Where do we go from here?

You just got the official diagnosis…PDD NOS.  What next?

You begin to process the emotions as you look up letters that meant nothing to you a few days ago.   Pervasive Developmental Disorder-Not Otherwise Specified…what the hell does that mean…today…tomorrow and beyond?

Today, it means your heart is broken. That little child that has won your heart and soul, is suddenly disabled. You start looking up everything about autism trying to find a slight glimmer of hope that with medication, education and prayer, he will suddenly wake up one day (soon) and be perfectly normal and everything will be hunky dory.

The more you read, the more depressed you get. You go through a mourning that you never imagined.

The doctors flip flop between experts on autism, and the run of the mill doctors that say things like “I will need to call his psychologist, to see if he is breathing through his mouth because of the autism.” and “You know more about autism, than I do.” When you don’t need to be an autism parent, to figure out that your child is breathing through his mouth because he has a stuffy nose…DUH!

As the years go by,  you come to terms with the beast called autism. You have all of the therapists, IEP meetings and doctor’s appointments on the calendar. You have it all under control, or so you thought.  Then you see other children his age, doing age appropriate things…sports, bikes, making the principal’s list, dating, driving preparing for college.  All of these milestones of your child’s peers  become nails through your heart.   At first, these days come rapidly.  But as the years accumulate, the days come less often, and you may even realize that you haven’t crashed into a pile of pillows in months or even years.

Then once your child becomes an adult, you have a whole new set of concerns…what now?  He’s out of school, he is unable to work, he cannot be left unattended, he may even be incontinent.   Do you keep him home with you?  Do you try to find him a nice, safe, group home?  Is he happy?  Does he feel loved?

Even though our journeys are parallel,  they are not the same.  No one can walk your mile in your shoes. But we can hold hands, and offer shoulders to those walking beside us.

I would like to offer these words,  don’t measure your child by anyone else.  Don’t ever let your child know that you are disappointed.  Always encourage your child to do his very best and you are proud of his accomplishments, even if he is 17 and just mastered making his bed (incidentally, this task is usually not mastered by the typical 17 year old)

Always, tell him that he is loved, assure him that you know he understands, and he is trying.  And above all, make sure that he knows that you are his biggest advocate and fan.

Eventually, you will be okay.  And when you are not okay, reach out to someone else on the path and let them know.  You are not alone, just look around, and you will see others reaching out to you too.

~ASM

 

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