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Sunday, December 20

Breakfast with Santa


We enjoyed a lovely breakfast with Santa this morning. Drew was a little shy with the big guy, but his sister warmed right up! She was very quick to tell him that she "would like a Tinkerbell doll for Christmas, and didn't cry once this morning!"
Drew finally told Santa that he "would like a Buzz Lightyear and Woody!" Oh, how the boy loves Toy Story. Three years ago I didn't know if Drew would ever talk, but today he talked with Santa just like every other little boy and girl in that restaurant. Truly amazing.

Friday, December 11

First Trip to the Dentist

Drew had his first dentist appointment this week! We prepared Drew for the appointment by talking a little about what the dentist would do, like count his teeth and brush them, and we told him that he would have to lay in the chair and say "ahhh!" He was really excited to be a "big boy" and go to the dentist like his big sister.



It only helped that we have probably the worlds most fabulous dentist when it comes to working with children. Seriously, he is excellent. He played so much with Drew and was so interactive with him, which is exactly what Drew needs. Drew wanted to know everything the dentist was going to do, and was talking to him throughout the entire appointment, to the point where I had to tell Drew to be quite so the dentist could work on his mouth! The fact that Drew was so open with him was just amazing.

And it didn't hurt that the world's best big sister sat right by Drew's side, talking him through the whole process. I mean, seriously, how cute is this?

The whole time we were there, I just kept thinking how amazing it was that Drew was able to communicate his needs completely by himself. Spit? Check! Drink? Check! Toy from the toy chest? Check! Without his cochlear implants, Drew's Dad and I would have had to do all of the communicating for Drew. Not that that would be bad, or the end of the world, or anything. But how wonderful is it for Drew that he is able to communicate his needs all by himself?

Thursday, December 3

Poo-Poo in the Potty!

Oh, man! I think potty training Drew might be the end of me, but we've finally had success with getting #2 in the potty! (Is that TMI?)



Drew eating pizza at a celebratory outing to Chuck-E-Cheese!

Having successfully trained one little one, and having changed diapers for nearly five years I'm done with changing diapers! (Unfortunately, that statement isn't literal!)

I really don't think potty training is worth it - and won't even work - until the child is truly ready. Pull-ups are a huge waste of money, and in my opinion, just do not work. And the whole idea of "scheduled potty training" is great for the first day or two you try to put your little one in big-boy (or big-girl) underwear, but how long can I actually keep setting a 15 minute timer?

My goal? A child that recognizes that he has to use the potty and then actually gets himself to the potty in time to do his business. Once we see the potential in this area, it's game on! And that finally happened last night! Drew, who was watching the Lion King (his new favorite movie) in the basement, walked up the stairs and pro-claimed, "I'm gonna go pee-pee and poo-poo in the potty!" Then, he walked upstairs, sat on the potty and went! #1 and #2!! Yahoo!

Since this major break-through, Drew's Dad and I have been dealing with full on tantrums from the little guy. He is refusing to wear a diaper! So, off to school he went today in his Spiderman underwear. I can hardly wait to hear the report from today's adventure at school.

Oh, please, God, let this be the end of my diaper changing, potty training days!

Monday, November 30

Holiday Gifts for the CI Child

As the Momma of a CI child, I am often asked about gift ideas for children with hearing loss. As we all know, much of our life with a CI child is spent playing games at home that also serve as the necessary therapy needed for communication. So, what are some of our most favorite gifts we have received for Drew that have also helped with therapy?
  1. 100 Hoops - Basketball Counting Game: Drew loves this game! It is perfect for a little boy, and allows for work on counting, and vocabulary like in, out, over, under, made it, missed it, dunk it, brick, etc. It counts in Spanish, two's, ten's, backward. This was Drew's favorite Christmas Gift of 2008, and nearly 365 days later, he plays with it daily.
  2. Giant Road Carpet and Melissa & Doug Wooden Vehicles & Traffic Signs: Drew loves to play with his transportation vehicles, and I love that he has no idea he is actually doing therapy! We work on things like, "Drew, you need to take the children to school! Which vehicle goes to school?" You can put up the stop signs and talk about stop vs. go. You can have the child make the vehicle go fast vs. slow. "Oh, Drew! The police car needs to go to the store - fast! Let's go!" So much fun...for everyone!
  3. Melissa & Doug Band in a Box: Perfect for these little CI kiddos! Work on the different sounds of musical instruments. You can work on making a beat. "Shake the maracas fast!"
  4. Plush "My Barnyard Friends Carrier" With Sound: When Drew was younger we loved this barnyard. They animals are soft and cuddly, and they each make noise! Plus the barn was nice because you could say, "Drew put the cow in the barn." This helped with working on in, out concepts. And, this plus barnyard works great for the small concept, you can get a larger animal sounds barn to talk about big vs. small, etc.
  5. Little People 'Busy Day Home": A perfect sized house to work on many daily activities! It can start of very basic. "Drew, Put Daddy in Bed." Then you can get really advanced, "Drew, Mommy is tired. Where should she go?" And then I would wait for Drew to find the Mommy and lay her in the bed. This shows that Drew understands what "tired" means and that he understands you need to go to sleep when you are tired and that you sleep in your bed. Really, really difficult concepts, yet somehow we all learn this stuff!
  6. Mr. Potato Head: Super fun to play with, reminding me of my childhood, yet excellent to help with learning body parts! At first, you can design Mr. Potato Head, and then ask your child, "Where is the nose?" Then you can have your child design Mr. Potato Head himself, talking about where each item goes. And, what we're doing now, you can play sabotage! One of my favorite things to do with Drew! I'll build Mr. Potato Head totally wrong...then Drew has to fix him. "No, Mommy, that isn't where the ear goes. The ear goes here! That's where the mouth goes!" Oh, how I love to play sabotage!
We actually have been given every toy I talked about above! And people say we have too many toys...ha! If you are reading this blog as a grandparent, aunt, uncle, friend...I can not tell you how much we appreciate these types of gifts. We work so hard with our kids daily on activities that seem so trivial, but in the grand scheme of things, these gifts help our children develop their listening, language and communication skills daily. The thoughtfulness of thinking about how a gift will help with the child's therapy is helpful beyond words.
So, what will Drew be getting for Christmas this year? We have so many of the "staples" when it comes to therapy, and in many ways, we are past the learning to listen phase of this journey. We're working on phonics, pre-reading, pre-math and fine motor skills. So, we've decided to get Drew a Leapster Learning Game System and Leapfrog Tag Reading System. He'll also be getting some of his favorite friends:

1) A Toy Story Talking Sheriff Woody
2) A Toy Story Talking Buzz Lightyear, and
3) ARex the Roaring Dinosaur from Toy Story!

He'll be so excited! Drew has worked so, so hard, so now we'll let him play.

What are some of your favorite therapy toys? Let's keep the list going!

These are some of Drew's favorites!

Saturday, November 28

Santa Claus is Coming to Town!

Now that I have kids, I just love the holidays! That's not to say that I didn't enjoy Christmas before having children, it's just that I enjoy it so much more now. Seeing the excitement in my children's eyes as we put ornaments on the Christmas tree or walk past Santa Claus in the mall is just wonderful! It makes me remember the magic that I felt during the holiday season, and reminds me to thank God for the precious gifts I have been given in my children.

Drew's Dad and I have done (what I think is) a wonderful job of meshing our two families' traditions together, while coming up with some new ones of our own. We want our children to enjoy many of the things that we did as children, and to learn to appreciate the value of family traditions.

Some of our favorite traditions are hiding the pickle in the Christmas tree, and the first child to find the pickle receives a special gift. We enjoy baking a birthday cake on Christmas Eve as a family to celebrate Jesus's birthday. We enjoy having a Christmas "sing-a-long" on Christmas Eve with the whole family! When I was a child, my sister and I used to perform for all of the grandparents. I can't wait until Drew and his sister put on a little Christmas Eve show for us! We enjoy driving around our area looking at all of the holiday lights, and we enjoy a trip to the Zoo each year for the Wildlights.

There are just so many little things to look forward to at this time of year, where we celebrate our saviours birth! What are your favorite holiday traditions?

Thursday, November 26

Thankful

Happy Thanksgiving! Drew and his family hope you are having a wonderful day, surrounded by friends and family, reflecting on all you have to be thankful for. Throughout the month, many of my Facebook friends have been sharing daily things they are thankful for. Some of the things I am thankful for:


Sunshine ~ God's Love ~ Slobbery Kisses ~ "Backburgers" ~ Fall Leaves ~ Dancing ~ "I feel better!" ~ Family Movie Night ~ Our Home ~ Unconditional Love ~ Drew's School ~ "Oh, oh oh oh oooo" ~ Family Walks ~ Freedom ~ Our Dog and the kids' love for our dog ~ Mommy Mornings ~ My Mom & Dad ~ Our Health ~ Drew's Words ~ Donut Mornings ~ Music ~ An Afternoon at the Park ~ Technology ~ My Job ~ College Football ~ "Open, Shut Them" ~ Cooking with My Little Helpers ~ Friends ~ My Daughter's Love for Ballet ~ "Mom, I wanna tell you something...Good night!" ~ Carmen Ohio ~ An Evening at the Park ~ Shoes ~ Singing ~ Cochlear Implants


There is nothing I am more thankful for than these two:


Thank you, God, for giving them to me.

Tuesday, November 24

Spotlight

Drew and his sister are pictured with Drew's Cochlear Implant Surgeon, Dr. Richard Kang, in the latest edition "Spotlight". The article is highlighting the work being done by the Hearing Team Parent Advisory Board, of which I am a member.

Our cochlear implant program has been experiencing some growing pains, which our family has personally encountered, and as a result forced us to make some difficult decisions. While we have certainly had our frustrations, we are very happy that Dr. Kang, and his staff, recognize the need for continuous improvement, and that they have reached out to parents to understand our needs. I am hopeful that this group will be able to make some significant changes to better the program, not only for my son, but for the community at large.

Monday, November 23

Having Trouble Keeping CI's on Your Little Girl?

When Drew was first diagnosed with hearing loss, I spent all of my time researching cochlear implants, talking to professionals, at doctors appointments, with one goal in mind: getting Drew implanted at as early of an age as I could. What I didn't think about was the post-activation time. Sure, I knew he would need multiple mappings, and that the implants would be slowly activated to the hearing we have established for him today and that we would spend a lot of time in therapy. But I didn't consider how difficult just keeping his cochlear implants on his head would be!

To celebrate Drew's activation, we had lunch with family at Champp's. By the end of the lunch, I was so frustrated with keeping the coils and processors on Drew's ears. It was so challenging with a little baby that was constantly wiggling and moving around. I would get one ear back on, just to have Drew move and knock the other ear off. I left that lunch feeling so defeated! I had worked so hard to get Drew implanted so early, but it wasn't going to work if I couldn't keep the implants on his head!

So, as I drove home that day, feeling so sad and defeated, with Drew safely sitting in his car seat without any hearing, I remembered reading about how other family's on CI Circle had successfully used Hanna Andersson pilot caps to keep the equipment on their child's head. Problem solved! We used those caps for about a year, until Drew was fully walking and had much more control of his head, causing the implants to be knocked off less often.

I'm always interested in how other families keep the equipment on their child's ears, as it truly is a huge struggle. Lily's Mom showed how Lily is wearing her CI's these days. Check out these headbands! They are so cute, and so effective at keeping CI's on little ears. For anyone with a little girl, I think this would be great!

Saturday, November 21

Blog Friends

I'm thankful that November has brought so many of our Internet friends to our hometown!

Drew and Lily got to meet up a week ago, their first reunion since attending the Moog Summer Workshop together. They both have grown so much in 3 1/2 short months, both in size, but most recognizably in language! Lily is a talking machine!




And, Drew got to meet Aiden for the very first time! Aiden was so cute, as he kept pointing to Drew's ears. He was so excited that Drew has ears just like him. I think they are friends for life!

Friday, November 20

Preparing for the IEP Meeting: Booklet



As your IEP meeting approaches, you may want to create a booklet that highlights your child, and provides the IEP team with important documents that help the team decide on appropriate educational services.

Table of Contents:

1. Evaluation Team Report: Part B
  • This document will be provided at the Eligibility Meeting that establishes the child has educational need and an IEP must therefore be developed.
2. Future Planning Statement


3. Did You Know?


4. Deaf Students Education Services: Policy Guidance


5. Essential Issues and Aspects of the IEP


6. IEP Checklist


7. Preschool Observations


  • I wrote a summary for all area preschool options, including main-stream, cross-categorical and hearing impaired programs. Information included basic program offering (days, times, etc.), age span of children, number of peer language models, communication modes, personnel (teachers of the deaf, special education, general education, etc.), general observations (including lighting, treatment to reduce noise, spill over noise), on-site services (including speech, OT, PT, etc.), auditory training curriculum used and a summary (including daily schedule, snack time interaction, general learning environment, peer interaction, etc.)


Sample of the page dividers we used. We made them

in our school colors, just to show our school pride!

Wednesday, November 18

Preparing for the IEP Meeting: Future Planning Statement

As your IEP meeting approaches, you will want to prepare a "Future Planning Statement". This part of the IEP is for parents to express their goals, wants, needs and aspirations for their child. It can be very simple, with short-term goals. Or, it can be very detailed, with long-term, complex goals. Below is our "Future Planning Statement" from Drew's IEP:


We see the first five years of Drew’s life as a critical window where he needs intensive intervention to establish his communication and listening skills that he will need in all future educational and life experiences.

In the short term, we see Drew attending the [School for the Deaf and Hard of Hearing] in Columbus, Ohio. The program will offer Drew extensive, structured and specialized educational curriculums specifically designed for the hearing impaired child. The goal for these preschool years is to establish an appropriate foundation of communication, language, listening and literacy that will hopefully allow him to integrate into a mainstream Kindergarten class in [our school district] with minimal or no services and accommodations.

If Drew receives this appropriate education, we see Drew graduating from High School and attending college or post-secondary education, should he choose to do so. We see Drew as a positive, contributing member of society, who is able to support himself and his family both financially and emotionally, without letting his deafness define him.

Yeah, that about sums it up.

Tuesday, November 17

Drew Update

So, what has Drew been up to these days?


Drew loves playing outside! He has had so much fun helping rake leaves, playing in the leaves and mowing the lawn?!





He mowed for quite some time, making sure to stop and say "Hi!" and "Bye!" to Daddy each and every time. I just love the quality of his voice. And I just love how truly sweet this little boy is!

And here is video of the dinner ritual with Drew. I was truly spoiled by my first born, who will eat just about anything. She will try just about anything! But not my little Drew! He usually starts saying "I don't want that!" before dinner even hits the table. It's just lovely.





It certainly is annoying, but I love the fact that he is able to tell me with his own, whiny words that he "doesn't want to eat that food!" It's just tuna noodle casserole. Who wouldn't want to eat it?

Monday, November 16

Determining Eligiblity: Relevant Medical Information

During the evaluation process, your school district should ask you for a statement of "Relevant Medical Information". This is to help your district understand your child's clinical diagnosis, and to assist in understanding educational implications. I would recommend that you are as specific and detailed as possible.

Below is the information we provided to our district.

Andrew was born with profound hearing loss in both ears. The cause of the hearing loss is genetic defect in the Connexin 26 gene, which disrupts potassium flow in the inner ear that prevents the hair cells’ stimulation of the auditory nerve. The hearing loss was diagnosed at birth, and was later found to be at least 90 decibels in each ear.

Drew obtained bilateral hearing aids in December 2006 at 8 weeks old. With the amplification, audiological testing showed that Drew was only able to hear at 70 dbs for the lower frequencies. This level of hearing would include an airplane overhead, but no speech sounds or other typical environmental sounds, such as a doorbell, or dog barking. Parents never saw any reaction to sounds when Drew was using his hearing aids.

Drew’s parents were aggressive in their quest for Drew to hear. After traveling to St. Louis , Cincinnati , and Cleveland to consult with experts in the field of newborn hearing loss, cochlear implants, and oral-deaf education, they decided to pursue simultaneous bilateral cochlear implants, which were almost unheard of at that time. Not only was it rare for persons to have two cochlear implants, but it was even more rare for a child to receive two during the same surgery.

After interviewing and comparing three surgeons for this new and relatively untested surgical procedure, they finally found a surgeon in Columbus who would implant Drew simultaneously at a young age. They then fought the FDA guideline which suggested children be at least 12 months old before receiving a cochlear implant, arguing that implanting him at 8 months of age would give him a better chance at having normal speech.

Andrew continued wearing his hearing aids until he received simultaneous cochlear implants, which were first activated at age 9 months. These implants were activated fully by age one. Activation involves slowly turning the implants on so that he gradually became accustomed to hearing. The cochlear implant is an array of 22 electrodes inserted in the cochlea of each ear, with an accompanying magnetic receiver which is implanted in his skull. Andrew wears external processors on each ear, which are programmed by a skilled pediatric audiologist. The external pieces consist of microphones which pick up sound, the processor which “codes” the sound, a magnetic receiver (referred to as a coil) which transmits the electronic stimulus to the internal parts. His mother described his hearing as “electronic” and not natural, often referred to as acoustic. Drew will never hear as well as a hearing person does, and he will never hear more than a slice of the frequencies others do. Fortunately, his implants are programmed to pick up most of the speech frequencies.

Immediately following activation, Andrew began aggressive auditory training with professionals specifically trained in teaching deaf children how to listen and speak. Drew has attended therapy a minimum of two hours a week in a formal, clinical setting. These therapists have been instrumental in ensuring the processors are mapped appropriately, that Drew is meeting listening and language milestones and for his overall language and communication progress. This therapy has been essential in the development of spoken language for Drew.

Potential Problems
1) Equipment Maintenance

His mother noted that equipment issues are very common and impact Andrew’s ability to hear properly. Faulty baby worn wires, coils, dirty microphone covers, loose batteries and cracked controllers can cause the speech processor to turn off. Dirty microphone covers can muffle the sound being coded by the speech processor. Some potential areas that could affect microphone clarity include dirt, sand and moisture. Also, if anything is placed over Drew’s ears, such as a hat or hood, ability to hear is compromised.

2) Internal Failure

An additional area of concern is breakage of the internal parts. A fall or bump at the “right” spot on the head can cause the magnetic receiver or electrode array to break. This would require surgery, and the process of reprogramming (referred to as mapping) would be extensive.

3) Static Electricity

Static also presents a problem. A static charge can trigger the processor to turn off, or in the case of a strong static charge, can erase the map on the processor, which would require an appointment with the audiologist. Areas to avoid include plastic play equipment and fleece clothing.

4) Ear Infections

Ear infections can cause the equipment to work inefficiently, and have the potential to cause an infection around the implant which could require its removal. Fortunately, he has had very few ear infections, and all ear infections are treated aggressively by Drew’s ENT/Surgeon.

5) Moisture

The speech processors (“ears”, as they are referred to by Andrew and his family) are not allowed to get wet, so he can not wear them when swimming or bathing. Andrew is now able to take his “ears” off by himself. He is also now able to sometimes let his parents know when they are not working.

6) Hearing In Noise and Sound Localization

Lastly, noisy situations, including classrooms, restaurants and the outdoors, can be difficult for Andrew, as sound localization and quality is affected.

Educational Implications

His parents judge Andrew in need of continued auditory training/listening therapy, in order to develop his communication skills and ultimately literacy skills. They would like a preschool teacher, specifically one for the deaf, who would reinforce what he learns in an auditory training program, which will fine tune his ability to listen within his environment and will benefit him significantly when he moves to the mainstream.

As cochlear implant maps change over time, his parents daily check his hearing using the ling six sounds. Drew’s teacher will also be expected to review Drew’s ling sounds each morning as he arrives at school. Lings are six sounds (/oo/, /e/, /m/, /sh/, /ah/, and /s/) that predict well his ability to hear all other English phonemes. This check needs to be conducted in a variety of conditions, such as with noise, at a distance of 6, 9 or 12 feet and when the speaker is using a listening hoop. An equipment check is required at the beginning of each day to make sure the processors are on and working.

Another concern is literacy. Knowing that adult deaf people have an average reading level of fourth grade, the parents are concerned about Drew’s ability to learn to read. While speech alone is a huge concern, reading and greater literacy is a task that will be learned over many years. Drew’s Mom reports having struggled with literacy and knows how frustrating those struggles will be.

Drew needs to have an intensive literacy program, with teachers that are trained in teaching the deaf to read to provide a foundation that can be built upon during the school age years. Without this foundation, the parents are very concerned that Drew will fall behind and require significant intervention throughout his entire school career. With appropriate preschool education, they are hopeful that his needs will be minimal once he is of school age. The primary goal is literacy, with speech being only one part of being literate in society at large.

Other concerns include, but are not limited to, articulation, consonant deletion, consonant production through listening only (using a listening hoop where the speakers mouth is concealed) and grammar. Drew has also developed an issue with speech production, where he will “stutter” as he searches for the word(s) he needs to answer a question or to convey his need(s).

Sunday, November 15

Eligibility for Special Education - School Age

After the initial transition meeting, a multi-factored evaluation must be completed by and at the expense of the school district of residence if there is a suspected disability (as determined at the 120 Transition Meeting). For our deaf or hard of hearing children, currently enrolled in birth to three years of age services, this transition through the evaluation and writing of the Individual Education Plan should be seamless. Our case, as you know, was everything but seamless.

The evaluation process is supposed to be very detailed, with testing of the child in a variety of settings completing a variety of tasks. The testing performed on Drew was completed in one setting, an isolated, small, quite therapy room. In addition, only one test was administered. The PLS-4 was completed in this setting, and Drew's IEP team, including myself and Drew's Dad, his EI therapist, a parent advocate, and then representatives from the school district, attempted to determine educational needs off of this one test.

Here's the problem: The PLS-4 sucks. It's basically like a vocabulary test, which when administered to a deaf child with any almost-normal language makes them look like an absolute genius. It's completed in a quite - seriously quite - environment, and allows for rephrasing and gestures. Seriously. If the speech therapist didn't think Drew understood her the first time, she would rephrase her question and allow him additional time to answer. What a joke! Will he get that extra time in a noisy classroom? Will the teacher even know he struggled to understand the context of the sentence? Will the teacher constantly repharse her directions until Drew understands? Heck no!

I seriously sat in my chair as the test was administered knowing there would be an issue if the district was only going to base my son's needs off of this test. To give an example, in the expressive category of the test, the school therapist could not find a threshold level of language for Drew. She stopped the test at 60 months (or five years of age). He never got more than two answers in a row incorrect. I mean, it was really quite disgusting. Of course, I know the amount of work, therapy, language that went in to that score, but I knew the school district would take that test as basis for denying my son services. (And I was right...)

Here's the thing about the whole evaluation process: No one, no one, understands hearing loss! At our MFE Meeting, where eligibility for an IEP is determined, Drew's Dad and I spent forty-five minutes explaining Drew's aided and unaided audiogram, cochlear implants and their educational impact and the effects of hearing loss on children in a classroom setting. The school district representative didn't even know what the threshold for normal hearing children is, nor did she understand that even with his cochlear implants, Drew's hearing is not restored to normal levels. Her comment when we explained cochlear implants? "That's fascinating!" Oh, it is just disgusting.

After a three-and-a-half hour meeting trying to establish Drew eligible for services, the meeting ended with the Special Education Agency representative storming out of our meeting. It was eventually decided, over the course of a week, that additional testing needed to be administered in order to determine Drew's educational needs. (Of course we knew this going in to the original testing, as it is supposed to be a multi-factored evaluation, and I can hardly see how an evaluation takes in multiple factors when only one test is administered, but I am just the Mom.)

Below is the evaluation that was conducted that resulted in eligibility. I would strongly encourage parents to make sure that the TACL-3, Goldman-Fristoe Test of Articulation and SPICE are administered, as they are excellent at identifying the speech sounds that our children can not hear, and omit in their speech. This is the summary:
Drew was seen on August 27, 2009, to further assess his auditory and articulation skills. He was accompanied by his mother. This assessment session lasted for approximately 90 minutes and Drew again exhibited an attention span and ability to focus on structured activities that appears more mature than his age. Testing was administered in a relatively quiet room with Drew sitting on his own in a chair, approximately 6 feet from a low volume air conditioning unit. Testing was alternated between listening and speaking tasks, in order to help Drew maintain his attention. He needed to return to some tests to complete sections.

Drew was administered the Test for Auditory Comprehension of Language, Third edition (TACL-3). Norms for 3-0 year olds were used to derive his scores. Drew obtained a TACL-3 quotient of 102 (mean=100, s.d.=10), which is within the average range. He obtained the following sub test standard scores (mean=10, s.d.=2): I. Vocabulary=8, II. Grammatical Morphemes=11, III Elaborated Phrases and sentences=12. Drew’s sub test scores were all within the average range. During this assessment, Drew demonstrated difficulty identifying both simple and elaborated sentences, characterized by lengthy pausing, repeating sentences quietly a few times and looking to the examiner for clarification, and reviewing picture choices. Lengthier pauses of up to 20 seconds were noted on 4 out of 17 sentences during the Grammatical Morphemes sub test and 5 out of 15 sentences during the Elaborated Phrases and Sentences sub test. Single repetitions of TACL-3 sentences are allowable following pauses of more than 10 seconds for children younger than 5-0. Drew required at least one repetition and extra time before responding to almost half of all sentences presented. Sometimes he required 2 and 3 repetitions of sentences, including simple structures such as “The cat is in the box.”, “The boys ran.”, and “She jumped rope.”

Sections of the Speech Perception Instructional Curriculum and Evaluation (SPICE) were attempted, in order to screen selected auditory skills. During more casual conversations on familiar topics, Drew was observed to respond more readily than he did during structured sentence comprehension tasks. He demonstrated an ability to delay and correctly repeat back modeled sentences following demonstrations with toys during play. He did continue to require extra processing time, repetitions, rephrasings and exaggerated key words intermittently, in order to respond in conversations. Drew responded to most simple questions and some more complex questions accurately. He was able to comment back with related statements readily, when presented with statements that he understood. When Drew did not understand a question or statement, he often did not respond and/ or would smile and look to the examiner for more information. Due to Drew’s level of fatigue, he was unable to respond to tasks, requiring him to identify among SPICE word sets of up to 4 choices or maintain his attention for a large enough sample of oral directions with one to two key words varied.

Drew was administered Simple Consonant Steps 1 and 2 sections of the Phonetic Level Speech Evaluation and items 1 through 26 of the Goldman Fristoe Test of Articulation 2. These tests were used to obtain information on Drew’s ability to auditorally discriminate and produce sounds when imitating syllables and words. Results of the Phonetic Level Speech Evaluation indicate that Drew can consistently imitate single syllables with initial position /b,p,w,f,m,n,y/ sounds, using only audition. Drew was inconsistent in imitating single syllables with initial position /v/ and /h/ using only audition. He was able to improve or repair both /v/ and /h/, through speech reading and tactile cues. Drew was unable to imitate syllables with voiced or voiceless /th/, final position /p,t,d/ and initial position /sh,s,z,l,/ using only audition. It should be noted that Drew produces most of these consonant sounds (except /th/), that he could not imitate in syllables correctly, when producing familiar words in connected speech samples. Specific substitution errors noted when Drew imitated syllables during this test were: vowel for /h/, /d/ for /t/, /s/ for /z/, /n/ for /y/, voiced /th/ for /z/, /l/ for voiced /th/, /p/ for /t/, and /b/ for /v/. Drew also demonstrated the following substitutions when imitating or identifying words during administration of the Goldman-Fristoe and TACL-3, that are related to difficulty with auditory discrimination of consonant sounds: /h/ for /k/, /t/ for final position /p/, and /t/ for final position /k/. These sounds were also noted as correctly produced in familiar words produced by Drew, during connected speech samples. Consistent substitution errors with voiced and voiceless /th/, /l/ (vocalized and glided), /r,er/ (glided and vocalized) were again noted in connected speech samples and when imitating words included in the Goldman Fristoe Test of Articulation 2. These later types of errors are common in children Drew’s age with normal hearing, although he may have difficulty discriminating them. Because Drew was unable to complete the Goldman-Fristoe Test of Articulation 2, he did not obtain a standard score for this test. Remaining words included consonant clusters. Drew has shown emerging skills with /s/ and /z/ clusters and inability to produce /l/ and /r/ clusters in connected speech samples.

After the completion of a more multi-factored evaluation, Drew was found to be a student of educational need under the category of Hearing Impaired - Deafness (who would have thunk?). Below is Drew's Educational Need Statement:


Drew has difficulty identifying/comprehending both simple and elaborated sentences. Drew needs direct instruction to: improve and practice his comprehension skills, to maintain development of his auditory memory skills, which will help reduce processing time, and he needs to acquire and maintain these skills at a pace typical of his age group. Drew needs to apply these skills to verbally indicate his need for clarification when he doesn't understand.


Drew needs direct instruction on phonetic listening skills in order to better produce and discriminate among phonemes, especially for those sounds he doesn't hear well, in order to improve overall auditory skills. Further development of phonetic skills will improve his understanding and use of word endings and sentence endings.


Drew needs to maintain expressive and receptive vocabulary at a level typical for his age group. To do so, he will require direct instruction, which will include ample practice along with repetition and review.

Saturday, October 24

Story Books

Wow! Have you seen these?

I've been working on uploading our family pictures from the year - I'm a little behind. And I happened to see these books! I have not ordered one, so I don't know exactly what they look like, but to me, they seem like a perfect thing for our little HOH/deaf kiddos! There is one about birthdays, bed time and farm animals. Too cute.

Enjoy!

Monday, October 19

Apple Farm


Drew enjoyed his first field trip today! His class went to a local apple farm. They learned all about how apple trees grow, how bees help apples grow, and, most importantly, they learned how to pick apples. "Twist, twist, twist! Pull!" Drew was quite happy that he was able to pick apples all by himself!

Enjoy the pictures of Drew. He had so much fun on the apple picking trip. He is getting so big!
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Monday, October 12

Let's Start From the Very Beginning

During much of our transition and IEP process, Drew's Dad and I felt that it was necessary to remain silent on the blog. While there are many positive aspects to keeping this blog public, not knowing who is reading is not one. So, to protect ourselves, and Drew, as we went through a very heated, conflict ridden process, we remained quite.

I would like to start at the very beginning, in order to try to help other families who may experience a similar situation. When a child, under three years of age is diagnosed with a disability, s/he begins to receive services through state funded programming, provided through the health department under Part C of IDEA. These services are very family centered, and focus on the wishes of the parents and family. Our services were provided through Help Me Grow and The Columbus Hearing Impaired Program, and were exceptional.

When a child turns three, the early intervention services provided through IDEA Part C are discontinued. If a child is still suspected to still have a disability at age three (some children may outgrow a disability), then a child enrolled in IDEA Part C services goes through transition. The child will now eligible for services, following evaluation showing a continued need for services, under IDEA Part B, and an IEP will be developed.

As your child nears his/her third birthday, the process will begin with a 120 Transition Meeting. This meeting is arranged by the family service coordinator you currently have for your early intervention services, and is a opportunity to introduce your child, and family, to the school district. This is an opportunity to discuss current performance levels, concerns, testing, therapies, etc. with your school district. If the LEA (Local Education Agency) suspects that the child has a disability, a referral for evaluation is completed. This begins the time lines for transition, and is vital to ensuring a smooth and seamless transition process. If an IEP is not developed by a child's third birthday, s/he could go without vital services while the process plays out. Before you attend your 120 Meeting, review the Interagency Agreement between your school district and the county or state program providing services. There are time lines for transition that exist between Part C and Part B agencies to make sure the transition process runs smoothly. We had significant issues with our school district following time lines for transition, as outlined by law.

To me, the family aspect for a deaf or hard of hearing child is crucial for a school district to understand, because it has a significant educational impact. As parents, we make very difficult decisions very early on about the communication modality we are going to use with our child. From Auditory Verbal to Total Communication to American Sign Language, we have all made decisions that must be respected in the educational setting. I would strongly encourage you to educate the personnel you are working with from your school district on your the choices you made for communication modality and the needs you child has from an educational perspective as a result of this choice. This one area proved to be very powerful when it came down to writing Drew's IEP.

So, what should you do to prepare for your 120 Transition Meeting?
  1. Prepare an introduction on your child. This is the first opportunity you have to introduce your family and your child to the school district. Be prepared! What is your child's disability? What type of medical devices, i.e. hearing aids or cochlear implants, does your child use? How long did your child go without hearing? What are his/her strengths? Weaknesses? What are your primary concerns of his/her disability on educational performance? What communication mode does your child use? What current services is your child receiving? In what environment does your child learn best? Include anything that will help the district get to know your child, and make a case for the placement or services you would like.
  2. Read Procedural Safeguards of IDEA 2004.
  3. Make a plan. Discuss your goals for the meeting with your family service coordinator, and anyone else that may be attending the meeting. Make sure that everyone understands what your wishes are for placement or services from the school district once your child turns three years of age.

What should you do during your 120 Transition Meeting?

  1. Take notes! You will not be able to remember everything you discussed during the meeting. If both Mom and Dad are attending the meeting, have Mom do the talking while Dad takes notes, or vice versa. That worked really well for us throughout the process. Drew's Dad was excellent at taking notes, while I did most of the speaking. If both parents aren't attending, ask someone else, like your family service coordinator, to take notes.
  2. Expect to be given a copy of IDEA: Procedural Safeguards. This document is required to be given to parents by the school district at the 120 Transition meeting. Again, our school district did not follow through with this. Make note of this in any letters you send the district, as it can be helpful should you need to file a complaint or due process.
  3. Gain a clear understanding of the school districts timeline or plan for evaluation and writing of an IEP. Voice any concerns you may have with the timeline at this meeting.
  4. Make note of any discussion of placement or money. A school district can not discuss placement prior to performing an evaluation on the child. In addition, a district can not determine placement based on money. Make note of any references to either of these, as they will be very helpful should you need to file a complaint or due process. (Note, our district mentioned both of these during our 120 Meeting.)

What should you do after your 120 Transition Meeting?

  1. Write a thank you letter to the school LEA. This should include acknowledgment of their time to attend the meeting. In addition, let the letter breifly recap the meeting, highlighting the information you find most important and useful. If you do run into issues down the road to an IEP, this letter begins a trail of paperwork that can be useful during a complaint or due process.
  2. Follow up with the LEA to make sure that the referral for evaluation is completed and that the evaluation is scheduled. We had significant issues in this area, so it's important to stay on top of the time lines. And, again, if you are having issues getting an evaluation scheduled, continue to write letters. They are excellent to use in case of complaint or due process.

Honestly, we did not go into our 120 Transition Meeting prepared. We fully expected Drew's transition to be a "walk in the park," as everyone we know through our area did not experience issues when seeking placement at the oral hearing impaired program. I think it is important to understand that every transition, just like every child, is different. So, do your homework, and be prepared. We really discovered that (not all but most) school districts will try to wear you down throughout this process with demoralizing and nasty letters, strong-armed, bully-type tactics. In our experience, the district expected us to get tired and go away. But when they met well prepared, determined parents, they eventually have to follow the law. And that is all we really expect.

Sunday, October 11

How Tall This Fall?

So tall this fall, with the help of his tip-toes!



Today, we spent a very beautiful, sunny fall day checking out a local farm, complete with a hay-ride, games and pumpkin picking. Or, as Drew say, "Punk-in Picking!" We all had a wonderful time, relaxing and enjoying the day. It's so nice to have our lives back to normal.

Saturday, October 10

Yesterday's Gone

The stress in our home has been greatly relieved, as Drew was finally placed through the IEP process at the school we knew he needed. With the meeting that finally went our way came a complete elimination of stress. Sure, we are still beyond angry, upset, disappointed, etc. with how our entire IDEA Part C to Part B transition was handled by our school district, and we are working on improving that process, but ultimately, Drew is now receiving the services he needed, regardless of how we had to go about getting them. Thank God that yesterday's gone. I don't know how much more I really could have handled.




In just two weeks since Drew began preschool, we have noticed a dramatic change. His speech is clearer. He talks in complete sentences. Yes, he did talk in completed sentences before he began school, but this is different. Before he began school, an answer to a question like, "What is your favorite sport?," would be, "Basketball!" Now? "My favorite sport is basketball!" Drew is being taught to respond in complete sentences, and unless he does, his requests or answers are not accepted.



Drew has also become fascinated with letters. We have a set of letters in our bathtub, which Drew has never, in three years of life, played with. Now, he pulls the letters out each and every night and puts them all over the bathtub walls. He can even name a couple of letters, and has learned how to spell his name. This is all in two weeks. The focus on literacy in this program is just amazing. We can really see the focus shining through in our daughter, who is a hearing peer in the program. She is beginning to sound out letters in words. It's just amazing.




Each and everyday, our decision to send Drew to this particular hearing impaired program is confirmed. I am just so happy with how everything turned out.
I have been so bad about blogging through this whole situation. It really was very, very stressful, and weighed on me heavily. I'm so glad that I now spend my evenings looking toward tomorrow, instead of dwelling on a process that was vastly out of my control. I will get back into the habit of blogging now. And, as promised, I will share with you all of our documents and materials that we used throughout the process. But honestly, I've just needed a break from the whole thing. Evenings spent relaxing and enjoying my children, instead of looking through legal policies and procedures, education law and for a new school district.

Thursday, September 24

Happy 3rd Birthday!

It's hard to believe that Drew is three years old today! My little baby boy is growing up right before my eyes...

Monday, September 21

Annual Conference - Ohio Chapter of AG Bell

The Ohio Chapter of the Alexander Graham Bell Association for the Deaf and Hard of Hearing will hold its annual conference in Columbus on Saturday, October 3, 2009. The topic will be "Advocacy Strategies for Parents of Children with Hearing Loss". The guest speaker is Betsy Moog Brooks, the director of the Moog School and Family School at the Moog Center for Deaf Education in St. Louis, Missouri.

For registration information, please click here. If you have any questions about the conference, please leave a comment.

Saturday, September 12

Drew Sings "Carmen Ohio"

It's a big day in Buckeye Country, as our beloved Ohio State Buckeyes take on the Trojans of USC. Of course, our family is ready for the game, decked out in our scarlet and gray. And, this season, we're teaching the kids many of our favorite game day songs, including our Alma Mater, Carmen Ohio. Enjoy Drew's singing!




Lyrics can be found here. Drew actually knows the song much better than the video, but something about bringing out the video camera makes my kids go crazy!

Friday, September 4

The Post In Which Things Get Personal...

**I originally wrote this post on August 24th, as we were still working with the school district to find Drew as a child with a disability. While the process has gotten a bit better, with Drew having been found as a child with disability, I thought this would give you an idea as to why this process has been so difficult for us, on so many levels.

We've been dealing with this transition process for nearly five months, and with each passing day the situation becomes more and more stressful; more and more frustrating; more and more hurtful. I sit in disbelief nearly everyday about the issues we are facing, because I have built great memories from the very school district that is violating my rights and not providing special education services for my son.

Today, I live not even one mile from my childhood home, the only home I ever really knew, and the home which my parents still own today. The playgrounds I let my children play on today are the very ones that I played on as a child. I know all of the neighborhoods, and all of the shortcuts through them to miss traffic. The elementary school my children will attend is the same elementary school I went to as a child. I can remember performing my fifth-grade musical on the stage of that school's auditorium; it was Cinderella: Past, Present and Future. I was cast as a member of the 50's and had the line, "Well, my boyfriend's taking me to the Buddy Holly Concert!" That's a totally random story, but this is what my life is filled with. Constant, wonderful memories of my childhood everywhere we go.

And then you add the fact that Drew's Dad and I met in the hallways of the high-school in the school district in which we live, as 16 year old kids. We flirted, fell in love and started the foundation of our life together in the very schools we want to send our children to. Drew's Dad played football; I played field hockey. Conveniently, we had practice each and every night after school on adjacent fields. He could watch me practice; I could watch him. (Boy do men's bottoms look nice in football pants!) Oh, it was so much fun. That feeling of falling in love, where little butterflies dance in your stomach each time you see the person. Just thinking about it brings back such wonderful memories. We continued to date all through college at Ohio State, where we developed a strong foundation for our relationship that lead us to the alter as 22 year old kids.


Throughout our entire relationship we have always talked about and wanted to live in our community and raise our children through the school system we were raised. We love it here, and in many ways, this community is the only reason we are still in Ohio today. We've always talked about sending our kids to school in the same buildings we attended; we still know many of the teachers in the system today. We can't wait for the day that Drew runs out onto an athletic field wearing the Black & Gold; we want to hear our fight song play as we cheer Drew's Sister in field hockey, tennis, or what ever sport she chooses. We love going to community events and running into friends from high school, who also have the same love for this community as we do, and also are raising their families here.


But with the entire transition process, the violation of our rights, the complete disregard for the needs of children with disabilities, my love for this community overall is dying. So, while we go through the daily grind of trying to get Drew's evaluation completed, trying to gain eligibility for special education services, trying to get Drew into the preschool setting that he needs, pieces of my dreams from childhood are dying. And that is what I am having the most difficult time with. I don't want to send my children to another school district. But how can I choose to send them to a district that apparently has no concern over the needs of children with disabilities?

Sunday, August 23

And the Struggle Continues...

Just when I thought we might be able to get through this IEP process, with finally having some dates to look forward to firmly scheduled on the calendar, the process takes a turn for the worse. Again.

Our MFE Meeting was on Wednesday, where we discussed the results of Drew's evaluation, performed by the school district. These evaluations were to determine Drew's eligibility for an IEP, and thus special education services. Let me say that the law clearly states that a child with a "50db pure tone hearing loss over [4 different frequencies]" qualifies under the category of deafness. Since Drew's pure tone loss is 100db, across all frequencies, it's clear as day, correct?

The first forty-five minutes of the meeting were spent giving the school district personnel an education on hearing loss and how to read Drew's audiogram. Seriously, the representatives from the district could not read an audiogram, and had no idea what a normal hearing range for a child even was. I had out pictures of audiograms showing what sounds Drew can hear, what he can not; pictures of what items make sounds at what decibel levels so that they could have some understanding of normal hearing. It was really quite shocking how little they understood about hearing loss. And they certainly knew nothing how how a cochlear implant works, and even less on how Drew actually hears with his cochlear implants. This is very alarming, especially considering that these individuals are involved in making decisions about my child's education.

Clearly Drew is doing well with his cochlear implants, and scored within one standard deviation of average on the PLS-4, a speech and language evaluation given by an SLP from the school district. Because of this score, the district sees Drew as an average child for his age, and is saying that his disability has no adverse effect on his education. (Which, again, it outside of the actual law.)

Are you kidding me? I think I've spent enough time and energy researching Drew's disability to know that profound hearing loss has had an adverse effect on his education to date, and will continue to have an adverse effect on his education. Since Drew has been in early intervention since he was six-weeks old, and has had a minimum of two hours of formal aural or speech therapy a week since implantation, in addition to the therapy provided by us at home, how has his disability not impacted his education? If a typically hearing child was given as much therapy as Drew, s/he would test so far above average on the PLS-4 that s/he could go ahead and start Kindergarten at age three. I mean, seriously, this is just a bunch of crap. Drew's hearing loss has an impact on him each and every day of his life. As his parents, we do as much as we can to minimize those effects; we minimize background noise, speak so that Drew can see our lips, phrase questions in ways we know he will understand, speak louder and clearer, get his attention before speaking to him, just to name a few.

So, after three and a half hours, we left the meeting with no determination on Drew's eligibility for an IEP. And, to top it off, the meeting ended with the Special Education Department Representative storming out of the meeting after I questioned why the law was being interpreted differently by our school district than what it is in every other district we know in Ohio. Apparently my question, while valid, was seen as "disrespectful" and warranted juvenile behavior that you would see from a 13 year old child. Not surprising; pretty much every encounter we've had with the school district has included juvenile behavior.

This is what we are dealing with, day in and day out. And we have been dealing with since the day we had our transition conference back in March. One delay after another, in an attempt to deny our son special education services that he so clearly needs and qualifies for. So, we left the meeting without eligibility, and will reconvene on Monday to make a final determination.

**Updated: We received an email from the district on Sunday morning indicating that they would like to complete further testing of Drew and reschedule his eligibility meeting for later in the week or early in the following week. The stall attempts continue, because with each passing day, they give us one less day to do the things we need to do in order to get our son the services he needs. Seriously, I don't think I could even begin to share all we have been through because it is just so ridiculous that it is almost unbelievable.

Friday, August 21

Did You Know?

As I continue to research and work with our school district in an (what seems to be an often futile) attempt to secure Drew appropriate, needed services, I was sent a link to "Did You Know?," a series of documents created in conjunction with The Moog School for Deaf Education and The Central Institute for the Deaf in an attempt to educate school districts on hearing loss, and its' educational implications. I've found these to be helpful, and I hope you do as well.

Tuesday, August 11

The Good, The Bad & The Ugly

It's amazing how a little phone conversation with Drew can bring a little bit of good back into my world. I'm traveling for work again this week, and had the opportunity to talk with the little guy on the phone earlier this evening. We chatted about his trip to the bowling ally today.


"No strike."


We chatted about his pizza lunch.


"Cheese on top!"


And I got to hear my most favorite words.


"Love you more!"


But things have been bad, and often downright ugly. And I'm struggling to just to get through day by day. This whole IEP process has not brought out the best in me. I am a "Type A" personality, probably to the strictest of its' definition. I'm not quite the OCD personality I used to be (who can be with two children?), but I like to have 100% control of my life at all times. I like to know not only what I am doing tomorrow, but next week and the week after that. I am very scheduled by nature, and I don't really enjoy change. I can handle change, but like change most when it comes with notice.


That's me. Take it or leave it. I've learned a lot about myself over the years to be able to recognize this. It can be a strength, and at times a weakness. But it is just who I am. I like to have control over things in my life. And while this type of personality attributes to many of the successes I have had both personally and professionally, this personality is just not working for me right now.


In this IEP-being-at-the-mercy-of-a-school-district process, I'm not good. It just isn't a process designed for people like me. A system where you lack control of when a meeting will be scheduled, or even where your child will attend school just days from now. For us "planners", this whole system is for the birds, and really wears on you mentally and physically. I've been having a lot of trouble sleeping at night. Going through this process, which is now coming up on five months, has been exhausting. I worry about every last detail. Did I articulate Drew's needs well enough? What research am I missing? Who haven't I contacted that might be of assistance?

Now that we have some dates on the calendar, I am doing better. Drew's evaluation will take place on the 13th. The meeting to determine his IEP eligibility is on the 19th. The IEP meeting is scheduled for September 2nd. But I still lack control. What will the evaluation say? What placement will we be offered? Will the school district place Drew in the program we have chosen? There are a lot of unanswered questions, and I'm just plain tired. I'm ready for Drew to start school. Drew is ready to start school. Drew's Sister is upset that Drew won't be attending school with her on the first day of the 2009-10 school year. (Isn't this great?: Drew's Sister is enrolled in the oral deaf education program we want Drew to attend, but our deaf child isn't enrolled in the program. Excellent.)

On the surface, it appears that Drew is doing OK. He speaks. Well enough for those around him to understand his needs most of the time. He understands much of what is said to him. But there are still major areas of concern. His listening is compromised at times. He will never hear as well as his hearing peers. He can't pronounce or even hear some of the phonemes of the English language. He deletes consonants from his words. His grammar is incorrect most of the time. He can't count, and doesn't seem to understand fully the concept of counting. He has developed a bit of a stutter, where he'll be searching for words in his head, yet can't get them to come out of his mouth. His list of needs continues. Our goal is for Drew to mainstream into our school district by Kindergarten. Without continued, appropriate services now, that just won't be possible. The typical vocabulary of a kindergartner is 10,000+ words. And that's just vocabulary, the tip of the iceberg when it comes to being able to perform at the level of his hearing peers.

I don't want to look back on this process one day and wish I would have done something different. And to date, I'm pretty proud of the decisions we have made for Drew. Cochlear implants were right. Bilateral implantation was clearly the right decision. An oral approach has worked very well for Drew and our family. The decision to change audiologists has worked well. The therapy we have chosen has been right. And now, we're in a situation where we lack the control, and a decision will be made that will significantly impact Drew's future. I just pray that the right placement is made, so that three years from now Drew walks through the hallways of our elementary school with his sister. And all of his peers. On the way to meet his kindergarten teacher in the mainstream.

Monday, August 10

IEP Complaint: Verdict

We shared with you that we had filed a formal complaint with the Department of Education regarding multiple violations of our rights throughout the transition process of IDEA. We are happy to report that the Department of Education found the school district in violation of our rights on all counts of our complaint. (Maybe I should say we are happy that the verdict was in our favor; we are not one-little-bit happy with how this transition process has been handled by our school district.)

While I won't share all of the particulars, the district was found in violation of our rights with regard to providing parents with Procedural Safeguards, time lines for transition, time lines following parental request and consent to an evaluation and time lines following referral for evaluation. While the formal letter of findings only speeds up our transition process by two weeks, our hope is that we have saved countless other parents from having their rights violated in the future. We also sincerely hope that our districts' Special Education Director enjoys the training she has to attend as a result of her failure to follow laws outlined for transitioning families.

While we hope you never encounter the issues we have experienced, some helpful tips when filing a complaint:

  • The Department of Education can take up to 60 days to rule on your complaint. As soon as you feel your rights have been violated, file a complaint. Should your district choose to act within the confines of the law, you can withdraw the complaint.
  • The Department of Education can only rule on issues they are aware of. I am certain that our school district is in the practice of violating parents' rights, specifically because their standard procedures, as outlined in a letter we received, are outside the letter of the law. If no one ever reports the violations, the DOE knows nothing about these issues, and can therefore not enforce change.
  • File all documentation with the Department of Education. Even though the Department of Education will request documentation from the district, it is imperative that you also provide this. In our case, the district failed and refused to submit any of the requested documentation. Had Drew's Dad and I not submitted the information, there would have been no documentation on which to base the letter of findings.
  • Maintain a professional relationship with the case worker from the Department of Education. This person is the one that will ultimately write the letter of findings. We did not know this until well into the process, so I was very happy that all of my conversations with this individual were professional and as emotion-free as possible. State the facts of the situation.
  • Remember the process is about your child, not the fact that you have been "wronged". As frustrated as I am that this process is not punitive (believe me, someone should, in my opinion, pay for what we have gone through) the important thing is that your child receives the services he/she needs.

Friday, July 24

Cochlear Implant IEP - Complaint Filed

I personally have had enough of the BS we are dealing with concerning Drew's IEP (Individualized Education Plan), and I am pretty sure I can speak for Drew's Mom on this one as well.

We're busier than normal right now, but we are going to put our heads together and write a series of posts documenting much of what we have been going through in the last few months. We're sorry that we have not been posting as much and will try to catch everyone up.

I believe that our school district is intentionally depriving parents of their rights under law and I want all parents out there to 1) understand where to find out what these rights are (both federal and as outlined in their state law) and 2) have some support when the schools that like to bully unsuspecting parents start violating these rights.

You really need to understand your Procedural Safeguards, so that if you have a dispute with your school district you understand where and how to get resolution. If you are transitioning from Part C to Part B of IDEA (you are currently enrolled with a state organization like Early Steps or Help Me Grow), there is an Inter-Agency Agreement between the state organization and your school district which outlines the transition process and timelines. Obtain a copy of this document from your state agency.

Initially I did not want to post details on our blog about our IEP process because I didn't want anyone at the school to hold any of our opinions against us. At this point, however, I feel "that ship has sailed". We've filed a complaint with the Ohio Department of Education (ODE) alleging at least 6 violations of law our school district has committed and our relationship with the lady we've been dealing with couldn't possibly get any worse.

FYI: It chills the school/parent relationship when school contact refuses to provide the parents with the "procedural safeguards" (i.e. parental rights during the IEP process) until after three separate requests and 52 days have passed.

Anyway, we're still here and working for Drew. We're also working for you parents with cochlear implant kids so you can be as protected as possible when you head down this road. We hope you don't run into trouble or have to go to Due Process, but if you do we want you to have the best case possible.

P.S. If you have any questions about the IEP Process from a legal standpoint, feel free to post in a comment and we and our readers will surely try to assist.

Thursday, July 23

Moog Summer Workshop: Therapy


While Drew's Dad and I were in the Parent Sessions learning about Modeling & Imitation, Language Development or Cochlear Implant Mapping, to name a few topics, Drew was in a classroom and in therapy sessions. While we were at the conference, Drew received four hours of individual therapy. This is more than he has received all summer! With the state of Ohio in a budget crisis, the funds to our Regional Infant Hearing Program were reduced by over 50%, thus changing our services from weekly to monthly.

Drew's therapist at Moog, Michelle, was wonderful! Drew responded really well to her, and did well during his sessions. Michelle was really investigating Drew's language progress, both expressively and receptively, to see if there were in gaps in his language or things we have been missing.

One of the struggles with Drew continues to be his stubbornness. During therapy, Michelle would work on a task with Drew to see how many critical elements he can understand at one time. She would say something like, "Drew, Mommy drives the truck." Drew's Response? "No, Mommy rides in the car!" He has a mind of his own, and won't follow the task. So, while we are happy with his expressive, spontaneous utterances, we have no indication as to whether or not he auditorally can process the request of his therapist. It's very frustrating. We would assume that he understands, and simply has a mind of his own, but that can set us up for failure in the future.

Michelle was also looking to see if there were any gaps in his language, and she found that he didn't know any of the words in the kitchen! She showed him pictures of pots, pans, spatulas, toaster, etc. and he didn't know any of them receptively, let alone expressively. As Michelle was explaining this to me, it makes sense: Usually I am trying so hard after work just to get dinner on the table, that I often give the kids an activity to complete to keep them out of my kitchen! Now, I guess I will need to find something for them to do in the kitchen that will allow Drew to experience a lot of new vocabulary.

Overall, Drew's therapist thought that he was doing well and that with continued early intervention he will continue to develop his language and speech skills on par with his hearing peers.

How can you record your child's milestones? Moog provided us with a copy of My Baby & Me, which is an excellent book to track your child's speech and language development from the very beginning. Drew's Dad and I commented that we had wished we were given this book three years ago. I would recommend it for any family who has a child with hearing loss. It will show the first 100 words, next 100 words, has tabs for therapy records and notes, and in many ways is like a baby book to record important milestones.

Wednesday, July 22

Audiology

We made some tough decisions about a year ago, and changed locations for Drew's audiological services. After just two mapping appointments, Drew's new audiologist decided to move to Cleveland, Ohio, and to a practice that does not perform pediatric cochlear implant mapping. Ugh. So, once again we were left without audiology services. We are very fortunate that our new audiology program quickly filled the open position, with a highly skilled audiologist, which we met with for the first time early last week.

Drew was an excellent patient for his new audiologist, allowing booth testing to be conducted for over one hour! With Drew's amazing ability to perform conditioned response, we got our best audiogram results ever. I was so pleased with the way the testing was performed by the audiology staff, and with how well Drew did giving very reliable results.

After the booth test, Drew's new audiologist told us that he was not happy with Drew's responses in the booth! The audiologist felt that Drew's maps could be programmed better, and that we shouldn't simply accept responses at 25 db. "Drew can do better than this," he said.

Oh, it was like being in heaven! Finally, someone that doesn't simply accept that Drew can talk, but actually reads accurate testing results and wants to make improvements. Heaven, I tell you! I've finally, after two years, found my match! Please don't leave us, new audiologist!

How did we celebrate? A trip to Kings Island!


Tuesday, July 21

Moog Summer Workshop: Parent Share

One of the best parts of the Moog Summer Workshop included a "Parent Share" on Sunday morning. Each family shared a language activity they have enjoyed with their hard of hearing or deaf child.

We shared our literacy idea with the other parents. Many of the families in attendance have children much younger than Drew, so I hope they will find the idea helpful in the coming years. Drew certainly has benefited from the activity, and will frequently ask us to walk around the house with him and point out the letters. It has also been an excellent way to identify which sounds Drew is able to produce, and which ones he can not.

Some excellent ideas we came away with from the parent share include:
  • Peek-A-Boo bags: Excellent for throwing in the diaper bag and using as an activity while waiting during doctor appointments. I really like the A-Z and Learn to Read bags and will be ordering them soon!
  • Tune Ups! Music: In the car, music is a great activity for all children. This CD was created specifically for children with hearing loss. It includes ideas on how to incorporate language while listening to the music! So exciting!
  • Experience books using a Snapfish-type service. I've made some homemade versions, but hadn't thought of making a more professional style book. They look so nice and are much more sturdy.

Others shared favorite books, like Five Little Monkey's or homemade matching games with pictures of items throughout their house. I really like this idea, as it incorporated items that should be familiar to the child. It was by far one of my most favorite parts of the seminar.

Monday, July 20

Blogging Fun in St. Louis

We've returned from our annual family vacation, which this year included a trip to The Moog Center for Deaf Education. I'll share information from the wonderful courses and seminars we attended throughout the four day conference in future posts. I would strongly encourage those readers with young children with hearing loss to attend the Summer Parent Workshop. It is an excellent educational opportunity as well as a wonderful way to meet other parents. (And as a bonus, your child will receive four hours of therapy throughout the seminar! For $150, it's worth it just for that!)

Our first night in St. Louis we were able to meet Elizabeth from Deaf Village and co-author of Cochlear Implant Online. Elizabeth is currently working on her graduate studies in oral deaf education and certainly has a world of possibility in front of her. The way she interacted with Drew was amazing, and Drew's Dad and I quickly began the recruitment process, trying to lure her to our area of the country.




Elizabeth, it was wonderful meeting you!

Friday, July 10

Anyone...

Heading to St. Louis?

If you are, please let us know. We are looking forward to meeting many internet friends!

Thursday, July 9

President Obama, Can We Chat?

This IEP process sludges on. Three months. And Counting. We still do not have a date for Drew's Multi-Factored Evaluation (MFE), and heaven forbid the school district would want to show any sense of urgency to complete it. After all, Drew may not even have a disability, as has been asserted by our school district.

Drew's Dad and I are at the point now where we could care less about what we post here in print. As Drew's Sister says, the whole process is "diculous," aka ridiculous. And we have been through so much with this process, from knowing the IDEA like the back of our hand, to knowing how to file a formal complaint with the Department of Education (yes, we've had to do that), to understanding the qualifications for an IEP and recognizing blatant violation of our rights. At this point, we know the process so well that we hope to help others as advocates in the future.

All of this has me thinking, why is this process so complicated that it looses all focus on the child and becomes a struggle over money and (unavailable) resources? Naturally, I want to start at the top: President Obama, if you want to reform education and make sure that all children are receiving a free and appropriate education, you need to take a look at special education. Why are the funds to educate special needs children being distributed to school districts? The same school districts that are responsible for evaluating and assessing the needs of the child? Doesn't this seem like a huge conflict of interest? It certainly does to me.

Now I know I am just a parent (as I've also been told by the district), but it doesn't take a genius to see how flawed this whole IEP/Special Needs Education system has become. In order to qualify for the funds, the school district must assess the needs of the child. Well, don't you think that the school district is going to find the most minimal needs the child has in an attempt to secure funding? And how does the goverment make sure that the funding is spent on the services it was intended for? Even though the process, as stated in the law says that the special education support can not be based on money, isn't that really what we are all talking about? (In our case, I know it to be true, since our District Special Education Director, at our 120 Transition Meeting said, "Ultimately, it all comes down to money.")

And what is created out of this entire situation, President Obama? The feeling that parents are worthless, unnecessary players in the education of their children, and that the school district is a dictator that will control all services and funds the child receives. It is disgusting. I created this child, love this child more than anything else in the world, and yet I am inconsequential in the decisions being made about my child's education.

So, the question is, what changes should be made in the special education system that will put the focus back on the child, instead of the dollar? I don't have all of the answers. But I can guarantee you that I would spend the money on my child's education appropriately. Wouldn't you, if it were your child? Someone, Mr. President, needs to recognize how broken this process has become, and make meaningful change.