Monday, December 17, 2007

A Voice for Christmas


I shared the story several weeks ago about Tyler, the boy who used a speech device called a Tango. (See the November 30 post)
He had really taken to it and had wanted to keep it. We had to say no, we were just borrowing it to see if it would work for him.
Well, there is A LOT more to the story and it is due to the efforts of many people. So sit back, relax and enjoy this GREAT Christmas story. You might even want to turn on the Christmas music here on the blog and grab a cup of cocoa. OK? Here we go...
A day or so after visiting Tyler and packing up the Tango device and shipping it back to the OTAP equipment center in Roseburg, Oregon, the speech pathologist, Carol called me.
"I have made up my mind that we need to find a way to get the Tango for Tyler. I don't know how and it seems pretty impossible to do, but I would like to see the $7,000 raised, the device purchased and here by Christmas."
Now this meant we had to have approval by the family as well as the district. It was going to be difficult to get all the details figured out on this. Carol shared these concerns with a gentlemen who had some contacts with foundations that might have money to give. He said, "Carol, you are just God's agent in this. If it is supposed to happen it will. Don't limit what can happen."
I gave Carol the number of our regional AAC sales company that dealt in the Tango and gave the sales rep a heads up on what we were looking at. The company, Aug Com Solutions, was able to ship us a Tango for a week and a half, until Tyler was out of school for Christmas. The purpose was to do a video taping to demonstrate how Tyler uses the device and play it for donation pitches. We also wanted to do a show and tell with the device while we had it to show foundations that would grant an audience.
The next challenge was the shipping. It was going to be $50 to get the device here in time and then ship it back. Carol asked the school staff if they could pass a hat and collect money to get Tyler's device back and try and raise the money to get him one. No problem there, the staff rallied and the device was on it's way! This was Dec 3rd or 4th. The race to get Tyler's voice by Christmas had officially started and the momentum was starting to build.
Carol and the special ed teacher, Jennifer, made an appointment to see the head of a local foundation. They also had found several charitable groups, Wildhorse Casino's foundation and corporate donations that might be possibilities.
The day of the first appointment a terrible ice storm shut schools down and stopped traffice on the roads - they had to re-schedule. Several days later, they took the device, a copy of my first blog entry to read if needed, and the prayers of lots of people.
The wife of the foundation director met them at the door. "Come this way," she said, as she led them to his office. Carol shared with them that they were there to ask for help funding a speech device for a boy with cerebral palsey.
"I don't care what it costs," the wife said, "You had better give them what they came for!" She apologized as she had a prior appointment and let herself out.
Carol and Jennifer shared the device and showed the director what it could do for Tyler.
"So how were you thinking of raising the money?" he asked.
"Well," started Carol. "we were hoping that we could get this by Christmas for Tyler. So if you were willing to give us half the money, and loan us the rest with no interest until June, we would work to pull in the rest this winter and next spring."
"How much is it?" he asked.
"7,000 dollars" replied Carol.
He thought for a moment. "I think I would like to just purchase the entire thing".
"Can I hug you?" asked Carol. "You just need a hug for being willing to do this!"
He smiled. "If you come up with this need again for another student, let me know. I might like to help with getting another one too."
Carol and Jennifer went out on the porch and hollered "Whoo Hoo!" jumping up and down. It was actually happening!
The next step was convincing mother. You see, as any good parent would be, she was concerned about using any device that would become a crutch and stop further language development. Our job was to let her see him use the device and convince her that the Tango would actually support and encourage more speech and communication.
I came over a day before the meeting with mom to prep Tyler on how to use the device. I showed him a secret weapon on the device that kids from day one have been able to use to warm a mother's heart. (Be prepared, you will learn what that is in a few minutes!) Tyler also had a school play that was being video taped for a classmate that couldn't participate because he was in the hospital. Jennifer had programmed the Tango with Tyler's lines so he could "say them" in the play.
The next day, we met with mom. I came early and everyone was in a staff meeting. I walked down the hall, and behind me, Tyler came in with his mom and older brother. Tyler ran to me in the way only he can and threw his arms around me. "You must be his buddy Lon," said the mother.
We shook hands and introduced. I led them into the speech room where the Tango laid on the table waiting for Tyler's demonstration. Tyler wanted to turn it on and show her right away. I told him he would have to wait. Carol, Jennifer and the principal would be there shortly. I shared some information on the device with mom and began to build my case. I casually threw in some of the advantages to having the device and we also made small talk about the holidays, plans and interests in general. By the time everyone came in I had made some new friends!
Tyler pressed "power" as soon as the first adult came through the door. He began to have it share his thoughts. The first one was "This is cool!"
Carol shared with mom the plan to use this to supplement his speech - not replace it. Tyler busied himself with our "secret weapon"...
"I love you mom" came floating up out of the Tango as Tyler wrapped his arms around his mother.
"Who could say no to that?!" I asked with a smile.
"I think this would be great for him," said mom.
"We have the resources to get it, but needed to make sure you were on board before we could proceed," explained Carol.
We all laughed and cried as Tyler teased and joked with the many comments he had mined on the device during his week with it. We all left the meeting feeling that we were experiencing the real miracle of the season.
"When do I get mine?" asked Tyler today while I went to visit.
"It was shipped today," said Carol. "the check is in the mail and the company has two devices they are trying to get delivered by Christmas day and yours is first on the list."
Tyler smiled.
His play is tomorrow afternoon. Three men (I'll call them three wise men), were instrumental in Tyler getting this device. One was the first acquaintence of Carol that gave her the advice to not limit what could happen. The second was the man who gave some seed money and referred her to the third man who donated the $7000 for the device. These three wise men will be at his play tomorrow afternoon where they will be officially thanked in a school assembly by Tyler and the school.
We helped Tyler program what he will say to them:
" I want to shake your hand."
" Thank you for giving me my voice."
Thank you Tyler for giving us a reason to believe that miracles really still happen at Christmas!
Merry Christmas everyone!
Here is the Tango site if you want to see the device. The home page has some great videos.
Post script:
The mother has released permission for us to video "Tyler" with his Tango. The play is being taped tomorrow so maybe we can post a clip on here. The Tango company has heard bits and pieces of this story and are excited. If Tyler gets his device in time, our local paper, "The East Oregonian" is planning to get a picture of Tyler and his device for the front page on Christmas morning. Aug Com Soutions wants a copy of the video and further demonstrations to see if Tango might want to post one on their site. I will keep you posted on all these things. ALSO...I LOVE and appreciate comments. When I look and there is a comment I am excited. It lets me know people really are coming here and reading. There are exciting things planned ahead in the next few months on how I am going to use this blog to link many of us together to do good for kids - so spread the word - refer friends to this blog and let me know your thoughts.
Thanks!
Lon


4 comments:

Lynn Evans said...

Lon,

This is so wonderful. I am teared up and late for lunch because I couldn't stop reading.

Great work! Keep it up.
Lynn Evans

Liz said...

Wow, Lon! What a heart-warming story. Thank you for sharing. Tyler is very lucky to have you, Carol, and others looking out for him. Way to go!
Liz Wicklander

Jennifer said...

Thanks so much for all of your help with getting this for Tyler. It was so awesome to see him doing his part in the play today. Because he didn't have to focus so much on what he had to say he was free to gesture and really act up his part. It was wonderful!!

Linda said...

Wow what a wonderful story - it really does make you "believe" in miracles. My daughter is special needs and has poor communication levels too. I can fully understand how the mum felt when she heard her son tell her he loved her...wow tears to the eyes.....