Tuesday, July 30, 2013

Getting to know you, Getting to know all about you...

Getting to like you, getting to hope you like meeeeeee....

As promised, you asked, I answered and I sure hope we're still talking by the end of this little experiment.    Only one way to find out.  Let's dive on in. 

1) "Where do you live?"

I hail from the magical land of New Jersey.  The Jersey Shore to be exact and NOT that hot mess that was on MTV.  I'm not spray tan orange and my name is not Snooki.  I love our location.  Close enough to NYC and Philly for trips but far enough away to not have to live in either.  Not that I don't like cities, I'm just a fan of the 'burbs.  Yep, close to the beach but I don't really like sand (sensory!) and I hate seafood.  Go figure. Still love it though.

2) "What did you do before you had the kiddo?"
SLEEP! Oh wait, you mean for a living don't you?  I was a pre vocational instructor and job coach at a private school for special needs children, most of which on the autism spectrum.  Yes, I'm very aware of the irony.  No, it doesn't make me better prepared for what life throws at us either.  I may of been familiar with terms and treatments but it's a whole different ballgame when your kid's name is on the paperwork.  Trust me.  

3) "How old was the kiddo when you received his diagnosis?"

Well we started Early Intervention when he was 22 months old and honestly I thought it was just for delayed speech.  Had a niece with similar issues, didn't think much of it.  Saw the EI folks giving all sorts of test at his evaluation that were pointing in that direction and I was "Hey what the eff is going on?" My husband left the room and I corner the two with "Dudes I KNOW what the tests are for. Are we talking autism?" They both looked at each other, shrugged and one of them "Well yeah but it's a spectrum so it might not be too bad." and then they packed up and left with promises to call me to set up appointments.   It then took another two years before we had a doctor say for good "autism".  There were a series of doctors and visits that drove me crazy.  "Well things look okay now but keep doing what you are doing and we'll see..."  Wtf with that nonsense?  Seriously. I wish we didn't have to go through that.  Rip off that band aid quick and let us know what we are dealing with. 

4) "What therapies truly help?"

This is a tie.  Music therapy for his anxiety and speech and feeding therapy from his speech therapist.  The kiddo has always been drawn to music from when he was a baby.  There was a time as an infant Maroon's 5, "She Will Be Loved" had to be playing if I wanted him to eat. (Gee, there's a little quirk from the get go) We always have music going on in this house.  Either his or mine.  Mostly his but hubby and I do find he likes our music more than traditional kiddie music.  (We don't need no stinking Wiggles!) The music therapist gave me to greatest tip with him for speech.  Sing!  Everything.  It's a walking musical in this house.  He can sing something always before he can say it.  That's cool right?  The brain and it's neuroplasticity is flipping awesome!   He finds such comfort in music and that certainly helps for when he needs to collect himself and regulate.  CDs getting heavy rotation? James Taylor, Cat Stevens, Train, and anything from the cast of GLEE. (We saw the concert movie 3 times in the theater)   Now the feeding therapy?  I think that's kind of clear why.  Hello!  He's finally eating something other than fries!!!! All hail the magical speech therapist with her Hogwarts degree that got him to eat vitamins!

5) "How do you find any "time" with your spouse? For talking stuff over, sex, anything?" 

Dudes, my mom reads this! You had to ask this? Right now folks, sleep IS the new sexy in our marriage. As for the talking stuff over and all that romantic crap, well, when we can.  We've been known to text each other while we are both in the house. (Usually when he's on bedtime getting the kiddo to sleep duty)  We try to run out now and then for a lunch date or breakfast when he has school.  Sometimes my mom has watched him on a weekend and we get to see a movie that isn't a cartoon.  It's hard.  I just can't hire a 14 year old to watch him.  That kind of stinks. I wish I could but it is what it is.  So yeah, it's tough discussing things with him over emails on our smart phones while I'm in a waiting room and he's at work but it's what we have to do.   Every now and then the planets align and we are both awake and we watch a Netflix together.  It's married life. 

6) "Do you want more kids?" 

I just got this one potty trained and feeding himself so that would be a big fat NO! Just around the time when the idea of having enough came up is when we started our autism journey.  Then it got tabled for later and as time went by, it was pretty clear what worked for him and for us was to be "One and done".  I"m okay with that.  Not what I thought would happen but I didn't think autism would either so there's that.  :-)  We do have two dogs so I feel like I got a couple of extra running around anyway. 

7) "What is the one thing you wish you'd learned earlier in your journey that might have made a difference to how you, as a family and as an individual, deal with the day to dayness of living with ASD?" 

To chill the fuck out.  Seriously.  It is so easy to get overwhelmed and want to do everything "right".  Guess what?  You WILL screw something up.  No way to prevent it.  It will happen.  I had to learn that sometimes I can do stuff for my family that works for us and that's okay if no one else agrees with us.  We got a saying in Jersey, "You do you."  I live by this for all the autism choices we have to make.  We do us.  We don't worry about anyone else or their opinions.

8) "What's your vaccine stance? Do you think it caused autism?"

I've blogged about this before.  I don't care what caused his autism.  I really don't.  It doesn't serve us now to know if anything happened then and no, I don't think vaccines did.  I never saw that sudden change in personality or his development that I've read on other autism parents message boards.  Autism is a spectrum disorder and there are probably a spectrum of reasons why it's there in one person and not in the next.  I'm going to leave that one to science to figure out why.  I'm busy trying to teach the kiddo to look both ways when crossing the street and to tie his shoes.  Oh and please spare me links proving theories one way or another.  I'm not even going to look at them.  All I ask is before you "share" some groundbreaking article on your Facebook feed for all to see, look where it's coming from.  Anybody can make a web site and put articles up.  It doesn't make it a medical journal just before it's online.  That goes for BOTH sides of this debate. 

9) "What's your favorite wine?" 

Are you buying?  Then it's the kind with alcohol in it. If you twisted my arm, I'd say a nice Pinot Noir or Shiraz wouldn't be refused. 
10) "Does the kiddo really get up that early?" 

LOOK WHEN I'M POSTING STUFF!!!! Why for the love of SLEEP would I ever make that up?  Look at my eyes!  Look at these bags!!! I could store my keys and cell phone in them they are so big.  And don't you see other people posting right back saying "Yep up here too" and it's like 5AM.  These are the hours I keep at French Fry Inc.  My boss is a hard ass!

Bonus question "What do you do for fun?"

Talk to all of you.  Blogging has been the best form of therapy yet.  Well, the Prozac helps too but getting the words to the feelings, ahhhhh, that's the stuff.  I like to cook, read, be snarky (it is too a hobby) and watch incredibly bad reality tv.  Also SHOWTUNES!  Love them all. Somebody asked me to pick my favorite.  I can't.  That's how addicted I am. 

OK fries. I got a load of laundry to fold.  That's all I got time for at the moment.  Got others?  Leave a comment and I'll hit ya back when I'm done matching the mountain of socks. 

Monday, July 22, 2013

The Autism Rules

This blog has been such a big learning experience for me. My interactions with you here and on my Facebook page has really opened my eyes and help me put words to my feelings.  In ways, it's great.  Sometimes though, it's more frustrating than I ever could of imagined. Let me explain. 

Yes, a large majority of my rants are just that, rants.  Ramblings of an overtired mom who is just fumbling her way through this. Many of you seem to get where I'm coming from because you are just as lost as me.  I have gotten great advice and I've gotten some WTF comments too. Not just stuff I disagree with but  possible solutions to issues with the kiddo where I just want to say "Do you think I'm in charge here?  I don't make the rules.  My boss does". I bet your "boss" does too.  Trust me, I'm not trying to do stuff the hard way.   I'm lazy and my feet hurt. 

There are just certain situations in our autism life where I have no control. Nada. None. Case in point.  I lament the other day of having to replace the boy's beloved Cars DVD for the third time. Now before you go running to tell me how I should just download it to his iPad or how Disney has a damaged disc program, stop.  It's not about if I know about theses answers or not.  It's that they simply will not do. Trust me. I know about them.  I've tried. The boy likes DVDs.  He also has certain movies he will only watch on certain TVs.  Yes, he gets that particular.  Heck, one of the main reasons I got the iPad was so I could download on it, music and movies.  However, to paraphrase the old song, he wants what he wants when he wants it. Or where he wants it and on the iPad ain't it.

The same with music. The kiddo has an extensive scratched up CD collection. Most of them used to be mine and my husband. Like most things with parenthood, nothing is really mine anymore except maybe my tampons and even those have been played with by the boy.  I figured an iTunes list would help me banish the meltdowns over skipping CDs. Nope, not even close.  He likes to put the CD in and hold the case.  Then walk around the house with it and turn on his certain DVDs in his certain TVs and then play YouTube clips of his favorite commercial jingles on his iPad. ALL AT ONCE. Good times I tell ya. Good times. It's not unusual for me to find an empty Steve Windwood CD case in my bathroom sink. This is just what he does.  No convincing him otherwise.  What's my other option?  Replace said skipping CDs.  Sometimes we do.  He's on copy number SIX of GLEE presents The Warblers.  I pretty much paid for Ryan Murphy's summer vacation home.  My other option?  Listen to said skipping CD which turns the Greatest Hits of Cat Stevens into a DJ House Music club hit the way it bops all over the song.  Peace Train gets funky y'all. 

Some of you now get this.  Either because your kid does something like that too or perhaps with a few tweaks of their own. Some of you get that's just how an Autism house rolls.  This is where I say I don't make the rules.  I don't have the autism so really how could I?  Now I can make suggestions.  I can try to organize the chaos that makes perfect sense to him. Or I could just let it ride and since the kiddo is 9, I'm letting more stuff like this ride.  Although I do find myself following after him turning off all the things he just turned on but there are many days where I just am to tired to jump on the "Turn on all the things" exercise loop.  I ask him to lower the volume, which he surprisingly does.  I put in my ear buds and listen to my own tunes.  In those moments I realize it's not worth rocking the boat and questioning the autism rules. Quirk on kiddo. 

All I ask is this, before you spend the time typing me or any other blogger a long email or comment on how I can do things instead, remember the autism rules in your house.  You'll notice that I am not asking for how to stop something.  Trust me, I am blunt.  I will flat out say what I need help with.   I've been an autism mom long enough to know that.  I also know dollars to donuts that you got some rules in your house that you wouldn't even dream of changing.

Stay quirky my fries.  :-)

Tuesday, July 16, 2013

Are we there yet?

The worry is constant.  The planning never ends.  Is it ever enough?  Will the crisis du jour be solved by bedtime?  Are we there yet?

My eyes are focused on an end point in our autism journey which is ridiculous when I think about it.  Like the job will ever be done! The autism is a part of him.  I might as well be trying to end all of him if I try to end just a part of him.   Some days it's really flipping hard.  I got to allow myself the occasional pity party but also know when to put the fresh coat of lipstick and move on.  I'm not sure when I will get to that final stage of acceptance.  I just got to keep trying.  We're not there yet. 

There is so much he still can't do.  I wonder if he will ever be able to do certain things.  However, there are things he is doing now that I NEVER thought he could.  Swim, bike riding, try new foods, and my personal favorite, have a temper tantrum versus a full on meltdown.  Yep, that's right.  I'm excited when he has a simple hissy fit.  When I can just send him to his room to think about what he did and not have to worry if I have anymore spackle to patch up the soon to kicked in walls.  A behavior that ends. Not one that just recharges itself in waves so it can go on and on.  It doesn't happen all the time but it is slowly getting better.  It's coming though but we're not there yet. 

My eyes glaze over every time a new article comes out about the possible causes and treatments for autism and yet I still hover that mouse over the link to click.  I never thought I would become so well versed in a language that some days I wish I did not have to speak.  ABA, IEP, ESY, SPD, ASD, DSM and FBA etc. The simple act of reading yet another article can sometimes exhaust me to tears.  I find myself slipping back into that newly diagnosed mother role and thinking "yes, this will be the one that explains it all."  I haven't found that magical article yet.  Have you?  One of these days, I'll stop driving myself crazy with the should ofs, could ofs and would ofs but I'm not there yet. 

When will I stop being angry?  I'm angry a lot.  I usually mask it with sarcasm but mainly because I know prison orange would look terrible with my skin tone and hair.   Yes, sometimes I'm angry with autism even when I see the unique gifts and perspectives it gives my son.  My neurology is different.  It's just hard to understand fully and I resent that.  I'm sure he's thinking the same about me.  "Poor Mom.  She just doesn't get it with her neurotypical brain."  I'd like a day of no anger, of not having to explain him to world and the world to him.  Forget tolerance!  I just want plain damn acceptance.  From the world and from my son.  I want him to realize he's got to put up with some of our neurotypical requests and quirks.   Just as much as we got to work and accommodate for him. We're not there yet. 

I have said it before and I will say it again.  Autism is the trip I didn't plan but I sure do love my tour guide.  I follow his lead. Are we there yet kiddo?  Am I a good travel buddy on this trip?  Did I forget to pack anything?  Sometimes I need to pull over at a rest stop for a break and a side of fries.  You don't mind right?  :-) We're almost there. 

Wednesday, July 10, 2013

"I don't know how you do it"

Guess what Sunshine?  Neither do I.  I'm not saying this in a super humble, there, but for  the grace of God, go I sort of way.  I am saying this in the completely burnt out, oh my god he pooped his pants twice in an hour and now I have to give him a second bath kind of way.  I do it because I have no other choice but to do it.  If I don't do it, I would be some sort of monster.  If I do what needs to be done, this token cliche phrase gets tossed at me.  Let me translate that to what that means to me when I hear it. 

"Thank God that ain't me." and you know what?  I'd almost appreciate that honesty a little more.  You think I got it harder/worse than you? Well, I don't think so.  I just have it different than you.

My parenting to my son is different because of his needs but I am doing the same job as you.  Each kid is a flipping snowflake, blah blah blah, you get what I'm saying right?  I'm trying to make a point on this cliche phrase.  I really don't want to use one.  So why do I get put on the shelf of "Parenting All Stars Most High".  Just because of a medical diagnosis?  That's just odd to me.  Maybe it's because he's the only kid I have.  I just don't see why I have to get boxed into some Donna Reed "My, isn't she stoic" sort of category. 

Maybe it's because I've seen the "looks" and gotten comments from strangers about my kid that make me question my failure as a parent more times than I can count.  The women that stare at me as I lead my 9 year old son into a public restroom because he still does not have the communication skills or the sense of awareness to be left by himself in a men's room.  (Screw you ladies.  You are all in stalls anyway.  He can't see anything and guess what?  He doesn't care even if he did.)  The "advice" that is offered to me that folks think is so helpful is usually anything but that.   ("Oh he's in your bed nightly.  You should stop that you know?  Really?  I had no idea.  I just figured we do it this way. Co sleeping till he is 34.)

Let me not forget the joy and pain that is seen in online social media.  If I am ever feeling to full of myself, I can just hop on Facebook, state an opinion and sit back to watch trolls feed off it till it's been ripped to shreds.  Man, what is it about hiding behind that computer screen or smart phone and folks grow a pair of brass ones don't they?  At the same time, I can write something like how my son required two baths in a single hour and have countless other parents give me the cyber fist bump through the screen.  They've been there.  They've done that.  They're still buying baby butt wipes for a baby that is rapidly approaching ten. 

I don't know how anyone does it, this parenting thing.  It's the hardest job I have ever done.  Just learning to accept the fact that even while I think I have a moment of rest, (going to the bathroom) I'm not really.  He's always there.  I'm always "on call" so to speak.  There is no end in sight.  There is no punching out.  The pay sucks and he refuses to match my 401K.  Parenting is now just another involuntary action to my being.  Even when I die, I will probably come back to haunt him and tell him in a ghostly tone to drink his milk and to leave the dog alone.  Frankly I'd rather not think of the dying part as I can't.  No really I can't.  See, that's one of those different moments I was telling you about.  Don't feel like you got to be sorry for me.   It is what it is.  Autism teaches me that every day. 

How do I do it?  A diet of coffee, fries and wine.  An exercise routine of running after him to put on pants in the morning followed by lifting his melting down self off the floor when he's completely overwhelmed.  Add a heavy dash of sarcasm and little sleep which helps keeps me a little dizzy and possibly deluded into thinking everything is going to be just fine. 

Just don't put me on that Supermom pedestal.  Just let me sit on the Tired Mom couch in my yoga pants watching Bravo reality TV. 

Tuesday, July 9, 2013

Cruel Summer

OK, can I just get this out of the way and say Summer can bite me?  Big time. Dudes, I cannot be the only one.  Can I get an Amen up in here?  Other than offering me a variety of frozen blender drinks, there isn't much to it that I enjoy.  Or my kiddo.

Let's start with the nonsense that is ESY(extended school year) aka "Summer School".  For six weeks in a row, he's got school four days a week and only half days. I get the joy of dealing with mixed up schedule stress six weeks in a row.   Like you know the idea of a long weekend should be a blast but then it's not.  Not for a schedule needing kiddo.  That's just six meltdowns I know are coming.  Plus, let's break what this session is down.  It's not quite camp but it's not quite school either. (Hello, 180 days you had my kiddo going to school five days a week.  Now it's four?  There's the first problem.) So I'm going to call it what it is, "Diet School".  Same place, same faces but less filling on the actual education stuff.   For example, "water days".   Is it a science lesson in physics when he is using a Slip N Slide?  Then there is the utter delight of having to have him ready for the bus 45 minutes earlier than he had to be ready all year.  Shoot me.  Really, somebody just put me out of my misery.  In autism time, 45 minutes is HUGE!  Oh now I got to add putting sunblock on him daily?  Sensory torture for the win!  Oh what's that?  Water balloon day (which maybe it's a history lesson and they are recreating the storming of Normandy Beach) so send him in a swimsuit, yeah right, like that's gonna happen!  I got a kid who cries when the seasons change and he can't wear his winter coat anymore.  Now I got to send him to school in a swimsuit?  In the backpack it goes and Good Luck Teach!  Guess you're gonna be really earning your paycheck today.

And it's just to damn hot.  My grandparents are from Ireland.  I am not genetically made for this weather.   Sitting in a playground most hours is downright disgusting.  Thank god we got a pool but let me tell ya, even that gets old.  The kiddo is a real fish and he would be in that thing all stinking day, which we have done on many occasions.  There's no sitting on the sidelines on a lounge chair with a frozen drink and a good summer novel with him.  I have to keep eye on him at all times.  So I sit there and sweat and listen to my hair expand to the point where I look like a reject from a Def Leppard video.  Swatting bugs off my ankles and wonder how many bites will be on the kiddo for me to contend with later.  At least my Wifi works in the backyard because I'm writing this as his goes down his playground slide for the 463rd time.  "Yes honey, That was very fast.  Try again!  No Mommy can't fit in your playhouse.  I have fun watching you.  Really.  Honest."

Which brings me the movies.  Not the cool summer blockbuster action flicks that you might actually want to see.  I'm talking a layer of Hell that Dante forgot to mention.  Kids Movies.  Now you are thinking "But hey Pixar makes some great flicks" and I won't disagree with you there.  I don't mind sitting through those.  Heck, I actually like going to those but for every really cute kid movie, there are a hundred completely terrible and awful ones.  Please explain to me what evil son of a bitch came up with The Chipmunks?  Honest to god, if I could of ripped out of my eyeballs and stuffed them in my ears I would have during last summer's "Chipwreck".  Don't even get me started on The Smurfs. I'm sure it violated terms in the Geneva convention.  Plus the formula seems to be, if it's really god awful, they'll be sure to make a sequel by next summer!   I want to design a family theater for crappy movies like that.   It will have chairs for the parents that face the back while your kid faces the screen.  You then get ear buds to listen to whatever you want and a small head lamp to read a book or play with your smartphone.  Your kid can lean over and tap you when they want more popcorn or have to pee.  Or to tell you your snoring is disturbing other people.  Keep it down. The other moms want naps too.  Also, a glass of wine wouldn't go amiss.  I'm just saying.

The part that really grinds my gears?  By the time we finally got a good groove going, ESY will end.  Then we will have a bank of time with nothing to do before September.  More upset and more routines out of whack.  Then September and homework hell returns.

If someone could just put me into a medically induced coma till mid fall that would be great.  Please. I'll buy you a side of fries. 

Tuesday, July 2, 2013

Spotting one of our own.

I saw you.

I saw you hold your son's hand. He looked about 11 or 12.  That was my first tip off.  Most boys that age won't willingly hold their mom's hand in public.

I saw you view the hotel pool.  Scanning it to view all the potential triggers. Searching for the best place to set up camp for your family.  Closest to the exit plus closest to the pool.

I saw you prompt your son into the water or as close as he could manage at first.  His hands over his ears. He managed to sit on the side with his feet in.  I saw his eyes squinting tight but after a while,  relaxing.  His hands never really coming down off his head but relaxing, flapping from time to time.

I watched you, your husband and your daughter all get in the pool and stand around and in front of him. Forming a sensory shield.  All smiling but I noticed you mom still scanning the scene.  Ever watchful.

I gave you a big smile.  I know my tribe. I wanted to swim over and fist bump ya or give you a high five.  Of course, I had my own son to keep eyes on in the over crowded pool.  Plus, I never figured out a good opening line when I spot another ASD family.  "Flap here often?" isn't so smooth.   I just hoped you saw my smile was just that, a smile.  Not condescending or with pity.  I just wanted to acknowledge you.

I saw you later, the next morning, at breakfast.  You "opened the joint" like we do.  I smiled and wished you all a good morning.  I overheard your son ask quite anxiously "What time is it?" to which your husband replied quite wearily "It's vacation. It doesn't matter what time it is."  I heard you sigh.  You knew how it mattered but you also knew how your husband felt.  Doing that dance of trying to keep the peace.

I hope you had a good vacation.  Maybe it's not the type of vacation others would enjoy but for your family, it was great.  I wish I could of told you it was nice to see one of our own.  That just seeing you and your family made me feel less outnumbered by the "typical" families all around me.  I wish we ran into each other more.  Maybe we would of had a chance to throw our heads back and laugh at a joke only we would understand.  Maybe some how you will see this blog and realize you weren't the only one at that resort with autism in your life.  I hope you and I might find more of our own wherever we go.  To keep us company.  To help and support.  To sound off and give advice.

Maybe even just share a side of fries.  :-)