Monday, October 19, 2009
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!
Goals of the Week:
- 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.
- 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:
- Hearing Aids should be worn every hour - As the parent you should check them to make sure they are working every morning.
- 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.
- 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.
- Use language that is appropriate for a child her age.
- Work/Play with Ella Marie in a quiet environment.
- Remember that eye contact and turn taking is a prerequisite for conversation.
- Say words and phrases many times. Repetition is important.
- Use a lot of spoken language.
- 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.
- 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.
- Try to get Ella Marie to repeat my vocalizations.
- Reading books to Ella Marie is extremely important.
- Sing a lot of songs with Ella Marie. Again this works on "DIP" (Duration, Intensity, and Pitch.)
- 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.
- 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.
- Later we will start teaching Ella Marie the "Learning To Listen Sounds". They cover all frequency levels.
- 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.
Sunday, October 18, 2009
Sound Beginnings - Memphis Oral School for the Deaf - October 9, 2009 (Ella Marie 5 months and 1 week old)
- 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.
- 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.
Auditory Verbal Speech Therapy - The Hear Center - September 29, 2009 (Ella Marie just shy of 5 months old)
- 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
- 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.
- We should go on a "Listening Walk" through the house with Ella Marie's hearing aids. We have something that we can test her hearing aids to "hear through them". When we are walking around the house we can see what all is amplified. It will actually surprise most people to hear everything that is amplified.
- We discussed how most babies hear better in low frequency tones.
- We should continue to mimic her sounds (turn taking). Turn taking is a prerequisite for conversational speech. Also when we are trying to get her to mimic our speech like ba ba ba, or ma, ma, ma we can use tactile clues such as quick taps on her. The tactile cues would be short because the sounds ba ba ba are short. etc.
- Ella Marie should have books read to her for at least 20 minutes a day. Children love books with photographs in them. They also love books with pictures of other babies in them. A great book is Margaret Miller's Baby Faces. At this age Ella Marie does not need to be overwhelmed with pictures. Picture albums are great to talk about what is in the picture to Ella Marie. You can talk about body parts from the pictures. Other great books are Baby Einstein Mirror Me and First Words Book. Ella Marie should also engage in tactile books and cloth books. One book we read today was called Little Blossom. A couple of suggestions for reading aloud to her include reading to her while she is on her back on a blanket, let her sit in a bouncy chair while she is read to, or in the glider right before she goes to sleep.
- We discussed how many great toys for therapy can be found for cheap at TJ Maxx.
- The Memphis Oral School invested in something called a "Lena System". This is a recorder that records what the child says and the parent says throughout the day. Then it is hooked into a software program and it will print out how much we are talking to her throughout the day and how verbal she is. It will compare it to a hearing child her age.
- We discussed the importance of keeping Ella Marie's hearing aids in. Nathalie told us that soon she would most likely be starting to pull them out. She also said that when babies teethe they start pulling their hearing aid off. Pilot caps can be worn to help with this. We also received a sheet on hearing aids that had some great points. This sheet is from the Listen Around The Clock Program. "A normally hearing baby listens for about 10 waking hours per day, 365 days per year. That adds up to 3,650 listening hours per year. If your baby wears amplification only 3 hours a day, it will take over 3 years to give your baby as much listening experience as a hearing baby or a baby who wears amplification all waking hours. The normally hearing baby listens for 10 hours a day to develop speech and language. The baby with hearing loss deserves no less."
- We disussed the affect on speech development with speech composition and intelligibility. Since some sounds are not clear vocabulary must be taught ex. clown and crown.
- When/if Ella Marie receives cochlear implants we will not see a lot of changes in the first year. She will learn to detect sound. Her "hearing age" will start over. She will be expected to do what a typical hearing baby would do as an infant. Our goal will be to close the gap from her chronological age and her hearing age as fast as possible.
- We discussed the importance of doing finger plays with Ella Marie and songs such as patty cake. We should pick 2 or 3 and do them over and over with her.
- Songs are so important in developing language with Ella Marie. The Wee Sing Series has a great songs to use with Ella Marie. We should also do a lot of movement with the songs. Manipulate or change the verbs that you use when you are singing, ex. dance, jump, walk, etc.
- Use the outdoors to our advantage - When I have Ella Marie in her stroller out for a walk, we should point out everything we see and talk about it. We should point out all of the sounds we hear and we should pick up things like pine cones and feel them. We should use as many of her senses as possible.
- Again, it is sooooo important that wherever we are we narrate what we see and hear.
Sunday, October 11, 2009
At speech we reviewed many things that we have already been doing. Below is what we focused on:
- We should say everything that we are doing before we do it. For example "Ella Marie, I am going to make your toy go pop pop pop (then push the button that makes all of the balls pop up and down in it).
- Continuing our work with suprasegmentals we discussed how useful a slinky can be when working. The slinky can go up and down, it can bounce, wiggle, and go round and round. As always we want to show Ella Marie these objects while changing our pitch when talking to her.
- We talked about using the bumbo seat some for therapy. We have one at home but we still need to get a tray for it. We can play with more items that are within Ella Marie's reach with it. We can get a ball and throw it up and then make it bounce, bounce, bounce (working on suprasegemental long and short sounds).
- We tried to see if Ella Marie would turn to different noisemaker sounds while she was sitting in the bumbo. She was very inconsistent in her ability to turn to sound. We did not get very much from her.
- Kelli said to contine encouraging Ella Marie to engage in vocal turn taking. This is where we mimic what each other says.
- We looked at an audiogram chart. We looked at a typical audiogram for a child who is a cochlear implant candidate and they do not hear in the "speech banana."
- In order to develop proper speech, you can see where the sounds of the alphabet are. Initially, from the ABR, without hearing aids, Ella Marie was not responding at 90 decibels at any frequency level. The decibels are listed on the right side and the frequencies are listed across the top. Most hearing impaired children hear better in the lower tones (the left side across the top) than the higher sounds. An ABR alone does not qualify a child for cochlear implants. Behavioral testing that starts at around six months old must confirm that the child does not have enough hearing that can just be amplified.
Saturday, October 10, 2009
After completing the IFSP there was still some time for speech therapy. Here are the things we discussed today:
- Play tickle games with Ella Marie placing a consonant in front of vowels ex. ba, ba, ba, beeeee. You should have great contrast in pitch with the sounds that you are making.
- We are continuing to sing nursery rhymes or songs with Ella Marie but replacing the words with consonant +vowel sounds. This week we will work with the m sound and next week with the b sound.
- We discussed that Ella Marie will have a CT scan at a later date and this will really look at her cochlea.
- We discussed looking at the Advanced Bionics website. Go to the Listening Room
- I asked for a list of toys that would be helpful for our therapy at home. You will notice that all of these toys are toys that hearing babies would use too, we just truly do therapy with them so I need to make sure I have them. Here is a list of a few of them:
activity toys (with lots of buttons, mirrors, etc.)
board books Y cloth books, squeeze toys (some make noises)
stacking toys (especially blocks)
shape sorters (the EASY ones - she may around 7-9 months enjoy taking things out)
other containers to fill/empty
early role-play toys - play telephone, baby, etc.
playset w/ animals (farm, etc.) - 12 months or older
Other enjoyable toys are those that encourage physical development, such as walking
Therapy with Nathalie at Memphis Oral School for the Deaf - September 4, 2009 (Ella Marie 4 months and 4 days old)
- If her hearing aids are falling out of her ears I can even put a small amount of toupee tape on the ear mold and it will help hold them in.
- Baby massage is always a great activity to do to talk about baby parts with Ella Marie. Not only does it feel good to her, but it also is engaging her to listen and attend to my voice when I am talking about her body parts. She should be exposed to language through talking about body parts.
- Continue using the peek-a-boo books. Ella Marie loves them. Also when doing peek-a-boo with her it is a good idea to use a sheer scarf to hide ourselves, her, or objects. This helps with object permanence. Since Ella Marie can see that something is under the scarf she knows that she should try to uncover it.
- We discussed the importance of Ella Marie being exposed to different textures and talking about each of them.
- Using tactile cards can help expose Ella Marie to different textures. Cards such as these can be found at Scholastic Learning, DK Publishing, or on Amazon. We ordered numbers, colors, shapes, animals, and first words tactile cards.
- We discussed the use of hand puppets - these are not only a motivator for Ella Marie, but they are great to use while reading books to her. We can also talk about the the texture of the puppet. If we are reading a book we keep our face close to the puppet so she not only pays attention to the puppet but also looks at the book as well. If just using the puppet without the book, we should interpret what the puppet is saying. Other ideas for puppets could be to get a glove from Home Depot and put clip art on each finger.
- Babies at the age can see black and white and possibly some bright colors. One good idea is to google black and white images for a baby and then tape them to a paper plate to show her.
- We discussed the importance of going to the "sound source". For example, if the doorbell rings I should point to my ear and tell Ella Marie I heard the doorbell and ask her "Do you hear the doorbell?" Then I am supposed to take her to the doorbell so she connects the sound to what I am telling her. Children with hearing impairments must be taught even the smallest things that most children learn on their own. Other examples may include the dog barking, a loud sudden noise, the ice maker, etc.
- Ella Marie can feel the vibrations by me placing her hand on my throat while I vocalize.
- We should always praise her for any vocalizations that she makes. Again, we should point to our ear and tell her that we heard her.
- We discussed the importance of following Ella Marie's lead. If Ella Marie is really enjoying a toy or activity we can stick with it as long as she will let us. If she is interested in something we should keep on because it is helping her build her listening skills.
- We discussed different types of noisemakers to add to our collection. Some items that were mentioned were talking into a coffee can or buying an "echo mic" from the Dollar Store, place pennies in a can and shake it, and squeakers. We already had a lot of musical instrument noisemakers.
- A jack in the box is a great toy to practice talking about up and down like we were with the suprasegmentals.
- A great way to introduce different texture is through the sensory balls that you can buy various places.
- Children love photographs. One suggestion given to us was to tape different photographs in the car so that Ella Marie could look at them as we are driving down the road. Then we can talk about who is in the picture.
- We discussed open and close toys. This is taken from the Comprehensive Infant Curriculum. We are supposed to collect a wide variety of items that open and close. We talk about the object, shake, open it, look inside and tell Ella Marie what you see. Narrate everything you do with the object.
- Another open and close activity involves getting a clear container and placing her toys in it. Talk about opening the box and getting each one out. Explain exactly what we are looking for. For example: I am looking for the brown bear. He is so soft. He is big...etc.
- You can do the tweak the activities above and shine a flashlight on an object that you are talking about.
- We were given a list of the first 100 words a child learns. This is helpful so we can make sure we are using a lot of these words.
- It is important to not box yourself into your house only. We discussed going where other kids are. It is important to sit and just watch other kids since she is too young to play with them. Narrate exactly what the other children are doing.
We spent some time discussing FM systems. FM (Frequency Modulated) systems may be a solution for many students. FM amplification systems (also called auditory trainers) transmit the teacher's voice directly to the student at a constant level, insuring that the teacher's voice is heard above the level of background noise, regardless of the teacher's distance from the student. http://www.boystownhospital.org/Hearing/hearingaids/fmsystems.asp FM systems are good for all students because it amplifies sound, but especially good for students that are hearing impaired. Children do not have to wear these in all situations just when they are needed. Phonak carries a good FM system.
There are three companies that make cochlear implants. Cochlear is releasing their new Nucleus 5 implant and I will be going to listen to the reps talk about their product soon. Advanced Bionics has a resource on their website called "The Listening Room". This is a great free resource for parents to use with their hearing impaired child.
The AG Bell Foundation provides scholarship money for children who are hearing impaired. We have applied for the scholarship money and we will know soon. Thank y0u to those who wrote letters of recommendation for us.
Nathalie also suggested keeping a hearing log. We should write down how long EM keeps her hearing aids in each day. The goal is 10 hours or all of her awake time.
As always, Nathalie always has some wonderful handouts for us to take with us.
Friday, October 9, 2009
Our first meeting with Dr. Woolley ENT at Children's Hospital then Speech Therapy - September 1, 2009
We are in the pre-implant candidacy stage. At the Hear Center we will complete more tests with Ella Marie's hearing aids to determine if the hearing aids give enough amplification before going the surgery route. More than likely they will not and she will have implant surgery. Looking ahead she could have one implant at 10 or 11 months of age and the other one 3 months later or we could do both of the surgeries at once around a year old. The parent in me only wants Ella Marie to go through 1 surgery but the educator in me wants her to hear more from at least one ear earlier. The therapists and audiologists from The Hear Center and Dr. Woolley at Children's will guide us in this decision.
Dr. Woolley told us that the factors for success for a child with cochlear implants are the age of implamentation and the parent support.
Surgery is about 2 hours if only one implant is done at a time or 5 hours for both implants in the same surgery (if both implants are done at the same time, the audiologist has to also come in to complete some things). The child loses a lot of blood during the surgery so if both implants are done at the same time we would have to wait until at least a year old.
Finally, we discussed that Ella Marie would have a CT scan about 10 days or 2 weeks before the surgery. This is his "map" for her surgery. It cannot be done yet because she is so little so she would grow between now and the surgery.
After our appointment, we went to the Hear Center for Ella Marie's weekly speech therapy. Below I will list the skills and information we went over:
MRI at Children's Hospital and Speech Therapy at The Hear Center- August 27, 2009 (Ella Marie - 3 months 27 days)
Kelli our AV therapist was so nice to move our appointment from Tuesday to Thursday so that we did not have to travel to Birmingham twice in one week. Mom, Ella Marie, and I piled into her speech therapy appointment. I say we piled in because it looked like we were going on vacation with all of her things. Below I have listed the things we went over during our therapy session.
- We discussed the need to check with the insurance company to see how many speech sessions are covered in a year. If we as a team feel like Ella Marie needs more than our allotted sessions Kelli can send in a letter to the insurance company to request more sessions.
- We discussed how we wanted Ella Marie to know that words/sounds can be long or short. This falls under the category of duration. We work on suprasegmentals. Some examples are listed below:
**With an object or with actually lifting Ella Marie we say "up, up, up, dowwwwwwwnnnnnnnnnn" With this simple activity she hears the word up as a short word and then down is elongated. We do this activity daily by lifting and lowering her, taking one of her favorite toys and making it go up and down while she is watching it (usually when we are using objects she is laying on her back on her blanket.).
**With an object that spins we say "spiiiiiinnnnnnnnnnnnnn stop or weeeeeeeeeeeeeeee stop". We have implemented this with the toys on her activity seat/bouncer.
**With a wheel that is attached to a stand (ours is from Leap Frog that also has the alphabet on it - for later), we say "roooooolllllllllllllllll stop". Again here Ella Marie is learning that sounds/words can be long or short. Duration can change.
**With a slinky we can say "pullllllllllllllllllllll, bounce, bounce, bounce". With each of these activities it is important to pair them with the motion, not just say the words.
**With a ball we can say "rooolllllllllllllllllll, bounce, bounce, bounce"
- Bouncing her our knee activity - In this activity, we bounce Ella Marie on our knee while saying bounce bounce bounce, stop. After stopping the bouncing and saying the word stop, we just look at Ella Marie and wait for some type of response. At the beginning this may be that her eyes widen or that she smiles, but the goal is to get her to vocalize to continue the play. For example after bouncing her on our knee and stopping we want to hear her coo or babble. We want to teach Ella Marie that her voice is power. When she vocalizes, something happens. It is basically like a cause and effect lesson. Because she cooed, I as the parent will continue the play with her. When Ella Marie coos we are supposed to point to our ear and say "I heard you Ella Marie, you want to do it again." At that time we repeat the activity.
- We were also told to take nursery rhymes and songs and pair the consonant "m" with different vowels and sing the tune. Our example was "Twinkle, Twinkle, Little Star". So for the first line we might sing it as "ma, ma, ma, ma, ma, ma, moo" etc.
- In the next activity we introduce Ella Marie to "noisemakers". This activity involves two people other than Ella Marie. In a chair, one of us holds Ella Marie (she can be facing either direction - we usually have her facing us). The other person stands behind Ella Marie and starts presenting the noisemaker. We had some musical items like a tamborine from Target. After presenting the sound, you slowly walk to one side of Ella Marie. The goal is to get her to turn to the sound and to recognize the sound that was presented. When we are teaching this activity we praise her for noticing/hearing the sound even if at first it is only from the visual clue. The person holding Ella Marie can turn Ella Marie to the sound if she does not turn on her own and point to their ear and say "Ella Marie, I heard the cymbals, did you hear the cymbals?" Then explain what the object is, the sound it makes, and how it feels (she can touch it). We also touch her ear and tell her that she heard the sound. Later the goal is that Ella Marie will turn and the person presenting the sound will not have to walk to one side of her. When we started doing this activity at home, we sat in a swivel chair so we could twist Ella Marie around to the sound. It is also important to provide wait time for Ella Marie to hear and process the sound. You do not want to show her the noisemaker before she would have had the opportunity to figure it out for herself. This activity falls under the category of "detection of sound".
- We discussed the importance of getting down on eye level with Ella Marie when we are working with her.
Finally we discussed the need for eliminating background noise. This includes not working with Ella Marie around a tv that is on, a loud refridgerator etc. A suggestion was made to go into every room in our house and close your eyes. Ask yourself "What do I hear?" These sounds could be very distracting to Ella Marie and should be eliminated when we are working with her.
In the paperwork from The Hear Center, it states that Ella Marie should have a minimum of 1 hour of therapy a day. This includes what you learned from the therapy session. It was explained to us that really it should be integrated throughout the day since all of her therapy is through play. Ella Marie should be having fun doing it.
Cognitive - 6 months of age
Communication - 4 months of age
Social Emotional - 5 months of age
Physical Development - 6 months of age
Adaptive Behavior - 3 months of age (in this category they are scored on things such as what they are eating etc - she is still nursing so most of the items in this category are not applicable for her).
We were definitely happy with her scores. At this time she is not behind in anything. It is good to know what her scores are so that we can know how much of a gap we will need to close when she possibly receives implants.
Also at this appointment I shared the activities that we have been doing with Ella Marie (from the therapists in Birmingham and Memphis). She said that Ella Marie was doing wonderful and to "keep it up." One nice thing about the early intervention services from AIDB is that it is provided in the child's natural setting. This means someone comes to our home to provide this support. It is a nice break from all of the travelling.
Sunday, September 20, 2009
1. Ella Marie should be wearing her hearing aids during all waking hours. She said that she knows that they will squeal and we will not always be happy with them in, but we need to give Ella Marie every opportunity to wear them so she can possibly hear something.
2. At night the hearing aids do not go in their carry case. There is a special box to put them in. You must take the batteries out nightly before putting them in the box.
3. Once a month the hearing aid can be cleaned by placing the earmold in a cup of water with an alkaseltzer tablet. You can also use dish soap or a mild soap to clean it. You can use alcohol on the aid itself to clean it. We were also given a special thing to use to help clean out the earmold.
4. You should always carry an extra set of batteries around with you. One good idea is to place a sticker in your calender to show where and when you changed Ella Marie's battery out.
5. You should do a battery check and listen to your aids daily.
6. Do not leave the hearing aids sitting out. Dogs are very interested in them. The batteries are extremely toxic so we don't want the Ella Marie or Charlie to get them.
Tonight after getting back from a long travel day, we rode in the Killen Founders Day Parade. Her daddy is running for State Senate this year. The parade was a lot of fun. We ran out of candy before we ever finished the parade.
Well today we had a very long day. We started off at Children's Hospital. Ella Marie was scheduled for another ABR test. Children's likes to run their own tests. This time we did not have to sedate Ella Marie which was very nice because it was really rough on her the last time. The results confirmed the same thing. Ella Marie was considered in the severe to profound hearing loss category. Oh how we were wishing for different results, but we knew that our results would be the same. After her ABR test, we went to the Hear Center in Birmingham. Our doctor refers his patients there for speech therapy. We were scheduled for Ella Marie to have a speech evaluation. You may ask the same question as I did....how will you evaluate her. Well she was mainly evaluated by asking me as the mother a lot of questions. This was great seeing as though she slept through most of it. Next we had her first set of earmolds made. Well Ella Marie did not like this one bit. First they check your ear, then they push a little string and cotton piece down in your ear. Then they fill your ear up with a lot of gooey stuff. None of this hurts, but she did not want anything in her ear (who could blame her). I think she let everyone know in the building that her lungs worked perfectly. We were told to come back in a week to pick up her hearing aids.
Sunday, September 13, 2009
1. Handouts were given to us about how the ear works. We discussed how Ella Marie’s hearing loss is considered severe to profound. It is also considered a sensorineural hearing loss which means that this loss is in the inner ear. A common question I have gotten from people is “Won’t Ella Marie grow out of this?” No she was born with a hearing loss. Hearing is formed in the first three months in the womb.
2. We received a wonderful resource guide called My Baby & Me: A Book about Teaching Your Child to Talk by Betsy Moog Brooks. This book includes information on listening and talking, how the ear works, major milestones for children, and ways to maximize language development.
3. We discussed ways to keep Ella Marie’s hearing aids on. Typically children do not like to wear their hearing aids. As a parent you have to get used to the feedback from the hearing aids which is hard at first. Anytime you pull your child to you to hug or cuddle, you will hear a loud squealing noise. It is so easy to want to just leave the hearing aids off for the time being, but if Ella Marie is able to hear anything with the aids in, we want her to have that opportunity (even though we say that she is deaf this does not mean that she cannot hear anything. Ex. She may hear a siren like a soft noise. The Hannah Anderson catalog sells “pilot caps” for children. These are known to help keep hearing aids on. We have used toupee tape to keep her aids on. This was also suggested to us by Nathalie at Memphis Oral School for the Deaf. We ordered it from http://www.toupeetape.com/ . It really helps. Also it is important to know that hearing aid batteries are very toxic. It is very important that we keep them away from her and the dog. We also keep extra batteries in my purse or her diaper bag since they go out every 7-10 days. One idea that was suggested to us was to place a sticker in your calendar on the date that you replaced the battery so you can see how often you are changing the batteries. Also we use cream on her hearing aids called otofirm to help get a good seal in her ear. At night, you must take the batteries out of the aids and store the hearing aid part in a separate round box. One frustrating part about hearing aids is that infants ears grow so fast that we are constantly having to get her ear molds re-made. Each time we have an ear mold re-made it is $50. It seems like as soon as we get it back from the lab 2 weeks later she has already outgrown the mold.
4. Narrate everything you do – For any child with hearing loss the biggest mistake that you could make is to think that they can’t hear you so there is no reason to talk to them. Actually it is the exact opposite….you should talk more. There is a program called Talk Around The Clock and this is exactly what we are supposed to do with Ella Marie. All of her waking hours she is stimulated with someone talking to her. We narrate everything we hear, ex. When the doorbell rings we take her to the doorbell and tell her that it was a doorbell. We talk to her about the here and now. Everything we are doing she is learning about. Even a diaper change is now “therapy time”. One interesting statistic is that a hearing baby must hear a word 1000 times to know it. A hearing impaired baby needs to hear a word 3000 times before he or she knows it.
5. Activities where we focused on language development for this week: Diaper changing and getting up in the morning. Even when I am changing Ella Marie’s diaper it is a mini speech therapy session. We talk about every step of the diaper changing process. For ex. “Ella Marie, I am getting out a diaper from the drawer. We are going to take your dirty diaper off. Are you ready to put on a clean diaper? Etc” Ella Marie loves to vocalize during this time as well. This is wonderful for her. It is important to show that you are listening intently to what she has to say. When she vocalizes or talks back we are supposed to point to our ear and say “I heard you Ella Marie” and then continue with what we were going to say. During diaper changing time it is also important to imitate the same sounds she makes. She will know that you are engaging in her conversation.
When she wakes up in the morning, the first thing we do is put on her hearing aids. If we don’t put them on the first thing she will learn that it is not important and will try even harder to not keep them on. Again we talk about putting on her hearing aids and exactly what we are doing in the morning. For example, we discuss opening the blinds and changing from our pajamas into our clothes for the day.
Although these activities are super easy and every parent does these activities, you would be surprised how preoccupied we get when we are doing these activities. For example, I no longer can be talking on the phone while I am changing her diaper because I need to be talking to her. Ryan and I both are mindful of how we spend her awake time. We have been excited to see how vocal she is at this time.
Saturday, September 12, 2009
After meeting with Nathalie Johnson about the program we decided to do extended sessions so we did not have to travel to Memphis weekly. Our blog will explain some of the things we have learned from our sessions at the Memphis Oral School for the Deaf.
Early Intervention Services - Setting Early Goals For Our Daughter and Working Daily On Reaching Them
Early Intervention was set up under the federal Individuals with Disabilities Education Act ( IDEA ). If your child receives special education services this is the same law that regulates their services. Our state's (Alabama) Early Intervention Services are listed on this website. http://www.rehab.state.al.us/Home/default.aspx?url=/Home/Services/AEIS/Main
Infants and toddlers from birth through age 2 are eligible to receive appropriate services if they are delayed by 25 percent or more in their cognitive, physical, communicative, social, emotional or adaptive development, or if they have a diagnosis of a physical and/or medical condition that will likely result in developmental delay.
So because Ella Marie is deaf she definitely qualifies for these services. Although Ella Marie is very young, I have already learned some very valuable information.
1. It is up to you as the parent and the family to be an advocate for your child.
2. Call many different places to ask about information on what services you can receive through early intervention.
3. Check into what other states offer through their Early Intervention programs and services. Does it compare to what you are getting in your state.
4. Don't wait for someone else to guide you through the process. You must learn everything you can learn.
5. Involve family and friends in the process.
Our journey through early intervention services:
We are still learning daily about the ins and outs of Early Intervention so I can only post about what we have personally been through. After Ella Marie was a couple of months old one of my friends Katie asked me if I had contacted the state about services for Ella Marie. In her pediatrician's office, she saw a flyer about this. I had heard of Early Intervention but to be honest we had been through so much of a roller coaster and it seemed as though we were at the doctor all of the time that I had not had a chance to call about services for Ella Marie. Once things slowed down just a little bit and she was around 3 months old I contacted numerous places about what they had to offer for Ella Marie. Each place told me about their services but in my opinion the services were not as specialized as I would like to have for my daughter. Each place that I called I asked the same question..."Could I receive the services somewhere else if I want a certain type of therapy?" Each place continued to tell me NO. I was bothered by this because this is a federal and state program. I believe that the goal for early intervention is to provide excellent services for all children who qualify and need it. After talking to some other parents in our area who had children with hearing impairments I found out that they did receive early intervention services out of town. They told me to continue to ask for it. Although our small community is willing to help Ella Marie, I just felt like she needed more. I wanted Ella Marie to have auditory verbal therapy and there was no one in our area who provided this service. I wish there would have been so we would not have to travel as much as we do. At this point our early intervention services include:
1. Auditory Verbal Therapy Weekly - whatever our insurance does not pay, such as a co-pay Early Intervention will pick it up.
2. A special instructor once a month to come to our home and monitor Ella Marie's progress.
3. Gas mileage every other trip to Birmingham, AL for Auditory Verbal Therapy.
If I would not have kept pushing for more services, Ella Marie would have only received a service once a month through early intervention which I do not believe is enough.
My husband and I definitely know that God has his hand in our journey with Ella Marie. We know that "our plan" is not always the same as his. Looking back, we can see how God has prepared us for this point. For instance, my degree is in elementary education. I have had the opportunity to work with a child with a cochlear implant. I love to teach children how to read. Since Ella Marie will most likely have difficulty in her oral language development and reading and writing at first, I have the patience to work with her and try many strategies with her. My husband is the most loving and patient person I know. Ella Marie already has him wrapped around her little finger. He is such a hands-on daddy. We are fortunate that Ella Marie will have both parents, family, therapists, and friends committed to her pathway of learning.
We want to devote this blog to our journey with Ella Marie. We want to have a way to share with family and friends what we are learning so they can work on the same skills with her. We also hope that in some way our family can impact other families going through this same situation.