Monday, February 8, 2010

Have you ever worried about how you'll ever communicate with your 7 year old? Does it keep you up at night, on the nights your 7 yr old doesn't? Communication and the lack there of with Clee is number one on my worry list. It has been ever since he was a baby.

I've longed to hear him talk. When he was 1 yr old and not speaking I used to think to myself: he'll be talking next month. And when it didn't happen, I'd think the same way for the month after that. Then it was: by this time next year, which led to nothing but a broken heart and the feeling of failure. I think mothers of children with autism carry a lot of guilt, well I do anyway.
"Say anything, just say it!" is what I used to plea with him when he was a toddler. Still nothing. But I never gave up hope. He will speak one day.

I remember sitting in for one of his monthly reviews in his amazing school in Connecticut. He was 5 and his review was almost done when the director of the school asked his teacher how speech was going. She told her he was doing well with PECS, but they were stuck on vocal. I remember her cold face turned to me and said "he's 5 and has no signs of improvement. He will most likely never talk." I looked at him. He was smiling. My heart sunk right after that. I could literally feel it drop to the floor. I was devastated, there's really no other way of putting it. No one had ever told me that before her. I mean the thought was always there, but I tried my best to repress it. I did everything I could to fight the tears back, and I would have gotten away with it to, if it weren't for a simple empathetic hand to the shoulder and a "how does that make you feel?" from Elaine. I lost it. I couldn't stop crying. That was the bad day.

Since then I've learned to face the facts that Clee never speaking is likely. Still if someone would come say that right to my face, I would say "I know. I'm okay with that" when really I wasn't okay with it. I would go cry and blame that person for ruining my day behind closed doors.

I've realized that as Clee gets older we are in desperate need of solid communication. Verbally or not, we need something to click with him, which brings me to today.

Clee finally had an evaluation for speech therapy after being on a very long waiting list. The speech therapist was very nice and familiar with Clee because he goes to the same facility for Occupational and Physical therapies weekly. She worked with Clee for an hour and a half, verifying mine and his occupational therapists thoughts on just how bright and charming he was.
After the evaluation she asked me to come into a room where they have been playing, to go over what she thought would benefit him communication wise.
She talked about how wonderfully fast he picked up on the vocal output devise and that he responds better to that than PECS mainly because he's looking for that vocal reinforcer that comes with the vocal output and also because it's an electronic devise- not a book like the PECS. Both are similar from one another so his 5 plus years of working toward PECS can be easily transfered to the new approach.
I gotta tell ya, this really might work and I'm excited to give it a shot.
After discussing where to begin with moving forward, the speech therapist said " I know parents hate to hear this, but he's 7 and has no form of verbal speech. He has no desire to form words. He hasn't been working those muscles that are much needed to speak in 7 years. He's most likely nonverbal for life." I listened to her. Looked at Clee. He was smiling. I looked back at her and replied "I know and I'm okay with that."
For the first time, I really meant it.

It was an overwhelming feeling to know that I'm really at peace with having a life long nonverbal son. I don't know why it's taken this long. I certainly embraced his differences with open arms years ago, I just wasn't able to fully accept him being nonverbal until now. Maybe I just want to hear the words "i love you"come out of his mouth so badly, I was in severe denial. The truth is I don't need a verbal I love you to know he loves me. I can now put the dream behind me, and focus on reality-finding what works with him communication wise.

Communication doesn't have to be verbal. I can have a life long nonverbal son. He can live a life nonverbally. We both can be happy. Now instead of longing for him to talk, I long for him to one day be able to tell us what he's thinking in a nonverbal sort of way. And who knows, he might surprise us all and start talking up a storm, but I no longer anxiously yearn for that day to come.

Today, another battle with autism was fought. Today, I won.
Neener neener.


Grandma Gerri said...

Awww Mom I'm so proud of both of you. Love ya. ;)

Ramsey said...

I think you are the most amazing mom ever and I think Clee is beautiful. Thanks for letting me into your blog so I can't share in your life.

Tice said...

I'm glad you're feeling at peace with it.

ps- The whole "How does that make you feel?" will get you every time.

Brittany said...

It's good for me to have an ever so small glimpse of what it's like for you behind closed doors. Whenever I see you you're always smiling and happy. I look up to you so much!

Meg said...

Best Mom of the century award! You are one tough mama. Props to you and Clee. :)

annie said...


tears are streaming down my face. You truly have a gift to express your feelings.

A thought came to me as I was reading this and I hope I can translate it.

When my sister lost her 4th child, her 2yr old son Boston, in a drowning, she kept beating herself up about how she didn't take as many pictures as she would like.

She lost herself in reading books, scriptures everything and the spirit impressed this upon her, "During the Millenium, you will be able to take ALL the pictures that you want."

I tell you this and I tell myself this, during the Millenium you will have your sweet Clee with you and he will be whole and he will be able to tell you how much he loves you and you will receive such great joy that you will not be able to contain it.

But that is the day I'm looking forward to and these sweet children are helping you and me and others to be better than if we didn't have this challenge to face.

You have been and still are such a great strength to me.

Clee knows above all else that no matter if he does or doesn't talk he is loved and that's the most important thing.

Elaine said...

I love "neener neener"! Clee came into just the right family - Heavenly Father knew we would love and accept him. And now that we have reached this milestone in Clee's life, we are ready to move forward and get all the information we can about output devices. Clee will talk, one way or the other!

PS - Natalie, I cannot believe I asked you that question years ago in CT. You know I was there to hold you up because of our love for you, and what you mean to our family.

Analia and Co. said...

I admire your faith and willingness to be such a good mom. You are awesome. And your Clee is one cute kid.

kristi said...

You go M<3M!!