Month: November 2017

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I Cried Today.

Buddy loves his music.  He has a DVD player and TV in his room, and he plays DVDs and CDs,  from the time he wakes up, until bedtime.

He can find the song he wants, and will play it all day.   He knows, what CD/DVD has the song he is looking for, and how many times he has to push the buttons to get to it.

This morning I was getting ready to pay bills, and Buddy comes out of his room and grabs my arm.   He pulls me back to his room as fast as he can, and I think the usual…he pushed the wrong button and turned the TV off.  And he is asking me to fix it for him.

We get to his room and he pushes some buttons…Tanya Tucker starts singing about a road map of Texas.

I start making jokes, and asking for kisses.  Then I asked for a hug. and he leans over and pushes a few more buttons…he stops and Ms Tucker starts introducing a song.    As she does, Buddy grabs my hands and pulls me to him.

He wraps my arms around him and pulls me into a bear hug, so I start to slow dance with him  as the music begins.

Buddy, understands everything,  so I can only believe that he was trying to tell me something in a way that only a non-verbal person can.

As he held me tight, with his head on my shoulder and mine on his… Tanya Tucker sang “You Are So Beautiful To Me”.

When I looked up and said “Is that what you want to tell me?”  He smiled the biggest smile, and I cried.

I can’t tell you how awesome it is to FEEL loved, when you can’t hear it!

~ASM

 

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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