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

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