Way back when...

I've had this thought rattling around the back corners of my mind for a while now.  It's been tenuous and sometimes hard to grasp.  Right when I think I have it figured out, it morphs into something else and slips just out of reach.

I wish I had the benefit of someone talking to me early on and telling me a little something about those first few years and what they would really be like.

As Alex gets older, it's becoming harder and harder to remember those younger years and in some ways that's a blessing.  Its easier to talk about them and with time they seem less raw.  Alex is almost nine now, and while we have difficult days, hours and sometimes whole stretches of time, for the most part, our challenges are more about how to deal with challenges.  How to deal with bullies, social situations or, understanding what a person meant and then what to do.

We're not in the grind of the early years when he was two and screaming over the TV channel being changed even though it was on static to begin with.  Or coping when he freaked-out in the car for some unknown reason three days running, only to make the connection that we weren't going the same way due to construction and maybe, just maybe, going a different way was throwing him off?

Wondering if we should go out to the store because we didn't tell him we were thinking of going out even though we were out of milk, eggs and everything else.  Having to kick people out of the house as nicely as we could because it was getting close to bedtime and they had to leave or all hell was going to break lose if they did not get the fuck out of the house in ten minutes.

Knowing friends looked at you weird because you couldn't interrupt nap time or go to Mc Donald's because, even at the tender age of three, he refused to walk under those golden arches.  Knowing some of those friends would never understand and they had to be let go and fade away.

And being jealous that other kids ate more than one food and they ate it willingly.  And then going back home to sneak the protein drink mix into his milk at night so he would gain weight, and having to do it in secret because you knew, just knew, if he saw you, he would no longer drink it.

Knowing that sometimes the people you thought you could lean on and would get it were the ones who understood things the least and were the first ones to shut the door in your face.  And knowing that sometimes your own family didn't understand and the reality was, they didn't want to understand.  And deep down, that hurt the most.

And while all that was going on you had to take care of yourself.  You had to try and figure out what was going on with your kid, go to appointments and listen in shocked silence as they told you something you kinda sorta already knew.  And it still stung like a thousand bee stings when they said it out loud and it crashed all around you.

Then, there was dealing with the diagnosis.  I mean really dealing with it.  At first it was a relief.  My first thought was, "By God, I'm not crazy."  I had so many people telling me he was fine, he was just a tish excitable, he just needed a firm hand or I need to learn how to discipline.  It took a long time for me to comprehend I was right about my child all along.  That was a hard lesson to learn and one I still wrestle with today.

I will never doubt what I think is right for my child again.

And dealing with insurance and more often than not, coming to grips with how little was covered and how every therapy fell into flex account spending or fell under the category of private pay.  Wrestling with having OT and PT and Speech come into the house and set up shop and numbly nodding your head that, "Yes, you could be available for six hours a week on such and such day and PECS?  That sounds great."  And not quite knowing what PECS even was.

And somehow we've moved past those early years.  And having lived them, I will tell you those were the hardest years for me.  Having to understand something I didn't yet have a grasp on.  I didn't understand Autism and I didn't understand my child.  I didn't know what triggered a meltdown and I didn't have the faintest understanding of how it all pieced together.  I was lost, confused and scared.  More often than not, I numbly went through the motions.

I can't say what the future will hold for you, but I can tell you it gets better.  It gets better because you have an understanding, a new knowledge of how your child works.  With a diagnosis, a lot will change.  Some people will fade away and others will be thrust into the forefront.  With that diagnosis you will be given the ability to better understand your child.  You will begin to know their quirks, strengths and weaknesses and what makes them run for the hills and what makes them laugh.

So I guess what I'm trying to say is, if your just starting out, it gets better.  With time, you will grow into the mom your child needs.  You won't even know it but you will.  You will start to see what matters most and what once was important becomes a mere annoyance or something that simply no longer fits in your life.  You will be what your child needs.

I'm not saying it will be easy, its not.  There are days you will fall into bed exhausted and then can't sleep from worry and the irony of that won't get past you.  What I am saying is this: you will make it.  You will make it out the other side to a place where you are comfortable in your own skin, comfortable with your decisions and comfortable with your child.

In time you will get there, trust me.  You will get there.  Surround yourself with those who understand and those who want to understand.  Give yourself time to grieve the loss of what you thought your child was and time to accept what you now know.  And know that deep down your child is no different from what he or she was a few days or a week ago.

It's not easy but you will get through.

I guess that's what I wished someone told me when we were first starting on this journey.

You will make it, your child will make it, and everything will be OK.  


Note:  I have a family member who has a child that was recently diagnosed.  This is for you, and those like you, who are just starting out going, "Now what do I do?"  I'm here if you need anything.  

The Vengaboys have taken over my bathroom and do they like to party.

There are some things going on in the background with school that has left me with an empty, hollow feeling.  I will eventually write about them but right now, its not the time.  Right now I've been subjected to listening to an old song brought out of retirement thanks to He Who Shall Not Be Named.

First things first, go down there and hit play on the YouTube video.  Trust me, this whole post goes better with music and alcohol and a mallet to beat some sense into the idgets at our school.  Crap, I digress...

Anyway, we have this thing we do every night with our showers.  Namely, we load all three kids in our shower and let 'em rip.  We turn some music on and they have a blast.  It makes it a little more palatable listening to music while you're telling your eight year old not to miss his pits and don't forget to scrub between your legs.  

I've talked about music before.  Alex loves to listen to music.  He even has an app that allows him to create musical scores.  Of course I'm trying to crank out this post at six AM so I'm making the bold move of skipping the links to my other posts about music.

I AM THAT LAZY.

Anyway, to say Alex loves music would be a massive understatement.  That would be akin to saying I like Diary Queen.  Hell, I love Dairy Queen.  I'll even hook for Dairy Queen, ask my husband.  Not that its really considered hooking when your married but rest assured if he brings home a DQ Blizzard, he's getting laid.  Boy bloggers of the world, take note.

Anyway, he loves music.  We're no strangers to repetitive listening.

We have one particular song that Alex had fallen in love with.  He loves it and I'm stuck with it so I try to make the best of it.    

I give you the Vengaboys.

I've been listening this full blast every night during shower time.  Every night for the the last few months the Vengaboys have been ear-raping me.

Every Single Night.

For Months.

MONTHS.

I thought, "Why listen alone?  You all should be privy to this song just once."

And just so you know, you're getting off easy.  We listen to all the other Vengaboys songs because in our house, we go down hard.  They've take up residence in my master bathroom like a bad fungus and they won't leave.

So there you have it.  If you're wondering what I'm doing every night from 7:30 to 8:00, I'm having a shower party and getting ear-raped by the Vengaboys.  

And now that I've seen the video I have a whole new dance routine to get started on.  At minimum, I can get busy with neon, I hear its coming back in style...


Note: if you are dying to listen, and I know you are, to other Vengaboys songs, when the Up and Down video is over you can click on more.  Our other heavy hitters are We Like to Party and Shalalalala.  The Vengaboys, ear-raping generations for years.  Go on, you know you wanna.   

I'm sick of our pool so I cheated. I'm a pool cheater.

So we went to another pool last week.  I shoved them all in the car and off we went.  It's been so hot here and after a while there is only so much you can do at your own pool besides burn the bottom of your feet screaming, "Ouch, Ouch, Ouch!" till you can get to your chair and put your flip-flops on.

Since we moved to Kansas two years ago we've come to find out that every neighborhood has their own pool.  Upkeep is built into the association dues and they are so outrageous I've been determined that by God we're going to use that damn pool till I feel our rates are justified.

So we've been there every day our schedule allows.

I guess neighborhood pools keep the homicide rate down.  I don't know.  I've never seen so many pools till I moved here.  Either way, our pool is within walking distance of our house so its easy for us to spend a lot of time there.  But we've spent so much time there the kids are sick of it.

And going to this other pool was like we were cheating on our own pool.  And to be frank, I want to start a love affair with this one.  A dirty piece of work that would be but this thing was HOT.  It had cool water dumping things, life guards, more water dumping things with wheels and tons of other things.  Did I mention life guards?!?  And there was another little pool that was nothing but water and only went to four feet deep.  Then there was a wave pool specifically designed for tots.  There was a water slide as well.

See, it was a thing of beauty.  Worthy of my love.

This new pool shits all over our pool.  Look at that thing.  Our pool is a basic hole in the ground with a baby hole off to the side.  I'm embarrassed to show you pictures.  But this thing?  This thing??  A thing of beauty.  Pictures do not do it justice.  

Again, worthy of my love.

But since it costs $36 admission for the day, plus food, drinks and snacks which was about another $36, it was a one shot deal.  I don't care how swank this thing is/was I'm not going broke over a pool.

Coolest pool ever.  

And the kids loved it.

I about crapped my pants several times loosing them in the water structures, having visions of them floating top-side before I could get to them.  Nothing like that happened of course but I guess that's precisely why it didn't.  I can't imagine bringing my kids to the pool and even thinking of:

1. sitting down  
2. enjoying a good book
3. texting till my fingers were numb

All of which were things I saw parents doing while their children were reenacting the Lord of the Flies.  I don't get it.  

Grandma and Gracie, far right.  Her lady bush
was tucked in.  I checked.

Alex loved it.  It had this big pot at the top that emptied every 2 minutes and dumped out water.  I know this as a fact.  I know because we timed it.  A squillion times.  We then took the average of the dump times and rounded it out.  Blamo, two minutes.  Alex was not pleased with the lack of precision associated with rounding numbers but I suppose he is correct.  Rounding out numbers is quite useless.  

My favorite part?  Zero entry.  And misters at the water's edge.  Misters.  They had misters.  So your little feet didn't get all hot and burnt.  Swoon.   

This was the best part for Alex.
Waiting for the pot to empty with his swim instructor.  

While I was taking this picture I had several thoughts running through my mind but one thing outweighed them all.  And it was this: all his stims, quirks, stress/anxiety related motions, articulations and tics are non-existent right now.  Sure, we have a few bumps and last night really tanked but nothing like during the school year.  

He's relaxed.  

He's happy.  

He's having the time of his life.

And I want to take this time, stop the clock, and make it last forever.       

It's Double Bubble at our house.

It's no secret that my son has anxiety problems.  He fidgets, bounces from foot to foot, gets up, sits down, gets up and sits down again.  He's in constant motion until he falls asleep.  Even then, he's rubbing the blanket to determine the texture and thread count. 

I don't know why I was shocked when he started up with vocal stims.  But I was.  He had a bout with strep a while ago and from that he developed a habit cough which spiraled into a full fledged stim.  At one point he was up to over fifty coughs in under two minutes.  I stopped counting after that. 

After school turned it into a complete cluster asking him to stop, to get a drink or eat some magic mints we went into habit reversal mode.  Step one: ignore the problem habit.  That's as far as we got.  The stim went down but not away.

He started to have other vocal noises--chirps, boops, squeaks, raspberries, beeps, you get the idea.  After visiting with our child psychologist, we came up with the idea to use gum to help with the stims.  Give him the gum to transfer the stim. 

It seems to be working.

He has a preference though.  It has to be Double Bubble.  Not Hubba Bubba.  Is there a difference?  You bet your ass there is.  I made that mistake exactly once.  Double Bubble.  No exceptions.  So I've taken stock in Double Bubble and supplied the school with their own stock pile. 

We did have one blip on the gum thing.  School has a rule and it specifically states: "No chewing gum on school premises."  We had to do some pretty hard work on letting him know it was OK for him to chew the gum while at school. 

And he's going to need a mandible replacement at the rate he's chewing.  He's been averaging seven pieces of gum a day while at school so I've been bringing them in a new bag of gum every week and a half. 

The noises are down and it seems to be working so I'll brave the eternal fires of hell (WalMart) to get his beloved gum.

For future reference, Target only stocks Hubba Bubba.  Yes, I was that desperate not to go to WallyWorld. 

Don't judge me.   

Now I'm off to get more Double Bubble.


Note:  I know I'm using terms loosely here.  Things such as stim, habit, tics.  Honestly, to me, they basically amount to the same thing.  Things he does to help block or filter stress or help calm him with his anxiety.  I've not put too much emphasis on what the correct vocabulary is but rather why he's doing it and how I can find the right way to help him.  Please excuse my lack of technical adherence on this post.  


I wrote this a while ago and his vocal stims are still present.  He's added new ones such as rolling his bottom lip with his fingers and he's been twitching his neck, mainly on his left side.  He's recently added a vigorous head shake.  I know it's all anxiety related to school winding down as they decrease significantly after being home for the weekends.  


We're all ready for school to be over soon!  Two more days, a week off, then we're taking this hot mess on the road to Sanibel.  Fair warning if you live in the vicinity......