No Words

My son is Ian is three and has severe verbal apraxia. Until about a month ago, he said basically nothing. On his third birthday, he couldn’t pronounce his own name properly. He just called himself “eee”.

Apraxia is a short circuit between the brain and the mouth that affects all motor activities, including speech. Ian also can’t blow bubbles or candles on a cake. We had to teach him how to kiss. Even smiling was difficult. The bottom part of his face is a foreign land, and Ian doesn’t have a passport.

Without the ability to tell grownups what he wants or what he is feeling or what he remembers happening yesterday, Ian gets frustrated. He developed a high powered scream that is a punch in the face to all within a five block radius. Today, we went for a hike and Ian pulled on Steve’s pants leg and said, “pi pi.” Steve thought he wanted a piggy bag ride and hoisted him up. Ian screamed that primal scream and we all cringed in pain. I then realized that he was saying “pink” meaning he wanted more pink candy that I offered as a bribe a few minutes earlier. Life is always charades around here.

Ian’s speech therapist had us learn sign language last fall. Ian took to it immediately, because he already developed his own rudimentary signs. The screams subsided, but haven’t left us entirely. It’s really not his fault. Remember the ultimate horror on Buffy was when the demons made everyone mute.

The screams have been hard, but the worst is when I feel Ian fold in on himself. So beyond frustration that he gives up on us all and checks out. He’s in a universe of one.

Other people learn about their children’s personality from how they describe their day at the mall with Dad or how they ask for their favorite breakfast cereal. Without words, we have had to look for Ian elsewhere. By the age of two, he could turn on a PC or a Mac, find Internet Explorer, hit the favorites button, and flip on the Thomas the Tank Engine website. So, he was smart enough. He has his trains engage in various adventures that usually end with an unfortunate crash and an enormous pile up. He’ll look up at me, smile, and say “uh-oh.” OK, a sense of humor. When his brother got on the bus that first of school, he wailed and tried to chase the bus down the block. OK, affection. He’s a great kid, but you have to be very observant to know that.

Ian’s speech suddenly took a big leap last month. He can now say his name properly and about a hundred other words. He can’t string them together all that well yet. He talks a bit like Tonto. “Ian! Fun! Me! Now!” He throws in extra sounds. “Want! Thomas-ah puzzle!” “Milk-k-k” But this is miles from where we were last spring, so I’m not complaining. Last spring, I considered sending him to a school for the deaf where he could communicate with sign language, because six months of therapy had produced no words.

After reading excessive amounts of Internet literature, we have no idea what will happen to Ian in the future. Some kids never learn to talk. Some end up with a slight slur. Almost all the kids with this disability have to work with therapists for many years to overcome this disability.

That means many years of fighting to get services. More in the next post.