Update And First Piano Recital

It's hard to believe that we last updated this blog over two years ago!

During that time, Drew's mom and I have continued to get private messages and see comments come through on various posts and videos, some of which are now 10 years old. Most of the communication is positive and we continue to be grateful that readers find the material on the blog valuable.

Because you've asked, here is what Drew (now age 10) is up to these days.

School

• 4th grade
• At or above grade level in every subject according to teachers and state standardized testing
• Only significant accommodation he receives is his personal FM system

Sports

• Fall: Football
• Winter: Travel basketball and rec hockey
• Spring: Travel baseball and rec lacrosse (lacrosse last year only)
• Summer: Golf

Music

• Piano (lessons for last 8 months)
• He wants to play guitar next year
• He loves watching his sister perform in musical theater and plans on auditioning for his school's 5th grade musical next year

Miscellaneous

• Recently has begun enjoying reading in his room
• Makes friends easily

Here is a video of his first piano recital:



What else do you want to know?

Progress Report - 2nd Grade

It's hard to believe that Drew is now half way through the second grade. His interests still remain entrenched in sports; he has added a love for playing ice hockey to his already long list of football, basketball, baseball and lacrosse. It continues to amaze me how his deafness doesn't hold him back from anything he wishes to do, and anymore, we only have minor adjustments or accommodations in order for him to participate fully.

Drew has found that wearing a skull cap works well when playing any sport with a helmet, particularly ice hockey. And he now enjoys wearing sweat bands, similar to what LeBron James wears, to keep his coils in place while playing football and basketball. He is active, healthy and happy, which makes us very blessed.

We are coming up on the three year re-evaluation of Drew's IEP. With that comes new assessments, which I thought I would share, primarily for those that are new to the world of deafness and cochlear implants.

Clinical Evaluation of Language Fundamentals - Fifth Edition

On the CELF-5, Drew scored above average on the word structure (measures the ability to (a) apply word structure rules to mark inflections derivations, and comparisons; and (b) select and use appropriate pronouns to refer to people, objects and possessive relationships). He also scored above average on the formulated sentences tests (The test assess the ability to formulate complete, semantically and grammatically correct spoken sentences of increasing length and complexity.)

For the remaining CELF-5 tests, Drew scored in the average range. This includes sentence comprehension, linguistic concepts, word classes, following directions, recalling sentences and understanding spoken paragraphs.

In addition, the CELF calculates a Core Language score, which measures a child's overall language performance, which helps determine the presence of a language disorder. Drew scored in the above average range.

The district also looked at Drew's Language Structure, which measures his use of receptive and expressive language to interpret and produce sentences. Drew scored in the above average range for children his age.

Yes, a child who is deaf, scored above average in language competencies and structures. Cochlear implants work. And they work well.

Kaufman Test of Educational Achievement - Third Edition

In addition, Drew was given several assessments from the KTEA-3. This test showed that Drew has very well developed skills in decoding and encoding written language as compared with peers his age. This means that his spelling was very well developed! For a hearing impaired child, this is remarkable. If you can't hear the sounds in the words, it's very difficult to spell.

Cochlear implants work. And they work well!

The overall evaluation for reading reads: "Paired with the KTEA-3, results suggest reading skills in the areas of decoding, fluency and comprehension to be secure." According to Drew's classroom teacher, he is now reading at a mid-third grade level.

The school psychologist working with Drew told us in our meeting that we should treat Drew to a milkshake after school! (And we did!)

Honestly, none of these results surprise us. We see how remarkable Drew is daily. Early identification, early intervention, early implantation. They have all worked together to be where we are today.

Amusement Parks, Roller Coasters and Cochlear Implants, Oh My!

Drew has always been a bit of a dare-devil, much more so than his sister. He loves roller coasters, and now that he is over 48" tall, he is finally able to ride some pretty intense rides. On a recent trip to Kings Island, Drew had his first experience with the maximum thrill rides.

On our past trips to Disney World, Kings Island and Cedar Point, we have simply used a critter clip to attach Drew's cochlear implants to his shirt. This way, if a processor did come off of his ear during a ride, it would be attached to his shirt. However, as the ride intensities increase, we're becoming increasingly worried about their safety during a roller coaster ride.

Drew had a lot of anxiety while riding Adventure Express, one of our first rides of the day, when a processor came off of his ear for the first time ever. He was screaming that he lost his ear, and became very upset at the thought of losing the processor. Following the ride, we were able to remind him that they are attached to his shirt, and we won't lose them. He was fine for the rest of the morning, even riding The Beast with his processors.

As our day went on, Drew worked up the courage to ride The Vortex. This roller coaster goes upside down seven times. Not only was I worried about the intensity of the ride for Drew, but I was worried that even a critter clip would not keep the processors safely attached to Drew. I discussed my concerns with Drew prior to the ride, and he decided that it would be best to take his processors off during the ride. So, Drew wore his processors during the wait for the coaster, chatting with friends and family. As he boarded the ride, we took his processors off and placed them safely in a secure place, and he rode the ride. He loved it! He was so happy and had so much fun. And the interesting thing is that he told us he enjoyed riding the roller coaster more because he wasn't wearing his processors. And that's what he chose to do the rest of the day. Each ride, as we would board an intense ride, we would remove his processers and secure them during the ride. He still wore them for things like bumper cars, swings and the scrambler. But for the coasters, he was perfectly content riding without sound.

It's amazing the difference a year makes - last year we spent our entire day in Planet Snoopy and this year we're doing seven-loop roller coasters. My kids are growing up way too fast!

Drew's favorite ride of the day: The Vortex

Drew's sisters' favorite ride of the day: Flight Deck

Drew's Kindergarten Grade Card

Kids with cochlear implants can't talk, read, or write? Maybe they're too busy singing!

Language Arts Skills - Kindergarten

It's hard to believe, but Drew is half way through Kindergarten! He's enjoyed making new friends this year, but mostly I think he enjoys being at the same school as his sister.

Drew's progress this year has been amazing. Besides a slight issue of talking too much during circle time and missing vital instructions ("Drew can get silly/talkative during group and work time..."), he has matured quite a bit this year and had glowing remarks on his progress report.

The most amazing piece of his report is his development of Language Arts skills. His teacher wrote, "Drew is growing so much as a reader and writer! He always amazes me that he is strong in language arts with his degree of hearing loss." Drew is currently working above grade level in most Language Arts skills, including rhyming, sight words, letter identification, and so on.

I'm really wishing I could have back all of the hours I spent worrying about weather or not he would ever learn to read and write.

He's Off!

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.

Inspire

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.

IEP Meeting

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.

Cochlear Implant "Booth" Testing

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.

School Age Transition

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.

Five Years

Five years ago yesterday we learned of Drew's hearing loss. Yesterday, we didn't even remember. Not a clue that it was the anniversary of his hearing loss. Drew went to the pumpkin patch with his class, told me all about the straw maze he played in and how his teacher gave him a spider ring. It was a pretty cool day.

That's what happens when life is so normal. When early detection and intervention work perfectly.

Click here to read about Drew's diagnosis.

Padawan Drew

We've been busy celebrating Drew's 5th Birthday! It's hard to believe that our little boy is now five years old. We celebrated with a family trip to Disney World - even the Grandparents flew to Florida to celebrate the big event.

One of the highlights of our trip was the Jedi Training Academy at Hollywood Studios:



Seriously, how cool is that? Drew's Dad and I both felt such a sense of happiness watching the little guy on stage. Five years ago, as he was diagnosed with profound hearing loss, we had no idea what these five years would bring for him. A few days ago, Drew was standing on a stage, listening to instructions from from his Jedi Master, just like all of his little Padawan friends, without any help. It's truly amazing.

Drew is now obsessed with Star Wars. He woke this morning asking to go to Target and buy a Storm Trooper helmet. Drew used birthday money this weekend to buy two Star Wars Lego sets. It's actually a bit out of control. But watching him become a boy, who's really into Star Wars, is also totally awesome.

Happy 5th Birthday Drew. We hope it's not one that you'll soon forget!

Alter Ego

Drew really enjoys dressing up as Superheros. He asks nearly every night to watch an episode of Spiderman or Batman "on demand." He uses his imagination to play with his Batcave, and his Spiderman trucks, and just really loves his Superhero friends.

So, it came as no surprise to us, when we were getting ready to go out to dinner one night, that Drew came downstairs dressed as Batman. And instead of fighting with him, and waiting for the twenty minutes it would have taken for him to get dressed, we let him go out to dinner dressed as Batman.

On our drive, we were talking, and Drew's Dad turned to Drew and said, "Hey, Drew, would you like..." But Drew's Dad couldn't finish his sentance. He was interrupted by Drew, who wanted to quickly remind his Dad, "Dad!! I'm not Drew. I'm Batman. Get it right."

O.K. Drew. Our mistake.

And He's Off!

Drew happily ran to the bus on Wednesday, off for his first day of his last year of preschool. I can't believe that this little boy will turn five years old in just under one months time.

Drew loves his bus driver, Mr. Joe. We came to love Mr. Joe as a family last year. He is so kind to both of the kids and really takes care of Drew as if he is his own child. Mr. Joe was out on a medical leave at the end of the school year last year, and Drew was really missing him. The first day of school meant that Drew would finally see Mr. Joe! Drew could hardly contain his excitement to see his bus driver, and bound on the the bus faster than any child I've ever seen. Drew gave Mr. Joe a huge hug, and promptly said, "I can jump off the diving board!"

We're looking forward to a really fun year of preschool, as we prepare Drew to enter the mainstream next year in Kindergarten. It's going to be a great year!

Four Years

We awoke on a beautiful, sunny morning four years ago today, knowing that our son would hear his very first sounds at his cochlear implant activation that day. We knew that the real work would begin that day. We knew that we would be deeply involved in speech and auditory training for the foreseeable future. We knew, no matter what may have crossed our path, that it was the beginning of our sons road to talking and communicating with his family and the world.

What we didn't know four years ago was how remarkably normal our life would become in this short time. That therapy appointments would really become a distant memory, a thing of the past. We didn't know how naturally hearing and speaking would come to him, but it did, and with his cochlear implants he has soared. Four years later our summer is filled with t-ball games where Drew can hear just like his teammates; it's a summer filled with trips to the pool where Drew can hear in the water. It's filled with everything that a little boys life should be filled with.

What we didn't know four years ago was that Drew was clearly born to talk. Happy 4th Hearing Day to our Drew.

Year End Report

We recently had a meeting with Drew's teacher to discuss his performance this year. Overall, we were really pleased with his evaluation.

Strengths:
Drew has strong parental support.
He is a bright chlid who learns quickly and easily.
He has good pre-reading skills.

Weaknesses:
Although he does not qualify for OT services, Drew tends to have fine motor weakness.
Drew needs extra time to search for vocabulary that he wishes to use in conversation.
Drew can be impulsive at times.

Overall, Drew has had an outstanding year of preschool. Drew achieved all of his IEP speech objectives at or above the state criteria level. Drew has made good progress on his auditory skills, and can discriminate between nasal and non-nasal consonants in the beginning position of the word. He can follow directions through audition only using four critical elements. Drew can recognize and name all of the letters of the alphabet. He can now write 24 letters (he has difficulty with K and Y - his teacher felt that his capital Y looked more like a lower case y). Drew can answer 'where', 'when' and 'what' questions after listening to a story.

I think the thing I most notice about Drew is his interest in doing things that are 'school' related. Last year, the boy only wanted to run around with a basketball in his hands, dribbling and shooting hoops. This year, he actually enjoys writing, reading and drawing pictures. On more than one occasion I have found him coloring, on his own, where he actually had to get the supplies out of the closet by himself and started making a picture himself. Drew can write his first and last name quite well now, and he is doing much better with drawing pictures that actually resemble a story or person.

Due to his age, Drew will have one more year of preschool before beginning Kindergarten in 2012.

T-Ball Helmets, Meet Cochlear Implants

Drew's t-ball season is in full swing, and our quest to find a batting helmet that will work with his cochlear implants has finally ended! It was very difficult to find a helmet that would not knock Drew's processors off while being put on his head, and with all of the padding in the helmet, it is next to impossible to adjust his processors after the helmet is on (as I typically do with a baseball cap).

After a long shopping trip to our neighborhood Dick's Sporting Goods Store, we found the Adidas Incite Batting helmet, complete with an adjustable dial! This way, we can make the helmet area wider while physically putting the helmet over Drew's processors, and then can tighten the helmet once it is on. This helmet, in conjunction with an Under Armor Skull Cap seemed to do the trick for Drew's game this past weekend.

Thank goodness! If this past weekends excitement is any indication, this boy is gonna be playing ball for years!

New Sounds

As we sat in a restaurant on Sunday afternoon, eating our lunch, Drew leaned over to his Daddy and said, "What's that sound?" After pausing for a moment, we realized that Drew was hearing the sound coming from the hand-held soda machine a bartender was using.

We weren't really shocked that Drew heard the sound, as we were sitting fairly close to the bar. But we were surprised that he isolated the sound in a crowded restaurant, and recognized that he didn't know the sound, and was so intrigued by it that he just had to learn what the sound was.

Nearly four years later, and I'm still seeing my little guy hear new sounds for the first time. Pretty cool.

Green Beer Day for Me! St. Patty's Day for Toddlers!

In what seems to be my distant past, St. Patty's Day meant one thing - Green Beer! Nowadays, it is a day to play silly leprechaun tricks on my kids and make crazy Irish inspired crafts. Coming up with craft and food ideas can be difficult - there are just so many holidays, and they are all back-to-back, so it seems like I'm just cleaning up glitter and glue from Valentine's Day when St. Patty's Day is here!

Crafts are so important in the lives of children. They can explore different textures and materials, and they can really use their little imaginations. It also helps that crafts offer a huge language opportunity for our children - hearing or not.

I'm not a very crafty person by nature, nor do I have a ton of extra time on my hands to try to be crafty! So, where do I go to find some of my most favorite craft ideas? Family Fun is my go-to resource. I always look for ideas on this site before googling or anything. Sometimes I find that their crafts are a little too old for my toddlers, but with some pre-work on my part or tweaking of the craft, I can make most work.

This weekend, we're going to make shamrocks and leprechaun mirrors. And, for our St. Patty's dessert, we're going to whip up these Rainbow Cupcakes. I like things that are simple and easy and fun for all!

What are some of your favorite craft sites for toddlers?

Erin Go Braugh!

Wordless Wednesday