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

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

How Autism Changed Me.

How autism changed me.

Before my son was diagnosed with autism, I was a different person.  Looking back I can see how naive I was about so many things.  I was superficial, vain, self centered and insecure.  I was so afraid to stand up to anyone, and I took myself way too seriously.

I didn’t say much for fear that I would say the wrong thing at the wrong time to the wrong person. And I was afraid of people laughing at me.

After my son was diagnosed my life began to transform.  I guess it was my patience first.   I remember people saying things to me like “I can’t wait for you to meet my cousin’s little girl…she has special needs and I know you will just love her!”

When I began to see that Buddy’s father wasn’t stepping up to the plate, I knew that it was all on me…I had to make the hard decisions on my own.  The first one, was to get divorced.  When I told Buddy’s dad that I wanted to move several hours away and take Buddy with me, his response was “When are you leaving?”  That sealed the deal for me.  Now, B’s dad loves him, I have no doubt about that…but Buddy wasn’t the son that he had dreamed of.  Quite frankly, I think his dad was (and still is) embarrassed by him.

This brings it back to me…I didn’t want Buddy to ever feel that I am embarrassed or ashamed by his autism.  So once we moved, I became B’s one and only, and I had to take charge.

With the divorce, I had total control over Buddy.  If his dad called, I had to answer the phone and hold it to B’s ear, and try to get him to giggle or make some sound so that his father could hear him.   If his dad wanted to visit, I had to make the arrangements. (once even letting his dad stay at our house).

When his dad refused to pay child support, or help with school clothes and Christmas, I had to make sure that my frustration didn’t show in front of Buddy.  I could have easily not answered the phone.  Or told his dad that he was napping or not home.  But I didn’t.  It wasn’t about me,  I had to do what was best for B.  And what was best, was making sure that he had a relationship with his father.  Even to the point, of sending cards on the appropriate holidays on B’s behalf.  Most of the time even putting a gift card in there.

So that part of me changed.  And most recently, I have noticed that I am willing to post unflattering photos of myself, as long as Buddy is “loving on me” or he looks great in the photo (it’s very hard to get a good photo of the boy).  There is one that I posted just last week, my face looks like a beach ball with squinty eyes and wind blown hair, but B is looking at me with such love, that my heart fills every time I see it.

Another part that has changed, is that I will sing.   Now, I know that I cannot sing my way through Happy Birthday.  So even at parties, I won’t sing.  In church I would never sing louder than the voice in my head.  Yet, last summer, we had family visiting, and I found myself singing to Buddy in front of them, just so they could see his reactions to his favorite songs.

So, I guess one of the good things about autism, is that I have become a better person because of it.

~ASM