Tag: Autism Parent

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Please and Thank You, Really Are the Magic Words!

Communication, what does that mean to you?  Talking, well of course.  But how many of us talk about nothing?  Is that wasted communication?

I remember when Buddy first got diagnosed.  All of the professionals, told us “Don’t waste words… please, thank you, excuse me…these are all wasted words”.   I was instructed to speak to Buddy in short, direct sentences.  “Use your fork.”  “Give me the crayon.”  According to those that went to school to be autism experts, this was the only way to communicate with my non-verbal son.

But the mother in me never listened to this suggestion.  My son, not only hears these words, but I know that he understands them.

How do I know?  When Buddy wants something (very badly) he will kiss my cheek.  If we are visiting somewhere and he is ready to go home, he will hand me my purse and kiss my cheek.  If he wants his TV turned on, he will hand me his remote (or every remote in the house, if I ignore his initial request) and kiss my cheek.  This is his way of saying “Please, Mom”   We both understand the importance of that “wasted” word.

So how does my non-verbal son communicate?  I am sure you have seen the picture cards…they look like stick figure art…(think road signs, or restroom signs), or actual photos of objects, well, Buddy doesn’t use them with me.   Sign language?…Buddy can sign “More”  but that’s about all he picked up.

So, okay, how do we communicate with each other?

Ha, ha…very well.   Buddy understands most of what I say. Even if he pretends that he doesn’t.

For example, when we leave the house in the mornings, I give him instructions.  It’s usually something like “We need to turn off the lights, and then I need, Mommy’s purse, Mommy’s keys, Mommy’s lunch and Mommy’s bag.”  As he completes one of the instructions, I repeat the request, without the part that he fulfilled.  Very rarely, do I need to point to any of these.

Okay, so HE understands ME, but how does HE communicate his wants/needs TO ME?

He is very creative and smart.  As I said, if he wants to leave, he hands me my purse.

If he wants his TV on, he hands me his remote.

If he hands me the “cookie dipping cup”, I know he wants milk to dip his cookies.

If he hands me the nail clippers, and sticks his finger in my face, I know he has a torn nail.

If he removes his shirt (immediately after I put it on him) and tosses it in the coat closet and slams the door…I know he doesn’t want to wear that shirt…and may never wear it again.

If he pulls me to the sink and turns on the water, he wants me to help him wash his hands.

If he hands me a cereal bowl, box of cereal and milk…yup, he wants cereal.

If he hands me a bowl, caramel syrup, and directs me to the freezer…Bud E. Boy, gets a bowl of ice cream with caramel topping.

If we are in the car and he pushes my shoulder, he wants the song/station changed. BUT if he gently taps that same shoulder…he wants the volume turned up.  (how cleaver is that?!)

If he hands me a ripped CD/DVD picture and the tape…yup, you guessed it…he wants me to tape it back together.

Now, keep in mind, it has taken several years for us to learn this.  But it’s quite ingenious of Buddy, to figure out his side of the conversation.

Many times, he has tried to get me to understand, only for me to say “Buddy, I’m sorry, I don’t understand, you have to show me.”  And generally, that results in him getting a little frustrated, but then he discovers another way to get me to comprehend his thoughts.

I remember several years ago, I had a horrible case of laryngitis.  I spent 3 days writing everything down.  It was very frustrating to not be able to speak, and if I didn’t write things down, oftentimes, the other person, had no clue what I was trying to get across to them.

So I think it’s utterly amazing, that Buddy has figured out how to communicate with me.

Oh, I forgot one, my all time favorite…when Buddy pulls me to him,  guides my arms around his back, and hugs me tight (not letting me go)…it means “I love you Mom, you’re my favorite!”   Most parents hear “I love you”…but I FEEL it!

There are NO wasted words!

~ASM

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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

 

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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