Life is Bliss - Lily's Cochlear Implant Journey

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.

Moog Center's Parent Workshop - We're in Love! Part 1

We spent the last few days at the Moog Center's Parent Workshop.   We are in love with this place.  The workshop had about 15 families with children from one to five years old who had hearing loss.  Some kids wore hearing aids, many wore Cochlear Implants and a few wore both.   

The families were from all over the country and seriously committed to helping their kids learn to talk and listen.  The last question of the seminar from the parents was when can we come back?

The workshop lasted four days and covered topics such as Modeling and Imitation, Simulated Language Learning, Audiology, Benchmarks, Capitalizing on Routine Activities, Mapping, IEPs, Teaching Family and Friends about Communicating with your Child, Parents Share and a Kids Panel made up of first and second graders and their Moms.  Betsy Moog Brooks delivered most of the sessions and seemed to have an answer for every question that the parents asked.   She meant business and was clearly there to make an impact on kids with hearing impairments.   

Bestsy’s mother, Jean Sachar Moog was also there and presented research on Early Educational Placement and Later Language Outcomes.  She highlighted the significant impact two-year-old classes for D/HOH kids can make in later language outcomes.  These two women are leading the way in helping children learn to talk and listen.  What a thrill to be a little a part of their lives.

The research they gave us about the Moog Center says that at three years old 81% of their kids were at or above their age level in receptive vocabulary and 86% were at or above their age level in expressive vocabulary.  At age five, 94% were at or above their age level in receptive vocabulary, 97% in expressive vocabulary, 91% in receptive language and 77% in expressive language.

It seemed nothing at the Center happened by accident.  Everything was recorded, strategic and intentional.  We would move to St Louis in a minute if Lily was not thriving from the services in our area.   Lily had an hour of speech therapy everyday with Laurie, a Moog SLP, and spent the rest of the time talking with Moog teachers in the toddler room.  At the end of the workshop, we knew everything Lily worked on and where they believed we should put our “language and speech” energy.  

They said we should focus on requiring Lily to use two and three word sentences every time she talks.   Lily has a huge receptive and expressive vocabulary, but just needs to move towards more complex sentences.   If Lily doesn’t attempt a two or three word sentence after we model it, they said we shouldn’t give her what she wants.  

This is their model of modeling and imitation.   It seems to already be working.  Lily is talking non-stop and we don’t know where she is coming up with some of the words and sentences she is putting together.  Some of that started before we got to St Louis, but the "strategy" seems to definitely be accelerating her language.  

The facility itself was beautiful, incredibly quiet for the best learning environment and run with an eye for detail.   We are re-energized!!!

Here are some photos of the Moog Center.

(Note the metal slide and static-free play structure)

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. 

IFSP - 19 Months Old

The follow is a sample from our most recent IFSP.  We post this so you can see Lily's progress and see what we will be working on next.

Current Abilities

According to the infant toddler language scales Rossetti, REEL2, Lily is currently demonstrating receptive language skills at the 24 months level and expressive language skills at the 18-20 month level. She has a receptive vocabulary of approximately 400 and uses about 35 words expressively.  Lily is using developmentally appropriate consonant sounds correctly, plus some later developing sounds w, h, m, p, b, d, k, g, s, sh and a number of vowels all short vowels plus long a, o e, i.  Lily is engaged in vocal imitation and is heard to refine her words or sound productions following an adult model. Lily occasionally uses a gesture with a word to indicate a two-word phrase for requesting; she also demonstrates jargon along with true words in her vocalizing. Lily uses her vocalizations and word approximations for a variety of communication purposes. She varies her sound productions by place and manner of production, varies her voice appropriately, and uses her voice for both talking and for singing. 

New Goals

Lily will increase her auditory awareness and discrimination of sounds/words presented at greater distances, produced in various manners and produced in environments with more background noise. 

Lily will increase her receptive vocabulary for new vocabulary outside the home to 100 words, including 15 verbs and 5 adjective pairs. 

Lily will demonstrate an increase in receptive vocabulary by doing the actions to 5-7 songs when adults begin to sing the songs without doing the actions. 

Lily will demonstrate an increase in her understanding of language by following two/three step directions and by naming objects or pictures upon request. 

Lily will demonstrate an increase in her receptive language by showing appropriate response to humor with words, in books and in various situations.

Lily will add to her verbal vocabulary; her own name, 5 names of people, objects or animals, 5 action words, 5 early modifiers, 2 pronouns, 2 social words, and 2 words of existence/nonexistence or recurrence.  Lily will increase her communication skills by using this vocabulary in two-word combinations in various ways; naming (that dog), notice or greeting (Hi Mommy), recurrence (more up), non-existence or negations (no bye, water all gone), action (daddy go), location (in cup), possession (my ball), questioning to gain information (what's that), and attributes (big ball).

Back to School Tips

While Lily is a few years away from going to school, it's never too early to start planning and advocating for your child. Tonight we're going to a parent meeting with Lincoln Public Schools (LPS) where they're supposed to inform parents about the changes to the curriculum and services for the upcoming year. I'm sure we'll give more rundown once we know more.

In the meantime, here's a link to and article "Deaf or Hard of Hearing Child? What to do BEFORE School Starts" from the Hearing Exchange website with helpful tips for what to do before the first day of school to make the year go better.

IFSP

Here are the highlights of our IFSP (individual Family Services Plan).  In six months Lily will:

- Know 30 nouns, 5 verbs, 2 adjectives, 2 prepositions
- understand - Go get your ...
- Point to named pictures in books
- Increase jargoning
- 2-3 conversational turns with jargon
- Say - What's that and Where's...
- Say 10-15 words and know how to use them
- Say Mommy, Daddy, Gma, Gpa, and Tango
- Knows LIng sounds (mmm, shh, ssss, Ahhhh, eeee, ooooh)
- Does actions to a few songs
- increased practice of learning to listen in noise and from increasing distances
- Increase enjoyment and singing with music.

There are about 30 other goals on the list.  Who knew all of this development was happening so fast.  Too bad parents of normal hearing kids don't get to see and document every step of the way.