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Where do we go from here?

You just got the official diagnosis…PDD NOS.  What next?

You begin to process the emotions as you look up letters that meant nothing to you a few days ago.   Pervasive Developmental Disorder-Not Otherwise Specified…what the hell does that mean…today…tomorrow and beyond?

Today, it means your heart is broken. That little child that has won your heart and soul, is suddenly disabled. You start looking up everything about autism trying to find a slight glimmer of hope that with medication, education and prayer, he will suddenly wake up one day (soon) and be perfectly normal and everything will be hunky dory.

The more you read, the more depressed you get. You go through a mourning that you never imagined.

The doctors flip flop between experts on autism, and the run of the mill doctors that say things like “I will need to call his psychologist, to see if he is breathing through his mouth because of the autism.” and “You know more about autism, than I do.” When you don’t need to be an autism parent, to figure out that your child is breathing through his mouth because he has a stuffy nose…DUH!

As the years go by,  you come to terms with the beast called autism. You have all of the therapists, IEP meetings and doctor’s appointments on the calendar. You have it all under control, or so you thought.  Then you see other children his age, doing age appropriate things…sports, bikes, making the principal’s list, dating, driving preparing for college.  All of these milestones of your child’s peers  become nails through your heart.   At first, these days come rapidly.  But as the years accumulate, the days come less often, and you may even realize that you haven’t crashed into a pile of pillows in months or even years.

Then once your child becomes an adult, you have a whole new set of concerns…what now?  He’s out of school, he is unable to work, he cannot be left unattended, he may even be incontinent.   Do you keep him home with you?  Do you try to find him a nice, safe, group home?  Is he happy?  Does he feel loved?

Even though our journeys are parallel,  they are not the same.  No one can walk your mile in your shoes. But we can hold hands, and offer shoulders to those walking beside us.

I would like to offer these words,  don’t measure your child by anyone else.  Don’t ever let your child know that you are disappointed.  Always encourage your child to do his very best and you are proud of his accomplishments, even if he is 17 and just mastered making his bed (incidentally, this task is usually not mastered by the typical 17 year old)

Always, tell him that he is loved, assure him that you know he understands, and he is trying.  And above all, make sure that he knows that you are his biggest advocate and fan.

Eventually, you will be okay.  And when you are not okay, reach out to someone else on the path and let them know.  You are not alone, just look around, and you will see others reaching out to you too.

~ASM

 

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The Private Parts

When I was growing up we didn’t say certain words.   Those words were nonexistent in our home.  Private parts were not talked about.  I vividly remember riding my brother’s bike…remember banana seats?  Remember how you would slide off of it, like butter in a cast iron pan? Well, I slid off the seat…on a boy’s bike.   The memory I have, isn’t  the actual slip-up (or down as the case may be) but of telling my mother that “it hurts where I pee from”.
I made a promise to myself that my children would never feel embarrassment from having to discuss any body part.  Now, mind you, I didn’t want them yelling out as if in a Kindergarten Cop movie.  But I certainly, didn’t want them to not be able to talk to me openly.   So I decided to compromise (because, as you can see, I am still not very comfortable saying those “dirty” words).
What I came up with was “pee-er”   Boy and girls can have pee-ers.  (and yes, as they got older, I planned on using the correct terminology). And there’s a fly on my wall that gets quite a belly laugh out of me yelling at my 25 year old son to “PUT YOUR PEE-ER AWAY…Nobody wants to see that!!!”
So fast forward to Buddy at about 5 years old.  We were in the process of attempting potty training (which failed).  We were also in the process of training a new service provider. (which I hate to this day)
So here we are Buddy, the main provider and the new back up provider all in the bathroom.  I had told her that we call his boy part, a pee-er.
As I stood in the kitchen nearby, I heard the new provider say something, and I listened.   She said it again.   When they came out, I asked her what she had called it…she said “Pierre” …I started laughing as it all clicked in my head.    Pee-er sounded like Pierre which is French for “Peter”.  … “yes, yes” in French is  “oui, oui” (pronounced “wee wee”).  Even now, nearly 20 years later, I still get a little giggle out of it, and wonder… if I could find a little beret, would Buddy keep his Pierre covered?
~ASM
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It’s all about the dance

Buddy loves his music, he will find a song that he likes, and play it continuously for days…weeks and months.

He has several favorite songs, but he will usually favor one tune to play the life out of.   Thankfully, we have the same taste in artist/songs.  Unfortunately, this means that several of my CDs have been pilfered and what was once mine, has become his…that is, until he breaks the CD or scratches it beyond repair.

When the inevitable happens, he brings the remains of the disc to me to fix.  Which, sometimes I can, but more often than not,  I have to slip it out of his sight, until it can be safely tossed under something gross in the trash.

Several month ago, Buddy and I started attending a dance, and I requested one of his songs.  I pulled him to the dance floor and wrapped my arms around his waist and we swayed to the music.  This has become “our thing”.   It is known that we dance to this song  at each dance.  He even knows it.  And he seems to like it as much as I do.

Lately, he has been listening to Elvis “I Can’t Help Falling In Love With You”.  This evening I went into his room and it was quiet.  I discovered that the CD was broken.  I know how much Bud loves this song, so I did what any good mother would do, and I burnt him a new CD of Elvis tunes.

When I put it in his player, he grinned ear to ear and pushed the “next” button to hear 3 second snippets of each song.  I helped him to find his favorite, but he he kept pushing the button for more snippets.   I told him to wait and listen to the songs, as I took over the button pushing.   I stopped at all the songs and sang a little bit and he would reach for me to push it again.  I finally stopped on “Return to Sender” and he let me sing a bit as he giggled.  Since he was standing, I grabbed him and made him dance with me.  (cuz, I’m the mom and that’s what moms do)  After a minute or so, I left the room so he could enjoy his music without me ruining it for him.

About an hour later I walked by his room and he is playing “Return to Sender”.  I tell him that it’s time for bed and he needs to turn it off.  He then grabs me, pulls me to him, wraps my arms around his waist and puts his arms around my shoulders.  I say “Okay Buddy, Mom will dance with you”.  We danced for several minutes, only stopping long enough for him to push the rewind button after the chorus.   Each time that I tried to pull away, he pulled closer.  Each time I said “C’mon Bud, it’s bedtime” he’d push the button again.

I don’t know if he thought he was getting away with staying up, by dancing with me, of if he was letting me know how much he appreciated me making him a new CD.   But either way…

It’s all about the dance.

~ASM