Category: Autism Mom

Posted on

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

Posted on

Confessions of an Autism Mom

Okay, time to fess up… I don’t have a clue as to what I’m doing.

IEP’s MRI’s ABA, ASD, IDD, PPD, QRSTUVWXYZ, toilet training,  occupational therapy, speech, early integration, socialization, skill building… (is your head spinning yet?)

I have been doing this for 25+ years and let me tell you, it certainly makes mine spin!

I meet other autism parents all the time and they spiel off all of these acronyms, programs and therapies without taking a breath, and I just nod and smile.

Okay, let me be honest here, yes, I do understand the jargon, and yes, I do and have advocated for my son, to see that he gets whatever he needs.  However, I get overwhelmed with all of the technical verbiage.

I HATED sitting in  IEP meetings (Individualized Education Program) listening to them rattle off all these letters and services, rather than just say… “Buddy, will be getting 3 hours of ____ per week,  on these days.”

Even now, at 25, we have to meet with his team every year to lay out his goals for his new plan.   I admit, that when everyone at the table (usually about 7 of us – Buddy included) starts chattering about the breakdown of hours per service, my eyes glaze over.  Just tell me…what time he is getting picked up and dropped off, and how are we going to meet his goals.  I don’t really care how many hours he is getting to learn to wash his face and comb his hair…I care that by this time next year, he will be able to do it.

When other autism parents start asking me, if I have read the newest book on autism, I tell them no.   I follow about 6-8 bloggers, I have read about a dozen books (when Bud was originally diagnosed)  but I don’t live in the autism world 24/7.  Autism is a part of our world…but it isn’t 100% of my son.  Do I have some favorites?  YES!   I will tell you right now that Temple Grandin and Carly Fleischmann, changed my world. But I don’t feel that I need to read everything out there to connect with Buddy. He and I have figured it out together, we have a tight bond and we communicate (non-verbally for him) in our own way. 90% of the time he figures out a way to show me what he wants to tell me, and 99% of the time, he understands every word I say.

Why am I not knee deep into everything autism?  The best answer to that is, it’s depressing.  If I lived in that world 24/7, I would be miserable.  Imagine a constant reminder that your child, the one person that you love more than anything in the world, is less than.  Not only are you reminded that your child will never be more than a toddler in a grown man’s body, but that you are a failure because you couldn’t fix it.

So yeah, I need to make sure that my son never sees that side of me, and to do that, I focus on him.  Making him happy, making him giggle, being on the lookout for that one little orange Matchbox bi-plane that he played with for months before it broke last spring, and above all, making sure that he knows that he is the absolute best, in my world.

Am I alone?  NO! I have found that there are many of us out there.  We chose to focus on making our children happy and getting them what they need, when they need it, but we don’t dwell on the autism.

Is it wrong to be an autism parent 24/7?  Of course not!  Is it wrong to be an “as needed” autism parent?  Buddy doesn’t think so.  And that’s all the approval that I need!

So, after 25 years I confess…I have no earthly clue as to what I am doing.

~ASM

Posted on

When you think about autism, what comes to mind?

When you think about autism, what comes to mind?  Spinning, stimming, meltdowns, limited language or even no language, maybe social anxiety?  Yes, it can be any and all of those things…as well as many others. And that’s just the “child”.  Parents of autistic children have a few of our own characteristics too.

Our heads spin with frustration when trying to figure out what they are trying to communicate. “Use your words, please.”  But what if there are no words?  Lucky for me, I have a wonderful bond with Buddy, who is 25 and non-verbal.  It took a very long time, but we have built a communication understanding.  He can’t tell me what he wants or needs, but he knows that he can show me, and I will figure it out.  It may be something as simple as handing me nail clippers and sticking his finger in my hand, to show me a hang nail. Or something as complex as putting my hand in his mouth and biting down gently, to tell me that his teeth hurt and he has a sinus headache.  Sometime it takes a little while for me to figure it out, but I most always do.

Meltdowns…yes, we have them too.  I admit that when I am tired, and Buddy keeps turning his TV up full blast, after I have turned it down a dozen times within 30 minutes, I do lose it.  He is a button pusher, so he finds the volume and pushes that little sucker till it won’t go no more!  I thought I had out smarted him by duct taping bubble wrap over the buttons…but the little bugger figured out how to pull the tape off.  So, as a last resort…Super Glue!  Let’s see how long it takes for him to figure out how to unglue that little button.

Limited language…I find myself getting tired of explaining my son to new people.  Now don’t get me wrong, I can talk about Buddy for HOURS. I love to brag on him.  But when I have to tell a new doctor or service provider about him, I just want to shut down.  I find it very difficult to repeat the same clinical information over and over and over…”Normal pregnancy, wouldn’t hold a bottle until 10 month old, didn’t sit until over a year old, didn’t walk until almost 3, blah blah blah”.

Social anxiety…OH YEAH!  For several years, I wouldn’t take him anywhere I didn’t have to. It was just easier to go alone, or not go at all.  But thanks to his wonderful caregiver (second Momma) and the support of my husband, I can now take him to restaurants, doctors offices, and stores.  Now the stores are a little bit more difficult, but we figured out this one too…We always go to Walmart first, and he knows that we go straight to the card section.  He is allowed to pick out one musical card, which he plays all through the store.  This works out perfectly, because he knows the routine, and he gets to listen to a song that he picks. And then he has to give the card to the cashier so she can scan it, and then he has it for the next store too.

So what comes to mind when I think about autism? I think of this awesome young man that makes me think, smile and laugh, he is the light of my life.  Sit down for a couple of hours and I will tell you all about him!

~ASM