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

Sometimes I Like To Imagine What It Would Be Like If My Son Didn’t Have Autism.

Me:  “Morning Bud!”

Bud: “Mornin’, what’s for breakfast?”

Me: “I made eggs and bacon.”

Bud: “Can I have sausage instead?”

Me: “Sure, I’ll have it ready when you get out of the shower.”

Bud: “Thanks, Ma, you’re the best.”

~~~~~~~

Me: “Hey Bud, how was school?”

Bud: “It was okay, I think I aced that quiz.  Hey, is it okay if I hang out with the guys after I get off work, tonight?”

Me: “Sure, just be home by 10, it’s a school night. Where will you be?”

Bud: “We’re gonna grab some burgers or something.”

Me: “Ohhhh, burgers…is SHE working tonight?”

Bud: “Yeah… she said I should stop in and say hi. I think she likes me.”

~~~~~~~

Bud: “Mom?  Mom, wake up!”

Me: “What’s wrong?”

Bud: “I had an accident, the road was wet and I went into a ditch.”

Me: “Are you okay?”

Bud: “Yeah, but I think I messed up the car.”

Me: “As long as you’re okay, the car doesn’t matter.”

~~~~~~~

Bud: “Mom, I’m thinking about asking Julie to marry me.”

Me: “Oh, Sweetie,  That’s wonderful.  You two are so good together. I really like her.”

Bud:  “Do you think you can help me pick out the ring?”

~~~~~~

Bud: “Mom, It’s a BOY!”

~~~~~

Bud: “Mom, I love you and I want you to know how much I appreciate all that you do for me.”

~~~~~

Sometimes, I like to imagine what it would be like if Bud didn’t have autism.

 

~ASM

Perception…we all see things differently, especially ourselves.

When you look at a photo of yourself, you see your flaws, but when others look at the same photo, they see your heart.

Two weeks ago my husband had a heart attack. And last week he had open heart surgery.  These last two weeks have been horrible.  I have crumbled more than once.   But I noticed that when I posted updates about Hubby on Facebook, quite a few of my friends and family members commented on how strong I am or that I am “the strong one” in the family.  This made me wonder what these people see in me that I don’t.

So asked one of my family members why everyone has been saying that I am strong, expecting her to say that they were just being polite and encouraging. Instead she said “Really?  REALLY?”  I told her that I didn’t understand what everyone sees.  Apparently, when I see myself as just an average mom, the rest of the world sees me as AUTISM SUPER MOM.

I wonder if they realize that my laundry piles up, there are dirty dishes in the sink, enough animal dander floating along the baseboards to make another furry friend and my son hasn’t been to the dentist in a year?

What my niece told me was that most mothers begin to stop being hands on when their children become preteens, and here I have been doing it for 24 years.

Yes, I have to bathe and dress my son, comb his hair and brush his teeth.  I may have to turn his TV on for him and prepare all of his meals. But even though I still do all that, to me, that doesn’t make me Super Mom, that just makes me Buddy’s mom.

~ASM