Big Brother Charlie!

Charlie is our dog and Ella Marie absolutely loves him. She thinks he is the funniest thing. She loves to watch and see what he is going to do next. Charlie always wants to be in the same room as we are with Ella Marie. He has had to learn which toys are hers and which toys are his (he was used to being the only one in the house that got toys brought home to him.). It is actually pretty funny....now one of Charlie's favorite toys is the baby bottle squeak toy that he has. I guess he thinks that if she has a bottle, he needs his too.

One thing among all of the many things that are great about our dog is that he engages Ella Marie in trying to talk. Since she is fascinated with him she vocalizes a lot when he is around. This is one thing that we are so thankful for. Ella Marie needs to vocalize as much as possible and we are happy with anything that will help her do that. Thank you big brother Charlie!

Auditory Verbal Therapy - October 13, 2009 (Ella Marie 5 1/2 months old)

Today we met with our speech therapist and discussed our goals for this week.

Goals of the Week:

1. Our goal continues to be working on vocalizations that vary in "DIP" (Duration, Intensity, and Pitch). Ella Marie's therapist said that she is doing great with her pitch changes. Ella Marie makes more long sounds than short sounds but this is normal. Also she makes louder sounds more than quiet sounds.
2. We also want to continue working on vocalizations with consonant beginninging sounds (we are not there yet). Ella Marie is just starting the chronological age where children begin to babble (meaning using consonant and vowel combinations which is different from cooing which is vowel patterns only). We must remember that Ella Marie has a "hearing age" of only 2 months old. This is important to remember because we must factor that in when looking at her gains in language. It does not matter which consonant sound we use before the vowel. It is just important that we do it and vary in "DIP." The suprasegmentals that we work on will help Ella Marie to not have that typical deaf speech. We want her to vocalize as close to any other hearing baby would.

A couple of other notes from our session:

• I asked our AV therapist if Ella Marie was on track in therapy for a child whose ABR showed profound deafness. She said that she was and she was doing even better than a typical child with that ABR. She said that there is a margin of error in the ABR so Ella Marie could possibly have severe deafness instead of profound deafness since she is turning to sound. I asked her what the typical 6 month old baby (Ella Marie is 5 1/2 months old) is doing at this time that Ella Marie is not doing. She said that the typical hearing baby is turning to their name and turning to voice. Ella Marie is not there yet. Also some children start babbling at this age.
• For the last half of our therapy session Kelli wanted me to watch a video that was made by Cochlear Corporation. It is called "Listen, Learn, and Talk". Some of the key things that the video brought out were:

1. Hearing Aids should be worn every hour - As the parent you should check them to make sure they are working every morning.
2. When you are speaking to Ella Marie, be close to the microphone on her hearing aid. Do not expect that Ella Marie will hear you if you are in the other room.
3. Use a singsong voice or "motherese" with Ella Marie. Why is this important? Because when you use a singsong voice you are naturally working on pitch changes in your voice.
4. Use language that is appropriate for a child her age.
5. Work/Play with Ella Marie in a quiet environment.
6. Remember that eye contact and turn taking is a prerequisite for conversation.
7. Say words and phrases many times. Repetition is important.
8. Use a lot of spoken language.
9. Listen for different environmental sounds. Tell Ella Marie "Listen Ella Marie, Do you hear the __________? Can you hear it?" Take her to the sound source and talk about it.
10. Use the "Listen Cue". For example, "Ella Marie, listen, I hear the dog barking. Do you hear the dog barking?" Other examples, the telephone ringing and musical toys.
11. Try to get Ella Marie to repeat my vocalizations.
12. Reading books to Ella Marie is extremely important.
13. Sing a lot of songs with Ella Marie. Again this works on "DIP" (Duration, Intensity, and Pitch.)
14. Talk in phrases or simple sentences with Ella Marie. Highlight key words or vocabulary (what you want Ella Marie to focus on) in your sentence. Example: "Ella Marie, do you see the dog?" Say the word dog a little bit louder than the other words.
15. Use acoustic highlighting - This means anything you do to make sound more audible. Examples are using a sing song voice, working in a quiet room, etc.
16. Later we will start teaching Ella Marie the "Learning To Listen Sounds". They cover all frequency levels.
17. Give auditory input first before working with a toy or object. Explain what you are doing first.

Wow a lot of great information. A lot of it are things that either we had gone over before in Memphis or in Birmingham, but it is nice to hear things again and also very nice to validate what we are already doing at home.

Sound Beginnings - Memphis Oral School for the Deaf - October 9, 2009 (Ella Marie 5 months and 1 week old)

Another great experience at the Memphis Oral School. We have been blessed that we were referred from Shea Clinic to go to Memphis Oral School and start working with Nathalie. Today we talked about many things and I have listed our experience below:

• Make All About Me Books and Experience Books for Ella Marie - These books can be in notebooks with sheet protectors, on o rings, or put together with binding combs. Basically there is no correct format to making them. These are similar to classroom books that I made with my first grade students. In the "All About Me" books Ella Marie is showcased with everything that is special to her. Under each picture a caption should be written about the picture. These books will most likely be some of her favorite books to read and look at. On the left side of the book there should be a picture of Ella Marie doing something or somewhere. On the right side there should be approximately 4 pictures that are related to the picture on the left side. For example: On the left side there could be a picture of Ella Marie in her room. On the right side of the page there could be pictures of her crib, her rocking chair, changing table, and bookcase. This book will help Ella Marie develop vocabulary and listening comprehension for what we are talking about. These books will be ones that will be continued to be used. Even if Ella Marie cannot hear exactly what we are reading to her right now, she will continue to see the books even after implant surgery. Again it is important to engage and stimulate her as much as possible because testing is not over so she could be getting benefit from her hearing aids (which we know that she is getting some benefit). With the "Experience Books" These are close to the same type of books as the "All About Me Books". These books track Ella Marie's experiences. Examples of this could be coming to Memphis Oral School, our trip to the Pumpkin Patch, a trip to Nana's etc. Another good purpose of this book is because children with hearing loss have trouble with auditory recall. Books such as these will help them. Of course these books can be as crafty as you want them to be. Also there is research that supports that photographs build self-esteem. Assuming this is true, we want Ella Marie to have a high self-esteem.
• Some of these books can be turned in to "On the Go books". Smaller versions on o rings and she can look at them in the car or keep them in her bag.
• We discussed the importance of exposing Ella Marie to holiday vocabulary such as pumpkin and gourd. Some of these foods, words, etc are seasonal and Ella Marie needs to experience them as much as possible. We have plans to take Ella Marie to the Pumpkin Patch very soon. On this trip or on things like a nature walk, we can talk about what we are putting on, what we see, hear, etc.
• Along with the bullet above, we discussed the importance of talking about different textures, color, and size. We want to talk about everything that she sees, feels, and hears. For example, every minute is a teaching experience. When we are in a store in the garden center we may talk about what the plant looks like, and feels like. We may also talk about the things surrounding the plant. One activity to do with textures is to take a long brown tube and tie different fabrics together that have different textures. Use about 1/8 of a yard of each. Use a dowel rod to stick the fabrics into a tube. At the end of the fabric have a small toy tied with a ribbon. The goal is for the child to go through all of the different textures and get to the toy.
• We discussed the importance of repetition. Children do not learn from hearing something once. We can stick with some of the same things during play until Ella Marie is disinterested.
• Continuing our work with suprasegmentals, we used bubbles and we talked about opening the bubbles and making them go "pop, pop, pop". Ella Marie loved popping the bubbles.
• We talked about the importance of Ella Marie wearing her hearing aids all of the time. It should be the first thing she does when she wakes up in the morning. When she is in her carseat on long trips she will not have them on most likely because if she takes them out and puts them in her mouth the batteries are toxic. Again with anything she hears from her hearing aids we should point it out and talk about it.
• We discussed what a great website The Listening Room is. http://www.hearingjourney.com/listening_room/index.cfm?langid=1
• About half way through the session, Nathalie put Ella Marie in the sound booth. This was her first time to be in there since around 2 months old (when we were just trying to get a startle). I was holding Ella Marie in the sound booth in a chair. Nathalie was sitting on the floor showing Ella Marie a puppet in front of us (to keep her attention so we could test) and Elizabeth, another audiologist, ran the sound booth. We were only able to test Ella Marie at the 250 hz level. This is a lower frequency level. Elizabeth conditioned Ella Marie to turn to a box with a stuffed animal in it if she heard a sound. We know that Ella Marie turned at 70 decibels. They are pretty sure she turned at 60 and 50 decibels as well but they will do more testing to see if that is consistent. Ella Marie becomes good at "playing the game" so we always want to be sure.
  
  

Auditory Verbal Therapy - The Hear Center - October 6, 2009 (Ella Marie 5 months and 1 week old)

Today we had our auditory verbal speech therapy session in Birmingham. We are grateful to Kelli who has given us exercises/activities to do at home. We have already seen so much progress with Ella Marie. This joint effort through therapy sessions and home intervention from us has provided Ella Marie with an environment that is purposefully working on vocalizing and listening. Below you will see what we worked on this week:

• We began this session with informally assessing how well Ella Marie is turning to sound when sounds from various noisemakers are presented. Ella Marie has started consistently turning to sound, but was also consistently turning to the left side. Therefore she was turning to sound, but it was not always in the correct direction. This is not necessarily a bad thing. Ella Marie was not turning to sound consistently before this point so this is definitely a work in progress.
• Our new goal for this week is to vocalize to make an action continue. An example of this is getting her to vocalize for a toy or play to continue. In therapy, we had a toy that would spin around. We want Ella Marie to coo or verbalize for me to make it spin again. Another way to understand this is that for an older child we would not want them to just point to the snack that they want, we would want them to ask for it. It is very important that she learns that her voice can make something happen. Any toy that has an action can be used for this type of activity. This is not a goal that will necessarily be checked off this week. We will continue to work on this goal. Also, we have to recognize that when a toy is new sometimes a child or in this case Ella Marie will be very quiet because they are trying to figure it out. This is one reason why this goal make take a little bit to accomplish. Also, if Ella Marie is not cooing at first to start the toy/game, we can look for any change in behavior such as giving eye contact. We can build on this to encourage talking.
• Kelli reiterated how important it is to say what we are doing before we do it. Example: We are going to make this toy go round and round.
• We are continuing to work on our previous goal of pitch and imitating Ella Marie's her vocalizations.
• We are continuing to work on babbling with consonants ex. ba ba ba or ma ma moo
• We discussed paying attention to the sounds that Ella Marie responds to. Ex. Does she respond to wooden blocks hit together, the cymbals, the dog barking?
• We are also starting to try to get her to recognize voice especially her name. It was suggested that we can add a sound with her name such as clapping. At first she may respond to the sound, but later we can take away the sound.
• Finally we are supposed to continue with the finger plays and trying to get Ella Marie to engage in Patty Cake.

Early Intevention Home Visit - October 5, 2009 (Ella Marie 5 months and 5 days old)

Vicky came to our house for our October meeting. We discussed sign language. She left a sign book here with us. We discussed the difference between American Sign Language (ASL) and Signing Exact English (SEE). ASL is a language that when signing you don't sign it word for word or it may not be in the same order we say it. Ex. yellow duck may be signed as duck yellow. I would like to learn some sign language to use with Ella Marie, but speaking and listening is our biggest goal for Ella Marie. I may need to order some videos because I think it will be hard to learn sign language from books. Vicky also left us a nursery rhymes book in sign language for us to look at. There is a group in Athens, Alabama that gets together and uses baby signs with their babies. We also discussed that the main area that Ella Marie does not do that some hearing babies do is to listen for her name. We will meet with Vicky again in November.

Auditory Verbal Speech Therapy - The Hear Center - September 29, 2009 (Ella Marie just shy of 5 months old)

This week our goal continues to be looking for Ella Marie to change her pitch when she is vocalizing. Notes from our speech session are listed below:

• Not only does Ella Marie need to change her pitch, but everyone that works with Ella Marie should change their pitch in the sounds/words they make. As a hearing person we know that words, sentences, and conversation is not all in one pitch. Our voice changes in a conversation when something we say is interesting, sad, exciting, etc. It is important that we are already working on pitch changes (from low to high) with Ella Marie.
• Puppets are a great way to interest Ella Marie and get her to vocalize. Since Ella Marie is facinated with hands and fingers, puppets are great. We have ordered some from Oriental Trading and there are some on ebay as well that are still new.
• We should also continue doing patty cake with Ella Marie. We want to repeat the song and motions with her many times.
• Peek-a-boo books can never be use too much. When we are reading to her we are modeling pitch changes in our voice, but we are also getting her engaged in books. She really enjoys reading already.
• We continued with our noisemaker activities. This is where one of us is holding Ella Marie and the other person is presenting a sound behind her. We are looking for Ella Marie to respond/turn to sound. As always, we validate her when she hears the sound and point our ear and tell her that we heard the sound too. We say "I heard the cymbals Ella Marie" "Did you hear the cymbals?" We can let her touch the noisemaker but basically we are teaching her to listen. We discussed out the activity jumper/seat would be a great place to let Ella Marie sit during this activity (we have had more luck with the bumbo at this point she has had a hard time turning herself in the seat.).

STEP Training - Support and Training for Exceptional Parents - Memphis Oral School - September 26, 2009

Today, Ryan and I came to a meeting hosted at the Memphis Oral School for the Deaf. This was a "STEP" meeting (Support and Training for Exceptional Parents). A consultant came to speak to the parents about being an advocate for your child. Many great resources were provided. Some of these include a parent manual and the Brown v. Board of Education document. Some of the suggestions or statements made at the meeting are listed below.

• Anytime you ask for something or request something put it in writing.
• Don't throw anything away.
• Placement for your child can only be determined after the IEP meeting
• Your best defense is research. It is up to you to do your research. Find good reputable research from places like Oxford, Yale, and Harvard. Teresa Schwartz from the Memphis Oral School has a lot of research that we can use.
• Keep a binder of documentation. Tab it with different categories.
• At your IEP meeting, look professional (taking food is always a good thing).
• You should be given written prior notice of your IEP meeting. You can ask for a rough draft of your IEP so you can look at it before the meeting.
• Make sure there is someone at the meeting in the LEA position
• The IEP must occur at an agreed upon time and place (this is the law)
• If you choose to record the IEP meeting you must tell the school ahead of time that you are going to do it.
• You have the right to cancel the meeting at anytime.
• There is a device that can go into your computer that will transcribe the meeting notes.
• Always have more than you need at the meeting. Show that you are prepared.
• At the IEP you will be asked to voice your parental concerns. This may include wanting your child to develop oral language and speech intelligibility and being on par with your language/speech with peers
• If odd ball things come up, ask the school to show you their policy on that.
• Always ask for more than you want so that there is room for compromise.
• On the IEP look at the Criteria for Mastery. Look at the goal before you decide the mastery. Ex. is 80% or 90% of mastery ok? Sometimes 8 out of 10 times is ok for mastery, but sometimes it is not.
• Always ask for a rough draft of your child's IEP b/c it saves time so questions and concerns can be answered before the meeting.
• You can request an IEP meeting anytime. You must have it in writing. They must have a meeting with you within 10 days. Go ahead and put down some dates and times that will work with you in your letter.
• You can ask for things for acoustic modification...for ex. tennis balls on all the chairs.
• Always remember you don't want to modify so much that your child cannot function without the modifications if your child is doing well.
• Remember the "I" part of an IEP. It means Individualized. This means what YOUR child needs. Each child works on a different level and has different needs at different times. Do not let the team tell you what they do for other children. We should be talking about what is best for YOUR child.
• Although this meeting was in Tennessee, you can go to TNstep.org and look at the other state agencies.
• In your notebook keep everything...examples are: IEP/IFSP, progress notes, speech reports, evaluations, request of medical records, other services provided.
• In your IEP, make them distinguish between individual or group therapy.
• You do not have to sign the IEP for 14 days (ex. if your husband is not there and you want to show it to him). Services will not start until the signature is on there though.
• Get a case manager from your insurance company. You may need them when you are looking at things that will need to be paid for in the future.

Again, this was a great meeting to start thinking about some things that we will be dealing with very soon. We have gone through the IFSP process and we will be going through the IEP process once she turns 3 years old. I am impressed with the services that Tennessee has had to offer for parents. It was a very informative meeting.