’m too tired or frustrated to think of the perfect way to handle a melt-down.  I’m learning.

3.  It’s been a long time since I’ve read a book just for fun.  My reading list mainly includes research about Autism &  Aspergers, Sensory Issues & IEP’s.  Sometimes I get jealous when I hear people talking about this great book that they’re reading. For the past year, I’ve been reading like a lackadaisical college kid cramming for an exam at the last minute, because time is not on my side.

4.  Having a child on the spectrum can be very isolating, especially because he “looks” like a typical kid.  I’ve learned what our limitations are in terms of play-dates & birthday parties.  It made me sad last spring when we had to leave a kid’s birthday party because The Boy was wildly out of control & overwhelmed by the unstructured environment.  Generally, it’s better for him to have smaller, focused play groups with me right there ready to intervene in case behavior goes awry.  It’s not the way I envisioned play dates & yes, I get a tinge of jealousy when I look over to see a group of my mom friends engrossed in conversation while I’m helicoptering my son.  Who to tell, what to tell them, when to tell them?  Do I want to delve into a lengthy dialogue of what Aspergers Syndrome is?  Not usually.

5.  Guilt will eat me alive … if I let it.  It’s that dark vortex in my mind where I can spiral down fast if I’m not careful.  Guilt over how I handled disciplining The Boy that day – too much or not enough?  Guilt over if I’m doing everything I can for him, guilt over mistakes I’ve made: will they be detrimental in the long run?  Guilt about whether I’m balancing all aspects of my life properly; if I’m coming up short in my friendships … guilt, guilt, guilt.  It’s a useless emotion.

6.  Run the race with blinders on.  Who cares what other people are thinking as they judge us at the grocery store while I bribe the boy with cookies & cars?   Who cares what other people think when The Boy blurts out some incomprehensible word like “beak!” seven times in a row after they ask him how old he is?  Who cares?  Who cares that The Boy isn’t really interested in riding a bike or kicking a soccer ball?  It’s not fair to compare him to other kids & it’s not fair to compare myself to other moms. This is our life & we’re living it the way that’s best for us.

7.  No matter how much you think people understand – or how much they want to understand – they won’t really to be able to, and that’s ok.  I love my close friends and (most of) my family for just trying to.  They have been a source of great support and love for me, The Husband & The Boy as we have made our journey through the world of Aspergers.  But the truth is that they can’t understand everything.  They sometimes take The Boy’s lack of affection too personally.  They don’t understand when they ask him a question and he is gazing off in the distance, wrapped up in another world why he cannot answer them or why he’s so literal.  They don’t understand that sometimes things are outside of his comfort zone and no amount of reasoning or cajoling will get him to be “ok.”

8.  There is very little “me-time.”  I knew when I became a mother that my priorities would shift & that the focus of my world would be my child.  But having a child with special needs is even more time consuming & demanding than I would imagine have a typical child would be, (I could be wrong about this.)   But me time is important, (another post about that later,) lest you lose your mind.  It’s hard to find extra time when you’re juggling IEP’s, therapy appointments, potty training and counting down to transitions.  And going away for a weekend is nearly impossible!  Who can handle The Boy besides me and The Husband?

9.  Everyone has a slew of ideas on how to help … some work and some don’t.  Every therapist, every teacher, every specialist, every doctor, every book has a different idea on how to support The Boy in making good choices & correcting unwanted behavior.  Some of them work well, and some of them work for a little bit and then don’t work at all.  It’s worth a shot, but don’t make yourself nuts about trying every single suggestion given to you.  Just because something works for one kid on the spectrum doesn’t mean it works for every kid on the spectrum.

10.  It’s going to be a long road … and it’s going to be really hard sometimes.  After this last round with our school district, I had the sudden realization that my life was going to be one fight after the other with them for the next fifteen years!  It was overwhelming to think that every single school year I’d have to put on my boxing gloves and get into the ring with people who only view my child as a number or a name on a piece of paper.  But that’s what it is & The Boy is lucky to have me, a fighter, as his mom & advocate.

So, happy World Autism Awareness Day I guess.  curious not judgmental | The Fairly Good Mother Truth be told, I really don’t know what “awareness” is going to do for people who have Autism or Aspergers … Does being aware make people more compassionate?  In my opinion, no, it doesn’t.  I think education is more beneficial than awareness, but perhaps awareness is the first step.  And maybe being aware leads to being curious and opening a dialogue with someone about what Autism is, or what Aspergers Syndrome is & that’s something I can support.

I read a blog last night  called Living On The Spectrum: The Connor Chronicles that I thought summed up the way I feel quite perfectly.  I would love to see every child educated about autism & every spectrum disorder.  Because in my opinion, only through education can people truly begin to understand what it is like to live with Autism or Aspergers. And with understanding comes compassion.  And with understanding and compassion, we can hopefully arrive at acceptance.

Squeaky Wheel

I’m starting to get really annoyed with LAUSD (los angeles unified school district.) We were promised at The Boy’s IEP in late September that he would have 30 hours (at least) of one-on-one behaviorist services, and that if he needed more, they’d give us more. HE NEEDS MORE & I cannot get them to stay true to their word.

He started his PSM (Pre-School Mixed) class in the beginning of October.  The hours were only extended by 2 days.  Big deal. By the end of October, they were done with the one-on-one behaviorist shadowing him even though his behaviors had not improved.  I spoke with the Supervisor who put together his behavior plan and oversaw the behaviorist who worked directly with The Boy.  Over the month of November, I had about half a dozen telephone conversations with her, begging her to give us more time & that we were told that we would not be left high and dry by LAUSD during our IEP.  I told her that The Boy needed more hours, and she told me that he “has so many strengths and we don’t want to use the one-on-0ne behaviorist as a ‘crutch,'” and that he will “get the hang of managing on his own” and that “the teacher just needs to follow the plan we set up for him.”

After realizing that I would get no further with her, I went to the person ABOVE her.  I have been trying to get her engaged since early December; playing phone tag & listening to her promise that she would come and visit his class or “at the very least speak with his teacher.”  Well, I finally got ahold of her email address, (which I wanted to have in the beginning because I prefer a paper-trail, ) and shot off an email to her this week.  Well, lo and behold, I think I have her attention now.

Here’s MY email to her & below that is her response, (I omitted or changed the names to maintain & respect the privacy of all parties involved:)

Hi LAUSD PSM Specialist, 

I called your office number this morning and heard your voicemail message that you would be out of the office until Friday, so I wanted to write you an email.  

As you know, I first contacted you in December, and we spoke on Friday 12/7, you said that you would try to get over to the school to observe The Boy, but because the following week was the week before the winter break, things were hectic and you couldn’t make any promises, but at the very least, you’d get in touch with The Boy’s Teacher.  You and I spoke on the phone last week & you assured me that you would get in touch with her and also speak with Your Bosses. As of today, The Boy’s Teacher has not heard from you.  

It has now been over a month of me trying to get you engaged in my son’s situation, and I feel like I’m getting the run around.  I’m really becoming frustrated, PSM Director.  I was promised in the IEP that I would not be left out in the wind, so to speak, that if we needed more behaviorist one-on-one time, that we’d get it.  We need it.  The Boy needs the hours, he needs the one-on-one behaviorist to shadow him during his time in school.  I volunteer in his class on Tuesdays, so I see first hand what the situation is.  His teacher & the teacher’s aide are both wonderful, they follow the protocol that was set up by The Behaviorist & Her Supervisor, but it’s not enough.  The classroom aide ends up becoming The Boy’s one-on-one person.  Not only is that unfair to the other students, but she cannot devote her entire time to him, so when she has to tend to another student, The Boy will often act out & become unruly.  There are up to 16 students in that class – how in the world is The Aide expected to be able to focus her attention on The Boy one-on-one when 15 other kids need attention as well?  

When I expressed my concerns to The Behaviorist Supervisor in November, she told me that she didn’t want The Behaviorist time to “become a crutch,” but if he needs it, how is it a crutch? The Boy has many strengths, I do not doubt that.  He’s a smart, articulate, clever, funny little boy, but the undesirable behaviors, (his lack of focus, his inability to follow directions & listen to instructions, his physical outbursts that result in harming other children, spitting at them – which by the way is a totally new behavior,) are things that can be & NEED TO BE corrected now.  But it takes more than a mandate on a piece of paper.  It takes listening to me – his parent, his advocate – and believing me when I tell you that he needs help.  It takes supporting us in correcting these behaviors.  How can you support us?  By providing a one-on-one behaviorist until we all are in agreement, (the district, his teachers & my husband and I,)  that he can participate on his own in class without someone helping him every step of the way.  

I am open to discussing this further with you, but if you are too busy, or feel that you cannot help me, please let me know.  As I’ve stated above, it’s been over a month since I initiated contact with you & am still waiting for you to get engaged.  If you could please provide me with Your Boss’s contact number, perhaps speaking with her would better suit me & my son.  

Best, 
The Fairly Good Mother 

Hi The Fairly Good Mother…
I apologize for not being more responsive and available to you… I hear your frustration with this situation and agree you are your sons strongest/best advocate… I am a mother of 4 children whom have all had IEP’s and I truely hear you.  I am sorry that I was busy with many training’s for teachers when I returned from Winter break… and again I apologize for your frustration ….

I am including MY BOSS on this message.  I am also including a Behavior PKIT and is working with a student at The Boy’s School in the PSM in the afternoon. I will be asking for her to lend some interim support as well.  I will visit the classroom on Monday first thing…class begins at 8:45…I have also included my Supervisor and the Supervisor of Behavior Support to ensure we are able to move quickly in providing The Boy the proper support and to support the PSM program… 

Again I apologize and look forward to meeting The Boy and The Teacher on Monday 1/28…. 
Thanks

Well, freaking FINALLY!  Finally I have her attention & she copied her boss, as well as the Behaviorist Supervisor who told me about not wanting The Boy to use one-on-one Behaviorist time as a “crutch,” and several other people.  Her spelling and grammatical errors make me cringe, but I’ll overlook them as long as I am moving forward with this.

I am anxiously awaiting Monday!  I’ll let you know, dear reader, the outcome 🙂  And remember, it’s the squeaky wheel that gets the oil.

Don’t Go Changing

Coming to terms with being the mom of an Aspie has been a journey.  Of course, I went through the gamut of emotions since we got the diagnosis 8 months ago: denial, anger, sadness, frustration, hope, acceptance.  True acceptance was a long time coming.  I accepted it earlier on, because I had no choice, but secretly in the back of my mind hoped that they were wrong, that he would outgrow it, (and he still can outgrow some – if not all – of the behaviors.)  And because I had hoped he would outgrow it, I haven’t told more than a handful of close friends & family (not even all of our family knows,) about The Boy’s diagnosis.  Not because I’m ashamed, but rather because a) I’m not sure that it’s my place to say anything, it’s HIS life, HIS diagnosis – he can tell whomever he wants to when he is old enough; and b) because I’m not sure I want to delve into a lengthy discussion about what Aspergers is, or how they came to that conclusion; and c) I really don’t want to hear more people tell me “no, there’s no way he’s on the spectrum, everything you are telling me sounds like normal 3-year-old behavior.  He seems fine & normal to me.”  YES!  He is FINE & he is “normal.”  Whatever normal is …  Personally, normal seems pretty boring.  And I’m not interested in defending his diagnosis, or explaining to people what it is & why.

different maya angelou

But I finally told our regular babysitter, (complete with printouts, lol,) because I thought, as his caregiver, she had a right to know, (even though she only babysits like once a month or once every other month.)  And I have been more open with telling strangers when it is in the best interest of The Boy.  For example, when we were at the shoe store the other day & there was only one clerk in the store.  She was busy helping another family & told us 3 times in 5 minutes that she would “be right with us.”  The Boy has trouble with waiting & wasn’t even remotely interested in shoe shopping, (he was yelling “nooooo”) so I had to be swift with my approach.  Getting him interested in Spiderman shoes did the trick, now getting him to take off his shoes was another feat, but I did it.   Five minutes goes by & she starts in with another “i’ll be right with you.”  That’s when I abruptly interrupt her & politely inform both the clerk & the family that The Boy has Aspergers & gets antsy quickly, and if she can just measure his foot so we know what size he is, then she can continue helping the family out while my mom & I try and keep The Boy entertained, (we let him try on cookie monster clogs.)   I’m his advocate, I’m his mother, so I know what he needs & I am not afraid to ask for it – nay, demand it – if need be.

When The Boy was a baby, The Husband would sing Billy Joel’s song “Just The Way You Are” when he was changing his diaper – specifically, he would sing, “don’t go changing …” The Husband was being cute, but 3 years later, thinking about those innocent moments & reciting the lyrics brings tears to my eyes.  I never want The Boy to change.  I don’t hate Aspergers, I don’t hate that he has it … I love him, and I love that he has Aspergers because if he didn’t, he wouldn’t be who he is; he wouldn’t be The Boy that I love so much.  I love the way his mind works, even though I may not always understand how his mind works,  I love the way it works.  And I love trying to understand him & figure him out.  So please don’t ever think for a minute, dear reader, that I feel sorry for him  or sad about his diagnosis.  My Boy is going to do great things in this world.  Just you watch.

born to stand out suess

The only thing that makes me a little worried is the way other children regard him.  Kids are mean.  I’ve already witnessed kids shunning him when he gets too close to their faces and speaks in jibberish or goes off on a non-sequitor.   I wish more parents would teach their children about acceptance.  I wish more parents would educate their kids about being kind to other people even if they are different, look different, speak different, act different, play different.  DIfferent isn’t bad or evil.  Different is awesome.  Different is what makes our world beautiful.  Different is what creates new inventions, amazing books, gorgeous works of art, new trends, new ways of thinking.  Different is OK.

normal is boring

And just because I love them, here are the lyrics to “Just The Way You Are” by Billy Joel:

Don’t go changing, to try and please me
You never let me down before
Don’t imagine you’re too familiar
And I don’t see you anymore
I wouldn’t leave you in times of trouble
We never could have come this far
I took the good times, I’ll take the bad times
I’ll take you just the way you are

Don’t go trying some new fashion
Don’t change the color of your hair
You always have my unspoken passion
Although I might not seem to care

I don’t want clever conversation
I never want to work that hard
I just want someone that I can talk to
I want you just the way you are.

I need to know that you will always be
The same old someone that I knew
What will it take till you believe in me
The way that I believe in you.

I said I love you and that’s forever
And this I promise from the heart
I could not love you any better
I love you just the way you are.

The Darkest of Hearts

Everyone wants to know “why” when something terrible happens, a random act of horrific violence like the tragedy in Sandy Hook, CT.  The truth is, sometimes there is no reason … or, if there is a reason, it may not be uncovered for quite some time.  Unraveling the thorny wrappings of a dark heart is not a five-minute task, and trying to speculate as to how and why a person could have acted with so much evil toward innocent people, let alone against his own mother, can lead to some really irresponsible accusations.

Accusations from arm-chair psychologists like, “he was anti-social & likely autistic,” “perhaps even an Aspie,” are splashed across news stories and blogs.  Rumors of his troubled relationship with his mother swirl around the social media community, saying that she was a terrible parent & a drunk with a gun collection.  These rumors enrage me and make me sad.  Not only do they take away from the tragedy, and divert the grieving process, they fuel incorrect assumptions that somehow a developmental disorder equates to a mental illness.  That is simply not the case, and to assert that having autism makes you a violent criminal is irresponsible.  It’s like saying that all pitbulls are aggressive, deadly dogs.  That is so far from the truth.  (I happen to know a handful of pittbull dogs that are the sweetest dogs I’ve ever met.  It is  mostly due to how they are being raised by their owners.)  And The Boy, my sweet three-year-old son, who actually has a diagnosis of Asperger Syndrome from two independent child psychologists, is in no way a violent or vicious child.  So to draw the conclusion that someone with Autism or Aspergers turns into a violent, rage-filled person really pisses me off.

This murderer, (I refuse to use his name because he doesn’t deserve that recognition,) was most likely mentally deranged.  That is not an accusation, but rather a very likely assumption.  That is as far as we should take it for now until we can learn more about who this person was and what made him this way.  He may have been born this way, with a dark heart filled with angst and hatred.  Or perhaps a series of random events shaped him into this monster … a victim of bullying, a child of divorce, having his heart broken multiple times by multiple people.   We don’t know, but there are a million things that could have made someone this way.

I suppose it’s human nature to want to find a way to explain HOW this could have happened, and to try and find a way to prevent it from ever happening again.  Enter the stricter gun-law legislation.  Fine, why not make it more difficult to own a gun?  I don’t have a problem with that so much, but it is not going to stop evil-doers from terrorizing innocent people.  If they want a gun, they will find a way to get one; beg, borrow or steal.  It’s not the responsible citizens who abide by the laws to own a gun & are educated on the proper use and storage of a gun that we need to worry about.  It’s the mentally ill, ticking time bomb who is silently suffering with an undiagnosed mental disorder, and bought a gun off the black market, or stole it from someone’s house that we need to worry about.  You can’t legislate evil.

But we can open the dialogue about mental health in this country.  For as long as I can remember, it’s been this hush-hush, dirty secret that no one wants to talk about.   And it’s time that we come to terms with the fact that keeping mental illness a secret doesn’t do us any favors as a society.  Remember when child abuse was the dirty secret that no one wanted to talk openly about?  Well, we changed that.  It took a handful of horrible incidents to shift our thinking, but as a society we did open up the box of dirty secrets about child abuse, and now when we suspect that a child is being abused, it is our responsibility to notify someone of authority to do an investigation to determine if that child is in a harmful environment.  Likewise, when we suspect that a child, a teenager, a young adult, or even an adult is suffering from a mental illness like depression, PTSD or schizophrenia, shouldn’t it be our responsibility to step in and offer help, or notify someone of authority who has the training to help?

The sad fact is that seemingly no one helped this murderous man.  I look at the pictures of him on the news & see his eyes are black, they are vacant … devoid of any compassion.  People had to have known that he had mental issues, but did they stay silent?  Were they afraid to step in and offer help?  I don’t know, but maybe this could have been averted had someone reached out their hand & said, “hey, you need help.”  Maybe he would have taken the hand, and none of this would have happened, or maybe he would have slapped it away, and maybe it wouldn’t have made a difference.  I guess we’ll never know.

A is for Asperger …

It’s a long story, well, really not that long – it’s only been since April of this year that we were told by a Psychologist that our son (then 2 1/2) was going to be diagnosed with Asperger Syndrome.  It still makes me tear up when I type that out.  Not because it’s a death sentence – I mean, it’s not like my son has cancer – but because life is already tough enough without having the added difficulties of a neurodevelopment disorder.   Like every loving parent, I want to my son to have any and all advantages he could in life, and hearing that he was probably going to have some big hurdles to overcome made my heart sink a little.  I went though the range of emotions: disbelief, shock, anger, rationalization, denial, depression & finally acceptance.  But … let me begin at the beginning.

I had a pretty normal pregnancy, nothing major to report, (except for gut wrenching nausea & some debilitating migraines for the first 16 weeks!)  Toward the end, my blood pressure was elevated & I was eager to meet this little human who had been incubating inside of me for so long.  It is safe to say that I was impatient & my doctor agreed that if I went past my due date, he would induce based on my high blood pressure.  So that’s what we did.  The induction did not work & I was given the choice to go home & then come back to the hospital in 2 days & try it again.  I’m a stubborn gal & I looked at my husband and said “I’m not leaving this hospital without a baby.”  So the decision was made to have a c-section that evening.

Our Boy was born perfectly healthy, 7lbs / 9 oz & 19.5 inches long.  No issues, and we left for home 3 days later.  He was a great baby, latched on & was a champ at breast-feeding … until my milk dried up.  We sleep-trained him at about 4 months & I taught him to sign when was 6 months old.  He hit all of his milestones either early or right on time.  No issues to report – he developed amazing speech skills, made eye contact, and smiled at us a lot.  There were no red flags for the first two years of his life.  He did cute and curious things that we didn’t realize may have been indications of Asperger Syndrome.  Things like:

  • What we called the “stompy dance.”  When he began walking, he would just stop and stomp his feet around – it was really so adorable.  Now I know that he might have been looking for extra sensory input. (And looking back even further when he was just a baby, he loved that crazy jumperoo thing that hung in the doorway – could jump in that thing for HOURS!)
  • He could spend inordinate amounts of time looking at himself in the mirror, (luckily we have mirrored closets, so he could enjoy his reflection for quite a while.)
  • He would (and still does) spin around and around.  (Again, seeking that sensation of feeling dizzy.)
  • Bending over to hang upside down to get that same sensation.  (He still does this.)
  • Odd repetitive speech patterns: “taka-taka-taka” (Still does this as well.)
  • He has always loved to swing … it’s the only thing he wants to do at the park most days.
  • Banging or throwing his toys on the floor or the table – which would literally drive me to drink (don’t worry, I waited until 5pm for my glass of wine, but boy oh boy did I need it after hours and hours of hearing toys slam on the floor.)  Luckily, we have pretty much eradicated this behavior!
  • Flipping over his toy trucks & cars to watch the wheels spin.  (He will occasionally still do this.)
  • Lining up his toys and making patterns out of them rather than playing with the appropriately.  (Still does this, but also plays appropriately with his toys, too & the patterns are intricate and amazing!)
  • Spacing out as though he were in a completely other world – as though he didn’t even hear me when I’d be talking to him.  (Still does this sometimes.)
  • Banging his head against his pillow to help himself relax.  (Still does this.)
  • Not into arts & crafts, coloring or getting his hands “messy” with glue or food.  (He’s a boy – we totally understood that he’d rather zoom cars around the floor than make a handprint turkey.)
  • Has difficulty with transitions or change.  (The Boy loves his routines!)
  • Obsessing about movies, subjects, books for weeks at a time.  (He’s gone through all of the Pixar movies & is currently obsessed with The Peanuts.)  He knew the entire solar system, the order of the planets & which one was the hottest, coldest, etc., when he was just 2 and 1/2.

None of these things caused my husband or I to be alarmed.  We knew he was a very bright and unique child with a thirst for knowledge.  All of these things, (with the exception of the throwing & banging of toys,) were cute!  The only reason that we ever ventured down the road to getting a label for this behavior was because of preschool.

Preschool.  We weren’t even going to consider preschool until he was at least 3 or so.  I’m a stay-at-home mom, so there was never any reason to send him to preschool.  But I got pregnant right before he turned 2, and figured that it might be a good thing for him to have something of “his own” so that when the baby came, he didn’t feel like he was being replaced … and also because I knew I’d being going to the OB/GYN a lot, so why not have him go to preschool and learn how to socialize with other children while I go to the doctor.  Well, I lost the baby, (another story for another day I suppose,) and since we had already paid for the first month, I decided why not just let him go for 3 days a week – it was only 3 hours in the morning – and see if he liked it.

He not only liked it, he loved it!  He would tell me all about all of the “friends” in his class on our way home each day.  Come to find out, he wasn’t playing with any of them – just observing from afar.  His teacher was constantly reporting to me that he was not acting like a “typical” 2-year old … he was hitting & kicking, pushing & spinning.  Inattentive, disruptive, and didn’t make eye contact with her or the aide.  Except for the eye contact part, everything else sounded like sort of normal 2 year old boy behavior – lots of friends with kids the same age said theirs were behaving similarly.  So I disregarded the eye contact stuff because he usually always looked at me, my husband, my mother & other close family and friends.  I considered pulling him out of preschool – maybe it wasn’t the right fit, maybe he was too young – but because he expressed to me how much he enjoyed going, I decided to play it by ear.

Well, after a couple of months of cringing every time I picked him up from school – nervous to hear about his behavior that day, wondering if they all thought I was the worst mother in the world because my son was aggressive – things escalated rapidly.  We were called into the Director’s office one morning — The Boy had picked up a play kitchen table & hurled it across the room, narrowly missing a few kids.  When the teachers yelled at him to stop, he laughed, picked up some large toy trucks and started throwing those as well.  The Director and the Teacher gingerly broached the subject of Autism.  They weren’t giving a diagnosis, but they were explaining that they noticed some things that they considered to be red flags, and encouraged us to seek help from Los Angeles County Regional Center.  We were told that they were a government agency that would assess The Boy, and provided free help for children on the Autism Spectrum or with other Neurological Disorders & Learning Disabilities.

My husband and I walked to the car, got in and I started to cry.  No way was my child autistic!  He talked all the time and had excellent speech, above average cognitive reasoning … he was affectionate and outgoing, social and curious.  But deep down inside, I knew something was amiss.  The little things that I had thought were normal and cute and typical behaviors started to cause me concern.  The spinning, the spacing out, the obsessively turning on and off the lights … and over the past couple of months, he had started to hit me and my husband.  So, I figured what could it hurt to call Regional Center – it was free, my tax dollars had already paid for the service*.  If something was wrong, I wanted to address it right away, and if not, then I wanted to be able to say “see, nothing is wrong with my child!”

I filled out the paperwork, and sent it in the following day.  On the form it said it could take up to 45-60 days to process.  Of course it would, it’s the government for Pete’s sake!  By that time, he’d be on summer break & wouldn’t be in school anymore!  In tandem, I called our Pediatrician and scheduled a consult.  Our Pediatrician is a really wonderful man, a wise, calm, easy-going, and patient man – quite literally, the best in town.  He said that the behavior he was witnessing in the office that day was totally normal for The Boy’s age, but it wouldn’t hurt to go through the rigmarole at LACRC.  We all agreed it was too early to put labels on The Boy.

Truth be told, I was not expecting our experience at LACRC to be all that great, mostly because it was a government-run agency.  Boy was I wrong.  I received a phone call 4 days after filing our paperwork.  Our case manager was not just some emotionally detached “government drone.”  No, quite the contrary.  She was kind, generous, and genuinely concerned.  She scheduled assessments without even having us come in for a first meeting with her.  “Time is of the essence” she said, “and we need to get you some help quickly.”

Right away, we had a slew of assessments: Developmental, Speech, Occupational Therapy & Psychological Evaluation … Speech was not an issue for The Boy, but it was a requirement for LACRC.  As expected, he scored off the charts for speech – way above his age, but the therapist noted trouble with transitions, the banging of toys, and lack of eye contact with her.  Developmental assessment, he tested at or below his age, except for speech.  Occupational Therapy was interesting … he was exhibited some sensory processing and response dysfunctions.  And the word that kept coming up at every assessment from each evaluator was “perplexing.”  The Boy was “a perplexing case.”  They all explained that he didn’t fit into any “mold.”

When it came time for us to meet with the Child Psychologist, I had no clue what to expect or what was going to happen.  In hindsight, I really should have had my husband and / or my mother accompany us.  My husband was very busy at work,  and although my mom offered to come with us, I told her it wasn’t going to be a big deal.  Well, I was wrong.

The Psychologist tested The Boy while I filled out paperwork.  We were there for almost three hours.  I was impressed with how well The Boy handled everything, especially because the assessment spilled over into his lunchtime & nap-time – a definite disruption to his routine.  She interviewed me while he played.  We discussed family history … no, nothing on my side, but on my husband’s side, he has a (now 20 year old) nephew who has Asperger Syndrome.  And, I confided to her that I’ve always suspected that my husband is a little bit of an “Aspie” himself.  (The Husband loves his rituals and routines.  He is the smartest man I know, with the driest wit, and we always joke that I’m the “social bridge” in the relationship, meaning that he’d never see his friends if it weren’t for me arranging get-togethers.)

The Psychologist continued to do her work, talking more with me, observing The Boy.  “Well, he has made eye contact with me, and he doesn’t meet the criteria for classic autism, especially based on his speech and cognitive reasoning, so, what we’re looking at is Asperger Syndrome.  That’s the diagnosis.”  I didn’t react in any sort of emotional way, because like I said, there is a family history & truly, it was almost a relief to hear some sort of diagnosis for the behavior My Boy was exhibiting.

I didn’t react until I got into the car and called my husband.  No, I take that back, I didn’t even react then.  I think I was still in shock.  I simply relayed the diagnosis in a very matter-of-fact manner.  I could tell The Husband was concerned, and starting to get upset – he came home shortly after we got off the phone.  It wasn’t until I got home and was in my own comfortable element … I called my mother, and the tears just came.  The one thing she said that stuck with me was, “he’s still the same boy he was yesterday … he’s still the same, wonderful, loving little boy, honey, that has not changed.”  So I cried.  We cried.  And we went through the range of emotions that I listed earlier: disbelief, shock, anger, rationalization, denial, depression & finally acceptance.

After voraciously devouring everything I could find on the internet & in the library, I learned that some of the most amazing people were Aspies, (Carl Sagan, Albert Einstein, Mozart, Orson Wells, to name a few.)  And if The Boy did indeed have Asperger Syndrome, it was looking like a very mild case – he is such a social butterfly!  I also learned that early intervention is the key to correcting some of the undesirable behaviors.  So that’s what we’ve been doing for the past 6 months, (child development specialist, behaviorist, occupational therapy,) and we’re already seeing huge leaps in his progress!

Asperger Syndrome is not a terrible diagnosis … yes, there are challenges, but the rewards vastly outweigh them.  Even though My Boy’s mind isn’t “typical” and may not process things / ideas / information in a typical way, I love the way his mind works.  I wouldn’t change him even if I could.  He’s a beautiful boy with a beautiful mind.  And I love being his mother.

*Actually, Regional Center services are no longer free.  They now charge each family an annual fee of $200.