School has been underway for nearly two months, and I'm happy to report that Drew is doing very well in the mainstream setting. Other than a couple of issues getting his teachers and support staff used to his personal FM system, the start of Kindergarten has gone exactly as planned.
Drew has enjoyed making new friends, and asks to have a new friend over for a play date nearly every week. His favorite part of the school day is either gym or recess, depending on the day. Drew is reading. He has math homework. He has been superstar and shared stories with the class about his crazy family. He loves being at the same school with his sister.
Our life with a Kindergartener is so normal. Just how I prayed it would be.
This past weekend, over 18,000 athletes ran though the streets of downtown Columbus, competing in The Columbus Marathon. This year the marathon raised over $875,000 for Nationwide Children's Hospital.
I'm happy to say that I played a very small role in helping to raise that money for the hospital.
While I am not a runner, I trained for the past 16 weeks to run the half marathon. It was a long training program, starting in May with a Mom of two that couldn't even run three miles. Despite a fairly serious injury to my back, I was still able to start the race. And to finish. I can honestly say that it was the hardest physical challenge I have every had.
It was an intense mental challenge as well. As the miles added up, and the pain became intense, it was the Patient Champions that got me through. Seeing the smiling faces of the children whose lives have been impacted so positively by the care that they have received from Nationwide Children's Hospital was an incredibly moving experience.
And then there is Drew. The reason that I chose to run in the first place. Because of this hospital, Drew is able to hear today. He's able to speak, communicate and go to school like any other six year old boy. Nationwide Children's was the only hospital in the area that was willing to implant Drew under the FDA recommend 12 months of age. Drew has had tremendous success since his implantation. And we have the Hearing Team at Nationwide Children's to thank.
13.1 miles seems like a small challenge when thinking about what he has gone through over the past six years to get to this point in his young life. The countless audiology appointments. Speech therapy three times a week. Full day school from the age of three. Drew has worked so hard every step of the way. I couldn't be more proud of him.
As we transition to Kindergarten, it is time once again for a multi-factored evaluation and writing of a school-age IEP. I'll share the details of that with you soon, as everything should be finalized by the week end.
As I prepared for the meeting with our school district this week, I came across all of Drew's diagnostic testing from five and a half years ago. There is something about reading, "Findings suggest that Andrew has profound hearing loss in both ears," and "no response," that, even to this day, makes me incredibly sad.
My emotions are so mixed. I am so incredibly happy with how well Drew has done with his cochlear implants, and I'm so incredibly thankful for this technology. But I'm still struck at times by the sadness of having a child with a disability, of being told there is something wrong with my child. In some ways, I hate the fact that I even know how to read an auidogram, or that I understand the workings of the cochlea. On the other hand, I am so thankful that I've gone through this journey, as I've met so many wonderful people and I have such a wonderful appreciation for the miracle of hearing. But I hate this for Drew. I hate the unknown challenges he will encounter. If I could take it all back, I would.
We recently had a mapping appointment for Drew's cochlear implants. At nearly five years post implant, we see Drew's audiologist about every six months, just to make sure that he continues to hear well and that his equipment, both internal and external, is working optimally.
I was able to capture this video of Drew in the sound booth. I thought it would give you an idea of what hearing impaired children go through in order to be able to hear. I can not tell you what an awesome job Drew does in the booth. His ability to perform conditioned play during pure tone testing is amazing (although he prefers making baskets to doing a puzzle), and his stamina is unlike any child I know. He can sit in the booth for just about one hour providing us with detailed information on just how well he is hearing. Quite honestly, I attribute a lot of his success with his cochlear implants to his ability to perform in the booth because his audiologist has all of the information she needs to properly program his implants.
This mapping appointment was unique, as we begin to peruse options for Drew's transition to mainstream Kindergarten. During this booth test, we were really looking to get a good idea of how well Drew hears in noisy situations, and his potential need for an FM System. You will be able to see how difficult the noise testing is. On the NU-CHIPS test, without noise, Drew scores nearly 100% every time. In a sound to noise ratio of +10, Drew's score drops to 80%. Now, this is still a really good score, but this testing does not take into account degraded listening situations, for example when noise, distance and reverberation are all present, which occurs in auditoriums, cafeterias and even classrooms.
We determined that we are going to use an FM System with Drew next year, bilaterally. This will provide a clear path for the teachers voice to reach Drew's ears, and will eliminate any possibility of a noisy classroom effecting his learning. There will be many situations where Drew will not be using an FM, at home, during his sporting activities and daily life, so we don't anticipate that his ability to listen in noise will diminish.
I opened my email last night to find one from my Mother-in-Law. It said, "I always check Turn On My Ears, hoping for an update on Drew. No luck. Should I stop checking?"
Sigh.
It has been a while since my last post. I actually didn't realize just how long it has been. Over four months. The days are turning into weeks, and just flying by. Before long spring will be here, followed by summer. (Oh, how I love summer!) Soon, kids will be another year older, and in a different grade of school. This year, Drew will be heading off to our local elementary school for Kindergarten. Completely mainstream.
Wow.
The details of his transition from preschool to kindergarten are currently being worked out. I had a very refreshing conversation with our school district, much better than our last experience three years ago, and I think our family goals for Drew are going to be perfectly matched with a plan from the school district. We're still ironing what sort of goals and modifications Drew will need, but we are confidant that his needs will be very well met by his school.
This is what happens when Early Intervention works. The child receives all necessary services so early on in life that they enter their elementary years with no delays. The last five years could not have gone any more perfectly for Drew. He is right where he should be as a five year old boy, hearing loss or not. I couldn't have written the script any better myself.
