Talk To Me, Sam...A Speech Moment To Cherish!

When Sam was younger I prayed for speech. I prayed that my non-verbal child would someday talk. I wanted to hear Sam talk, but as often happens, my prayer was vague and lacking definition or as Sam has grown my prayer has also grown.

So...let's take a moment to redefine.

Lord, what I really want is to communicate with Sam and Sam to communicate with me. I would love his oral motor, processing, hearing, listening, receptive and expressive skills to work as you had originally designed them. Amen!

There that's better, now you can debate with me that God did design Sam as he wanted him to be but I believe God expects each of us to develop. We don't come into the world with our potential defined...we come in helpless and innocent and we grow, mature and develop along the way.

In my mind, I feel Sam just has more developing to do, he requires more time and work and along the way God is working on some of the skills I need to develop. Sam is teaching me patience, to slow down, appreciation, joy in small things, laughing often, acceptance of that which is different, empathy, unconditional love, thinking outside the box, and he challenges me to question the best ways to teach, interact and enjoy our life together.

I will never say I understand God's plan or that I can even begin to figure it out but I think he gives me moments or windows when I get to see the progress and that which is to come. I want to share one of those with you.

On a cold, snowy day Sam and I decided to watch a movie together. Now if I let Sam pick we will watch one of his favorites which I reserve for medical appointments only. His favorites are "Wild Hogs", "Like Mike", "The Pacifier", "Tarzen 2" and one Jeff would rather not have me mention "Uptown Girls". I actually like each of these movies too but when I can sing the "Panda Song" from "The Pacifier" or I know the theme song to "Tarzen 2" by heart or Sam does the beginning actions of a movie or recites the words before they are said I think they need to only be watched in times of high stress. Sooooo, I chose the movie.

I don't always have a lot of luck in getting Sam engaged in new movies. If it doesn't catch his interest and there is no popcorn or soda involved it is not going to be enjoyable. So I grabbed the Wii control to check out our options on Netflix. Have I ever told you how much I love the option of playing Netflix on the TV through the Wii??? Well, if I didn't it ROCKS...oh wait, let me clarify....it rocks if I have control of the Wii control. I never realized you could play back scenes or play only your favorite scenes until I was taught this by Sam. Sam quickly figured out the Wii control and how to replay his favorite scenes which is not something good for a child with stimming behaviors but yet it shows his ingenuity and resourcefulness.

I wanted something educational and interesting but what I didn't know was that God had chosen this moment to inspire me again. I chose the Imax movie Beavers.

Now I know you are thinking, really Sue, how inspirational can beavers be?? The movie is filmed from the perspective that you are the beaver. So when the beaver jumps in the water you jump in, when he/she goes through the grass you're following after, when he chews down the tree you're looking up watching it fall....I think you can get the idea. There were a couple of things I loved about this movie. There wasn't a lot of auditory or words to distract Sam or frustrate him into tuning out. The visual aspects of the movie were amazing and engaging. In reading the movie reviews a lot of people were unhappy that some of the movie was staged or that they used tame beavers and it wasn't an actual representation of the wildlife...okay....but it worked for Sam and I.

Before I explain why this movie was a success for Sam let me explain some of Sam's issues with communicating. Sam has a hearing issue and I truly believe that a child with a processing issue along with a hearing issue is going to struggle with speech. Sam thrives on visual input but struggles with auditory input. Sam has hundreds of words but struggles with pulling out the right word at the right time. Sam likes to talk at you but not with you. Sam struggles with attending to a conversation or question and he often answers incorrectly. Sams finds it difficult to stay on topic and tends to have very random conversations. Sam has found that playing movies or programs in his head is easier and more understandable to him than the effort required to hear, listen, think and reply so he often chooses the easier and more enjoyable route also known as stimming. Sam gets easily frustrated when he attempts communication but someone doesn't understand what he has said. Sam loves to talk about food about 90% of the time.

I recently came across a blog, www.hearagain.blogspot.com of an adult that had hearing but then became deaf and is now regaining hearing through a cochlear implant. He answered the question what is it like to be deaf?

Firstly, my answer is that, you are never in silence. Like most hearing impaired people I have something called tinnitus. It's a sound that you hear in your 'mind' - it's very difficult to explain really but I distinctly remember getting it after I was exposed to loud sounds such as discos (I was young once!). In my right ear it's vaguely like the sounds coming from an untuned television (white noise, I think they call it) and in my left it's a metallic hum something like an engine. It gets uncomfortably loud when I'm angry, or sick, or on antibiotics sometimes.

Anyway, back to the original comments. It's not easy to explain what it feels like. But, imagine one of those simple outline drawings that you sometimes see - they give you the picture, but there's something missing, there's the richness of colour, of dimension, the concept of movement that you only get from a full colour picture. That's the closest I can explain it really.

It's very isolating, it's very frustrating being deaf. Some people completely come to terms with it to the point that they prefer to be deaf....

Now what I hear is broadly comparable to hearing underwater, that bubbly, blurred, blocked sound that comes in. If I had to apply a texture to it, I would call it green pea soup (thick, filling but strangely satisfying), without the bacon (which I allegorise with the background sounds that one hears) to make it more interesting. If I had to apply a colour I would say a very faded red - a distant memory of an interesting colour. My mind has adapted and accepted the sounds I hear as 'normal', but they aren't normal, by any definition.

Wow, after reading this I looked at Sam differently. I don't know how Sam hears or what he can hear. I have been told that his hearing loss is mild and yet a hearing loss of any kind with a processing issue has got to be difficult. It makes sense why Sam prefers to swim underwater, to blur the auditory world along with the benefit that people don't try to talk with you when you are under water. I think Sam's hearing fluctuates with illness. I also feel that Sam's world is missing the auditory portion and therefore it is lacking the fullness and experience we have daily. Sadly, I often think Sam would prefer to be deaf, to not have to deal with a confusing auditory world and then we have a moment like the movie....

As we began to watch the movie Sam and I immediately found the beavers to be adorably cute creatures. The sounds they made sounded similar to Sam when he was very young. Along with the wonderful visual images the sounds of nature and the beavers pulled you into the movie.

Sam and I began to talk our way through the movie and with the added visual images that we were both attending to the conversation blossomed:

Sam: Go, beaver, swim, swim.

Sue: Wow, the beaver swims fast.

Sam: Out, water.

Sue: The beaver is getting out of the water. Where are you going beaver?

Sam: Chew tree (followed by chewing noises).

Sue: Uh, oh

Sam: Tree falling, uh oh boom (Sam laughs)

Sue: Watch out beaver!

Sam: Move, tree fall you.

Sue: Move beaver, the tree will fall on you.

Sam: Big tail (said after he heard and saw the beavers tail go over a branch and thump on the ground.) Funny, I was thinking the same thing.

Sue: Big tail for swimming.

Sam: Swim fast.

Sue: Yep, that big tail helps him swim fast.

At this point, I am thrilled with the amount of interaction, Sam staying on topic, Sam answering appropriately, Sam enjoying an auditory exchange...we are communicating. It's funny how God works...at this point in the movie they show a beautiful rainbow and the meaning of the rainbow is not lost on me in any way. The Bible shows us that when we look on a rainbow God is looking at that rainbow too. When he looks he remembers his covenant. When we, as individuals, look at a rainbow and we remember also this same covenant there is a meeting of minds. Sam pulls me back out of my thoughts...

Sam: Mom, bootiful rainbow.

Sue: Yes, Sam it certainly is. (I say with tears in my eyes)

The clouds become dark and Sam says:

Sam: Uh oh, storm coming.

Sue: A big storm is coming.

Sam: Snow, winter.

Sam: Mom, ice water.

Sue: The water has ice on it.

Sam: Beaver, cold.

Sue: The beaver has warm fur.

Sam: Coat

Sue: His fur is like a coat.

Sam: Dark, night time, moon out.

Sue: The moon shines at night.

Sam: Home (and he snuggles with me) Daddy home.

Sue: Mom and Dad are home with Sam at night.

Everyday Sam asks me when Daddy, Danielle and Ben will be home and I thought it was just one of his repetitive phrases but now I understand that night means we are all home together and that is important to Sam.

During the next part of the movie the beavers are mating which Sam refers to dancing (that's okay with me, I'm okay not to have to go there) and they have babies. Sam begins again.

Sam: No baby, stay here (as the mother beaver keeps the babies together)

Sam: Be careful.

Sue: The mother beaver takes care of her babies.

Sam: (turns and gives me a hug) (No words needed)

In the next scene the beavers are chewing trees further away from the water and a bear comes.

Sam: No bear, go away.

Sue: Don't hurt the beaver, bear.

Sam: Run, beaver, run.

Sue: Get in the water.

Sam: Beaver okay? (As he looks at me concerned)

Sue: There's the beaver, he's okay Sam.

Sam: Good, naughty bear.

In the next scene the beaver encounters a skunk. I can see Sam is trying to pull out the word skunk but is struggling.

Sam: Mom, mom, mom (hesitating)

Then he plugs his nose and says "stinky".

Sue: Skunks are stinky.

Sam eyes light up. "Skunk, yeah!"

The next scene was Sam's favorite. A bear is climbing the tree the beaver is chewing on and the tree and bear fall into the water.

Sam: Naughty bear, got you.

When the movie ended I had the surreal feeling that I had witnessed a communication miracle. Sam moved on to something else and I took a moment to pray and thank God. I will leave you with a quote from a friend. Jenny Marrs, a fellow mom of a wonderful young man with Down syndrome wrote this to me and it has always stayed with me:

God is good...it's these little windows of revelation that let us know every now and then that we are on the right path. It's the faith we have to keep in between these times that is so difficult. I live for the revealing moments....they make the struggle worth it.