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.

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.

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.

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.