Tag Archives: Asperger’s

Catching up…..Life as a Badass

Dear 23 Readers:

Oh my gosh, it’s been a long time since I sat down to write an update. I’ve been thinking of you, though and decided today is the day to reach out. There’s been a lot of change lately – nothing negative – just different. My mom is selling her house and that’s very emotional for all of us. It’s definitely time. She and Dad bought it 27 years ago and it is the “stable” home my nomadic children have known. We’ve moved so much and 1141 N. Nielson has been the port in many storms. We had Easter dinner at Mom’s and realized it will probably be our last holiday in the house. Matthew (#4) and I sat by the pool and started to talk about it but tears threatened and I am way too macho for that crap. Mark and I found out, recently that our good friends are moving back to Boston due to a job offer. Then, at work, we promoted my assistant manger to store manager at a different location. Which means a promotion for my key holder and hiring someone new for her position. Which means I have to talk to and play well with others I just met….. See? All good stuff, but change in the people in my peripheral and that always freaks me out. <sigh>

In other news, we camped Easter weekend with the fam. Part of it anyway. Loran (#3), Matthew, Kache (grandbaby) and Mark and I headed out for the last desert camp of the season. Lots of fun. A little too much tequila Saturday night after Kache fell asleep. Matt played guitar and I may or may not have sung “How Great Thou Art” acapella, at the top of my lungs, around midnight.

#momsdrunkrealizesitseasterandhastodosomethingreligious
AKA
#youcantakethegirloutofthechurchbutyoucanttakethecatholicoutofthegirl

Kimmy(#2) and her husband, Matti (note the i at the end of the name as I also refer to #4 as Matty and we try not to mix up the two. It’s worth noting we also have two Brandons – #1 as well as my nephew Casey’s husband, Brandon – differentiated by the spelling of their middle names Jeffrey for #1 and Geoffrey for nephew Brandon or by referring #1as Bubba or to Nephew as Nephew or Uncle Mooney, referencing somewhat dated family redneck jokes. Don’t ask.)

What the hell was I talking about?

Oh! #2 and Bodington went to England on a vacation I am openly envious of. They’ve been all over the place – South Africa, Ecuador, Japan – and that’s lovely, but England is on my bucket list and they got to go to Hogwarts and have high tea and see the Queen and Prince William. I am jealous.

It’s later now.

Pops left for New York (more change). Mom flew with him and will hang with family and friends that still reside in the frozen north. Her house sold, things are moving along nicely at work and my assistant moved on to his own store. <sigh>

Due to all the above mentioned change – not to mention the state of the world – I’ve been somewhat grumpy and have been making an effort to take myself out of a negative state of mind. I tend to be, by turns, cynical, annoyed, snarky and bitchy simply out of habit that is exacerbated by watching the news or Saturday Night Live and getting the latest Trump update. The negativity is like a cassette tape that’s on repeat in my head, when basically, I’m a very nice person.

Ask around.

What got me thinking about my own state of mind was Brandon’s. Admittedly, his is a bit of a challenge to me as he is Mr. Spock and I am a cross between my Aunt Gertrude, Karen on Will and Grace and the old bat Shirley McClain played in Steel Magnolias.

Don’t ask.

Anyway, one of Brandon’s favorite comedians is George Carlin. I get it. He was a funny guy. Sardonic, ironic, brilliant, fast and – largely negative. While I understand it is a comic’s job to point out the irony, etc., in daily life, depending on who they are and what their style is, things can get really dark. Carlin’s style fell into that category. I mean really, really bleak. So if Mr. Spock is listening to this guy who speaks the “truth” and does it loudly and in a somewhat angry voice, how exactly is that going to affect Mr. Spock?

Well, I don’t know. But it’s not good for Brandon.

For instance, Brandon is Agnostic. Fine. It’s his choice and frankly I don’t think God cares either. I mean, really, if God is all powerful and good and whatever, he knows Bran’s mind and heart and could really not give a shit less if #1 goes to church, a baseball game or the living room couch on a Sunday morning. However, Bran has been getting adamant about it. Even a little belligerent. And I’m like, “Dude, what? Okay. You don’t believe in the religious God. I’m good, and seriously, Supernatural is about to start. Please don’t get in the way of my Sam and Dean time.”

Yesterday we were on our way to an appointment in BFE and Bran brought his George Carlin CD. I listened for about 15 minutes, turned it off and looked at my son.

“Jesus, no wonder you’re half crazy over this crap,” I said. “You’re living your life based on the gospel according to George freaking Carlin.”

Thank God I know how to be subtle.

“You may not believe in the stuff written by whomever claims to be the scribe of God in any given part of the Bible, but please please give the same discriminatory once over to Carlin’s material. This is his schtick. You get that right? He was apparently one angry fu—.”
“Mom!”
“Sorry, but jeez! All this time I’ve been worried that you’re gonna end up punching pro-life marchers in the forehead or telling little old Mother Theresa look alikes that they’re full of sh-uh-baloney because you don’t believe so much and it was just a stupid recording of George Carlin warping your good sense!”
“Well,” said my completely unimpressed by my rant son. “If you look at things logically, he’s right about almost everything he says.”
“Perhaps if everything was black or white, but the gray areas count, Bran.”

There was more, but it got me thinking about what I listen to and what floats around in the space between my ears. In Awakening To Your Life’s Purpose, book I read and re-read endlessly, Eckhart Tolle talks about the ego and the recording it plays in our heads. A constant diatribe of discontent and negativity. We’re always something whether it’s annoyed, irritated, entitled, deprived, anxious, resentful, victimized – made up stuff that keeps us enslaved to negative feelings. Some of it, of course, can very well be rooted in real events or needs and wants, but most is habit. Think about when you’re driving and someone zooms in front of you. It startles you and you immediately decide that person did it on purpose or without any thought for you so they are suddenly the enemy and you can call them a worthless ass hat or perhaps a douche lord. Or a freaking jerk or a f&^$ing a$$hole…….. I digress.

I read something in the Buddhist Bootcamp blog that said (paraphrasing) You are not stuck in traffic. You are traffic.

Sing it with me : e – PIPH – any.

Of all the things that annoy me, it annoys me most that I am them. (That one is mine)

My point is not to demean anyone’s space. We are where we are. And I would never suggest that anxiety and/or depression are a figment of imagination. I’ve been there with both of them and for whatever reason they might exist for someone, they’re real as hell.

So are the voices.

Just kidding.

For the daily, though. The recording that plays over and over – maybe we could change it up. It’s surprisingly easy to do. The first step is to realize your ego is a separate entity from who you truly are. Your ego believes the guy cut in front of you in traffic ON PURPOSE to RUIN YOUR DAY. Sanity tells you he, like you, is just trying to get where he is going in one piece and he did a bone-headed thing. Maybe today you can refrain from telling him how many ways you’re going to eff him up when you get a hold of him the next time you see him on the freeway. Perhaps when someone walks into your store to ask directions or for something you clearly don’t sell you can summon a smile, even though they’re the 73rd person to do so, and give them the information they need instead of the finger.

Do you get where I’m going? Away from the edge and today I’ll take you with me if you want. Tomorrow I may be calling you for a lift.

Next up: Depression and Naked Disco Dancing.
……………My second cousin, once removed asked for advice, via her Facebook page, regarding something she could do to channel some extremely negative energy and (as I read it) sort of clear her space. I didn’t answer at first because, though I’ve come to think a lot of her and I adored her grandmother (my first cousin, once removed), I don’t know her well and it felt presumptuous to offer said advice.

I know. She asked. But my answer was a very personal one and it felt strange putting it out there.

Like I was naked.

Then she posted again, expressing surprise at the number of constructive suggestions she’d received when she sort of expected irreverence. SC chose a couple of the suggestions and shared her plans to follow through on them, but there was no irreverence. No silliness. No outrageous behavior to upend the blues. I responded thusly:

You wanted something irreverent? I’ve got it, I think. During times when life overwhelmed me, when sadness curled me into a fetal ball of fear under the blankets in my bed, behind closed and locked bedroom doors, my husband – whether reacting from concern or just not knowing what the hell else to do – marched in, turned on Donna Summer or Gloria Gaynor or The Bee Gees and told me to dance. I said “I’m naked under here.” He said, “Perfect! It’s pretty hard to take anything seriously when you’re dancing naked to ‘I Will Survive!'” I protested. I bitched. I cried. But he wouldn’t take no for an answer. So just to get rid of him I danced. Naked. To disco. There was some serious stuff bringing me down. Those dances became my fuck you to losing my mind to them. Irreverence matters. Do the constructive things you’ve mentioned but grab some irreverence as well. That’s just for you.

Just for you.

And, so you see, I was naked. And it was frightening. Not that anybody saw – except me. And nobody cared – even me – which was weird because we all know exactly how vain I used to be.

Shut up.

When I danced I discovered a kind of freedom that I hadn’t known since I was a child. It was a letting go of energy that children know instinctively how to release. As we grow into adults and buy into the trade offs that life inevitably brings – you know – make the deals to get the stuff, I think we tie up the instinct piece by piece and sell it, accidentally, for shit we never needed in the first place. It takes a level of consciousness of which most 12 to 30 year-olds are unaware to say no more often than not. And, frankly, I thought I’d said no. A lot. I thought I was pretty Zen. However, I forgot – or more likely – ignored the fact that pretending the deals I was making weren’t, in fact, deals and stuffing fear and anger in my “I’ll deal with that tomorrow” file like I was Scarlett O’Hara isn’t the same thing as being fully centered.

As if “fully centered” actually exists on this plane……

Adulting is hard. There’s no way around it. I knew it and I believed it. I just didn’t make room for it. And so, in that first summer and fall we spent in New York, when I was away from my two oldest daughters and my mother and Mom had cancer and I was still reeling from the loss of my father and I hated my job and Matthew hated me because I’d gone back on my word never to move one of my children from their home during high school and all of that didn’t even scratch the surface of the guilt and grief I was carrying from years of deals, I curled up in my bed one day and thought – well I stopped thinking. I was afraid to think. Or feel or move. I was afraid.

Which is where Mark and Donna Summer came into play.

It wasn’t the last time he found me that way. The first time wasn’t the last time I danced. And I still make deals. But I make them more fully aware of what I’m doing. There’s less idealism involved but there’s also less fear. I traded the need to have everything in its place for learning to live in the moment and be thankful for it. I traded wanting everyone to like me for liking myself. I traded religion for faith and I traded feeling like a victim to living like a badass.

I know what you’re thinking. Doesn’t she sell sunglasses? Yes. I do. But what one “does” isn’t what makes one a badass.

I dated a guy in college who was, in every sense of the word, unavailable to me. It’s okay. It was my pattern as a commitment-phobe to choose those whom I could not have – which is a story for another time. With the advent of social media, this person and I crossed paths again five or six years ago. It was hey, how are you? Tell me about yourself…… We caught up a little and that was it. Except for one thing. He said to me, I’m happy to know you’ve lived a joyful life.

I hadn’t told him that. I mean, we’re basically strangers and I certainly didn’t reveal anything deep. I had a moment of what does he mean by that? Was I not joyful back then? Is he judging me? Which sounds like pure egocentric paranoia.

You’ve met me, right?

But once I dismissed Blanche – which is what I call my egocentric personality in honor of the character immortalized by Vivien Leigh in the movie Streetcar Named Desire – I was able to take the compliment for what it was. An impression given. My aura. It’s basically who I am. Really am. When I look at the things I’ve been through in my life – the good, the not so good, the horrifying – and know that who I am now, at the heart of it is the same happy, loud, curious, open, joyful being I was as a child and that all of my personalities get out of bed every single morning – THAT makes me a badass.

I’ll bet you just figured out you’re one as well.

It’s been lovely catching up!  I’ll try not to wait so long before sitting down to write next time because I have been known to go on and on………..

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“Do unto others……..” It’s really all you need to know

How do you handle your pathetic life?

How do you deal with your husband, who is cheating on you with your sister

What are you doing about your teen-age daughter who’s been drawing pentagrams on

school walls and hanging out with a bunch of 20-something crack-heads?

Are you still drinking too much and saying stupid things at parties and PTA meetings?

Why are you and your obese three-year-old at Burger King instead of the gym?

Is your mother in rehab again?

Questions nobody would ever ask, right?

Well, questions I’ve never asked.

Never would.

How do you handle that?

What’s wrong with your kid?

Is he retarded?

Is he, like, a retard?

What about your other kids – are they special ed. too?

Will he ever be able to have a normal life?

Is he on welfare?

Did you know he was going to be like this before he was born?

Why did you keep having kids after you found out there was something wrong with

him?

Questions nobody would ever ask?

Wrong.

 

These are some of the questions I’ve been asked regarding my son with Asperger’s.

By supposedly intelligent  – mostly sober adults.

Because I’m always blown away by ignorance, I could never figure out what to say at a given moment, that would effectively put these people in their place.

What do you say to someone who verbalizes stupidity?

Where in the name of Emily Post are good manners?

 

In an effort to enlighten – for my aim is always to educate and/or uplift……..

Well, it is……

I am going to give answers (sort of) and instructions for those who wish to know

and who, in the future, dare to ask.  Though the examples found in here are based on my personal experience, feel free to apply the common sense recommended to situations and people as needed.

 

1)      How do you handle that?  Well, first of all, dumb ass, “that,” is a, “he.”  He is a person.  Someone’s child.  My child.  I spent over nine months pregnant with him and 22 hours in hard labor, trying to convince him this world was a place he would want to be.  I, “handle,” him with love.  He’s not an issue or a problem or a difficulty.  He’s a human being, muddling through life just like everyone else.

 

If what you were really trying to say was more along the lines of, “I am in awe of your ability to take care of everything you have going, on a daily basis.  I know your row hasn’t been the easiest to hoe and I just want you to know I admire what you accomplish and I’m here for you,” then for God’s sake, rephrase.

 

2)       What’s wrong with your kid?  Nothing – but I can see clearly that you’re an idiot.

 

If what you meant to ask was, “I can see you’re having a bit of a hard time here in the park with your little one.  Is there any way I can assist,” then know you can assist if you pull your head out of your rear end and give the mother of the child you don’t understand a smile that conveys your support and compassion.  Don’t stare.  Don’t whisper.  Don’t pretend like they don’t exist.  Use someone else’s common sense if you don’t have any of your own.

3)      Is he retarded/Is he like a retard?  First, what my child’s disability is, is no business of yours.  Second, your use of the, “r-word,” conveys your total and complete lack of anything approaching compassion and intelligence, which puts you into a category of people I choose not to deal with, for fear of wreaking bodily harm on your stupid ass, thereby landing myself in trouble for performing what was, essentially, a community service but is, in actuality, still against the law.  It’s just a good thing for you that ignorance isn’t a crime.

 

If what you meant to say was….  Never mind.  I don’t even care what you meant to say.

 

4)      What about your other kids, are they special ed. too?  This question has made me stutter when I’ve been presented with it.  You think, because one of my children is differently-abled, it not only makes it okay for you to ask personal questions about him, but opens up all of my children to your judgmental inquiries.  Just so we’re clear, it does not.

 

If what you meant to say went more like, “You have an incredibly beautiful son.  Are all your children so blessed with charm and good looks,” I could answer that with two words.  Of course.

 

5)   Will he ever be able to live a normal life?  “Normal,” as in what?  You have to be more specific when making this particular boorish query.

 

If what you meant to say was, “Will he ever hold a job, get married and have

children,” those are still completely thoughtless, rude questions and come under the

category of none of your damn business, to whomever they are posed.  God, you’re

ill-bred.

 

6)       Is he on welfare?  When my kid runs for political office, you can ask to see his tax returns and birth certificate.  Till then, his means of support is private.

And again, I don’t care what you meant to ask.

 

7)      Did you know he was going to be like this before he was born/ Why did you keep having kids when you found out something was wrong with him?

 

This question, for some reason, brings to mind an argument my older two daughters got into with a girl in our neighborhood when they were about 12 and 13.  I don’t know what the disagreement was about originally, but it degenerated into insult hurling and the last one hurled at my girls called into question the exorbitant number of children in our family and the direct correlation my inability to keep my, “legs together,” had with the body count.  The neighbor girl’s statement was hurtful and ignorant, though definitely forgivable, taking into account the fact that she was 13 and my girls had just said something equally nasty to her.

The questions listed at #7 are at least as hurtful and much more ignorant, seeing how they’ve always been posed by adults.  Just for the record, I did not know my child would be born with Asperger’s, though it wouldn’t have mattered if I did.  I would still have had him.  As for the second question, there is nothing, “wrong,” with my son.  And each of my children is a soul, born into this world to live out their divine path.  Lucky for me, a part of each of their paths brought them to me.  I would not be who I am without each and every one of them.  Nor would they be the amazing people they are without each other.

If what you meant to say was something like, “You’re a good mom.  Mark’s a good

      dad and you have been very blessed with your five children,” you would be extremely

right.

So, get it right.

When you meet, or observe someone with a child who is differently-abled, be kind.  Get

to know them and their child, if there is the opportunity, like you would anyone else.

Don’t ask stupid questions.  The old axiom that the only stupid question is the one left

un-asked is not applicable here.  There are, in fact a LOT of stupid questions.  I’ve listed

but a few.  They’re for reference.  Don’t use them and do not make up your own.

 

Everything you need to know regarding these sorts of situations is contained in The

Golden Rule.

Isn’t it always?

 

“Do unto others as you would have them do unto you.”

 

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The Annals of Duh: Medications can produce side effects?

To be included in the annals of Duh:

When you go on a prescription medicine, read the ten page listing of side effects and pay attention lest some of them actually happen.

Over the past year, year and a half, Number One Son has gained a substantial amount of weight – at least 25 pounds.  He’s also been testier than hell.  This happened gradually and, though noticeable, not so much so that we questioned the changes.  Around Christmas, however, Mark and I had a chat with him regarding his burgeoning Santa belly.  Needless to say, though we tried to frame it in a, ha ha, this is funny isn’t it, kind of way, the discussion did not go over well.

I told you.  He was grouchy as ass.

We had to ask questions about the amounts of food he might be ingesting while not at home or possibly hoarding and consuming late at night, because Aspies have a tendency to run on the Obsessive/Compulsive side of life and impulse control can be a problem.  We talked about the dangers of belly rotundity – especially for him because of the prevalence of diabetes on his paternal (biological) side of the family.  There were suggestions made about ways to incorporate more exercise into Bran’s day.  He rides his bike everywhere for transportation, but, at that point, it didn’t seem to be making much of a difference.  We discussed cutting down on sugary/caffeinated drinks and how to incorporate more water and healthful (but tasty) foods into his daily routine.

It wasn’t the worst time I’ve ever had.

I’d rank it up there with having that impacted wisdom tooth removed that time – except they gave me good drugs.  I didn’t even get a beer this time.

You just don’t know stubborn unless you’ve dealt with someone with Asperger’s.

Have you ever seen one of those old westerns where someone is trying to get a mule off its ass by pulling on the reins and harness, but no matter how hard they pull the mule does – not – move?

With an Aspie it’s like pulling on 20 of those mules at the same time…with one hand…..that’s broken……….and in a cast.

By the time we were done talking with Brandon that day, I was sweating, had a headache and wanted nothing more than to take a couple Advil and hit the sack, but it was 9:00 a.m.

Mark just stared off into space and shook his head for so long I thought he’d developed a twitch.

In spite of his initial resistance, Bran made significant efforts to change his habits.  Even he was becoming alarmed by his waistline and the extra chin he’d sprouted.  We monitored the sodas and sweets and he tried to make sure he ate meals instead of potato chip and jelly sandwiches at midnight.  He started walking the familial dog twice a week, continued to ride his bike and even upped the daily mileage.

It made very little difference.

In February, Bran’s new neurologist wanted to switch Bran’s seizure meds, (seizures can be another byproduct of Asperger’s).  He went from Divalproax (generic form of Depakote) to Keppra.  When we asked why, the doctor said that Divalproax can cause hair loss, weight gain and diabetes.

DingDingDing!!!

Yes, you’d think a bell would have gone off in my head – and it did – it was just the wrong one.  I heard diabetes and had a little panic attack, thinking of the previously spoken of family history.  The hair loss thing didn’t worry me at all.  Bran could donate hair monthly and still have a full head.  I had already decided from whence the weight gain came and it didn’t dawn on me to put it down to a little tiny pill Bran took a couple of times a day.

The transition to Keppra was done over a period of about 5 weeks and it went smoothly.  I noticed that Bran was slimming down and congratulated him on his restraint.  He shrugged.

“Not really doing anything different than what you and Dad drilled into my head at Christmas,” he said.

Well, glad I could be of service, son………

A couple of weeks ago, I walked by Bran as he was hiking up his pants.

“Stupid things won’t stay up anymore,” he said.

Hey……..  Now that he mentioned it, the jeans were hanging on his hips in a bit of a gangsta way.  Bran does not do low slung.  Back when son #2 was wearing his jeans around his knees, held up only by his boxers and the Grace of God, I begged Brandon to take about half a page from his brother’s book.

“Just let your pants sit on your hip bones,” I said.  “That’s why God created them, so your jeans would have a place to rest.”

“It’s not comfortable,” he said.

“Well tell me how it’s comfortable having your pants cinched up under your arm pits.”

They weren’t, of course, up under his arm pits, but they were too high to be fashionable.  It’s an argument Bran and I have been having since he was old enough to put his clothes on himself.  When his sisters were old enough, they started arguing with him too.

“Come on Bran,” they’d beg.  “Just wear what we tell you, how we tell you.  You’re tall and skinny and stuff looks great on you.  Then you hike it up.  You look like Steve Erkel.”

Nothing we said ever convinced him to go all male model.  I stood there looking at him this latest time and thought, crap, all I ever had to do was buy his pants a size too big.  Then it hit me.

“You’ve lost a lot of weight,” I said.

“Yeah,” Bran said.  “Just like the doctor said.”

“He told you you’d lose weight?”

“He thought I looked bloated and that the Divalproax was probably the reason.”

“I didn’t know that.”

“He told you.”

“When?”

“When he told me.”

Ding!

(Other bell)

Divalproax can cause weight gain!  Ohhhhhhhhhhhh!

Yes!  Yes it can!

I was so excited to talk to Mark about my scientific discovery.

“Well, yeah,” he said, when I reported my findings.  “He told me about that.”

“Who?”

“Bran.”

“When?”

“When the doctor switched him and I asked why.”

“Was I there?”

“Uh, yeah.”

“Huh.”

“He’s easier to get along with too,” Mark went on.

“Who?”

“Our son.” He gave me a look.  “Haven’t you noticed.”

“Well yeah, but I kind of put that down to the volunteer job and getting out of the house and walking Lily.”

“I’m sure that helps,” Mark said.  “But Bran has been really, really cooperative and – and nice.

He was right.  Bran had been funny, pleasant – lighthearted even, of late.  His AH moments (to give a clue, AH does not stand for, “ah ha.”  Think about it) had been much fewer and way further between.  It was almost creepy, how nice he’d been.

“Did the doctor say this would happen,” I asked – like I hadn’t been the one at the appointment.  It wasn’t as if I’d remembered much to this point.

“No, but I looked it up on line.”

Of course he did.

“Turns out the stuff Bran was on before can cause moodiness, mood swings and just generally disagreeable behavior.”

This I should have known.

Years ago, when daughter #2 was about 10, she was having migraine headaches.  The pediatrician started her on Depakote.  About three days in, she went from sweet little girl to mini-bitch from hell’s bad side of town.  In a panic, I stopped giving the meds (which I never should have done cold turkey), and within a couple of days she was back to normal.

I just never made the connection between that and the way Brandon behaved.

But I might have – had I what?

That’s right.  Read the list of possible side effects enclosed with the Divalproax.

That piece of paper is not just a bag stuffer.  It’s an important piece of medical information that we, as consumers, patients, parents and advocates need to take seriously.

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Pardon us, Our Aspie is showing

I’ve tried before to write about what it’s like to raise a child with special needs.  Never could do it.  I think, possibly, it’s because I never had anyone who was in a similar situation, to compare notes with.  Nobody who would consider some of the situations my family and I found ourselves in familiar.  I was always so busy trying to be the perfect mom for the kid who needed more as well as for the kids who are his siblings, and affected – negatively and positively – by him and his needs.

I’ve never seen the humor.  I’ve never seen the irony.

Too busy searching for the why and holding onto hope, while, in the back of my mind, a record played over and over and over and over and over and over and over and over and over and over……….

       This is your fault.  This is what you get.  You are responsible.  You asked for this.  You are being punished.  Just wait, you will lose them all.  In the end, you will be alone – except for this person you’ve created, and the damage you’ve done to him.

Jesus, does everyone have that voice?

I almost made myself cry just now.  It’s no effing wonder I haven’t written this crap down.  I like to laugh and make others laugh, and to tell you the truth, I’ve never found my son’s disability funny.

Brandon has Asperger’s Syndrome.  It’s a neurological, “disorder,” (I dislike that word), that some consider on the high functioning end of the Autism spectrum.  There’s always debate over exactly where it should fall, mostly due to agencies, governmental and otherwise, not wanting to pay for the coverage these folks need and, if covered under the Autism blanket, could receive.

Like many people his age – Brandon is 29 – he wasn’t diagnosed with Asperger’s till his late teens.  Up to that point we heard ADD – the inattentive kind – Obsessive Compulsive Disorder and Non-Verbal LD bandied about, though nobody ever nailed anything to the floor, other than my very last nerve.

I wish I could count the number of professionals, including occupational, speech and physical therapists, psychologists, psychiatrists, neurologists, pediatricians of every ilk, teachers, and administrators who have poked and prodded my son’s brain, trying in vain to come up with what was, “wrong,” so they could, “fix,” him.  Their intentions were, much of the time, genuine and good, I know.  But they all landed him – and us – in the same vortex of WTF where we started when Brandon was, let me see, four.

These days, if a child is diagnosed with Asperger’s at four years old, his or her prognosis for success is immense.  Asperger’s didn’t even have a name when Brandon was four.  It was some vague research being conducted on old case studies of Hans Asperger’s in freaking Vienna. They simply had no idea back then and as a result, Brandon fell through every single crack in seven different public school systems and two private.

When, in 2001, Mark and I expressed, to Brandon’s psychologist, whom he’d been seeing for a couple of months, our total and complete frustration and grief (yes, grief), over the fact that we’d never been able to obtain a firm diagnosis for our son, which would, hopefully – maybe, allow us to move forward with a treatment protocol, the doctor looked surprised.

“Well, I can tell you his diagnosis right now,” he said.  “He has Asperger’s Syndrome with tendencies toward ADD and OCD.”

And the goddamned angels tried to sing, but all they could do was cry.

“Dr. Smith,” explained to us what Asperger’s was and listed the symptoms.  He might as well have been reading from a page entitled, “Brandon Feldbauer, Inside and Out.”

I wept along with the angels.

Asperger’s…  Autism.

It had been right there in front of us all along.  We knew a couple, when we lived in New Mexico, who had a son with Autism.  I remember the day they told us they thought Brandon was Autistic.  We did check with the school professionals and his neurologist about it, but they brushed it off and, relieved, so did we.  Nobody told us there was an Autism spectrum.  That being autistic didn’t always mean non-verbal and non-communicative.  It didn’t mean mentally retarded.   It didn’t necessarily mean being ostracized by peers and a society programmed to reject what it doesn’t understand.  It didn’t mean everything we were afraid of.

Ignoring what we were told by these people, unfortunately, had led to much of what we feared and dreaded.  Dr. Smith handed us, that day almost 10 years after our friends’ attempt to enlighten us, at least a little hope that we could help our son lead life as a happy, productive, contributing member of society.

Then, of course, we checked in with reality.

Brandon had a diagnosis and that was it.  Not only did Asperger’s cause every, single, solitary person at Social Security, Social Services, the Department of Developmental Disabilities to say, “huh?” when we told them what Bran had, they could barely contain their snickers when we told them it was on the Autism spectrum.  Just so we’re clear, they weren’t laughing because we said it was on the spectrum.  At that time, they were laughing at the spectrum.

Like Autism counted as a disability.

Nobody actually said those particular words.  Mostly what we heard was, literally, Brandon was not disabled enough.  Nobody could see his disability, therefore, apparently, it didn’t exist.  All we were ever able to obtain for Brandon, in Arizona, was medical insurance, through the state Medicaid program.

That.  Was.  It.

There were programs that would have benefitted him, of course, but he wasn’t disabled enough to get them.  Someone at the Department of Developmental Disabilities actually said Bran would be better off, benefits-wise, if he was, “sitting in the corner, in a wheelchair, drooling.”

I won’t even touch on the myriad of ways that remark offended me, though I went over it with the DDD representative.  Let’s just say I schooled him on what he could do with his opinion, benefits and any wheelchairs he came across that day.

In 2007 we moved to New York State.

The angels and I formed a band.

Where, in Arizona, there was a complete lack of benefits and services for Bran, New York had, if not all of them, then a whole damn bunch.  Through a wonderful place called, Autistic Services, near Buffalo, Brandon’s needs were assessed and his services and benefits coordinated by someone who was not only not me, she knew what she was doing.  He had insurance, food assistance, a job services coach, therapist, social skills instruction, social outlet meetings and various other opportunities.  It was great, but, four years later, we all wanted to come back to Arizona.

The angels kicked me out of the band.

Which is fine.  I wanted to go solo anyway.

Wouldn’t you think, over a period of four years, things would have improved in light of all the research that’s been done about Autism and Asperger’s?  Well, if you did, you’d be wrong.  It’s worse now than it was when we left.

However, as I have no desire to air my litany of grievances regarding the lack of workable social services in the state of Arizona – I mean, more than the thousand times I’ve already done so – I’ll skip to the good news.  It’s a shorter list anyway.

Mark and I found people.

Yep.  Other people with adult children who have Asperger’s.  Brandon found a social group of adult Aspies.  He also found a volunteer job at an aviation museum – aviation is where his passion (obsession) lies.

We’re moving forward, though, God knows it’s not at the pace I would have chosen had I been freaking consulted when all this began.

I’m writing about it now – finally – because I think we can help others who are going through what we’ve been through.  Plus, as usual, I just have to get some of this shit out of my head to reduce the swelling.

Maybe I’ll be able to laugh about it.

Or,

Maybe I’ll just cry less.

 

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