120 Meeting

We are having our 120 Meeting with our school district today, to discuss the transition from Part C to Part B of the IDEA. All children must transition at the age of three, which for Drew is in September. Today we will be requesting a preschool placement for Drew in Preschool Option C.

We find Option A to be an inappropriate environment for Drew, as he does not need a full time aid to interpret for him. This is not the environment we want Drew to be involved in, as we have no plans on requesting an interpreter when he mainstreams into Kindergarten in a few years. We also have serious concerns about the level of education being provided in the classroom, since there is no circle time, discussion of days of the week, weather, etc. Quite honestly, I would not send my hearing child to this program.

Option B was solid, but we were concerned about the teachers' lack of special education qualifications. In addition, we did not like the limited week schedule and the shuffling of kids from one program to another though out the day. Drew is a little boy that craves schedule, and I fear that a program where he is constantly moving around, not knowing what is coming next, could be difficult for him.

So today, we will meet with the school district and request Option C. It is absolutely perfect for our little boy. Our hope is that it will be approved today and that the Multi-Factored Evaluation be completed before the end of the 2008-09 school year.

Meeting Lily

We had an opportunity to meet sweet little Lily last week. She was diagnosed with profound hearing loss shortly after birth, and like Drew, it is a result of Connexin 26. We enjoyed talking with Lily's parents, and hope that we were able to lend support during this time.

Drew enjoyed meeting "baby Lily." And, as his typical self, he enjoyed playing basketball for Lily's parents, showed off his clear understanding of time outs (as he was showing how he can stand on the table) and, as he ate his snack, showed just what a big mess he can make. I hope that Drew showed Lily's parents just how normal life really is for a family with a baby with cochlear implants.

"Swish"

Recently the Pediatric Cochlear Implant Circle asked me to write an entry for their "CI Circle News" focused on my feelings as a father upon learning that Drew was deaf.

I put it off for a few weeks, wondering what to say. In some ways that day seems far in the past, and in another way I still feel tender bruises. Of course it's difficult to get this personal about my feelings as well.

However, to be true to the purpose of this blog, which is to help other families who follow in our footsteps find support and empathy, to become empowered, I finally sat down to write on Sunday. This is the ink that was drawn from my pen.

Swish.

I couldn’t see. Heavy drops of rain pelted my windshield, lingered, and eventually were pushed aside by the wipers in the fashion of a blinking eye. Swish. I saw nothing ahead but a long road of silence. Of fear. Of Dread. Swish.

Swish. I couldn’t breathe. That long, deep exhale of relaxed contentment, of a world full of bright futures and sunny skies that exists in the world of children were crushed by the dark news of which I had just heard. My chest is heavy. Swish.

“Hello? How did it go?”

“He can’t hear.”

I couldn’t hear. I didn’t want to hear. It can’t be. Didn’t he hear me drop the metal dog bowl just the other day? Remember when he startled to the dog barking? Say that again?

I can hear the raindrops pitter-patter upon the hood of my car, the growl of the engine, the fast-paced beating of my heart – but my son can’t hear? He’ll never get to dance to music like his sister holds so dear? He’s deaf? Swish.

I was numb. I was alone. My wife was alone, learning of this news with no one to hold, finding that all the “I love you” whispers and lullaby tunes had truly gone unheard. He’ll really never know my voice? Here I was, separated from her by a few miles of road, buckets of falling rain, and seemingly everlasting minutes of helplessness. Swish… Swish… Swish…

Have you ever hugged someone and clung to each other for dear life, feeling as though if you let your grip loosen, if you even just moved an inch, that you’d fall off the face of the earth?

Have you cried on another’s shoulder not for your own pain, but for the struggles you foresee ahead for your boy – girl – loved one?

Have you ever felt utterly helpless when looking upon a child’s eyes…and then being unable mask your fear and talk to that child, to tell them “everything will be ok”?

Ever learned what you want in life more than anything else, only at the very moment that you learn it’s the one thing you cannot have?

Swish. What did I do? What can I do?

Nothing.

Swish.

Language Evaluation

We received some very exciting news today upon the completion of Drew's latest language assessment. At 29 months of age, 20 months post bilateral cochlear implantation, Drew tested at 40 months of age! Woo hoo! This test is for typical language development, and in no way takes into account his late start. He is ahead nearly one whole year! Drew's parents are full of excitement this evening.

I have been corresponding with a mother who just learned that her son has profound hearing loss. I so clearly remember those first days. All of the uncertainty. And although this mother lives a thousand miles away, we are forever connected by this experience. It is hard to know in those early days that everything really with be Okay. That life can be normal. My hope is that Drew's story provides comfort to those who have just learned, or will learn, that their baby is deaf. Happy days lye ahead.

I put together a new video of Drew. It's fairly short, but shows you some of his greatest loves: cars and sports. You'll notice that he is only wearing one of his implants in the video. Most evenings after bath time, we will have Drew wear only one ear while we do a little "therapy." We do this because it gives us a clear understanding of how well Drew hears with each ear individually. We know Drew hears very well with both ears, but we want to make sure that his individual ears are mapped appropriately, so it gives us a little insight on how well he is hearing. Enjoy!

Too Loud For My Ears

Drew is hearing quite well these days, and immersed in all of the daily activities around our house.

As we were playing yesterday afternoon, Drew and his sister decided to create a band for our "listening pleasure." Drew assigned himself the drummer, while Drew's Sister was left to choose from the variety of other instruments. She finally settled on the saxophone, but continued to whine about Drew playing the drum. She would have preferred him to select a different instrument.

As Drew continued to drum, the whining from his sister grew louder, and more annoying, as time went on. "That's too loud for my ears, Drew! Whaaaaa!" She continued whining, throwing her hands over her ears in typical dramatic fashion, while continuing to tell Drew that his drumming was just too loud for her ears.

Drew's Dad and I, while largely trying to ignore the situation, finally had our attention drawn to the band playing and whining, when we noticed a sincere act of kindness. Drew, with his natural, loving nature, decided to stop playing the drum, and gave the drum sticks to his sister. It was so kind, and a sincere act of sharing, or so it seemed. As soon as Drew's Sister began to bang the drum, Drew, while throwing his hands over his ears, screamed, "That's too loud for my ears! That's too loud for my ears! Ahhhh!"

It was a total set up. He repeated word for word what she had been saying over and over to him. Such a sweet little boy, with a devilish streak. Can't wait to see what he pulls next.