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

 

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Kicked Out!

We gave it our best effort … The Boy tried, he really did. I tried too … And the camp, well, the camp gave it their best shot I suppose, but in the end, we came to a “mutual agreement” that their summer camp wasn’t the best fit for the Boy & we went our separate ways in the middle of the week last week.  Apparently running from the counselors toward the street in the middle of a public park didn’t go over so well.  I don’t blame them – it’s a safety issue & if anything had happened to The Boy, you bet your sweet patootie, I’d be flipping over tables and lining up the lawyers!

So we gathered our things (minus one swimsuit, one pair of flip-flops and some pricey goggles,) and left.  I was relived & slightly happy, because now I get to have him all to myself this summer.  I was also kind of sad for him because … well, because he was starting to really like camp, just beginning to make friends, and it made me cry to think that he isn’t going to have a “normal” childhood and do “normal” kid stuff like go to summer camp.  I knew that already, (the not having a normal childhood part,) but I feel like I forget it all the time.  And the whole kicked-out-of-camp thing made me realize that it’s never going to be the kind of carefree life that everyone else has … and I’m totally ok with that, but sometimes it makes me a little sad for The Boy.

Anyway, I won’t dwell on that because hey – I have 8 weeks of awesome MamaLove SummerCamp planned!   (I actually only have the next 4 days planned, but don’t fret, all those things I’ve been pinning on Pinterest are going to come in handy over the next 8 weeks.)  Swim Play Dates, Beach Days, Library Outings, Cooking Club, A Fairy Garden … this summer is going to be one to remember!

And I will do my best to document it, but I’ve made a conscious decision to be as “hands-free” with The Boy as I can.  I’ve pretty much chucked out 90% of social media, but that is a story for another day …

Happy Summer!

 

Summer Camp Blues

This has proved to be a tough day for no real terrible reason.  Lots of tears have been tumbling out of my reddened eyes & I’ve been trying to keep myself occupied, (luckily, Ikea has been a good annoying distraction – more on that in another post.)  I didn’t bother even putting on make-up today, because I knew it would be another emotional day.

Like I said, it’s not anything tragic, but I’m a big sobbing mess.  Why?  The Boy started summer camp today, and was away from me from SEVEN excruciating hours!  It was harder on me than it was on him.  And it’s not just that camp started, it’s that preschool is finished, kindergarten looms in the very near future, and he is almost 5 … time is moving way too fast for me.

Wasn’t it just yesterday when he and I were taking Mommy & Me swim classes at the YMCA?  Wasn’t it just last week that we hatched caterpillars that grew into butterflies and set them free in the front yard, caught up in the magic of the moment?  Wasn’t it just last month when we would have long periods of quiet bonding time, me relishing in the way he discovered the world around him?

Where did the time go?

Now he’s ready to spread his wings & fly away from the nest – not too far, but far enough to cause me to hold my breath.  Will he be ok?  Will he remember to re-apply his sunscreen?  Will someone help him if he is having sensory issues peeling his banana?  Will the camp counselors remember what I told them & help him with social interactions, or will they leave him to fend for himself?  What if a kid is mean to him, pushes him, hurts his feelings & I’m not there to intervene?  My mind was swirling with a thousand “what-ifs” all morning long.  I mean, I would feel like this if he were an NT kid, but he’s not & although he seems typical, he still is an Aspie & has special needs.

My job is to protect him.  Besides The Husband, (and his Grandparents) no one else in the world takes this job as seriously as I do … and then the control freak in me just felt so uncomfortable with all the variables that are absolutely OUT of my control.  And bottom line, it’s really hard for me to trust – especially to trust that someone else will care for my child the way I expect them to.

The Boy & I talked the entire ride to summer camp; role-played on how to make new friends, what to say, what to ask, talked about how to keep our hands to ourself, talked about asking a counselor for help if and when The Boy needed to take a break because there were going to be a lot of kids around him, we went over his home phone number, my cell number, our address and a slew of other things … WITHOUT freaking him out.  Just casual conversation.  And then, after a lull in our conversation, he said:

“Mommy, I’m a bit nervous.”  My heart leaped, but I had this.

“Honey, that’s ok, it’s normal to feel nervous when you’re starting a new adventure.  I feel nervous too when I am trying something for the first time, so does Daddy.”

“What if I don’t like it?” He wondered.

“Well,” I swallowed & searched for just the right thing to say.  “I think you’re probably going to have so much fun and make lots and lots of friends, but if you try it for a week or so and you decide you don’t like it, then you don’t have to go back.  But you do have to be brave and give it a try … doing new things & meeting new people is part of growing up.”

“But I miss my friends from my old school – I want to go back there.”  Now, here’s where my heart sank … This poor child has been shuffled around to 3 different schools now & it’s been tough to put down any kind of ‘roots’ and make lasting friendships – every time he bonds with someone over the school year, we’re off to another program, never to see them again.

“Honey, your pre-k school is closed for the summer,” I explained, “everyone is going to different summer camps or they’re on summer vacation, but we will see your friend Dani for play dates, and you will make new friends here – it is going to be a lot of fun.”

He accepted my explanation and we got out of the car and walked in to this new, unfamiliar world of summer camp. We checked him in, dropped off his backpack & he was excited and happy as I took his picture for the purpose of documenting his first day of summer camp in 2014.

I walked him to the door that led to the play yard outside, and he kissed me good-bye & ran outside, full of hope and excited energy.  It was all so fast – I wanted him to linger for a minute, but knew that wouldn’t be a good thing – better to rip the bandaid off quickly.

I watched him from a window where he couldn’t see me … he wandered around aimlessly for a few moments, as I held myself back from running out to his rescue.  He was just about to strike up a conversation with a couple of older girls as a basketball slammed into the side of his head!  I had to resist the instinct to intervene – I waited to see what he’d do.  He shook it off & shortly thereafter he started a game of race with another older boy.  A camp counselor was nearby and monitoring the interaction.  I felt better, but still uneasy.  I crept out, and then found another vantage point to spy from … I spied for another 10 minutes and then I had to force myself to go.

The truth is this … I don’t want to miss one moment of his life.  Selfishly I want to be there for every little thing, I love seeing the world through his eyes – he’s always filled with wonderment & awe over all the discoveries he makes during the day.  But I know that the right thing to do is to give him some space to grow & explore the world without me right there on top of his every move narrating the story, but that’s really difficult for me.  I also want to protect him, help him, guide him, and monitor everything.

But it’s not about me – it’s about letting him drift away from the nest a little bit & letting him put into practice all of the things we’ve been working so hard on, (social skills, self-help skills,) and not ever letting him see how much it affects me.  He can’t know that it breaks my heart to have him away from me for more than a few hours, otherwise, he would want to comfort me and take care of me & never leave my side.  I will never be that kind of burdensome mother.  I’ve seen them in action & they disable their children to the point of a role-reversal. And Typical or NT, I think this kind of a transition (the growing up & letting go) is hard on any (good) parent.

So, I suck it up, I walked back to the car, losing the fight with the tears that were distorting my vision.  I got into the car, shut the door and just sobbed for a good ten minutes.  I’m not ready for this transition. If I had a magic potion, I would keep him little for a while longer.  Though I don’t know that I’ll ever be ready for him to grow up … It’s my job to prepare him for what lies ahead in this great big world.  And as with pretty much every job I’ve ever had, there are some things about the job that are not easy.  Letting go just a little bit & letting your little bird spread his wings is not easy to do, but it is the right thing to do.

When I went back to get him (and believe me, my eye was on that clock every other minute, counting down!)  He was happy to see me, gave me a hug & said “Mommy, I had so much fun!  And I made lots and lots of new friends, just like you said.”

That made me feel a little better.  A little.

I hope tomorrow is easier.  (Update: IT WAS!  I feel much better today … )

The Adventure Begins Here Photo Credit: http://stage.bsaboston.org/camp/

The Adventure Begins Here
Photo Credit: http://stage.bsaboston.org/camp/

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.

Easter Egg-citement … and a Life Lesson on the side

Oh that title is sooooo cheesy, but it’s late & you get what you get at this point. And by the by – this post has not been “proofed.” I still have to make a basket, hide eggs tonight, and gnaw out chunks of a carrot that The Boy left for the bunny.

On Thursday, The Boy & I made Chickadee Cupcakes!

chickadee_cupcakes_platter

 

I was inspired by this post.  Mine are nowhere near as perfect & pretty as hers, but then again, I’m just a “fairly good mother,” so what do you expect?

Let me see if I can impress you with this little tidbit of info:  I did all of this WHILE working from home, juggling calls, making deals & doing laundry, AFTER running errands in the morning.  Impressed?  *huffs on knuckles & brushes off the shoulder dust*  Yeah, I’m a badass mama sometimes.

We took the easy route – got a box yellow cake instead of making from scratch, BUT I did make whipped cream frosting (my own concoction using heavy cream & powdered sugar & vanilla – don’t measure, just add to taste,) and then added yellow gel.  I bought pre-made eyes & used some orange icing that was leftover from Halloween.  It was Wilton’s – the kind in the air canister & it had a mind of it’s own, very difficult to deal with! I piped on some frosting to the sides for their wings.  Note: You need to refrigerate these because of the cream frosting.  Just let them stand at room temp for 15 minutes or so before you scarf one down.

The Boy had fun making some of the chickadees into “silly chickadees” with one eye or three, and since I didn’t want 2 dozen chickadees, so we used the rest of the batter to make a mama chick.  We used chocolate chips for her eyes & The Boy, my little choc-o-holic, ate enough chips to make 5 more chicks!

mama_chickadee_cakeWe took some of the cupcakes to the neighbor kids & then went to karate.

On Friday, we tackled the eggs!  And let’s be honest here, it was a less than perfect undertaking.

Take one rambunctious 4 year old, add 6 flimsy PAAS cups filled with colored water & of course your chances for a disaster are like 97% … Add to that the fact that I had dressed him in a new outfit that was partially white & the chances increased to 99.9999%.

No worries, I’m a chilled out mama regardless of my self-diagnosed mild OCD.  I had prepared for this event: laid out paper towels & put an apron on him.  But two seconds after this picture was taken …. the green egg disaster commenced.

Green will be all over the kitchen in 5-4-3-2 ...

Green will be all over the kitchen in 5-4-3-2 ..

The Boy accidentally tipped over the flimsy PAAS cup (we were using the whisk to hold the egg since that’s an easier way for kids to maneuver the eggs.)

The Boy immediately freaked out & hopped off his stool to retreat in the far end of the kitchen.  Before I even went to clean it, I consoled him.  My little sensitive guy was obviously pretty upset that he had spilled the green all over the counter, cabinets & himself.

“Guess what?”  I told him … “Accidents happen & I’m not mad.  I know I told you to be careful, but it’s no big deal – do I look mad?  No.  I’m not mad at all & it’s ok!  Let’s take off your apron & get you a new one.”  But he was still pretty shaken by the whole thing & ran off to his playroom.  This was a great teaching moment (yes, those are actual real things for the fairly good mothers of the world.) I went to get him & we had a nice little talk about how important it is to forgive ourselves when we’re not perfect.

He came back to do a couple more eggs, but I could see that he was a little timid & still pretty mad at himself, and it broke my heart into about a thousand pieces when I asked him why he was still upset & he said “I’m mad at myself for making an accident & I don’t want to color eggs anymore because I’m afraid I’ll do it again.”

I choked back my tears.  Give me a break, friends, I’m PMDD’d & I love this kid.   I got right down next to him & told him “hey it’s totally ok if you do it again … I might even do it this time!  I’m not perfect, no one is.  If we make a mess, we’ll clean it up!  No big deal.  Right?   And listen to me … You know when a friend does something that makes you sad & they apologize to you & you say ‘I forgive you?’ well, it’s important to forgive yourself when you do something that makes you sad or frustrated.”  He got that.  And we finished the eggs.

Tie_DyeEasterEggs

We used the PAAS Tie-Dye Easter Egg Kit, which I have used in past years, and had so-so results, but apparently my fairly good brain forgot that we tried this before & I bought the kit again.  This time they had included this gloss to polish the eggs, which seemingly made some difference.  And I guess I perfected my technique … or maybe it was just luck 🙂

 

I think I like this one the best: Pink_TieDyeEgg

Or maybe it was the super bright pink egg that I did just for The Boy since it’s his favorite color & I knew it would make him happy.

And we read this book before bed – one of MY childhood faves: The Country Bunny & the Little Gold Shoes.

the country bunnyIt’s about a Country Bunny who becomes one of the 5 Easter Bunnies.  Was written in 1939 & still holds up seventy-five years later!

I hope you have a great Easter, and I hope you can remember the wonderment you felt as you woke up on Easter morning to discover a basket filled with goodies & eggs hidden around the house.

Childhood is a magical time where reality is kind of suspended … at least if you have fairly good parents who will do that for you.

I hope The Boy looks back on his childhood and forgets the accidents & the struggles, and only remembers the magic, the wonderment, the joy of his life.

P.S. Tell me that the addition of the text to my pictures was worth it! Thanks Picmonkey.

xo 🙂

 

 

Snakes In The Mouse House

GreedyMcGreedersons: 1 / Disney: 0

I found out today that Disney is changing their “Disability Accommodation Pass” Policy thanks to the greedy actions of some wealthy asshats & morally bankrupt disabled folks.  Thanks a lot, jerks – way to ruin it for the rest of us.  And thanks Disney for punishing those of us who genuinely need this to enjoy your park!  I was actually looking forward to taking The Boy to the Halloween celebration at Disneyland, but now, I am going to have to reconsider.

You see, before I knew what an accommodation pass was, we had a handful of stressful experiences at Disneyland, and I figured that Disneyland just wasn’t going to be something The Boy, The Husband & I could enjoy as a family.  It saddened me, because growing up 15 minutes from The Happiest Place On Earth, Disneyland was such a part of my childhood that I naturally assumed it would be the same for The Boy.

It was a sad realization that he wouldn’t have the same experiences I had there … until I had heard about the “accommodation pass” from a woman who runs a non-profit group for families of kids on the Autism Spectrum.

Waiting in line is hard for The Boy.  Much more difficult than it is for a typical kid … And being over-stimulated by all of the crowds, the fanfare, the parades, the noises, the characters — it’s a lot for a little Aspie to deal with.  It’s a lot for the mom of a little Aspie to deal with, but then I was told about the “accommodation pass.”  This changed everything!!

With the accommodation pass, we only go a couple of times a year & even then, we plan it out for a day that will likely be less busy, with less over-stimulation, and hopefully with less judgmental eyeballs on us, sizing up HOW it is we three can cut to the front of the line because we all “look” so “normal.”  We never abuse the pass & if there is an occasion where he can tolerate the line, we wait like everyone else.

And to be clear, you don’t get anything for “free” – you still pay for your ticket.  Having an accommodation pass doesn’t mean that you get to cut in front of the line and breeze on to the ride, but it does trim down on the wait times & takes you out of the regular line so that a meltdown due to overstimulation from crowds, and / or waiting is a lot less likely to occur.  It allows us to have a more “normal” & easy experience.

You cannot use the accommodation pass to cut down the wait time for dining, so there’s that barrel of monkeys to contend with, and you also can’t use it to cut into the line to meet with the characters, so we don’t get to do a lot of character meet & greets, (except recently I made friends with the character guide & asked him when the next time Sully was going to make an appearance so that I could try to time it out perfectly.  I ran with The Boy & his tow-headed girlfriend, so that we could be the very first people in line.  We almost made it, but we were like 5 people too late.  However, thanks to the sweet stranger in front of me, through a natural conversation, I briefly & quietly explained our situation, and she was kind enough to let us go in front of her & her son.

I certainly don’t expect preferential treatment, but I definitely appreciate any accommodations that kind, compassionate people are willing to bestow upon us.  It’s hard enough to confide in someone that my kid isn’t “normal,” even though he may seem to be at first glance.  I truly appreciate the courtesies that are afforded by understanding strangers.  And on the flip side, the glaring looks from those judgmental asshats anger me to no end.  You want to trade me?  I’d gladly take waiting in line for 45 minutes if that meant my son didn’t have to struggle with  Aspergers Syndrome.

No, I don’t think it is fair that other kids – “normal” kids, “typical” kids –  have to wait in long lines to go on rides.  I know it’s tough for any kid to wait, and I do think that adults with light disabilities should let all kids go first.  They’re kids after all!!  BUT, kids with mental delays, kids who are not neuro-typical, kids who have any disability or chronic disease — well, they should go straight to the front of the line.  If for no other reason than this: LIFE IS HARD when you have a disability.  And Disneyland is a magical place where that is all somehow erased … it’s a special place where not being “typical” doesn’t mean anything other than you’re super cool … At Disneyland, the playing field is leveled.  Everyone is SPECIAL.

So … some idiots totally ruined this for those of us who were just cruising along enjoying the brief respite from the storm of spectrum disorders as we meandered down Main Street.  I’m so annoyed I could rip their heads off and roll them down the crest of the Matterhorn!  (Of course after hours when the kids wouldn’t see this!)

Truly, I don’t mind proving The Boy’s eligibility with an IEP or a Dr’s note if that means that people, like us, who genuinely need the accommodation pass will still receive it.  But taking it away completely is a real tragedy.  It makes me angry that these selfish idiots have ruined things for those of us who have come to rely on this to enjoy Disneyland.   Sadly, I know it doesn’t phase them one damn bit.  There are no sleepless nights for them.  They don’t give a crap that my kid is going to suffer.  They’ll find another scam … and I’ll probably write another pissed off post.

No, I’m not sure I’ll be coming back to Disneyland if it means merely getting a “fast pass” for us.  Do you know how difficult it is for a 4 yr old Aspie to grasp the concept of “later?”  “No, sweet Boy, we cannot ride the Radiator Springs Racers right now, but in 45 minutes we will be able to.”  No, it’s impossible to understand if you A) are not an Aspie Kid; or B) are not a parent or caretaker of an Aspie Kid.  And I’m actually surprised that Autism Speaks was ok with this change.  What was their payout to get on board with this bullcrap?  They sure don’t speak for me!

Let the 56 year old lady on the little rascal wait in line with her leach family  – Let the spectrum kids, and the cancer kids, and the cerebral palsy kids and the kids who are 16 and under with ANY disability get on that ride FIRST.  END. OF. DISCUSSION.

And I’m pretty sure that Walt would agree.

And yeah, I can say that because I worked at Disney for a large chunk of my adult life & know a lot more about the Disney culture, what Walt believed, and the vision that he had for Disneyland than most of the losers who are making decisions up there now …

Punishing kids with disabilities for the bad behavior of the rich & entitled was NOT in his vision.

End Rant. (for tonight anyway.)

Putting On Shoes with a Song

So, with an Aspie kid, the simplest of tasks can be a monumental under-taking.  Like putting on your shoes.  Or his shoes.  Or her shoes.  In any case, putting on shoes and going potty seem to be the 2 most challenging things we accomplish in the morning!

I’ve concocted a song to the tune of “Hokey Pokey” (you know that one, right?  “You put your right foot in, you put your right foot out …”) that helps The Boy get excited about putting on his shoes and socks.  It’s a little hokey (yes, pun intended,) but here’s how it goes:

You put your right thumb in,
You put your left thumb in,
You pull the sock apart and put your toes-ies in,
You scoot your toe-sies all the way down to the end,
That’s how you put you put your sock on!

You put your toes-ies in,
You put your heel in,
Wriggle your foot ’til it’s comfy and then
Strap your velcro to the sides again
That’s how you put your shoes on!

shoes and socks

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.

Getting Somewhere … I Hope!

You might remember from my post about being the Squeaky Wheel that I’m currently embroiled in a battle with LAUSD to get The Boy the support he needs in his preschool classroom.  Sadly, it seems as though only when I pull the bitch card & start to make threats, that’s when they begin to perk up and listen.

Let me just say that if the school district were a private sector business, they’d be out of business by now.  It took me 4 emails, (the last one threatening “due process”) to actually get this lady to respond to me.  When she did respond, she copied someone on the email, apparently the ONLY person who actually CAN help us.

Finally, I feel like I’ve gotten to the right person, but the question remains: how come it took me 12 emails, 6 phone calls, two threats & 5 months to get their attention & finally get to the ONLY person who seems to care!?!?  That’s totally unacceptable to me.  Upon further investigation, I found that I actually DO have a legal case against the school district because they failed to do something that was outlined in our IEP. But guess what?  Due process can cost up to $29,ooo.  Guess what else?  We don’t have that kind of money.

I looked into hiring an advocate, (basically someone who can guide me through the process,) $350- for a 1-hour consultation, (to just sit down and discuss the situation.)  Then a $900 retainer and we’d be billed at $150/hr against the retainer. Um, WOW.

So they get one last chance to rectify the situation.  The only reason I’m giving them one last chance is because the woman who can help seems like she genuinely cares & immediately took control of the situation.  If I cannot get this resolved with her by the end of this school year, well then I guess it looks like we’re going to have to plunk down $350 to talk to an advocate.  Sigh.  Wish me luck!!

Some Days, Being A Mom Is Hard …

There are lots of times I don’t think I’m cut out for this gig.  I think that it takes a special person to be a mother, and an even special-er person to be a mother with a child who has Aspergers, (or any spectrum disorder, really.)  And I don’t know why in the hell the Universe thought that I was a good candidate.  I have trouble controlling my temper, and patience isn’t my strong suit … especially during a certain time of the month.

I loathe losing my temper – it makes me feel like an awful mother & a terrible role model.  And you’d never know by looking at him that The Boy has special needs & requires extra attention and patience, but he does.  And sometimes I forget that.

I can’t understand why when I explain to him that our cat just got home from surgery and we need to be extra nice & gentle with him, and not to stomp near him, or chase him, that The Boy can’t just listen to me & understand this. I explained it 3 times in the car and reiterated it twice when we got home.  But, it’s like it goes in one ear and out the other … well, either that he just doesn’t care.  I don’t know.  I mean, he’s three years old, he can’t be that diabolical.

But he seems that way sometimes … especially after he chases and stomps by our poor cat who is totally disoriented from being sedated all damn day.  And The Boy just laughs when I flip out and send him to his room, and then he refuses to stay put.  That’s when the things escalate: I start yelling & The Boy starts laughing manically.  And let me just explain to you in case you’ve never been so upset at not being understood that you’re seeing stars, being laughed at is NOT cool.  It only makes you more incensed.  And you forget that you’re dealing with a 3 year old with Aspergers … or maybe that’s just me.

Sigh.

I’m sure the neighbors were one digit away from dialing child services.  I am not proud of these moments.  And yes, I’m admitting that it’s happened more than once, and that brings tears to my eyes.  I wish I had the patience that I see other moms exhibit.  I don’t know why I’m this way, but I hate it, and I feel like every day I’m telling myself that ‘tomorrow’s another day’ and another chance to ‘start over’ and be more patient with him.

And then, there’s the dark moments like the one I’m having now, where I think … This Boy deserves a better mom.  One who never yells, never loses her temper, and always exhibits understanding and patience & never ever loses her cool.  Do they exist?  They must, right?  Because I don’t hear any moms readily admitting they, too, have a less-than-stellar parenting moment.  Or maybe I’m just this over-achieving perfectionist who doesn’t realize that all moms lose their cool every now and then.

I feel like I’m the worst mom in the world right now.  Or maybe it’s just my PMDD gripping my heart & I’m being too hard on myself … Is it time for wine yet?  🙂