A New View of Communication

Like most people in the world, I used to think that communication involved using words to let another person know what you wanted/needed, what you were thinking about, etc. Since starting this journey with Iann, I have discovered that is 100% false.

We first started to realize that Iann was delayed when my mother-in-law pointed out that he wasn't progressing in how he played with toys. When I asked Jon's sister, and ER Dr, what she thought, she said, "Yes, I can see what mum is talking about, but it worries me more that he isn't babbling."

Iann's only way of letting us know his needs was to cry or whine. At this stage, 15 months, he didn't point at things he wanted and it was clear that he didn't understand what I was saying to him. He didn't follow simple directions, such as 'Bring me your snack cup.' He just looked at me blankly.

A year, and many hours of therapy, later Iann is still classified as 'non-verbal' but he is definitely communicating. It is fascinating for me to learn how many skills a little boy needs to master in order to speak: his central nervous system must be aware of where his mouth and tongue are (Iann's is getting there); the lower portion of his face, including jaw, lips and tongue, must all have enough muscle tone to move together correctly (Iann's doesn't); he has to learn how to 'turn his voice on' when he wants to say something (slowly becoming one of Iann's strong points). With a normally developing child, all this happens without parents realizing. Not so with Iann.

However, one of the most important foundations for speech is the understanding of how powerful communication is. How empowering it can be to make oneself understood. This is where Iann is blasting forward every day. An example:

On weekdays we follow a pretty normal routine in order to get Brynn to school in time. The boys wake up, we eat breakfast, Brynn gets dressed (Iann too if he's had a 'blow-out'), the dog gets fed, I make Brynn's lunch, we get in the car and off we go. A normal weekday routine. On the weekends, it all slows down a little. Brynn watches Saturday morning cartoons, Iann paddles about, and I drink my coffee with a good book. This morning was no different.

Until Iann came up to me, patting his mouth, it. At first I thought he was blowing kisses, so I said "I love you too honey." But he kept doing it. I payed a little more attention to him (keeping it honest here), and thought about what he was trying to tell me.

"Do you want to eat, love?" I asked, thinking he was trying to sign 'eat.' He nodded his head, smiling from ear to ear. We ate dinner at some friends house last night, and I distinctly remember their 2 yr old saying "I'm hungry." The exact same thing Iann was now telling me.

He felt his hunger, and came to me (initiation), told me what he wanted (communication), and kept on when I misunderstood him (persistence). Three very powerful, and important, tools.

Iann is communicating.. He doesn't use words, he uses a mixture of sign language and pointing, with a fair ammount of whining thrown in for good measure. While he does sometimes babble 'ma-ma-ma-ma' when looking at me, he has never really said 'Mama.' He has certainly never said 'Dada' but has a sign approximation for him.

What's that, you ask? Well you know how kids come up with their own version of words when learning to talk? The same is true with sign language. There is only so much you can do with your hands, and it is hard for little ones to get the nuances of finger movement down. The placement of your thumb on your head on one side says 'dada' while on the other can say 'cow.'

Bottom line, Iann may be at a 6-9 month level in terms of verbal ability, but he is way ahead of that in overall communication. And, any good Speech Therapist worth his or her salt, will tell you that is most important. Sure, he's not signing or comprehending at a 2 1/2 yr old level yet, but he's catching up everyday.

Will Iann ever talk? We sure as heck hope so, although according to the Fragile X literature I've read, he may not do so until he is 5,6 or even 7. Gulp. Then again, he may surprise us all and start talking by the end of the summer. Either way, 99% of boys with FX do learn to talk.

In the meantime, I am going to start teaching the people who are around him most - who aren't therapists - what he is saying with his hands. I am sure there is nothing more frustrating for him then to be saying something and the person he is talking to, not understand him.