Hiking in the cold to see Mockey

Dear autism,

Some people are visiting this note to find out how I could have misspelled Mickey and to find out how our trip to DisneyWorld was. Well I didn’t misspell and we haven’t done Disney yet…but I’d say our latest adventure was a small step for autism-kind. We scored free tickets to a Nashville Predators game from our friends over at ASMT (Autism Society of Middle Tennessee). I had never seen a hockey game and can’t say it was on my bucket list, but I really enjoy taking my brood out into the world to see what we can see and I totally count this as broadening their cultural horizons. So off we headed to downtownland and the Bridgestone Arena.

The first thing we learned about hockey is that it costs a small fortune to park anywhere near the arena. I considered hocking one of the children to pay the $20 parking fee but that would have been a waste of a ticket and Supermoms do NOT waste. So we drove around for 20 minutes and found a free meter a few blocks away. As we were piling out of the van I realized that it is winter in Nashville. I’m not sure when that happened, but I missed the memo and we had about 5 blocks to travel in 30 degree weather. The next lesson we learned about hockey is that two-year olds have lots of questions and opinions about it on the 5 block walk…and they call it “mockey”.

Mama, where are we going? What’s a mockey? I don’t want to go to the mockey! Can I have french fries in the mockey? Pick me up mama! And on and on and on, ad nauseam.

Once in the stadium and in our AWESOME row KK seats in the 117 section, mockey became VERY cool. We laughed and danced and ate popcorn and goldfish. We learned to yell, “YOU SUCK!” whenever a Phoenix coyote was mentioned by name. And we learned that nice ladies sitting in front of us do not care for autistic children pulling off their gym shoes, not wearing socks, and resting their feet on the back of her chair. Can’t say I blame her for that…unsocked toes in tennis shoes probably stink, but she eventually scooted over a few seats and turned back into a nice lady. Crisis averted.

So the predators won the game, and my oldest son got to take pictures of and get autographs from various…ahem…cheerleaders. My middle son was entranced with the jumbo-mega-tron thing, was very calmed by all the loud noises; and my baby girl danced, laughed, and ate herself silly.

I didn’t really mind that Savion randomly took his shoes off as we were waiting at a light on the walk back to the car though I didn’t notice until we were about a half block away. I did mention that it was approximately colder than a deep freezer right? It also wasn’t TOO perturbing that Sariyah screamed about half the way back to the car because I refused to carry her. We ate Taco Bell and everyone is now asleep 20 minutes after being put to bed. That mockey is all right with me…

 

Is your glass half empty?

Dear autism,

Sometimes it’s tempting to let you get me down. It’s easy to focus on the difficulties you present in our lives and sing whoa is me. I’ve definitely had my share of those days but lately I’ve run into it far too often in the Special Ed community. Pull yourselves togethers mamas, teachers, aides, bus drivers, etc! How can we set positive goals for our kiddos if we convey this chronic sense of doom and depression surrounding their lives’ prospects? I’m not talking about true chronic depression, you definitely should seek professional help if that’s you but the rest of us need to just find some darn joy! Take a few days off from therapy and take a nap! Ditch speech or ABA and go get some ice cream. Hire a snot nosed high schooler to babysit and promise them a tip if your kids are still alive when you get back. Teachers play hooky for a day! Do whatever you need to recharge your batteries and relax. The effect will trickle down in the form of kids who maybe only eat a handful of dirt instead of a gallon. Maybe they will only run halfway across the parking lot instead of 4 or 5 blocks before you can catch them. Focus on the small victories people.

*Btw…in the name of full disclosure the cup in the picture is only a 1 ounce sample cup but it’s really full though! Cheers and I’d love to hear your recharging stories!

 

Happy Auti-versary!

Dear autism,

Once a year around diagnosis day, I like to take a comprehensive look at what we have accomplished in the treatment and or management of you. Last year was a whirlwind! We had ABA, music therapy, bio-medical intervention, speech therapy, social skills groups, occupational therapy, kindergarten academy, and three academic studies at Vanderbilt. Whew! Not to mention all of the assessments, evaluations, and general poking and prodding that go along with all of these. I am a proponent of aggressive intervention, but this year we are signing up for some stop and smell the roses therapy. We are coming out of the labs and classrooms and into the world. We will go to the grocery store and practice requesting and managing elopement behaviors. We will go to the park for impromptu play dates with typical peers. We will hang out at the YMCA and play borrowed musical instruments badly for music therapy and have a rockin good time. We will be less scheduled, more relaxed and we might even have money for ice cream now and again. Gluten-free sorbet in a cup of course….we’re not giving up EVERYthing.

 

Summer camp

Dear autism,

Summer is my favorite time of year. You can go outside in any old thing and be comfy and fancy free. Savi’s favorite part of summer is summer camp! Swimming, outdoor play every morning, less restrictions…summer is a breeze! Not so much for mama this year. We are making the big move from pre k to kindergarten and so we are spending the summer trying to develop kindergarten skills. Listening to stories, working on a communication device, staying in circle time…I’m not even really sure that school ended this year. Thank goodness for The Autism Foundation of TN. They were able to build a program that works on our goals, incorporates fun and outdoor time, and has some music therapy to boot! Savi and I are are the pool by 2 most days and home relaxing every night by 5. Maybe school should model itself after summer camp?

 

Thanksgiving and the baby pig

Dear autism,

I talk a lot about how difficult it is to take you places with the family.  This note is no different I’m afraid…

We were invited to a friend’s house for Thanksgiving since I decided to stay in TN this year instead of taking the usual pilgrimage to Chicago.  Based on this visit I’ve come up with The Top Five Things NOT to do before visiting someone on a major holiday.

5.  Do NOT wear cutesy clothes or dress your children in them.  It’s difficult to catch running kids in heels, and paying $5 to dry clean a dress you wore for an hour is not very frugal.  Unless of course you’re creating a documentary on how to get various food stains out of dry clean only clothes or doing a YouTube video on how to properly care for a sprained ankle.  In that case go right ahead.

4.  Do NOT spend the night before the big day cooking at your own house.  (No matter how delicious it turned out–thank you very much!)  You’ll be tired and cranky from lack of sleep and seriously, who cares if your kids eat pizza before and after Thanksgiving?  Ramen noodles sound like a delicious day after Thanksgiving meal.  If you’re still motivated to cook do it the day after.  Better yet, I hear Golden Corral makes a mean turkey…(and they pay people to clean up the mess!)

3.  Do NOT forget to prep your kindly hostess.   They really meant well by inviting you over, but do they really understand that you’re going to be busy following your kid around to make sure they don’t break anything expensive and wiping up the bread trail on the walls and floors of her home so you’ll be welcomed back?  (maybe)  Mention that it’s unlikely you’ll ever be on time for anything in your life and you may get kudos if you pull it off. (Then write a blog entry on how to do that so I can get some action steps)

2.  Do NOT forget to prep your kids.  Issue the routine threats and bribes about being on our best behavior and chewing with our mouths closed, etc.  You and I both know they probably won’t do it anyway, but you can describe yourself as the dutiful parent and if your threats are colorful they’ll make for good blog material one day.  My (insert close female relative here) once told me that if I didn’t behave when we went out, she’d tie canned goods to my earlobes and hang me upside down off the Brooklyn Bridge.   I don’t remember if it was effective on that particular day, but it did make this blog so there you go.

1.  Do NOT under any circumstances take your children anywhere that is more fun than your house or where they have cool pets.  My hostess brought out a guinea pig to entertain Savion who was totally unimpressed.  He much preferred to smear bread along the banister and jump off of the stairs repeatedly.  But that youngest girl of mine had a FIELD day screaming “The baby pig has a great big butt!” while running up and down the stairs for two hours.  Did I mention that my hostess had family in from out of town?! 

 What a sight we must have been…45 minutes late, 2 year old girl screaming about pig butts, 5 year old smearing bread around and exploring dog food (taste and touch), and me attempting to keep the peace, regulate non-food intake, and save plants and dishes…in heels.  All in a day’s work for SuperMoms….but then you knew that didn’t you?

 

Oh the Veggietales I could tell

Dear autism,

Excellent Seats at the VT Live Show

If it wasn’t for you, we wouldn’t be ASMT (Autism Society of Middle Tennessee) members. If we weren’t ASMT members we wouldn’t get awesome newsletter emails from Justin about cool stuff they are doing that are perfect for families on the spectrum. If we weren’t getting those emails, we would not have scored FREE tickets to see Veggietales LIVE in Murfreesboro last night. If we hadn’t driven the 45 minutes to Murfreesboro last night, I may have never have known that:

 A) Savion LOVES live shows! (I mean in a MAJOR way…I’m talking a limit stimming to the intermission and last 10 minutes of the show kinda love.) and

2) I can actually take all of my children to a public function with typical families without anyone spontaneously combusting, without losing any children, and still make it back home in one piece.

Score one for the not so super SUPERmom. High fives all around.  The cast was great, the 80’s songs were killer, and And quiet as kept, my 10-year-old (name not mentioned here to protect his “rep”) was videotaped dancing in the aisles to his favorite Veggiesongs of years past. But that little bonus is just between us…and the thousands of people who will buy the DVD when it’s released.

Yesterday was a VEGGIE great day!  Even if we didn’t win the 30 DVD set they gave away during intermission.  Yeah…still great.

AMST
Join ASMT mailing list
Veggietales Live

 

Autism: The Early Days; 4 Tips for new spectrum parents

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?

 

Fair and Equitable Treatment

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…

 

Rocking rocks!

Savi’s smile

Dear autism,

 

Rocking chairs rock!  (pun only partially intended)  There are so few things that I can actually tell give Savi joy.  He’s non verbal and notoriously hard to read.  But on this day, I knew without a doubt that he was happy.  I wasn’t even really mad when he removed the two bars shown in this picture about 20 minutes later.  Doesn’t everyone like to redecorate?  You should let us have more days like this together…don’t u have relatives in Antarctica to visit?  Stay as LONG as you’d like.  Really!