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


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


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.