Tag: Putting autism in perspective

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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

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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

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Putting Autism in Perspective.

Yesterday, I attended the funeral for a young man Buddy’s age. I didn’t know the boy, but I know his mom.  As I sat there, pictures of his life scrolled on a screen.  I saw him go from an infant to a grown man in 10 minutes time.

As I watched this vibrant boy grow into a man, full of life and smiles, people were sharing about his love of surfing, fishing and hunting, as well as his joyful, loving demeanor.

At first I was thinking about this young man being my son’s age and having such a full, active life.  As I realized that I was feeling sorry for myself, I switched gears, and focused on this boys mother.  What a horrible feeling it must be to be saying a final goodbye to your child.

After the funeral, I was very sad for the rest of the day, trying not to think about how I would feel in this other mother’s situation.  And then it occurred to me,  Buddy will never surf, fish or hunt…but he will also never suffer from depression, suffer addictions, or commit suicide.  I am the lucky one here…my son just has autism.

~ASM