April 2010

Dear autism,
Do you remember how we started this journey?
Mournful eyes, furtive glances, and furious scribbling on notepads marked the beginning of my diagnosis meeting in August of 2008.  I had been to several screening appointments at offices in several locations, and I was starting to be very annoyed at the idea of another meeting.  But this was supposed to be “THE” meeting.   The one where they explained what happened to my happy bright boy.  Here’s the beginning of the conversation:
THEM:  “We’re sorry to report to you that your son’s diagnosis is autism.” 
ME: (just barely resisting the urge to roll my eyes)  “Duh! Now what are we going to do about it?”
Seriously.  That’s how the meeting started.  I had decided and began operating on the assumption that Savion had autism back in February of that year.  The loss of speech and eye contact seemed like obvious indicators to me.  I had already taken his diet GF, started melatonin at night, and gotten started with a speech therapist.  That’s as far as I could get without an official diagnosis.  Were they seriously going to waste my time stating the obvious?  I remember that day pretty clearly.  My husband and I had one of our last fights before the complete dissolution of our marriage that morning.  It included him explaining that we’d probably be getting evicted in 30 days or so.  I had an 8 year old son on summer vacation, a 6 month old daughter who was permanantly attached to my boob, and my formerly easygoing middle son, a few days shy of his 3rd birthday who was alternating between running laps around the room and banging toys on the floor.  In retrospect I’m proud of the way I responded.  I could have screamed the poor guy into oblivion since I was stressed way out, but I only gave him a short version of my trademark smart-alecky sarcasm.  I don’t recommend that route to new parents on the spectrum, save your smart-alecky remarks for your blogs or precious mom’s night out events that will soon be beacons of hope on your journey.  Here’s what I DO recommend to new parents on the spectrum:

1.  Fortify your stashes….of everything!  Money, babysitters, comfort food, friends, etc.  You’re going to be stressed way out for at least a little while, so make nice with everybody as much as possible for the next 48 hours.

2.  Hold a pity party…Invite friends, family, anybody you’ve been referred to, and everybody else you can think of.  This should take the form of an actual gathering, blog posts, emails, IMs, phone calls, etc.  You might be here for a while, so aren’t you glad you fortified your stashes first?!
Your best friend should be hostess and should collect everyone’s opinions, suggestions, and referrals for you and your help squad to research later.  You should be the only one in mourning at this party (ok maybe your spouse too)…everyone else is there to cheer you up, refocus your energy, and generally advocate for you and your spectrum kid
3.  Get it together…once you finish reeling, dig through all the paperwork you’ve amassed and find your 100 day kit.  http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf  Now start, and remember slow and steady wins the race.  Keep great records or find someone who will do that for you.  There are great sheets to show you how at the end of the 100 day kit.  
4.  Go for glory…trust your gut when deciding what to try and not try.  Your budget is going to be stretched to the max, your mind will wander often (especially if you’ve got typical kids too), and your disposition will range from super sunny on your hopeful days to uber ugly after sleepless nights and marathon meltdowns.  Read about it, talk about it, and then make a choice.  Don’t be afraid to be wrong because you will be….OFTEN!   Hey the suits and docs haven’t figured this thing out either, so you’re in good company. 
Think back to all the hopes and dreams you had for your child while you were pregnant, just after giving birth, and right before diagnosis.  They might change a little depending on your kids abilities, but guess what?  They always do…for all parents!  So shoot for the stars…I’ll spare you the cheesy quote to end this blog; go get busy being SuperMoms (and Dads)!
The Autism Checklist

This is the book!

Dear autism,

I attended at talk at the library last night that was all about raising expectations for your spectrum kid. One of the most surprising facts I learned last night was that no matter what type of intervention was used, the single determining factor of success was parent ATTITUDE! (Dr. Mark Durand, Univ of S.FL) How awesome is that? How hope giving is that? Really, how inspiring that is! I came away from the talk feeling very aware of how far I’ve come in the almost 2 years since diagnosis. I can clearly see the growth and changes in my own attitude toward autism and disability in general and in my appreciation of who my son is individually. Thank you Mr. John Shouse for inadvertantly giving me great personal insight. I also got a copy of his book, The Autism Checklist.

I cannot emphasize enough how parents should attend events like this in order to increase their understanding community. I networked with 3 new people and found out about a great family event to look forward to. Also, it was a breath of fresh air being away from all the kids for an hour. I enjoyed the recharge and got great info….I’m such a great multi-tasker! Do you have similar stories?

Dear autism,

So a daycare center who shall remain nameless decided that since my kid required more work than the others I should pay MORE MONEY!!  REALLY?  So on days when little Sally typical screams all day does her mom have to fork over extra for the hours spent NOT tending to all the other kids?  Now before we all get up in arms about me beating up on the childcare industry let’s get a couple of things out in the open.  First, the whole idea of daycare sucks anyway right?  You drop your children off for other people to spend the whole day shuffling your precious cargo from activity to activity while you spend all day doing a job you may not really like anyway.  I know there are some people who LOVE being care providers, but let’s be honest for a second here…for a lot of people its a JOB!  Now add a kid who runs, screams, and stims all day, and it’s a REALLY difficult job.  I know better than most that it’s no walk in the park.  But if you advertise rates for childcare, you don’t get to change them for my kid just because he’s got autism.  That’s called DISCRIMINATION!  I’m pretty sure that’s illegal.  Scratch that… I’m positive it’s illegal because I called my provider law firm and asked.   Now at this point I have a few options.  Ponder with me….

1.  Yell, scream, point fingers and make a general raving lunatic of myself in the direction of the center director.

2.  Whip off a stinging narrative laced with words that can’t be printed in the public domain and send it to the media (ok I’ll delete all the profanity before I send it, but the act of writing it will do WONDERS for my mental health).

3.  Remove BOTH (yep I pay them to care for my typical kid too) of my kids from their care and hope they really miss my money.

In the end, I’ll do what most of you would probably do.  Give them a piece of my mind on paper, remove my kids, and send a few watchdogs in their direction.  To be honest, that’s all I’ve got the time, energy, or resources to devote to this.   Now I’ve got to start the process of finding a child care provider for my auti-angel again.  Do you have a great resource to share?  Do tell…