Life is Bliss - Lily's Cochlear Implant Journey

Pre-Halloween Experiences - Costumes, Books and Song

Lily has been getting lots of pre-Halloween experiences.  She's read a dozen books about haunted houses, pumpkin patches and bony skeleton fingers.  And the big news is that she decided to be a "puppy dog" for Halloween.  Very cute pictures to come soon. 

Here Lily and Barb, from the Omaha Hearing School, are trying to decide what Lily should be for Halloween.  Maybe a ghost?   Then they read/sang a book.  Each page was a Halloween picture. This one was the Ugly Witch - The witch goes "Hee Hee Hee" and of course they made an ugly face.    

The final picture demonstrates that it is getting colder here and Lily is dressed so stylishly in her leapord print and hot pink accessories.  Pretty fancy!

Omaha Hearing School Adventure

Last week we had our weekly visit with the Omaha Hearing School in Omaha.  It was a blast. 

We are now working with Barb, who clearly adores Lily and Lily adores her.  Barb is passionate, aggressive and very creative.  She had worked with Karen for 29 years, who we miss terribly, but thankfully Karen and Barb have a very similar style.  

We played outside in the school's fabulous garden which was all set up for Lily.  Not only was there an obstacle course, but we played on the "static-free" playground, dug in the sand, played basketball and did an active language exercise with paper flowers. 

At the end of the day, the princess was exhausted and fell fast asleep in her tutu for the ride home.

Lily's IFSP Goals - 2.1 years old

We just finished our IFSP goals for Lily.  She is now 2.1 years old and and has 14.3 months of hearing.  At our next IFSP we will be thinking about preschool and the process of moving to an IEP.  However, this IFSP lays it all out and really provides us with a great guide and benchmarks for the next six months. Thanks to everyone who worked on it. 

• Lily will identify and discriminate between at least 10 word pairs that differ by voicing and by place of production in both final consonants and initial consonants of words.
• Lily will identify and discriminate at least 10 phrases with two key words in context/three key words in context, shown by following associated directions correctly.
• Lily will increase her auditory awareness and discrimination of sounds/words presented at greater distances (6 feet, 9 feet, directions coming from another room) and produced in environments with more background noise.
• Lily will be able to do the actions and recite or sing some words of 6-10 songs or finger plays.
• Lily will self-advocate when her C.I. is off or not functioning and will let adults know verbally when she does not hear or does not understand a spoken message.
• Lily will learn to use a louder and stronger voice when calling to others from distances farther away.
• Lily will take 2-3 conversational turns in an adult social-communication interaction.
• Lily will demonstrate an increase in auditory processing and language comprehension skills, shown by: Identifying 10 pictures or objects by function or action and by naming objects or pictures upon request. 
• Respond appropriately or verbally answering 10 each of simple /who/, /where/, /what doing/, and /yes-no/ questions.
• Follow 10 two/three step directions 
• Show understanding of personal pronouns: me, mine, you, he, she 
• Lily will add to her verbal vocabulary: 10 words from the concepts of Quality (descriptors such as color, size, taste), Position/Space(under, in back of, in front, etc.) 5 words from the concepts of Quantity (some, all, a few, numbers), Time (now, later, tonight, tomorrow) 10-15 present progressive verbs (is+verb+ing), e.g. playing, running, eating, sleeping, At least 5 pronouns: me, my, mine, you, your 
• Lily will increase her communication skills by using this vocabulary in 3-5 word phrases for various purposes: naming("that big dog"), notice or greeting("Hi Mommy), recurrence ("more yummy cookie, Daddy") non-existence or negation ("no go bye-bye," "water all gone," "Monkey not happy"), action ("Lily go down slide." "Me (or I) running fast."), location ("apple juice in cup"), possession ("my red ball"), questioning to gain information("What's that?" "Where___?" "What, Mommy?" ), and attributes ("big blue ball"). 
• Lily will use age appropriate speech sounds in all positions of words and will produce speech that is 80% intelligible to familiar listeners.

A Trip to the Zoo - There Is So Much to Talk About

This week we went to the zoo with some of our CI pals that also work with the Omaha Hearing School.  The other kids are about two years older than Lily and are talking beautifully. 

Karen, the director of OHS, commented that all the Moms were seamlessly reinforcing, expanding and correcting everything each other's kids were saying.  We've all had such great training from Karen, I think it is now just second nature.  We are so lucky that the Omaha Hearing School is able to continue serving our community and providing top-notch oral education to this area of the country.

Highlights at the zoo included Lily's first horse ride, catching butterflies, and the worm Karen helped the kids pick up and put back in the dirt.  Oh what she'll do for a language experience. 

Talking...A Lot - 250+ Words

Lily is saying more and more each day.  We're hearing two words being put together more often and new "vocabulary" appears everyday.  We rarely teach her vocabulary, but it is just evolving and she picks it up from our ongoing conversations throughout the day.  We're still talking a lot.  Lily now responds to our questions, not only with YES and NO but with answers or ideas. 

She also recalls events that connect with that word.  For example, I was talking about various food items Lily and Daddy could eat for dinner.  When I mentioned pizza, Lily said "Ivy," because we had eaten pizza with Ivy the previous week.  The girls were chanting PIZZA in the restaurant, so it must have stuck in her memory.  Then I asked who else ate pizza with us.  And Lily said, "Heather."  Correct.  So cool.  We can go back and forth with conversational turn taking.

I've stopped keeping track of Lily's words so specifically.  We'll still be using the MacArthur-Bates, but I think she may have 250+ or more.  It's hard to know.  New words recently include face, spatula, dancing, potty and see. 

Karen Rossi was here today from the Omaha Hearing School.  She is really a language genius and helps us refuel.  One of her suggestions is that we continue to model WH words, so Lily can ask questions.    Omaha Hearing School has also developed a distance learning program for parents.   I am so excited about this, especially for families who are away from professionals or want more Auditory Oral education.   More details to come. 

Sushi at Sunset

We attended Sushi at Sunset last night. Sound intriguing?  It is an annual fund raiser for the Omaha Hearing School.  Last year it was in the backyard of the school, but this year it was at an art gallery with encaustic paintings and all the sushi you could eat.  So delicious.  

At the event, we met a couple whose girls had attended the school many years ago.  They were still big fans and said OHS made all the difference in their daughters' lives.  They told us their girls, now in high school, are both on the honor roll, participating in band, driving all over town and looking forward to college.   They were so proud of their girls and helped us to see that everything will be just fine. 

Here is a picture of Heather and I demonstrating our skills with chopsticks. 

Additional IFSP Goals

One of the great things about working a lot of different professionals, is that you get lots of different ideas.  Sometimes we have tried to coordinate our IFSP goals, but this go around we seem to have created lots of different goals.  You can never have too many ideas or goals that you are working on at this point, because it is all part of the bigger puzzle. 

I thought I'd post some of those additional goals that we've set in the Omaha Hearing School IFSP, for the interest of others that may walk in our shoes.

From the beginning, the professionals have been asking us, "What are your goals for Lily?"  Goals?  Do all parents set goals for their children every six months from the time they are born?   Yes big life goals like go to college or travel around the world or marry someone fabulous, but not many have goals like families in some kind of special education do, for every developmental area of their child's life. 

For some parents, this may have been an easy question, but for us I am not sure that still today we can answer this question with any confidence or authority.  My primary goal or vision for Lily has always been to have her talk and listen as well as she can and love doing it.  I look to the professional on the steps to get us there. 

Here are some of those additional steps we are working towards - from now until Lily is 2.1 years old. 

1.  Lily will name familiar things in response to the prompt "What's that?"  Continue with "Where's...?"
2.  Lily will respond to more novel directions outside of her regular routine.
3.  Lily will respond to familiar 2-step directions.
4.  Lily will say 75 new words to label and to intentionally have her needs met including her own name, 10 action verbs, 5-7 descriptive adjectives, 2 prepositions of location
5.  Lily will use 2-word combinations: N+N, N+V, V+N, A+N, P+N, Question + N, N+N
6.  Lily will sing songs with a sustained voice and pitch changes
7.  Lily will imitate all Ling sounds
8.  Lily will look at people when they are talking to her and will look at people when she is talking to them, unless it is in a natural situation when she is working side by side with another adult or child. 

New Book: I Promise To Be A Good Parent

Karen Rossi, Director of the Omaha Hearing School, and our Oral Guru, has a new book out called I Promise to be a Good Parent - A Book for Families and Friends of Young Children.  It highlights 10 key "promises" (aka language tips) for parents to make to their children.   The promises are all based on creating meaningful interactions between parents and children and optimizing the young child's development of security, confidence, listening skills, and spoken language. The ideas are simple, yet spot-on, and highlight the fundamental language ideas that Karen has drilled into us like engaging your child, involving them in normal everyday activities, and talk, talk, talk.   It would be a beautiful gift for a new parent.

Memories

I met a family the other day of a 10-month old with hearing aids.  This adorable little baby girl looked just like Lily at that age.  The baby only had a mild hearing loss, but her little hearing aids were neatly taped behind her ears.  The mom said she found double-sided tape in the intimate apparel department. Very clever. We had always used the toupee tape from Sally's Beauty Supply,

I'm not sure why her aids caught my eye, but Lily's Dad saw the family in the parking lot and the baby caught his eye too.  Maybe its "Ear-dar."  The never ending quest of searching for others with hearing aids and CIs. 

As Lily is getting bigger, her CIs seem to being getting smaller.  When she was so little, those hearing aids seemed to take up half her head, even though they were very small compared to hearing aids of years past.  Maybe I am getting used to seeing the CIs on her head now or maybe as her little wispy hair is growing in, the CIs don't seem like they are so prominent. 

One of the most memorable things another Omaha Hearing School parent said to me very early on, when it seemed that Lily was all hearing aids, was, "When we see your baby, we see your baby and yeah she has hearing aids.  We don't see her hearing aids and then see your baby."  It is a fine distinction, but it really made a huge difference for me to know someone was seeing her that way.   Maybe a mini lesson for a grieving parent. 

Seeing this 10-month old baby brought back so many memories of when Lily was little and all that we have been through.  And then I have to laugh because Lily was that little just eight months ago.  My how things have changed. 

LENA - Every Word Counts

Last week during Karen's visit she mentioned that the Omaha Hearing School had just purchased a new speech language measurement system called LENA. It's a new technology that measures and analyzes the amount of language a child receives in their everyday environment. Basically the baby wears a tiny speech listening device that measures sound and then connects to a computer to analyze the conversations that take place throughout the day.

We're excited to check it out. In the meantime, for more info about it, check out LENA's website that offers links to research about language development, sample videos and activities, and some parent testimonials.

OHS Play Groups

We are huge fans of the Omaha Hearing School.  Not only does the school have a 50-year history of Oral Education, but they have a fabulous facility, well trained teachers and a strong parents' group.  This summer we've been participating in the OHS play groups.  Although it means a trip to Omaha, we love talking with these smart passionate parents, who have been on the hearing journey three to five years longer than we have.  Some kids have hearing aids and some cochlear implants, but its great to be with parents and kids that know "what is on your kids head."   Abigail, a 6-year old smart sassy well-spoken redheaded bilateral CI wearer, hosted the group at her house today.  If you didn't see Abigail's technology, you'd have no idea that she can't hear without them. This spring, she even testified in front of the Nebraska Legislature, but that is a story for another time.  Amazing!