Monthly Archives: August 2011

Home Sweet Kindergarten

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He started Kindergarten today.

My baby.

How unprepared I was for this emotion.

I kind of figured that since he’d been in therapy and “school” since he was 18 months it wouldn’t phase me so much.

Also, you know how when you are pregnant you think about how you are going to have a baby.  Not a 5 year-old, a 16 year-old, a 30 year-old?

Right.  So I was going to have a kindergartener.

That’s me.  Eye on the prize.

Don’t look a second beyond.

I plodded through my summer.  Arrogant as can be.  When someone would ask if I was ready for Kindergarten I would say the obligatory, “Oh, I’m sure I’m not.  But he’ll do great.”

I didn’t think about it.

So on Tuesday we went to the Open House night.  We already knew his teacher from the IEP meeting and a visit last year.  But it was nice to get re-acquainted.

There were like 794 other kids there.  (This number is an estimate only, of course.)

I immediately felt anxious.  But it was so safe in Ms. E’s room.  So safe and welcoming that I just wanted to stay there all night.

I couldn’t stay though, because we also needed to visit the “other” class.  The general education Kindergarten class where Everybody’s Boy will be spending part of his time.

Okay.  I hadn’t thought about this part of the evening.  I hadn’t thought about any part of the evening except that there is an ice cream parlor nearby that also sells Veggie Dogs and that sounded like a really good dinner.

The “other” class was huge.  It was so busy and full of kids – that all seemed so much bigger than our boy – and their parents and siblings.

The speech pathologist was there and tried to introduce him to some of the kids.  He retreated.  Then he went to the book corner and began organizing the duplicate copies of Dr. Seuss books.

And I…I cried.  My eyes welled up and it was instinctual and uncontrollable and yes, ironic considering what I posted earlier in the day.

Kindergarten is like some serious business.

P is all like “The puppets!  The puppets!  They’re creepy.  I don’t like them!”

Admittedly they were a teensy-bit creepy.  Kind of like those church play puppets?  You know that you know what I’m talking about.

But whatever – I took my cue and we excused (or was it excised) ourselves – back to Ms. E’s room.

Back home.

Eventually we decided to bail in lieu of ice cream (Veggie Dog FTW) and I managed not to sob too obviously in the hallway.

Today was our first day of school.

First of all.  There is this.

 

 

 

 

 

 

 

 

 

“I know, right?”

I did cry today.  Not when we left him with Ms. E, but when we were sitting at Kindergarten Orientation.

I get emotional in situations like that – momentous group kind of milestone things.  I also think I was a little bit overwhelmed by all that Kindergarten is (or is supposed to be) and how the information I was hearing would relate to my little boy’s experience.

I know it’ll be different.

But that’s okay.  Good even.

The sadness passed.

I ate a bagel.

The two may or may not have been related.

His day was awesome.

Cause he is awesome.

When we picked him up today, I asked how his day was.  After some probing (to get more than “good”) he told me that he loved Ms. E’s class and he wants to live there forever.

I totally get that.

Were home.

It’s okay to not always be okay…

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Periodically I am asked to talk to providers or students on what it’s like being a parent of a child with Autism.

It’s not because I’m a particularly eloquent speaker, or that our story is all that extraordinary (it’s far too common unfortunately), or that I can offer any profound wisdom.

Nope.  It’s probably because I always say “yes”.

When these speaking engagements are panels I get really nervous.  Not about my part.  I’ve done so much public speaking that I barely even think about popping a pink pill first.

It’s about the other people on the panel.

Specifically, the criers.

Let me preface this by saying I am the most empathetic person ever!  If you stub your toe in Bangalore I wince for you.  I’m all about the interconnectedness of the human psyche and what not.

For realz.

Oh but crying strangers are awkward.  AmIright?  Especially when you have a room of people looking to you for your compassionate response.

I’m all like “Um…here’s the napkin I spit my Juicy Fruit in before the panel started.  You wanna dry your eyes?”

“Please don’t reach for my hand.  Please.  Oh please stop crying.  I will totally buy you a new car or a vacation to the Swiss Alps or whatever you want if you would just hold it together  for another 8 minutes.”

I’m a total bitch right?

Once, I tried to lighten the mood at one of these panels.  I have a very sardonic sense of humor that apparently 87% of like anyone doesn’t get.

I patted the crier’s knee and announced to the crowd that I wasn’t going to cry because I was way too heavily medicated to cry.

Awkward silence.

On the few fortuitous occasions my friend Jen has been on a panel with me, I beg her to 1) sit next to the potential crier (she’s a much better human being than I am) and/or 2) pinch me so I can cry.

She won’t do the latter.  That’s okay though.  If she can run interference on the first one, then the point is moot.

Of course, Jen isn’t always there.

A few weeks ago I did a panel with Gus.  It was his first.  He knew about my crying phobia.

No one cried.  I, of all people, actually came close when talking about our decision not to have another child.

When we left for Chipoltle (I had to bribe him with something to get him there) we talked a bit about the panel, about Everybody’s Boy, and Autism.

The conversation went something like this:

“I’m so glad there wasn’t a crier today.  I so was not on my game to deal with that.”

“You almost cried.”

“Yeah, but not really.  Don’t you think it’s strange that I’m so well-adjusted?  I mean, I never really grieved the whole diagnosis thing.”

“Right?  Never, huh?”

“I mean it wasn’t a walk in the park but I didn’t have any huge emotional fallout.”

“You mean other than not eating for a year and ending up in inpatient treatment for an eating disorder?”

“Well yeah,  I mean,  there was that…”

Wow.  Did I truly never equate the two?  Have I really been that deluded?

It’s two and a half years since that lowest point.  I’ve come a long way.  I’ve learned to recognized that it’s okay to not be okay all of the time.  I know now that the grieving process is much more complex than I previously imagined.  I’ve found so many things to celebrate.

I’m sure it would’ve been a healthier journey to be one of the “criers”.  I admire them for not repressing emotion the way I so instinctually did (and do).

But I still hope I don’t have to sit next to one next time I’m on a panel.

 

The devil is in the detail

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Cursed anxiety.

It’s not just nerves, you know?  Having an anxiety disorder is a lot more complex than worrying.

I wish worrying were all it is.

It’s a gripping chest-tightening, breathe-shortening, attack on your soul.

It leaves you functionally paralyzed.  Disoriented.

Weak.  Insecure.  Skeptical.

I cannot make the simplest choice.  I remember several years ago, when we lived in Florida, walking around Target with two small make up boxes in my buggy.  One had butterflies on it and the other flowers.  Both were under five dollars.  I perseverated over the merits of each (identical, mind you, except for the pattern) for over an hour.  I finally called my mother and asked her to choose.  She chose the butterfly pattern.  In a fog I purchased it and took it home.

There I stared at it for some time.  Wondering how something so inconsequential could cause me such stress.   Wondering if I should go back and get the other one instead.

I had no idea it would get worse.  I had no idea that just a year later it would be agitated by the realization that my world was spiraling out of control.  

By the words, “Your son has Autism”.

Getting lost in details is still my biggest albatross.  I can conceptualize these grand ideas, but when it comes to implementation, my sights are so set towards perfection that I lose sight of the big picture.

It’s why I don’t write more often.

It’s too easy to get stuck in the art of articulation and lose sight of the catharsis of writing.

When I can focus, I’m in overdrive.  I must finish my task.  I must do it right.

It must be perfect.  There is nothing less.

Interchange “I” for “it” and it makes a lot more sense.

So when I fall.  It’s really far – and the landing is really hard.

Recently I fell.  I missed perfection by a mile.  So I just wallowed in self-pity and destruction.

Now I’m trying to climb back out of the trenches.  Trying to achieve moderation.  Not getting hung up on the details.  Not aiming to fail.

We had four days without Everybody’s Boy this week.  Or first time alone in eons.  I planned a project.  I wanted to repaint our bathroom.  I also needed to overhaul the house and give it a good cleaning/decluttering.

Ever obliging, Gus made the trip (and subsequent four) to Home Depot with me to get supplies.  The project should’ve taken two days at the most.  But I got stuck.

I got stuck touching up the white on the baseboards.  I fixated on cleaning the walls and finding the right matching paint to touch up one spot from a hole we’d filled with Durabond.

By the time I stepped away from my bender of unimportant “side-jobs” there was less than 24 hours to do the house.  I worked until 2 hours before the boy arrived home.  It was/is perfect.

Then the anxiety.  The oh-my-god-how-is-it-possible-I-squandered-four-days freak out?  The list of things that didn’t get done.  The realization that school starts next week.

The reality that I have schedules to firm up.  Six days a week worth of therapy appointments to manage. Kindergarten.  An almost full-time job.  A husband going back to school.  Bills to pay.  Appointments to make.  Groceries to buy.  <Gasp for air>

What in the hell was I doing instead?

Touching up baseboards.

 

 

 

 

 

The not at all poetic post

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I can’t sleep.

Blame the two-hour afternoon nap, if you will.

I don’t think that’s it, though.

I can’t sleep because my mind is racing with “grown up” decisions that have to be made.   For the life of me, I cannot find a grown-up anywhere to make them.

Peter starts Kindergarten in three weeks.  I’m terrified.  Not because his teacher isn’t the most amazing person ever but more likely because I cannot believe Kindergarten is here.  I can’t believe it’s the last big milestone I imagined for my son, when he was born I thought of his first steps, his first words, and his first day of Kindergarten.

None of those things really happened the way I imagined them to.  First steps, delayed.  First words, painstakingly delayed.  And now, first day of Kindergarten – in an Autism classroom.

I tell myself he’s where he needs to be.  That’s he’s not ready to be thrown into a mainstream class, that the team and Gus and I made the best decision.  We have so much support for this.  Our family, our friends, Peter’s school therapists, his private therapists…everyone supports us in this.  It’s just that ultimately, Gus and I have to make these decisions.

If we are wrong we have to live with the repercussions and the guilt.  We have to be responsible for ruining our precious child’s life.

Sure, that’s pretty dramatic.  It’s Kindergarten, I get that.  But you know, I’m feeling pretty dramatic about it.

We’ve had such a disaster with trying to find the right Occupational Therapist for Peter.  It’s been a nightmare.  We love the therapist that he has had for the past three plus years, but (and who could blame her) she’s not taking Medicaid anymore.  So we tried to go elsewhere.  The first place had us on a waiting list for two months and then the therapist saw him one time and determined that she was concerned about safety because she had just found out she was pregnant (insert huge eye roll and sigh here).  So he was offered another spot on the waiting list which I was so disgusted by I didn’t take.  So I took him to another place, where I just wasn’t thrilled with the militant style of the therapist all the while Gus’ parents private paid at our original therapist just to maintain some kind of normalcy for him – because “kids with Autism, they kind of need that.”

Now we are in a holding pattern.  We have to choose if it’s better to take him out of school early one day a week to see our awesome OT, or roll the dice again at hope we get another Medicaid provider that can fit us in (no one has after school hours) and that he won’t scream and cry “don’t make me see the monster” on his way.

Gus is going to school soon.  It’s been a very up and down time with all of that, but I believe it’s going to work out.  I’ll spare the details (since really it’s his life and he doesn’t write the blog) but he is going to begin an EMT/Paramedic course of study in January.  I’m really proud of him for not getting discouraged through this whole unemployment nightmare and for being the most awesome Daddy like ever.

But you know, it’s still not easy living on unemployment and my part time income.

I think I’ve become depressed.  I’ve withdrawn socially (even more than typical) and I don’t even want to go out of the house.  My anxiety is pretty bad too, and adding meds for depression just exacerbates the problems there.

I love my yoga but finding the time, money, energy for it has been impossible.  Not to mention absolutely being disgusted with the current state of my body – well, I’m slacking.

I’d love to go for a walk, but it’s oppressively hot and I hate hot.  So I’ve found myself much more sedentary than I’d like to be.  Constantly in a fog and unable to push through the simplest of tasks.  When I do have a burst of clarity or energy I give it to my work since I can’t let myself fall behind.

I “forgot” to pay several of my bills last month.  The house is hopelessly disorganized.  It’s not even about being “clean” at this point.  It’s just messy and I want to donate everything and start new like I used to in the good old two-income days, but I can’t because we can’t afford new or even used.  I want to toss my size 4 wardrobe.  I hate it.  But I can’t help hoping that some day I’ll fit into it again.

Probably not anytime soon since I basically ate an entire box of Nutty Bars yesterday.  Breakfast, lunch and dinner.  I think I had some sushi in there somewhere.  Or maybe it was Cocoa Pebbles.

Ironically I saw the doctor for my annual check up and I am completely healthy.  My cholesterol wasn’t even high.  I was so hoping she’d say something that scared me in to action or that she’d hand me a prescription for a magic pill, or maybe tell me that she was sending me for some miracle surgery…

Nope.

Exercise and eat better and those pounds will just fall off.

Here is where I would usually go into a tirade about how exhausting it is to be the fat girl who has suffered from anorexia for the better part of her life and has been every size between 2 and 20.  I’d probably say something else about how my metabolism is so hateful to me now that it’ll never work with me no matter how I tried to lose weight in a healthy way.

But I won’t, after all we don’t need another post about all that mess.

Still, I do detest the way I look and feel.  I know that it’s a big part of this whole depressed limbo I’m in.

I find my solace in curling up in bed each evening with Peter (we still co-sleep, judge away) and watching Dora the Explorer and Blues Clues while he falls asleep.

Oh but there is a ray of sunshine.  Our Peter has started seeing the most wonderful therapist.  Her name is Katie Brady and she is absolutely amazing.  We have the privilege of knowing her awesomeness from friends and from TEACCH.  If you are in the triangle and looking for someone to work with your child (or you and your child) on developmental, emotional, social kind of stuff…I highly recommend her.  Click on her name to see her website!  I’ll also add her to the blogroll.  Tell her Everybody’s Boy sent you.  ;-)

So that’s kind of the other stuff going on in my life.  The not so poetic things I don’t really share.

It’ll get better.  It always does.  In the meantime you know where to find me, except during nap time, I really hate to be disturbed.