Comfort.

The IEP today went fine. Nothing surprised us. Our public school system will continue to see Christian 2 times a month. We're going to work on some more complex goals, such as discriminating information in noise and continue self-advocacy with his amplification. Christian is doing WONDERFUL.

This IEP got me thinking of how much things WILL change though the moment he leaves dreamworld (his current school) and enters into the public school system. A class of at least 25 kids, teachers who don't have a background in Cochlear Implants or Deaf Education, a school that isn't built acoustically for children with hearing loss is what we're looking at come 2012/2013 when Christian enters Kindergarten. I found myself worrying if he'll miss the announcements over the intercom, or if he'll have a hard time hearing in the gym with all the squeaking sneakers. I got a little anxious over the thought that he won't have an audiologist in the school to fix a wonky earmold or pooped out battery on his CI. I started thinking about all the children who have NEVER seen a kids with a CI, wondering what they would say (or not say ) to him.

With all these worries, I still know that my little boy is smart and will be ready and able and up for the challenge of a FULLY mainstreamed school. I know that he will have an IEP that will make sure that he will have appropriate accommodations so he doesn't miss out on announcements. I know he'll have friends from the neighborhood who have grown up with him in his class, who think his CI is cool. I know that if something goes wrong with his amplification that systems will be in place to help him. It also doesn't hurt that I'll be just around the block always available to help out. He' still a little boy. I can't even believe I'm thinking of Kindergarten already.

Where does time go?

IEP DAY

This afternoon I'll be sitting in our IEP meeting with the public school system. I usually am a ball of anxiety about these things, but all is well in the land of Christian. He's performing way above age-level in all aspects of language and development. He is doing just wonderful at school, and loves his public school teacher who he sees 2 times a month. However, I still am a bit nervous. We're going to be discussing goals that involve very complex listening strategies, such as performance in noise and recalling stories given to him in unconventional modes (like from a tape recorder!). When did my little boy get to be so big? Weren't we just playing listening games with shape sorters?

More to come...

IEP Update and HUGE News

I sat down the night before our meeting with his speech report in one hand and a glass of wine in the other. As I read through the scores I just cried. I cried tears of joy, knowing that my boy just wasn't doing well, he was doing absolutely amazing. My boy, who is profoundly deaf, was in the upper 90th percentile across the board in expressive and receptive language. My boy, who relies on a Cochlear Implant to listen and speak, is functioning well over one full year older than his chronological age in all subtest scores, including Sentence and Word Structure, Concepts & Following Directions and Recalling Sentences. My little boy, is just amazing.

I poured over each and every test, and just smiled. The Goldman-Fristoe 2 Test of Articulation was of great interest to me this year as it is a quick and dirty test of articulation accuracy. Last year, Christian demonstrated 41 articulation errors at the word level. This year, his current error count is 17. Wow. That puts him still above typically hearing peers in articulation errors.

At our meeting, we sat down with our teachers and the Director of Speech Language Pathology. We all were in tears, as our in-class SLP went into detail of Christian's little life as a Frog class member. We chatted about how he really IS a stinker, and is all boy through and through. We affirmed that what we were seeing on paper was a true representation of Christian. We talked about how sometimes he is a bit overly sensitive, how he fidgets, and how he sometimes loses interest in some tasks. We talked about how all those characteristics were typical of 3 year olds. Especially boys. We learned that he is still Mr. Social in his class and throughout the preschool. We were assured that he has many friends and is well-loved. Of course I cried some more.

At the end of reviewing these scores, I jumped ahead and asked for help writing goals for next year's IEP. I didn't even know where to begin. And that is when we learned that Christian's school was recommending that he no longer receive Related Services as he no longer requires them. What this means at Christian's school is that while he will be monitored intensely, he no longer requires pull-out speech therapy. He will still have an IEP, but the goals will be targeted informally in the classroom, with periodic monitoring as needed. He will only be testing once per year as well. Basically, Christian has graduated from therapy. What is so wonderful about the model at Christian's school is that while he won't be receiving services, he'll still be closely monitored. What this does is really help prepare him for heading into either our parochial or public school come Kindergarten, which is only 2 years away.  

While we as a family will always be committed to Christian's success, we finally feel like we are able to step back a bit and just enjoy our beautiful, silly, sweet, and slightly spunky little boy. I feel like I can breathe just a little bit...just in time for summer. 

What We're Working on Tuesday-New Maps and IEP Week

Reason #8,589,012 I love Christian's school: Onsite Mapping/Programming by our fantastic Cochlear Implant audiologist. HOORAY! Our audiologist also worked for Cochlear and was on the development team for the Nucleus 5. Expert much? LOVE IT.

Christian was mapped yesterday and while things didn't change too much, his high frequencies were upped a little bit. As most CI Mommas can attest, the day of/day after mappings are a bit touch and go. An adult user once told me that she feels like she was up pulling an all nighter after her mapping sessions. Christian definitely was a bit whiny and pooped out, but he is adjusting just fine to his new maps. He'll be tested on Wednesday so we can get a full report of where he's hearing.

Did I mention that this week is our IEP week with his school? And did I mention I'm not even worried about it because reason #8,589,013 why I love his school is because IEPs are collaborative and goal centered? I actually am LOOKING FORWARD to our meeting this Friday. I can't wait to set our goals for the rest of this school year and summer. 66

Anticipation

Tomorrow is our IEP meeting with our county pubic school system. I'm full of anxiety and anticipation, but also feeling much more calm than I have in weeks past. My life has been consumed by preparation for Christian's transition out of the Infants and Toddlers program and into the public school system, and honestly, I am ready for all of this to just be over. Christian has made remarkable progress, and is testing above age level and better than his typical hearing peers. I'm planning on going into this meeting expecting nothing, and just being thankful that my little boy is doing so phenomenally well.

A New Attitude

After I almost jumped off my roof yesterday, a good friend helped talk me down and helped me get some clarity to this whole situation with Christian's IEP. I feel a sense of relief, and honestly, for the first time in a LONG time, I slept last night. This friend also happens to be a school psychologist who sits through 3 hour IEPs frequently. And, she knows how crazy I get. As I was going on and on about the possibility of him not have access to music and arts in his next preschool placement, she stopped me and said "He's fine. He's not even 3. He's still a little guy!". She's right.

The fact of the matter is that this IEP that we have coming up is really timed poorly. The ONLY issue that can be addressed at this IEP are the itinerant services that Christian is going to receive once he graduates out of the Infants and Toddlers program on his 3rd Birthday in February. Because Christian will be staying at his current school through the rest of this academic year (which is also a private school that is not even in our state), there is not much that the county can even address. We know we are going to get some sort of itinerant services (the frequency and the actual teacher will be determined at the IEP), and I am ok with that. I am going to request once we have Christian's preschool placement worked out that we have a IEP review. Then we can worry and stress about his specific needs.

I've been working myself up so much worrying about the great unknowns, and by talking this whole situation out with my friend, I realized that maybe I've been making this whole IEP process more about ME than about Christian. I get all weepy just thinking about losing our Early Intervention teacher who has been with us since Christian was 9 months old. She is a part of our family. My stomach turns about the possibility of us not returning to his current school next year. I am stressing over a back-up plan preschool in the event that we don't return next year. I don't want to leave our nice little comfort zone of our amazing service provider and phenomenal school.

I am NOT good with change, but Christian IS. No matter where he goes to preschool next year, he WILL be ok. I just need to breathe, deal with things that I really have no control over, and take a step back. This IEP really is just a changing of the guard. As long as he receives itinerant services in the form of perhaps 4x monthly visits to a Teacher of the Deaf, we'll be fine. I need to just focus on Christian and what he needs to succeed.

This Warrior Mom Needs Some Red Wine, Stat!

We're less than 2 weeks from our IEP meeting with our county school system, and I am completely overwhelmed, stressed, nervous, and panicked. I've been so anxious and stressed that I find myself laying in bed at night trying to go over all the possible situations that we're going to encounter. I can't sleep, because my brain just won't turn off. I'm constantly trying to think of different avenues that we can take, different letters I can write, and different ways that we can spin Christian's test scores. I've spent more hours than I can count researching special education laws. I won't even get into how much time I've spent researching possible other placements for Christian for next year in the event that we can't go back to his current school.

We are in such a tricky spot. Because of Christian's test scores, he is pretty much placing out of the services that we know he needs. There is a very real possibility of us not returning to the River School (where is that bag of money that we've been looking for), andChristian may be attending a community based preschool next year. While it is our goal to put him in a mainstream environment, the reality is our little boy's hearing age is just 18 months old. Christian has been in an environment where he receives a listening check every morning at school (of course we do it at home as well) with teachers who have a special interest and focus in oral deaf education. He has access to a SLP the entire morning he is in school, providing him with both the pre-teaching and prompting that he needs. His classroom is acoustically fit for him, complete with a soundfield. The school has an in-house audiologist who IS A TRAINED COCHLEAR IMPLANT AUDIOLOGIST who can do mappings, troubleshoot problems, and do routine audiological checks. The program is language and literacy based--which is an essential component in Christian's educational success. Deaf children have an extremely hard time with literacy. Ask any parent of a D/HOH kiddo, and we can all quote the Marschark study that showed deaf high schoolers graduate with a reading level of 4th grade. THAT IS TERRIFYING.
*Note--Please see this interview with Marschark at Hands & Voices to get a bit more background*

I feel as if Christian is being penalized for all of his hard work and all of the intervention and resources that we have basically immersed him in since his diagnosis at 9 months old. I firmly believe that there is a major disconnect in our school system on how to properly educate and intervene with a Cochlear Implant child. Christian may be testing almost an entire 2 years above his age, but he STILL has a profound hearing loss. He STILL needs an intense amount of auditory training. He STILL needs the support of teachers who are familiar with the many nuances of a child with a Cochlear Implant. How can a child who has only been hearing for 18 months be ready to go into a typical preschool with limited to no support? Our parish preschool may have an absolutely wonderful program with caring teachers, but they have NEVER educated a child with a Cochlear Implant.

Our family goal has always been to have Christian in our neighborhood elementary school or parish elementary school by Kindergarten. We view his preschool years as THE MOST IMPORTANT YEARS OF HIS LIFE in regards to his hearing loss. The foundation that we build for him now will carry him through his academic career.

This is by far, the hardest struggle in our journey with Christian. My amazing little boy who speaks better and clearer than many of his typically hearing classmates is still deaf. He didn't just wake up one morning and start to talk. It's the result of intensive auditory training and intervention over the past 18 months since he's been implanted. My son is speaking the way he is because he has spent more time in therapy than on the playground. My son is speaking the way he is because we have sacrificed tremendously to send him to the best oral/deaf program that we could find. My son is speaking the way he is because he is bright and because he WANTS to. I have to find a way to keep him on the path that he is on. I have to find a way to continue to maximize this short window of language acquisition. I have to fight.

Never Ceases to Amaze Me...

We had an IEP review meeting today and also reviewed Christian's Speech Language Evaluation this year. All I can say is WOW! I'll put the full review of the tests below for all the folks who are interested. In a nutshell, my deaf son, who has technically only been hearing for 1 year and 5 months is testing an entire year over his chronological age (he is pushing 3, and he is testing at the 3 years, 8 month level). Our IEP meeting at Christian's school was painless, as we continue to maximize Christian's successes and help him advocate for himself in situations where he can't hear that great (Reminding him to speak-up and let folks know to "Please say it again" and "What did you say? I can't hear you"), and continuing to develop his language.

Christian never ceases to amaze me. How he keeps up with all his challenges, let alone exceeds age appropriate expectations is a marvel. This is the boy that I was afraid would never speak. And now look at him! My sweet boy. My hard worker. My guy who defies the odds. My superstar. My love. And my hero. Christian, you make us SO proud.


TESTING REVIEW

5 tests were administered, and I'll go into more detail on some rather than others.

1. Reynell Developmental Language Scales (RDLS)
2. Peabody Picture Vocabulary Test-PPVT (Form A)
3. Kaufman Speech Praxis Test-KSPT
4. Oral Motor Evaluation
5. Classroom Language Sample

The RDLS evaluates Christian's verbal comprehension and expressive language development. He received a standard score of 121 (verbal comprehension) and 110 (expressive language). These scores reflect above average receptive skills and expressive skills. His scores indicate an approximate 5 month developmental advance over his current chronological age (2 years, 7 months).

Peabody Picture Vocabulary Test (PPVT-4) assesses a child's receptive vocabulary at the single word level. Christian received a standard score of 122, which again indicates above average receptive vocabulary skills. He was in the 93rd percentile, meaning he scored as well or better than ninety-three percent of his peers. The age equivalent was found to be one year ahead of his chronological age.

The Kaufman Speech Praxis Test assessed Christian's ability to motor plan and execute speech sounds. Part 1 examined oral movement, which is tested in the average range. Part 2 tested the simple phonemic/syllabic level (producing vowels and consonans in isolation as well as in monosyllables, repetitive sullables, and bi-syllabics. He received a standard score of 98, which indicates average skills. Part 3 of the test had Christian produce complez phonemic productions in different parts of a word, as well as words with increased syllable and complexity. He received a standard score of 95, which indicates sound production skills in the average range. Part 4 measured Christian's spontaneous speech skills. His score of five indicates increased intelligibility skills.

This test really helped us ID some of the articulation issues that he has, including the initial /v/ deletion, substitutions of initial /b/ for /f/, /v/ for /b/, /f/ for devoice /th/, and /w/ for l.

The Classroom Language Sample included a sample of 100 consecutive speech productions in the classroom during choice time play activies, over two twenty minute time frames. During the sample, Christian communicated with both his teachers and peers. The language sample examined his voice, fluency, imitation, pragmatics, syntax, and mean length of utterance. He is doing well in all areas, exploring appropriate grammatical structures, improving his use of subject-verb-object word orders, as well as the use of pronouns. Most impressively, Christian's Mean Length of Utterance of 3.71, which corresponds to children approximately 40 months of age (which is 9 months above his chronological age).

ISO: Crystal Ball

One thing I'm learning about our journey to next year's preschool placement is that it is dependent on so many different variables. I feel like we are caught in the middle of two worlds and I am struggling to understand what exactly is the best place for Christian. This whole process has also brought me back to the reality that Christian is indeed deaf, and despite his amazing progress and language skills, his disability has the very real possibility to impact him academically, socially, and emotionally.

Our family goal has always been for Christian to start his Kindergarten year at our neighborhood school. I've always looked at this goal, and then decided to work backwards and take the steps that I would need to get there. Every decision that we have made as a family regarding Christian's hearing loss has had this goal in mind. All of these decisions have been crystal clear and easy to make, from our decision to implant, our family communication strategy, and of course placing Christian in the program at the school he currently attends. Now, this decision for next year's placement is my greatest unknown. We have been in this protected bubble while attending Christian's current school. While a mainstream environment with typically hearing children making up 85% of the school's population, Christian has also had access to an audiologist on-site, SLPs in the classroom, and of course being in an academic environment that focuses on language and literacy. Knowing that we are not going back next year is terrifying to me. What will we do?

I have a list of about 5 neighborhood preschool programs in our area that we will visit and look into. 3 are parish based schools, one is a private learning center, and the other is an outdoor based program. The only thing they all have in common is that they are MUCH less expensive than our current placement. Some are co-ops, some are not. Some are play based, some are more academic. Some have great facilities, but so-so teachers, and others have fabulous teachers, but horrible facilities. As far as I know, Christian will be the only child with hearing loss in any of these programs. He will not have access to SLPs. There is no audiological support. Some of these classrooms have HORRIBLE acoustics.

Then, there is the county preschool option. Which, I am not excited about, nor do I think it is a good fit for Christian...as of now. I want Christian to be educated with his typically hearing peers, and the county program segregates the hearing loss children into their own preschool classes. While different modalities are taught in different classes (oral kids in one group, TC in another, Cued in another, ASL....), these kids don't even get to interact with hearing children during recess. The last thing I want is Christian ONLY with kids with hearing loss. However, I know that the teachers in the classroom are experts in hearing loss, and that Christian will have access to SLPs in that school. The county audiologist is housed in that building.

And in the middle of all of this, we are going through putting together our IEP with our county. Should we decide to not attend the DHOH preschool, at the minimum, we will receive an itinerant teacher....we hope. What this teacher can and cannot do is a mystery to us.

I wish I knew exactly what program would be the best fit for my little guy. He IS a super star. He HAS defied all the odds and his progress is amazing. We need to place him in a program that fits his needs and will help him succeed. I just don't know what the answer to that is. Yet.

IEP Update

We had our IEP review yesterday with Christian's school, and I couldn't be more pleased with his progress. Christian has met all of his goals from the last review, and new goals have been set to further his success and progress. I won't go into too much detail (however if you would like to see a copy of his goals, let me know), but here is a snipet of what we are going to work on:

Pragmatic Behaviors-
-Independently produce self-advocacy phrases when verbal information is not understood in 4/5 opportunities (e.g. "I don't understand," "Tell me again,", "Say it louder").

-Will use clarification strategies including rephrasing and restating what he has said when he is misunderstood by teachers and peers in 4/5 opportunities.

Auditory Skills-
Repeat 5-6 word sentences, verbatim, in 4/5 opportunities

Language Comprehension and Use/Receptive Language-
-Answer simple why questions with 80% accuracy
-Name the correct for a group of similar items in 4/5 opportunities
-Name at least 3 similar items when a category is named by the teacher in 4/5 opportunities.

Expressive Language-
-Continued use of 5-7 word combinations to comment, request, and protest in 80% of opportunities
-Use possessive pronouns and the possessive ending "s" in 4/5 opportunities

Speech Production
-Produce all age appropriate speech sounds consistently in all positions of words at word and phrase level with 80% accuracy

Literacy Skills
-Produce Mouth Time sounds when presented with a verbal cue (this program is unique to Christian's school)
-Answer yes/no and wh-questions about books by verbally responding with 80% accuracy

We went over Christian's testing again, and learned that not only is he testing at and above age level for expressive and receptive language, his speech production is exactly on track and where it should be for a TYPICALLY hearing child. We were told that while he is 1 of 2 children with a hearing loss in the class, Christian is constantly the LANGUAGE MODEL for the typically hearing children. Of course we're happy about that, but one of the main reasons we send Christian to this private school is so he can benefit from typically hearing peers that are HIS language models. We brought that up and asked about his placement for the next academic year, and we were told that he has been bumped up into a class with kids that are a bit older than him.

Christian's teachers went on and on about how is just using new vocabulary every day and is a joy to have in class. He's an imaginative kid, who is starting to show his recall, talking about things that happened in the past, or things that he expects to happen. He's extremely social, and in their words "Loves playing with his friends".

I have NO doubt in my mind that much of this progress is because of the model that his school provides. Have an SLP in the classroom with him full-time, plus a Master's Level Educator has given him the attention that he needs. I also know that our commitment at home to constantly providing language opportunities has helped him take-off and fly. I can't wait to see how he does this August when is attending 5 days a week. I'm excited to share these goals with his county teacher, and incorporate them into his county IEP.

Speech and Language Evaluation--Calling all Been There/Done That Mommas! I have a question for you!

Ok, so we just got Christian's narrative report back from him his school. We're very pleased with his scores:

PLS-4 Total Language Score is 110, functioning in the 75th percentile rank. Age equivalent of 2 years, 6 months
Expressive One-Word Vocab Test-Raw Score is 24, Standard is 101, 53rd Percentile Rank, Age equivalent of 2 years, 2 months
Receptive One-Word Vocab Test-Raw Score is 24, Standard is 101, 53rd Percentile Rank, Age equivalent of 2 years, 2 months
Goldman Fristoe Test of Articulation-Raw Score is 41, Standard is 100, 60th Percentile Rank, Age Equivalent of 2 years, 4 months

And I quote from the Speech and Language Diagnosis:

"Christian presents a severe bilateral sensorineural hearing loss. At the present time, his speech and language skills were found to be within normal limits".

I knew that, but I love to see it in writing. I love knowing that in all of these tests, my Deaf kid is STILL testing at and above age level.

His Expressive and Receptive One Word Vocab Test scores worry me. I know our big challenge areas use of objects, pronouns, and sometimes negation. Our BIG challenge is the repetition of "Wh" questions.

So, for all of you amazing Moms out there who have been through this, help me figure out how to help him with these areas. What do you do at home? The SLPs at his school are going to give me homework, but I know from experience that there are some pretty innovative readers of my blog, and I want to tap into my resources here :)

IEP Update

I guess if I had to describe the process at Christian's school in two words, they would be BLOWN AWAY.

After hearing the horror stories that other parents have shared, I was ready for the worst. But Christian's school and his teachers made our first IEP meeting easy, and actually enjoyable.

We met with his two classroom teachers (his educator and his SLP that is in the classroom with him full-time), as well as the Director of Speech and Language services at the school. They armed us with information prior to the meeting, including a whole narrative on his progress and a speech and language profile. They reviewed his PLS-4 testing results with us, which showed he was at and above his peer (hearing peers mind you!) level, along with their observations, and recommendations. Every single thing about this school amazes me. And I can't wait to see how Christian continues to progress and grow there!

First IEP Meeting Tomorrow...

I know I should be stressed out about this, but my friend Michelle (who is my guru at Christian's school) told me to not sweat it. She's been around the block a couple of times, and I totally trust her judgement.

I'm not really too nervous about the process. In addition to the fact that Christian goes to a school that is one of the best oral/deaf programs in the nation, it's also equipped to handle any and all of the modifications that we ever could need (one of the reasons we pay the big bucks to go there). The teachers are all Master level and above educated, they have an entire audiology suite for the D/HOH kids, and they have a very close relationship with our implant center. It's safe to say that they are the leading resource on educating CI kids.

I received the school's proposed goals last week, and they are exactly on point with all of the research that I did. I guess I should look at this meeting as a dry-run to dealing with public school in a few short years, where I know I'll have some challenges. I'm just thanking my lucky stars that we're able to swing going to this fabulous school. And of course, my husband for working more hours than it's known to man so we can sorta afford the tuition.