Followers

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. 


13 comments:

  1. Your're awesome!!!! Enough said

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  2. I love reading your stuff .... laughing is definitely a major form of therapy .... and I love No. 7 .... it was a good reminder I needed this morning .... working on potty training ... ugh ...

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  3. Love reading your blogs and feeling we're not alone.
    I feel that if we lived closer we could meet up for a glass of wine and share stories. Keep blogging please!

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  4. So wonderful!I love the humor and the way you write!

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  5. Thanks ... It helps us others to keep on keeping on!

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  6. If your snark is a hobby, then dangit, I get to claim my sarcasm!

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  7. I especially loved #3 - tear that Band-Aid off quickly so you can get on with things!

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  8. You're a normal mom with normal answers?!?! Wow!! How shocking!! Love how true you are and that you do for your family - screw everyone else - that's the way it should be.

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  9. If you ever decide to come up north to Alaska, I have a bottle of wine and some great fries waiting for you...

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  10. I love it! You are my newest hero.

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  11. im so glad I stumbled upon your page and am now a follower. just wish I was better with a computer so I didn't have to go anonymous to post .anyway im older and also from jersey. and a lot of your responses sounded like my answers to people right down to will you have more children. but to be honest now as im getting on in years and the truth about my son having no one else to help him. is scaring the shit out of me , my wife is not in the best health and reality sucks. and lets face it , jersey is great for the politicians to help their friends and themselves but they do jack shit for adults who need care 24/7. oh well just glad to hear what others think and some things they do to get by. autism just doesn't take over our children's lives. it affects us all.

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