Last Saturday I drove to Ohio for a little getaway. . .I take this trip once a year to have some time with family and friends. I also use this time to reflect, ponder, and have some quiet time at my aunt's home in the country in the middle of nowhere. (I'll write about this visit in another post.) On the way up, I stopped in Cincinnati to meet a new CI friend, Ethan (or E-boy) as his parents call him. Ethan is three years old and has bilateral cochlear implants. His mother writes at " Ethan's World" and I've been following Ethan's progress and story for several years. It was wonderful to meet Heather and E-Boy in person! He woke up from his nap right after I got there and cautiously came down the stairs when his mommy signed to him that he had company. He did not have his "ears" on or his glasses on but Heather took care of that right away. Ethan is a special little boy with a great personality. He is also a challenge because he has some other developmental issues along with his hearing loss. I got to see and hear first hand the trials and struggles that his parents have to go through just to get the care and services that he needs. He has apraxia, which is a neurological disorder. This includes a missing connection in his brain that keeps him from speaking. But he knows many words in sign language and is a bright and happy kid. He doesn't have any trouble communicating what he needs or wants and I loved watching him sign to Heather. He is doing very well for his age and circumstances. And is such a cutie pie! I got right on the floor with him and interacted with him while Heather and I talked and visited. I held some books for him while he looked at the pictures and showed him how to operate the car I got for him. He had to turn the car upside down and check it out first (a future engineer?) It didn't take long for him to take my hand and he started to take me upstairs. I couldn't figure out what he wanted but Heather said that he wanted to show me his tent in his room. He has an Indian teepee in his room and is really proud of it! He also likes to play a game of hide & seek and hides in the kitchen cabinet. He "peeks" out and has a big smile when Heather calls out "Where's Ethan?" Heather and her husband moved to Cincinnati from Athens, Ohio because they were driving 11 hours a week for all of Ethan's appointment and health needs. She also quit her job as a teacher to take care of him and says that being his "administrative assistant" is a full-time job! He goes to preschool 4 hours a day and as soon as she drops him off, she is on the phone or the computer trying to get the services and help that he should have and is entitled to. She is constantly trying to deal with the school system and insurance company and does this day after day. They also have a deaf babysitter for Ethan, whom they love. After hearing in person the challenges that Heather has regarding his education and insurance needs, I went back and re-read her blog. And saw everything in a new light. Why do we have to fight so hard for the things that are needed just because someone can't hear or has a medical issues? I truly believe that the earlier you help a child, the less help (and expenses) they will need later in life. This is just one example.
I told Heather not to give up. Ethan is her son for a reason and she and Rich are the best parents for him because they are doing whatever is needed so that he can be all that he can be. He has a great future ahead of him because he has a wonderful support system with his family, friends, and people that love him and only want the best for him. And that alone speaks volumes. Go visit " Ethan's World" and give them a word of encouragement! Above picture: Heather, Rich, and E-boy (he doesn't stay still for long!)