From IFSPs to IEPs

We met today with the Shelby County Public School system for Brody's Individual Education Program (IEP) meeting. During First Steps (his early intervention here in Kentucky), Brody had an Individualized Family Service Plan (IFSP). This outlined goals that his therapists would work on based on the needs of our family in helping Brody develop. They worked his goals into our daily schedule at home. The IEP is looking at how Brody's delays impact his education. Not that schools don't care about what goes on in the home, but their main focus is the supports and resources that he needs while getting his education.

Over the past few weeks, we've had the initial meet up with Shelby County Public Schools at our house, another meeting at the Northside Early Childhood Center to sign "permission to test" papers, and different evaluations of Brody. Jordan and I went with Brody for his evaluation with a speech and language pathologist. Brody did really well on the test. I thought he would do well, but he exceeded my expectations. When giving these assessments, there is a "ceiling" that you have to meet in order to stop testing. This usually means missing a certain number of questions in a row. Brody never hit ceiling on one of the test. He would miss two then get five more correct. I was amazed! That particular test looked at his receptive (what he comprehends for listening) and expressive (what he says) skills. His standard scores were averaged to a score of 111. The "average" is 100 and there is a standard deviation of 15 so 85 to 115 is the normal range. The kid who could not hear anything before the age of 15 months and has worked so hard since getting his Cochlear Implants for the last 20 months, scored above average in listening and spoken language!!!!! While Jordan and I were over the moon at how well he did, we started getting nervous about him actually qualifying for special education services under the hearing impairment label. We're so glad he is doing what he's doing, but we still think he needs services because he's starting a new environment where he is going to have to listen and participate in a large group (20 students compared to his max of 6 at playgroups). She also gave him a test that looks at his speech sounds. Again, he did well, but she had trouble understanding him when he tried to put words together ("connected speech").

My mom took Brody back another day for evaluations with a vision impaired teacher, physical therapist, and school psychologist. Brody never warmed up to the vision impaired teacher. Oh well. The physical therapist won him over by taking him to the playground and working with him. Brody was able to get around safely although she did see his balance issues. Over the last few months, Brody's balance has gotten a lot better. Because of the hearing loss and Usher Syndrome, Brody's vestibular system is all out of whack. This causes him to fall a lot and to do some things slower than other kids his age. He wants to keep up with the other kids and has been pushing himself to keep up. The psychologist looked at Brody from a pragmatics perspective. This is looking at how he interacts with others. Since there weren't any other kids at the evaluation, she went with Brody to see him in his VIPS preschool class. She observed what we reported about how Brody doesn't initiate play with other kids or unfamiliar adults. He also didn't take conversation turns, rather he answered with one word or phrase.

Today, all of these evaluators plus a chairman, Brody's current SLP, one of the preschool teachers for Shelby County, the Shelby County Special Education Director (who was a former deaf and hard of hearing teacher), my mom, Jordan, Brody, and myself all crammed into a little conference room to go over the results. He didn't qualify for Vision Impaired services, which we kind of expected. While he has the genetic testing to prove he has Ushers, it doesn't currently have an impact on his vision that would have an impact on his education. Like I mentioned earlier, Brody was able to do all that the physical therapist asked of him. Again, he didn't qualify for physical therapy, but we did write in the plan for her to keep an eye on him once he starts to see if he needs it once the school year starts. Brody qualified for speech therapy (yay!) but barely. He qualified with a mild speech delay. He's going to receive speech therapy 6 times a month. He'll be pulled out in a little group with other students working on similar speech goals. He also, barely, qualified to receive services from a teacher of the deaf. She will come into his room two times a week to help him work on his socialization and conversation skills. We've met his teacher of the deaf a few times and love her!

We are really happy with how the process went. A lot of people want to know why we decided to not put him at the school I teach at. For one, class size. The maximum number of students in my classroom is 6. You can only be so social with the same 6 students. Brody's weaknesses fall under that socialization piece. The second reason we want Brody at a typical preschool is the fact that he will have hearing peers to model speech and language. In Kentucky, you have to qualify for free, public preschool under having a disability or being below a certain income. I have had some argue with me that he will be in a class with students that aren't going to be good models for him. I have to disagree. Just because they come from poverty or have a disability does not make them a poor language or speech model. Brody learns best through incidental learning (or "picking things up" that he over hears). Being in this type of preschool environment allows him more access to do that.

Here are some other Brody updates since I haven't updated in 3 months. Oops!

Brody has become super obsessed with birthdays lately.  He thinks all birthday parties need birthday hats, balloons, blowers, and a cake. We celebrates Aunt Sara's birthday last night with a cookie cake. This really confused him! He knows all of the words to Happy Birthday. Others can almost understand all of his speech in it too!

Brody has continued his love for books, numbers, and letters. He also knows all of his shapes and how many sides they have. He corrected grandma the other day about what a stop sign was. "No grandma. Octagon. 8 sides." 

The car is an awesome time for language. Where we live, we have at least a 25 minute drive to and from pretty much anywhere. Brody reads books, sings, and has conversations about our day. He has recently started "singing" to the radio. He will tell me to "turn it on" aka turn it up if its a song he recognizes. He current favorite is Bruno Mars' "Uptown Funk You Up" which sounds bad when you have a speech delay. We try to discourage it in public. :)

We did our third Walk4Hearing this year! We were about $100 short of our goal of $2000. We will get it next year! Brody had a lot of fun! His cousins Mary and Lily came out to walk with us!

Brody has also become OBSESSED with baseball! We took him to a Louisville Bat's baseball game where he got a baseball form the pitcher. He thought he was the coolest kid there.

Brody has been drawing people lately too. Maybe he's going to be an artist like his Aunt Sarah Fromholt!

Happy International Cochlear Implant Day!

When I was a little girl, I wanted to follow in my mother's footsteps. She was a teacher of the deaf and hard of hearing. She's worked in both private schools for the deaf and public school settings. For as long as I can remember, I wanted to be not only a teacher, but a teacher of the deaf. Fast forward years later. My mom and I were both teaching at the same school for the deaf, in classrooms nextdoor to each other. When Jordan and I announced that we were pregnant, she knew instantly she wanted to retire and be a stay at home grandmother. Little did we know that our little baby boy would be born with a genetic condition which caused him to have profound hearing loss. 

When Brody was born, we were given the standard newborn hearing screening. He did not pass either ear, but the technicians reassured us that it was just fluid in his ears and they would retest before he left the hospital. When he was retested, he passed one ear and failed the other. They informed us the machine was malfunctioning. After going home from the hospital, we were back once more for another hearing test. This one was completed by the head technician. Brody failed both ears again and we were referred to an audiologist for an ABR. 

My mom and I thought if he had a hearing loss, it was probably just a mild loss. He would wear hearing aids and be perfectly fine. Brody startled and turned to loud sounds. We were professionals. There was nothing wrong. When Brody went to have his ABR, I had a meeting scheduled for one of my incoming students and didn't think it would be that big of a deal to have my mom take him and I would meet them later on. Half way through the meeting, my mom called and said I really needed to come back to the audiology clinic. Brody wasn't responding to the tests. The ABR bypasses just the ear and looks at the brain's responses. There was no fluid on his ear or equipment malfunctioning. Brody had a profound hearing loss. I was flooded with emotion. Would he find someone to marry him? Would be ok in school? Could he play football or baseball? Of course I knew the answers to all of these questions. Yes! He could do anything he wanted to. My former students are thriving thanks to good audiologists, awesome family support, and the advancement in technology.

Jordan and I soon decided that Brody would receive a Cochlear Implant. Soon after Brody was 5 months old, we received the information on his genetic testing. Brody had Usher Syndrome type 1b. We then decided that we wanted Brody to have bilateral cochlear implants (one on each ear). Louisville surgeons wouldn't do the implants in one surgery, so we decided on using Dr. Choo at Cincinnati Children's Hospital. 

Having the surgery was the easy part. Long, stressful, and emotional, but the easy part. Brody then needed intense listening therapy. You have to have the listening skills before you can learn the speech sounds. Brody was unable to hear any speech sounds (or anything really) so everything was brand new to him. He was 15 months old when implanted, but his ears were only days old. This is considered his hearing age. We are currently 17 months with Brody's hearing age. 

It's been 17 months since his activation. He went from turning to a really loud noise. To following three step directions, singing songs, and being a typical 2.5 year old. BEST DECISION WE COULD EVER MAKE!

Brody LOVES music! He loves to play the piano. He recently got Jordan's old drum sticks and could actually keep a beat. He can sing with tune. He can dance and stop when the music stops or speed up and slow down with the music. 

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He LOVES sports. He can sing "Take Me Out to the Ballgame." He can tell you the name of all the sports. 

We have to make sure we are staying current with his mappings (the programs in his processors). We aren't expected to go to see our audiologist other than every 6 months, however we have been going every 3 months for new maps or some adjustments to current ones.  With every growth sput, Brody's brain is also growing. It is important to listen to the sounds he is producing or not producing correctly. If he isn't hearing it correctly, then he isn't going to produce it correctly. 

Brody is SUPER goofy! He loves making people laugh. He follows in his Aunt Sara's footsteps and loves to entertain people! 

Brody loves new experiences. We recently had a lot of snow. More snow than I have ever seen! We have talked and talked and talked about all aspects of snow!

Brody was in the Shelbyville newspaper!

Brody's skills have come so far in these last 17 months!

We love Cochlear Implants. Best thing we could have wanted for Brody! Thank you Cochlear!

Jingle Bells, Jingle Bells...HEY!

Brody got to join my classroom for 30 minutes before he went to Heuser Playgroup one Tuesday while Grandma took JoJo to a doctor's appointment. You would have thought it was the coolest thing I could ever let him do. He sat with the "big kids" and was in heaven! 

That week Brody also got to go on his first Field Trip. He went with VIPS (his preschool for visionally impaired preschoolers) to Bass Pro Shop. If you have never taken your children there around Christmas, we highly recommend it. Even better than being at Bass Pro Shop, Brody got to ride on the school bus! 

The Davis families (Papa Brown's sister's family) came in town to see JoJo and celebrate an early Christmas. We went with some of them to the Louisville Science Center. They had a blast. One child is only about three weeks older than Brody. It's always good (and bad) to have someone so close in age to compare him to. I know that sounds horrible, but it shows where Brody's gaps are. Following directions wise, they are on the same page. Speech wise, Brody has a ways to go, but he is getting there. 

Cousin Jamie brought gingerbread houses for the kids to decorate. Brody was amazed!

We've been visiting with JoJo a lot over break. She gets upset when she can't see Brody. He is definitely her favorite person!

We spent Christmas in Ohio visiting with the Fromholts/Winkles. Brody had a blast with his cousins. He even allowed his little cousin to sit at his table with him. That's progress as he has been super jealous of her.

Uncle Jake and Aunt Sarah made Brody a Mickey Mouse chair for Christmas! It is super amazing! They also gave Brody his favorite gift, a construction outfit just like Papa Tom and Uncle Jake. Papa went out to the car and came back wearing his. Brody made his wear it all weekend (including when making breakfast). You can never be too safe. Aunt Sara (this kid has too many Saras in his life) also had bought him a construction outfit. So now, he has one to keep at Papa Tom's and one to have at home.

Brody left cookies (and diet coke) out for Santa on Christmas Eve. He was super concerned about putting them on the fireplace since the rules say he isn't allowed to touch it. Christmas morning he was just beside himself that Santa came to his house and ate the cookies! He continues to say "Santa eat cookie" when he passes it.

Brody sang "Happy Birthday Baby Jesus" all Christmas, so he was ready for Uncle Josh's birthday. ("Appy to you, 'osh")

We have been working on potty training. He almost has the hang of it. 

We also dropped the processor in the toilet. Oops! Brody freaked out! We have a dryer for the processors that we put them in every night to help dry moisture out with. It dried it out fast and it is still working fine. I figured it would happen sooner or later!

 Brody got to spend the night with Grandma and Papa Brown while Jordan and I went to the Notre Dame bowl game in Nashville. Grandma was happy to have therapy time back with Brody.

We are 15 months post implant now. Brody has come so far since that day! He wasn't able to give us any response with his hearing aids. We are so proud of his progress in that short amount of time. He still has a long journey ahead of him, but we have no doubt that he will be caught up to his peers sooner than later!

Snow, Thanksgiving, and the beginning of Christmas!

Brody has been a busy little boy! We had our first snow day of the year...in November! Brody absolutely loved the snow this year! He was highly upset when he woke up and saw the snow had melted a few days later.

We got to spend sometime last month with Grammy and Papa Tom (Jordan's parents). Brody is just a tad obsessed with his Papa Tom. Last week after I had to listen to him cry about Papa Tom and phone for the 30 minute ride home, we FaceTimed Papa Tom. Brody was beside himself. He kept showing him the ornaments on the Christmas tree!


The Masseys have made a tradition of going to Southern Lights at the Kentucky Horse Park the Tuesday before Thanksgiving. They have just opened then, and there is hardly any line to wait in.

We spent Thanksgiving at my Aunt Penny and Uncle Rotcher's house in Charlotte, NC. Brody had so much fun with my cousins! So much fun that he refused to nap on Thanksgiving and passed out soon after we finished.

We were invited to attend the Kosair Charities Christmas Party through Brody's school,VIPS. Forget Santa and everything Christmas-y there. Brody was in love with Buddy the bat from the Louisville Bats baseball team. He followed him around and danced with him. When it was time for Buddy to leave, Brody threw a major fit and was so upset. Looks like we well be going to some baseball games this year to see Buddy!

Moooooo! I want candy please!

Brody had a fun Halloween season! He attended 4 trick-or-treats before Halloween night trick-or-treating. I bought his cow costume back in September at one of the consignment sales. I would love to make him a hanade costume, but I don't have the time or craftiness. Store bought it is! He refused to put on the costume. Like literally screaming bloody murder whenever I would show it to him. So of course Papa Brown decided he also needed a cow costume. 

We went to the Louisivlle Zoo's Halloween event. I haven't really been a big fan of it in past years, but they redid the course this year and I liked it a lot better. Brody was happy to put the cow costume on when he saw Papa Brown in his. Brody kept saying "two cows." We worked all week on saying "trick-or-treat," but it was too hard. He mastered "I want candy please." We by-passed all the characters this year. There were long lines and we had just seen them at Disney this summer. He was on a mission for candy and didn't seem to notice them. He did pause for about 30 minutes to dance with the Chi Omegas that we're having a dance party. He was smitten with one girl in particular. Lady's man. 

Jordan and I had a million weddings this fall. While we were at one of them, my parents took Brody to the VIPS trunk or treat. He put the costume on right away when they reminded him he would get candy. Way to a boys heart!

Brody also got to trick-or-treat at his VIPS preschool and at his Heuser Plaugroup. They went around the school at both places to practice knocking on the doors and trick-or-treating. I'm pretty sure he had fun although the pictures don't look like it. 

On Halloween night, Jordan got caught up at work and was late getting home. Brody handed out candy while he was waiting. He loved it until the teenagers started coming around with masks on. He decided that if he held onto the doorknob he would be safe though. If they had a mask, he refused to give them candy. I asked the neighbor if he could take his off to show Brody that it was pretend. Of course I picked the kid who had zombie makeup underneath the mask. He's not a fan at all. We went down the street when Jordan got home, in the freezing cold. About 5 houses in, Brody got a sucker and was done with trick-or-treating. I forced him to go to the three neighbors we know that we hadn't been to yet and then we headed in to get warm. 

He learned a lot of new vocabulary and is using it. When we pulled up to my parents house after Halloween, he said "pumpkin all gone." I was able to understand him out of context and not looking at him!

Brody is loving school!

I am getting really bad at updating this blog...if only my husband liked to write more (because he's much better at it than I am)! Brody has been staying super busy lately. He has added a day to VIPS (Visionally Impaired Preschool Services) in Louisville. He is now going on Monday and Thursday mornings. Side Note...my mom took him on Monday to the ophthalmologist, Dr. John Franklin. Dr. Franklin said that Brody's eyes are looking really good right now! He gave him a series of tests that included identifying pictures. Not only was Brody able to hear and understand what to do :) he also was able to see what he needed to see to pass the tests. We don't have to go back to see Dr. Franklin for a year! Although Brody's vision is okay right now, he gets to go to VIPS because of his diagnosis. Our goal of him being there was that he would learn skills to help him later with the vision loss. He is also around peers his age that talk! Brody has been feeling the books to see if there's Braille. He has also been using sticks like white canes. Clearly our goal is being met!

Brody also attends the hearing impaired playgroup that is at Heuser (where I teach). He goes there one day a week for 2 hours. He walks in like he owns the building. It just confirms that he never needs to be in my classroom! Jordan and I took Brody to Cincinnati for his year post implant appointment. We saw Ms. Bridget, the speech therapist that has been following him. She gave him an evaluation and based her answers off of what we reported and what she saw. Brody scored around 22 months. He's only 27 months. Being 5 months behind and only a year of hearing...I'll take it! Then we went and saw Dr. Micheal Scott, Brody's audiologist. Dr. Scott (who we love and I highly recommend to anyone and everyone) put Brody in the sound booth. Brody did awesome with his listening tasks. First they did some "conditioned play." This involves holding a toy, waiting until you heave the sound, then doing a task with the sound. They switched it up a few times because Brody would get bored. They put rings on a stacker, cars down a track, balls in a bucket, and pegs in a board. Then, dr. Scott gave Brody the WIPI. It's a speech perception test. It looks at Brody's understanding of words he hears. There are four black and white pictures on a page. Some of them rhyme, so you have to listen carefully. Brody only kissed a few! He finished the whole booklet too. He missed school (which when he was asked what it was, he said house.). He switched coat and goat. He missed gun and gum (we don't have accessible to him). He missed another one that I can't remember. Over all, Brody was a star patient! While Brody is listening and doing these tasks, the audiologist is plotting where he is hearing. Brody is hearing between 10-15 decibels (dB). This is normal hearing. Like he can hear leaves rustling and birds chirping. I LOVE TECHNOLOGY!

Brody is also attending Bible Study Fellowship with my mom on Wednesday mornings. So he has the hearing impaired kids, vision impaired kids, and typical kids. He is exposed to a little of everything. Hopefully, it will keep him well balanced. 

His speech is improving little by little everyday. At the store, a lady was able to understand him! His speech still isn't the clearest, but when you are around him and know the context, you know what he's saying! He has learned the "I want..." phrase. He is carrying it over and using it for a lot of different objects. "I want a book." "I want nanana (banana)." "I want ink (drink) ease (please)." "I want ew (shoe)." He is also searching for hints and people. He will say "ear-cha (where'd ya) go?" If he finds you/it, he'll say "Ear (there/here-we aren't sure which) you are." He's using mama and dad (some times dad-o). He knows Papa (Brown and Tom) and grandma. He is starting to say Sara as well. 

He has always loved to sing songs. He is starting to fill in the words now!

Happy Birthday to Brody's ears!

Happy "hear"iversary Brody! In the cochlear implant world, the day your processor is activated, your ears are "newborn." Aka they are 0. So while Brody is almost 27 months old, his ears are 12 months old as of today. If you think about what a year old baby is doing (figuring in some advancement due to his actual age), Brody is doing pretty amazingly!

I even got Jordan to "guest post" for this special day...

It’s hard to believe it has only been one year since the day we went to Cincinnati Children’s Hospital to get Brody’s Cochlear Implants activated. So many emotions went through me at that time. Fear, anxiety, happiness, excitement…everything was pretty overwhelming.
Looking back at it now, I can honestly say the support of my wife (Katie) is what got me through it all. I kind of felt like I had a personal CI/deaf expert that was always with me! I may not have asked Katie many questions, but just knowing that she had background with deaf kids and Cochlear Implants helped me tremendously.

Enough about MY experience, this is after all, all about the Brody Monster! Over the course of 1 year I have watched my son grow from a little baby to a little boy. His personality is starting to show through more & more the older he gets. Seeing your own child start to become a walking & talking little person is a very fun experience. He has plenty of bumps and bruises from being a typical toddler. Chasing the dog, doing somersaults, and singing/dancing to Mickey Mouse are some of his favorite things right now. He’s even started gymnastics to help with his balance and coordination….or maybe it was for all the built-up energy! The greatest thing I’ve been able to see is his speech & listening development.

The combination of services & therapy has made Brody excel in only 12 months after being implanted. His listening skills still amaze me and they get better & better every month. I’ll be the first to admit, I didn’t think it would be this quick to get results from the Cochlear Implants. Being profoundly deaf and getting no benefit from hearing aids was essentially starting Brody at a hearing level of 0 until the Implants were activated. From day 1, Katie & I were adamant that Brody wear his sound processors at all waking hours. I think this has paid off. Brody really understands that the processors are very important and without them he cannot listen to anyone or anything around him. Of course, 2 year-olds tend to test their parents so we have had to deal with processors being thrown and a little boy with a mischievous grin waving them out of our reach.

Brody’s speech continues to improve. He is putting words and phrases together. He will still use some sign language if he doesn’t think we understand him, but for the most part he is completely oral. He likes to mimic everyone and even has tried singing a couple of times! It’s fun to see what new words and phrases he comes up with every week. It really is amazing how quickly he picks things up.

In the end, it has been well worth it. Over a year later, I have no regrets about getting Bi-lateral Cochlear Implants for Brody. I have seen his progress. I have seen him turn and smile when I call his name. I have listened to him say “I love you, dad”. This wonderful technology has helped Brody to adapt to the hearing world that he will inevitably have to face on his own. Katie and I wanted to give Brody the best opportunity to thrive on his own. I hope as he gets older he will agree with the tough decisions that his mom & dad had to make when he was just a baby. In the meantime, we will continue to help him succeed and help him to be the best self-advocate he can be.

Happy Birthday to Brody’s Cochlear Implants…they deserve it.

Enjoying a hot fudge sundae to celebrate!