Sunday, January 26, 2014

Hello Autism Speaking! How may I direct your call?

I like to think my family brings a little Autism Awareness to where ever we might go.  Even the most boring errand is a opportunity for a "teachable moment".  I'm usually pretty open about my kiddo's autism because well, it's not he's hiding it stealth ninja style is he?  Sometimes though, I don't want to though.  Sometimes I tired of being the "Autism Information Kiosk".  Sometimes, I just want to buy my generic cold medicine and tampons at the pharmacy and leave.  (Honestly, look at that combo. Do I look like I'm in the mood for a chin wag?)

The kiddo and I head out this morning so I can restock the bathroom cabinet.  He's always down for a ride pretty much anywhere. He has just taken full advantage of my cold induced fog and crampy state by suggesting we get coffee.  Which is really just suggesting he get some donuts.  I fall for the bait.  At this point, I'm just trying to get in and get out.  Once we hit the feminine hygiene aisle, he's on board to get the heck out of there too.  Nine year old boy in this aisle with his mom? Scaring him for life, mother of the year award right here.

We head up to the register and it's our favorite cashier.  She's an older woman, grandmotherly, the kiddo's type for charming.  She rings me up as she tells me all her business as per usual.  (Why she too has the cold that just won't quit) The kiddo meanwhile is off in autism land with the sliding glass electronic doors by her register.  She keeps saying "Hello" to him and he keeps actively ignoring her.  Woman, there are doors to make "Wosh!" here.  We don't have time for your chit chat.  He's flappy.  More so than usual I guess.  I'm so damn used to it that I often don't even see it much anymore.  All the sudden she starts flashing a stick of gum at him, asking him if he would like a piece.  He keeps ignoring her.  She seems completely baffled how this kid is NOT taking her up on her offer of free gum.

Not thinking where I am I just tell her the truth "He's never had gum." She is stunned.  A kid his age??  I can tell she's eying me up and down.  She didn't have me pegged as a helicopter mom.  In that moment I realize I either have to explain why he's never had gum or pretend that he can't have gum because my delicate sensibilities would never allow such things.  Do I take the time to explain he's never had it because he's never shown an interest?  Do I try to explain the various food and chewing sensory issues that he has? The fact that he's in feeding therapy and for the past four weeks he has been working on eating carrots.  That's right. Four weeks for carrots. Do I even try to begin to explain how completely confusing it would be to offer him something that's he's told to chew but NOT swallow?  That this food item would go into your mouth kind of hard and dry and then become sticky and soft. 

It's in this moment where I just wish I didn't have to be "on".  There is no quick way to explain this.  There is a line behind me and I just want to go home.  I get tired of being the "autism mom".  I'm human.  I don't even want to tell her to google sensory processing issues.  I just want my stuff. Part of me feels bad that I'm not grabbing this chance to educate but the other part of me wants to go back in my pajamas and take my bra off for the damn day. 

I sigh and say "It's really too early for gum", smile and thank her anyway.  The kiddo does one more flap and "Wosh!" of the doors before we go.  One last time she says "Oh it's sugar free Mom!" and I shake my head.  I just don't have it in me today. 

How come no one is ever offering me free wine? :-)

Thursday, January 23, 2014

The Autism Wrestle

As the kiddo gets older, matures and all these therapies that we do kick in, I see more moments of him really trying to work with his autism.  It's kind of like a tango but both partners want to take the lead.  I'm never sure who's going to do the dip and I'm sure that crazy Bruno judge on "Dancing with the Stars" might jump out of his seat at the end of the performance to declare what went wrong, what he loved and how he wants them to really "bring it" next week. (I don't get that.  Where are they suppose to bring it?  They're on the dance floor already.)  Pfft. Anyway,  you might know what I mean.  As challenges come up, I'm not always sure how it's going to go down in this autism house. 

Take the past few weeks with the weather.  Two snow days, one early dismissal and one delayed opening.  All I see when I read that is CHAOS!!  So much schedule chaos.  To the point that I want to cry when I see the school on the caller ID on my phone.  I really ought to get the ring tone that says "LET'S GETTING READY TO RUMBLE!!!!" I found out late Tuesday night that there would be no school Wednesday.  The kiddo was already asleep.  Was I going to wake him up and tell him?  Oh Hell no.  I'd deal with it in the AM, before coffee, before my body even left the bed.  Yeah, just as smart an idea but I don't wake a sleeping kiddo ever. 

Sure enough he comes running in and hops on top of me while I was sound asleep at 5:12 AM to announce it's school time and with my eyes closed still tell him, "Nope.  Not today kiddo.  Snow day.  They canceled it." It's like I'm new here.  Like he was just going to accept that information as is.  I can literally hear the gears churning in his mind.  He leans over and turns on my nightstand lamp and shines it at me like a mob wise guy shaking me down for information.  "NO SCHOOL?!" So while squinting and trying to remember what day of the week it was and what's going on and why am I sleeping with a kosh ball, I try to patiently explain that there is too much snow and how dangerous it is for buses to be out on the road.  That the good news is, he can go play in the snow.  How much fun that will be and how we'll drink hot chocolate and make popcorn and watch movies. 

Then the wrestling match starts.  I see him trying to work out theses changes.  He likes school.  He likes snow but he can't have both.  Can he accept one for the other?  He asks me several times "School tomorrow??" He's got to know the "first and then" of the situation.  I can't blame him. I've set our life up that way.   Then he announces the order of how he wants his day, if he's to accept this new organized chaos into his life.  I "yes" him to most of it.  (Mama has also woken up with killer head cold.  Going out in this is not on my agenda. Not if I can help it)  He then has to inform my husband, the dogs and pretty much the whole block, loudly of the new schedule.  As much as I would like him to just go with the flow and not grill me a thousand times on the changes, I'll take it.  The alternative is non stop screaming for an hour. 

Just when I go to bed Wednesday night, I find out there is a two hour delay the next morning.  I'm not telling him. We'll just deal with it.  The bus is late. Yadda yadda yadda.  The bigger problem, no lunch will be served and it's one of his favorites on the schedule.  Sorry Teacher.  You're gonna have to deal with that possible wrestling match.  He's on your watch.  Assure him there still will be french fries at dinner.  Mama stocked up.   

Wednesday, January 15, 2014

Where are you?

I see it on the time online from parents with kids with autism.  Big declarations of where their kids fall on the spectrum.  High functioning, severe, moderate, diet (no wait a minute. Scratch that last one).  I'm also peppered with questions from you guys where The Kiddo is at too?  Here's the thing.  I don't know.  I can't pinpoint him in one category I've even been accused of making up the mere existence of my kiddo in order to have a blog.  Yep, that's right.  I'm totally faking this all.  All the big money is in autism blogging.  Everyone knows that.  I just love me some free sensory toys swag! I'm totally chewing on some chewy tubes right now while sitting on a therapy ball.

Part of this is because I don't share his picture or name, I am sure.  How can I prove his autism to the doubters.  Here's the thing.  He didn't ask me to write a blog about him, so that's not changing anytime soon.  Despite him being the most handsome creature on earth, yes, I will continue to deny you the pleasure of his face.  Sorry! So I guess I'll make a little list for you.  I understand your need to want to put him under a label. You want to organize your blogs.  Hey, autism lives here. I completely get that. 

I have a kiddo who can look up and find hotel deals on the Groupon App on the iPad but he can't tie his own shoes.

I have a kiddo upon hearing his music therapist play a chord on the guitar can go over to the piano and find the same chord on there.  Did I mention we don't even have a piano?  He's never taken a formal lesson.  He still can't sign his own name without a lot of help.

I have a kiddo who laughed out loud when a tiger at the zoo roared so loud that the ground shook but is scared to death at the sound of a fly buzzing by his head.

I have a kiddo who can tell you the number of any hotel room we have ever stayed in and the location.  Every number theater and what movie we saw in it.  Everyone he ever meets birthday but he couldn't give you the directions to our house from school to get him home.

I have a kiddo that can tell you his father is a lawyer and works in an office but he has no idea really what that means.

I have a kiddo who loves being around other kiddos but as soon as he is he completely ignores them. Yet when I tell him it's time for us to leave, will meltdown if I didn't give him enough time to prepare for leaving the very kiddos he is busy ignoring.

I have a kiddo that has brought me to my knees crying in frustration countless times.  I have a kiddo who has made me so happy that my heart could burst.

I have a kiddo who couldn't say his own name till he was five years old but at eight years old walked on stage at a holiday concert and in front of a packed house of hundreds introduce the next song that they would sing.

I have a kiddo who is so set in his nighttime routine that he cannot skip a single part of it, despite falling asleep during it most nights.   If we try to skip parts, meltdown city.

I have a kiddo that still has trouble balancing or hopping on one foot but he can whiz around the neighborhood on a scooter or bike with no problem.

I have a kiddo who will jump into any pool but needs prompting to remember that the water from the shower won't hurt.

I have a kiddo that can sing along to James Taylor's "Sweet Baby James" word for word but still has trouble speaking in full sentences and using the correct pronouns.

I have a kiddo that I love and that kiddo has autism.  His autism.  Kiddo autism and that's an autism I am still learning about each day.

Does this list prove it enough for you?  Well then, if not, feel free to pick him up for a side of fries.  I'm sure he'll be happy to prove his autism to you.  

Friday, January 10, 2014

Breaking up is hard to do.

"Oh my god. I'm rambling here. I feel like I'm dumping you. It's just that we need to take a break." I said.

"Breaking up is hard to do." she replies.  She tries to sound positive but I can tell, she's upset too.

A conversation I had recently that made me so nervous my palms got sweaty.  I'm glad it was over the phone so she didn't have to see me squirm and I didn't have to see the look on her face but her tone of voice spoke a thousand words to me.  It was a long time coming and all the fingers were pointing that this is the direction our relationship would take.  Part of me was trying to bargain with myself.  How could I make this work? Eventually I had to get over the denial and accept the fact that we were ending private Occupational Therapy services for my son.

What?  You thought this was going to be a much steamier post didn't ya?  Get your mind out of the gutter.  My mom reads this.  (Hi Mom!)

It is a little strange to me ending any kind of therapy for my kiddo.  I'm kind of what you would call a "therapy/services whore".  If it was offered, we'd take it.  Well within reason.  (Usually financial) I never argued with a school for less.  I was like that disco hit "More More More".   So for as long as we could swing it and as long as we thought it was needed, the kiddo also got private speech and OT.  When folks want to know why I never had another kid, well, therapy was our other kid.  That stuff ain't cheap.  Even with insurance.  Our plan seemed to think my kiddo only needed thirty visits a year and then his autism would be all gone.  Strangely enough, still autistic Blue Cross Blue Shield!  Imagine that! So out of pocket is a way of life in our house.  We also do music therapy which the lovely state of New Jersey won't even recognize as "real therapy".  I still have to pay for it with "real money" despite that.  Good times I tell ya.  Good times.

About a month ago we were asked if there was anything OT wise we wanted to work on and it led to some serious thinking on our part.  We really couldn't up with an obvious list like we had in the past.  One where I walk in there and be like "OH MY GOD!! What can we do about this?"  The kiddo is nine.  Things seem to be leveling out in this area.  Some things he still can't do but we're at this point where we have to pick our battles and we have managed to find ways around it.  (i.e. shoe tying. Screw it.  We tried.  We cried. We bought slip on shoes and a lot of Lock Laces. We moved on. Everyone is much happier for it.)

I also started to see some therapy burn out on his part.  He was tired.  Especially by the end of the night that this appointment is on.  He would hit a wall usually during the appointment itself.  He would be absolutely overtired whiney Good Lord when is bedtime pass me the melatonin and a corkscrew exhausted when he got home.  He's been in some sort of OT since he was 22 months.  The steady progress he was making kind of just stopped.  Maybe this is as good as it gets?

Cost.  Yeah this played a roll in this choice and it sucks that it does but that's this life.  Our rates went up.  I guess you could say this was the final nail in the coffin.  At what point can you justify spending so much money on a therapy that's not really doing much for your kiddo.  Other than he enjoys the therapist herself and using the tire swing.  I can bring him outside to our own swing. BOOM! OT in the backyard and it didn't cost me anything.  Maybe I could invite her to come visit us?  She might come.  I got a pool.

So that's the story.  She understood.  Being the professional that she is, she offered to write a social story for the kiddo to explain when therapy will be stopping.  She gets this will be a BIG DEAL in this house.  He's read it a few times now and seems to understand the change is coming in a few weeks.    She of course reassured me that if we need to come back, we can.

I hope she doesn't mind patting my back and saying "There there" when I cry on the last day.  I'm going to miss her.  She really did an amazing job with the kiddo.

Seriously, I got a pool Miss "S".  Anytime you want. :-)

Saturday, January 4, 2014

First this. Then that.

If you live in an Autism house, the title of this post is your life.  If you are new to Club Spectrum and wonder what this means, adopt this as your mantra.  It will be the cure to anxiety but also the throne in your side.  For once it is spoken, it is set in stone.  So you better really mean it.  First you do your homework.  Then you get to do play on the Wii.  Oh what?  The Wii is not working??  Well then, you are screwed!!!!

My kiddo lives for the schedule. Most ASD folks do.  I have to admit.  I too, enjoy the comfort a set routine provides.  Mainly because I know if he knows what's next, than he won't be anxious which only feeds my own anxiety.  If I can nip that the anxiety cycle in the bud, we're already winning.  There are some days though, like this morning, I wish we could just not have one.  Or be so bonded to it.   You see, we had a "snow day" yesterday so the first scheduled event of school was already off the list.  We had to make do with that upset and it was a very very very very and did I mention very? long day.  It was also combined with bitter temps so going out to play in it wasn't really happening.  Last night as I finally crawled into bed I realized "Oh Crap, it's only Friday?!"  So now we have two more days of keeping him entertained/busy/out of jail.   I'm like freaking out over the idea of what the hell to put in the "First this and then that" plan for the next two days. 

You see, there's just no moment of me saying "Go run along and play".  We're talking about a kiddo that needs play often modeled for him.  Which means I get to play Legos and iPad games side by side with him.  Even just putting on the electric Nanny that is the TV set isn't a given.  I type this on my phone as he watches twenty two minutes of something.  I think it's a kid's cartoon.  It's loud and has lots of neon colors.  It's either "Adventure Time" or a rave. I'm not sure.  But my point is, I have to have one eye on him.  There's no telling what he will get into otherwise.   One time he walked into the room with my husband's electric shaver in one hand and calling for the dog to come get a hair cut.  I suppose I should be happy that he's made enough sensory progress to not only tolerate a hair cut but want to give one as well.  Guess we're getting our money's worth on that OT. 

Through time and maturity, we have managed to get to that point where we can add a few things to an existing schedule.  He's been pretty cool about that lately and I can't tell you how awesome that is.  A level of freedom I almost at times don't know what to do with.  It's like getting an extra hour of "yard time".  Once it's mentioned though, there is no going back.  Not unless I want to just schedule in a meltdown, cause they're always a hoot.  My husband and I are always having to talk in code or other languages about events.  Can't spell them anymore.  He knows so Yay for his teacher for doing a great job.  Oh and now he's taking Spanish so we might have to switch to Klingon and Vulcan soon.   Better brush up.  Husband is a Trekkie so he'll be okay.  

First Mommy wants a break and a nap and a glass of wine and a chance to pee alone.  Then Mommy wants to go to her happy place in her head and pretend to be twenty three again living in her tiny little studio apartment where she wanted it to be like Mary Tyler Moore but it was really like Rhoda Morgenstern's.  I want to look at a weekend with no plans.  Where anything was possible.  I want to get up only when I am finished sleeping.  I want to come and go as I please.  If it's rotten weather out, stay in.  I want to wander in a store with no set purpose other than to wander in it.  I want to not worry that I don't have enough of the set foods a certain someone eats to get me through a snow storm. 

First Mommy will have her meltdown in her head.  Then Mommy will pull herself together, suck it up and make the damn schedule.  Pardon me while I go preheat the oven to make some more fries.