I remember sitting in a class once on IEPs. We were a group of five moms and two dads with children all about to turn three. We were terrified of the IEP process and whether or not our school districts were going to provide our children with the services they needed.
Our teacher began talking about the "Vision Statement" and asked each of us to come up with something, just one thing, we really wanted to see our child doing in the next year or two.
The mom to my right said, "I know my daughter is full of thoughts and passions, but she can't tell me any of it. I want her to communicate. I want her to be able to tell me what she is thinking or how she is feeling. Even if it is something very simple, I want her to be able to communicate."
And we all just nodded. We knew exactly what she was talking about.
Communication is key to so many things. Even if your kid can't walk or feed himself, if he can at least tell you that he is hungry or wants to play, this can increase his autonomy immensely.
And sometimes we have to be very creative in helping our kids find ways to communicate.
My son, Ivan, who was born blind, began speaking at about the right age (around a year old), but he lacked the ability to ask for things. All he could do was label or repeat. If we gave him a ball, he'd say "ball." It was wonderful to hear him speak, but it wasn't very functional.
This went on for a long time until finally our speech therapist became worried. She brought in a specialist in teaching signing to babies and he started with one sign, one of the most important signs… "more."
Within the hour Ivan was signing "more" when he wanted the game with the specialist to continue. It was amazing! Ivan soon learned to sign "bib" when he was hungry, "diaper" when he was wet, and "up" when he wanted to be picked up.
These four small bits of communication: "I want more," "I'm hungry," "I'm wet," and "I want to be picked up" where a complete set of conversations for a toddler!
Of course I immediately wrote about our experience on my website: http://www.wonderbaby.org/articles/sign-language-blind-babies
Life is never simple and by age three Ivan had developed a seizure disorder which robbed him of all his words and signs. It's been a battle to get them back for him and we're still working on it. But he has recovered his sign for "more" and added an even more powerful one… "all done," which he can do with enough physical force to almost knock himself over. That's how you know he's serious!
Only having two words at age six is debilitating, but the fact that he can tell us those two things through sign language is a blessing that I would never give up. And I know Ivan relies on being able to communicate those two basic needs.
As we explore other communication aids, we continue to encourage Ivan's use of signs. The more opportunity he has to communicate the better. Of course we would love to hear him speak again someday, but until then we are giving him as much of a chance to use other means of communication as possible!