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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.

6 comments:

MB said...

If they do any further evaluations, just turn off his implants, or don't even put them on.

I am not joking!! Do it.

PinkLAM said...

After reading this post, even I am frustrated! It makes you want to pull your hair out! It isn't right that the people making these decisions know absolutely nothing about hearing loss. Good luck at the next meeting, and as much as I hate to say it, hope Drew doesn't do too well at the next testing. (and maybe you should follow MB's advice..) These people drive me insane!

Heather said...

In my process with Implants and all the handouts I came across your blog and also added you to facebook. After reading your process with IEP I was really expecting ours to go much worst but it went okay. Of course it wasn't for my son getting implants it was for my son who is speech delayed. I too would do the same and not put his implants on. It is hard for me to understand the ignorance of some people but as I have advocated for my own son have come across it more times then I can count. Our journey is only beginning. Good Luck try not to pull out all your hair:)

Mandie said...

Wow. I am so sorry you have to deal with all that. My HOH kids are 2 and 3yrs old, and I'm not looking forward to the battles ahead.

By the way, I found your blog through Cochlear kids. Hope you don't mind.

Jamie said...

Those "educators" just don't seem to get it! Deaf kids with implants are still deaf kids. Battery goes dead, what have you got? A deaf kid. Even with an implant on, the kid's hearing is not going to be exactly the same as a hearing kid's.

Keep up your good fight, you've gotta get services for Drew one way or another. What about a "504" which is what kids who don't qualify for an IEP but still need services, get?

I don't know how good the advice to turn off/remove his implants for testing is, but if that is what it takes to get him the services needed, do it.

Ensure an accessible future on the Internet for Drew - support HR 3101 and join Caption Action 2 on Facebook at http://www.causes.com/captionaction2.

Penelope said...

wow, I am stunned. As a teacher for deaf & hoh children, it is imperative to get him services. I have had 2yr old students whom I serviced in the home, but the school district still paid for it. Is it possible to request that a licensed teacher for deaf & hoh kids be at your meeting to give this team an in-service so they can fully understand the implications of his loss, and the function of the implants? He will need to have a teacher of the deaf who comes to the school on top of speech, even if he is in a special program. There needs to be SOMEONE who understands what his needs are! Perhaps the educational consultant from the place where your son rcv'd his CI's? I'm so sorry for this undue frustration, and I can only imagine the grief you are feeling as you mourn the death of this idealistic vision you had of your community. I will keep reading to see how things turn out, and praying that for your son's sake they do the right thing!!