Monday, October 12, 2015

Autism Educational Series—Speech Issues—"Hardly Bored"

Dawn lives in rural Texas with 5 boys, 3 cats and her wonderful husband. She has been blogging about autism, food and depression for a while as HardlyBored. Her passions are her boys, proving gluten free doesn't mean flavor free, laughter, reading, teaching, and gaming. You can find her at her blog, Hardly Bored and on Facebook, at Hardly Bored.

What words mean
I have a favor to ask: can you take just a moment to think about all the things you convey to those around you with your words? Just for a minute, think about not being able to say I love you, or I hurt; to say you feel, hunger, delight, joy, and sorrow.
Sometimes you can't find the words. Words simply escape you; sometimes you are born and words are more than just hard, they do more than escape you.

Think how hard it is for someone who has autism (or any number of other verbal issues). My son often can't find the words, or any words, to say ,"Open my drink please," or, "Help me make this," or, "I am hungry," or, "I am tired," or, "Turn the channel." He can’t say, "I am scared," or even, "I "love you."

I dare you go through one day and try not to talk to those around you. I assure you, after even an hour or two you will be so frustrated you want to give up. He doesn’t have a choice, or he didn’t.  Try it for weeks, months, and years—can you imagine how frustrating? How very demoralizing that is? How angry would you be?

When you can't express yourself with words or even gestures, anxiety can build, maybe even causing you to do things you regret. Sometimes you hurt yourself or others. Maybe you scream and flail, maybe even throw things. When you learn to control that frustration you do other things to cope: line things up, spin, hum, recreate scenes from movies or TV.
Words have weight
If you are forgiven for something you have done or told that someone you love who was ill is finally feeling better, you feel lighter. It is often referred to feeling "as if some weight has been lifted from you." Equally, someone can say a mean or hurtful word and you can feel weighed down by it. If a stranger smiles at you, it is not the same as if the same person were to come up and say, "You are beautiful," or if your child looks you in the eyes for the first time and says, "I love you." Those moments make you feel so light you think you might fly!

Words can be used as a weapon. When someone calls you something awful, it can hurt even if they don't know you. Those words often can’t be taken back; they break part of you, they make a crack that is never the same again. It might heal, and healed breaks are often stronger, but the scars are still there, reminding you of who they came from. So next time, in anger, hurt, or frustration, remember to think about those words, because the weight of them can change the person they are said to forever.

Our life has been filled with a mixture of words; sometimes they hurt, sometimes we fly, some just help us learn.
In my autistic son’s life, I have seen him go from a baby who learned his words (they were a task for him, but he learned), and then one day, the words were gone. I found out later this is called regression. This first regression took his words. He went from a two-year-old with about a 100-word vocabulary to no words; not his name, or food, cup, bottle, or binky. Nothing. Every word was gone. The doctors wouldn’t listen; they told me it was fine, normal even, for kids to stop talking, or to have limited vocabulary until they are 3 or 4. He was my 4th child. I knew better. I demanded tests, hearing, vision. After some reading ,I asked for blood work. They poked and prodded him and still found nothing. I cried and worked to help him learn to talk again. Then the doctors told me maybe he had a learning disorder, they used the "R" word. I could see how very bright he was—the things he would do—figure out maps, puzzles, and mazes so quickly that I couldn’t keep up! He would defeat child locks, program a DVR with ease. Finally, I gave up looking for an answer, and at 4 I asked for help with his speech. I could teach him words but helping him retain them was an issue. Through a family friend, we found a speech teacher who specialized in kids with autism. She did one session with my son and realized what was going on. So we went to another doctor and finally they agreed and diagnosed him with autism.
He is now 13. He not only has words, he now has sentences. He still has a lot of trouble finding the right words, or saying them clearly enough for us to understand. However, I love every single word he says, even when he is angry, even when he asks me for something for the millionth time in two hours. Most of all, I know the weight of them, the wait for them, and the empty feeling of when they are not there.
I spent years begging him to please weigh me down with his words, tell me his hopes, his dreams, when he hurts or needs a hug. I am still waiting for the weight of his hopes and dreams but I have been blessed with, "I love you, Mom." That was the most amazing gift. Sometimes the lack of words reminds you what a gift they truly are.