Advocating for a child with a hearing loss.....
March 14, 2014 8:10 AM   Subscribe

Need advice and tips about being the best advocate for my hearing impaired son at his upcoming SST...

My son is finishing up his first grade year at a very good, high performing public school. He has a moderate hearing loss in his right ear due to a dissolved ear drum and a subsequent grafting surgery that failed to restore his hearing. He was fitted with a hearing aid last summer before school started and has adjusted well and done beautifully but the school has refused to conduct an SST (student support team) meeting or issue a 504 plan because he is performing above grade level. He is a great student, a whiz in math and excels in everything EXCEPT phonics and spelling... which I believe is due to his deficit. I have been trying since before school began to arrange a SST meeting to get him on the radar and start the process which, by law, he is eligible for because of the nature of his loss, but the school has refused (side note...this school is NOTORIOUS for not wanting to accommodate children who have disabilities until they begin to fail or show significant issues). I have been very frustrated but trying to play nice until I recently read an article talking about how young children (K and 1st grade) will often do fine because the teacher is more patient and accommodating in the classroom but they will begin to have problems as they get older and the pace gets faster. His current teacher is wonderful and I can see this scenario possibly being in our future so I emailed the pertinent people and insisted on calling an SST, including a copy of the article that I read. Well, I finally got their attention, we have one scheduled for next Wednesday. I'm not looking for special treatment or for any big changes at this point.... I just want a 504 plan for his medical device in place and the process started so that if we have problems down the road, the first few miles have been traveled so that it doesn't take so long to get him any help that he may need.

I have his medical records....his pediatrician and his ENT have both signed off on his loss and that is is eligible to at least have a 504 plan in place and possibly an IEP implemented. I'm familiar with the ADA laws and generally familiar with the process....I was a music teacher before I had kids and had to attend many of the meetings when children with various issues were mainstreamed into my classroom but that was over 15 years ago and I'm rusty on current practices...and the fact that it's my baby boy is making me naturally want to be completely current on the process and current practices... Any tips or advice from anyone more up to date on advocating for a child who is not deaf but hard of hearing. Any resources about how HoH kids need extra support with phonics and spelling would be very helpful as well.....I have found some good ones but I want to be sure that I'm fully educated since that is the area in which he struggles. This is in the US, Georgia. Heading out to run errands....will not thread sit but will be watching from my phone to answer any questions if I can.

Thanks friends..
posted by pearlybob to Education (9 answers total) 2 users marked this as a favorite
Best answer: Take it to the district. Escalate, and nag. Contact local non-profits/agencies that can help and ask what they suggest.

Go down to the school, make an appointment with your principal, and INSIST.

Call and ask to speak with your school's inclusion advisor, he/she should be able to help.

Squeak early, squeak often.

This is your right and your child's right, do not let them put you off.

Threaten a law suit. I am serious.
posted by Ruthless Bunny at 8:26 AM on March 14, 2014

Best answer: I am also in Georgia, and I was finally successful in getting a 504 (for ADHD) in place for my son. The same sort of roadblocks were put in place for us. Because he was performing at a acceptable level, we could not get any testing done, or accommodations even considered.

I finally got lucky with a new vice principal at the beginning of the year. This woman was not in charge of my son's grade, but I truly believe had I not talked to her I would still be fighting.

What helped our case was the outside evaluations, knowledge of the law, and mention of having spoken to an education lawyer in Atlanta.

The best advice I have seen, and what would have been my next step, is to put all requests in writing and deliver by certified mail. All email should be copied to the district person in charge of accessibility.

Just keep trying, it took me from the beginning of Kindergarten to halfway through Second Grade to get it done for him. I can send you the name of that lawyer if you want it. She works exclusively on 504 plans and IEPs all over Georgia.
posted by Talia Devane at 8:37 AM on March 14, 2014 [2 favorites]

Best answer: You can also look at Wrightslaw which provides information about special education and education law. The site provides an overview of the IEP and 504 process but also has some specific information about students with hearing impairments. For instance, it links to a website that lists some possible accommodations such as preferential seating, captions on films, interpreters, tutors, notetakers, and acoustical adaptations.

If you're not successful at the school or district level, you could also consider filing a complaint with the U.S. Department of Education's Office for Civil Rights.
posted by statsgirl at 8:54 AM on March 14, 2014 [1 favorite]

Best answer: Absolutely push. Push now while you have supportive teachers and time to push, because these things take so much time to organise and you are saving your kid lost years at school. He's performing above grade, but the question you need to keep in mind is "Is he performing to HIS potential?" A kid getting all Cs and Ds may be doing really well because that's as good as they can do, but a bright kid getting As and Bs may be doing badly because they're putting in minimal effort. Consider getting him evaluated externally so you know what his overall abilities are. I have a kid with moderate-severe dyslexia who is getting Cs to Bs, and we are mostly very happy because his evaluation shows that he's performing at his best given that in those subjects. When my other kid gets those grades, he gets made to study much harder because he could do better.
posted by viggorlijah at 7:10 PM on March 14, 2014

Best answer: I work in special education in California, so I'm not familiar with Georgia education law, but if you have the means, I highly recommend getting a lawyer or an advocate. For one thing, it will help your sanity to have an experienced fighter on your team, and for another, many school districts will give you whatever you're asking for if they're afraid that they'll have to fight you in court. School districts, at least in California, cannot afford to spend tens of thousands of dollars in legal fees and will usually offer parents a settlement consisting of the requested services.

You almost certainly won't have to go to court, mind you. But I have seen many school districts change their tune when they realize that a particular family will not be pushed around. Check with an education lawyer in your area to see if they might be able to help.

Best wishes to your little guy.
posted by corey flood at 8:13 PM on March 14, 2014

Best answer: Get a special education advocate.

A quick Google search for Georgia brings up some really good resources. I think if you've been pushing on your own with no response, then you need someone else to push with you.

But don't stop pushing. Your son is entitled to an SST.
posted by zizzle at 6:44 AM on March 15, 2014

Best answer: I'm in my mid-20s and Deaf, but my hearing loss was gradual. I was very much in your son's shoes as a kid - the kid who "seemed fine" with a hearing aid, performed above grade level, was socially successful (you don't mention that side of your son, but it's part of the picture).

I was lucky in that my school system was perfectly willing to work with my parents in setting up an IEP (a 504 was not appropriate because of some other disabilities that were in the picture). And that was really important - it's not just about teachers being accommodating at that age, or about the possibility of future increased hearing loss; it's about the fact that there's a lot your son may be missing due to his hearing loss, that isn't apparent from the outside. So good on you for being proactive about this.

I can't speak to spelling and phonics in particular, but preferential seating is incredibly helpful, both for decreased background noise and for better visual access. I also used an FM system (where the teacher wears a clip-on microphone that transmits to your hearing aid), but that may be overkill in your son's case. That would be something your son's ENT and audiologist would be in a position to talk about; if they decide it is necessary, then the responsibility for providing one lies with the school.

One last note, and you may already know this: I saw a number of my peers who needed accommodations denied them for performing above grade level. It sucked, and it really prevented them from reaching their full academic potential, IMO. It is also illegal - the ability to compensate does not mean that your son does not have the right to accommodations for his disability, not if it prevents him from reaching his full potential.
posted by spaceman_spiff at 11:56 AM on March 15, 2014

Response by poster: These answers are all wonderful so far.... I'm going to research and looking into getting an advocate or a lawyer on Monday.....might as well, that is what other parents have done to get ANY traction with this system....

As far as the social aspect goes, he is fine, funny, gregarious, lots of friends....quick with a hug and also quick to do a little dance or tell a joke to make the class laugh. His personality was actuality pointed out to me as a REASON why (along with his grades) he didn't need accommodations... The quote was along the lines of..."kids with his personality do fine with no additional help...." Needless to say, I saw red and quickly corrected this person.

I really appreciate the encouragement so far...I'll be on the phone on Monday and please do memail me if you have any Atlanta names you can recommend. My daughter had a similar issue with great achievement but a diagnosed problem with muscle tone and executive functioning was recommended that she have a 504 for keyboarding and extra time on tests. My SST with her went very poorly, the school would not help her until she showed signs of failure, I didn't push hard enough (hence I feel like they are rolling their eyes thinking "here comes THAT WOMAN again") and so I pulled my girl out and now she is thriving in a home schooled situation with plans to apply to a few very good private schools. I have that option with my son as well but I'd like to keep him where he is for now for a few different long as they will meet his needs.
posted by pearlybob at 6:00 PM on March 15, 2014

Best answer: First off -- good on you for noticing, caring and following up. This is the kind of stuff that slips through the cracks so easily and causes so many problems later in life.

I don't have much in the way of theory to offer. Just tips from my experiences growing up as a deaf student advocating for myself and my equipment. Take as benefits you -- discard what's not relevant.

You are squeezing blood from a stone. The stone isn't money. When they care, they will find money. The stone is their attention. I find it's best to keep it very simple and very short and formulaic. (This comment isn't any of those things. Sorry.)

Know what you want. Before you even walk in. Know what you're going to ask for. Do you want the hearing aid? Do you want preferential seating (which spaceman_spiff is right, it does help a LOT)? Do you want extra time? Know that before you walk in. I find it's helpful to make a list of things and take it into the meeting with me. Not to necessarily show them, but to ground yourself. These kind of meetings can be intimidating and it's easy to be steered off course. So, have your list of simple, concrete things that you want, and keep it close to refer to when you're feeling shaky. There's usually a moment or two during these meetings where I feel like giving in, or conceding. Being able to look at the extremely reasonable list of the actual accommodations that I want helps me steel my spine and not cede the things I need.

For dealing with teachers and specialty situations and explaining what's actually involved in a way that will make sense to them, have a copy of your son's most recent unaided audiogram. Some audiograms, especially a child's, will be labelled with the speech banana already. If not, find or print out a poster of the speech banana on an audiogram -- make sure it's labelled with the various sounds of speech.

A lot of people don't know this stuff at all. Not even a little. They don't think about it. They probably know about decibels and that too many is bad for you, but not what they really mean or why decibels are relevant, and I only had to explain the logarithmic scale of decibels exactly once in my life. I don't find there's much point explaining decibels -- you just need the rough idea and most people already have that by osmosis.

Anyway, if this school is already known to be hostile they will probably question you in ways that come off concerned but are actually kind of aggressively ignorant. Like, is that really necessary, he's doing so well, so on and so forth. This is the point in the exercise where I assume good faith for a couple minutes and show them the poster, and explain the speech banana ("these are the sounds of speech") and show the audiogram ("this is my son's hearing in X ear"). Lay them down side by side and explain what your son's line means for his hearing. The poster is sort of a cheat sheet for reading your son's audiogram. You don't need them to know how to read it, just grasp the general idea.

Be specific about what the charted line means in terms of what he does and doesn't naturally hear out of that ear. It's best to use the unaided audiogram for that part so it's clearer. Aided audiograms muddy the waters a little and introduce questions like "he technically hears it, though?" which you don't need if they're already hostile.

Because your son's difficulty is so specific to phonics and spelling, I'm guessing that his hearing dips most around 2000-4000 Hz, but most especially 3000-4000 Hz. A moderate loss is still more than enough to cut off that bit of the banana altogether.

Those sh, k (k as in king and kitsch, not the hard clicky k like in knick-knacks), f, s and th sounds are pretty crucial to being able to pass spelling tests and learn through phonics in general. They're most prefixes and suffixes. Not all of them, but they end up in the same general area. So if your son is anything like me he likely hears and learns what the base word is, but has trouble with plurals and ed/es tion/ting suffix confusion. Hence phonics and spelling problems.

So, medical device. One of the things they'll want to know is how much work they'll have to put in to take care of the hearing aid. Make sure it doesn't go missing, how securely is it actually attached to your son's head, that kind of thing. Hearing aids these days are tiny little things and generally built to look frighteningly expensive. If your son knows how to take care of it himself and maybe just needs a reminder if he seems like he's having more difficulty than usual, say so. If it needs daily maintenance that can be done at home, say so.

One of the other things they'll want to know is how effective the hearing aid is. What difference does it make? At no point do you whip out the aided audiogram without being asked for it directly, let me be clear. What your son can hear with the aid is different from what he can comprehend with it. It's an aid, not a replacement, but don't expect them to grasp that on short notice. Pulling out the aided audiogram without being specifically asked for the aided audiogram will work against you.

What I do whip out at this point in this sequence are the letters supporting the need for the device and the meeting to begin with. Audiologist letters, ENT letters, so on and so forth.

Sometimes in these discussions with staff they prefer I start with the letters and finish with discussing the hearing aid itself. Sometimes they prefer I start with discussing the hearing aids and end with the letters. I let them guide that. The important part is that you don't start with everything at once, and that you absolutely establish the idea of the speech banana and the physical, visualised-on-the-audiogram need for aids at some point in the sequence. So in this particular sequence I've laid out, I've started with the audiogram, the aids, and then the letters, the material evidence, the doctorly stuff that says I am not a lying liar. (For most people audiologists don't seem to count as specialised doctors, so your additional letters are a good idea.)

For a hostile meeting, I sometimes would recommend starting with one letter, like from the ENT, and keeping the others in reserve until after you've discussed the audiogram and the hearing aids. It can come off like you've got lots of backup, it can come off like you're treating them like children. You'll need to kind of gauge their mood through all this.

From that point, there's usually more specific questions. Some will still be aggressively ignorant. Elaborate as needed on what you've already established: the meaning of your son's audiogram when it comes to learning language, the benefit of the hearing aid, the written evidence, your son's medical reasons. Lean on the benefit of the aid as much as possible. The phrase "melted eardrum" is going to help you here -- make sure you say that. People will vaguely know what eardrums are and the impact of that without you having to explain in surgical detail. (Feel free to explain when they ask. The truth is your friend here.) They most likely will ask "since when", as there's kind of a public perception that hearing losses at later dates are less severe or less difficult to deal with than losses from birth. Answer that honestly and keep leaning on the hearing aid. You want to prove the validity of the medical device. It doesn't matter when his audiogram started to look like that -- it matters that it does look like that, and it does affect these things.

One of the other things they will ask about is social stuff. Social interactions, social ease, that kind of thing. Either to gotcha you into admitting that maaaaaybe they don't have to do aaaaanything after all, or because they're actually concerned, or both. I've run into people who have done both simultaneously. It's an odd experience.

Having the audiograms and the letters can be helpful with this question, but this is a place where the strength of your convictions will matter a lot. You know the article you emailed them? Take that with you. Talk about that at this point, when they ask about social things like it's a reason not to accommodate him. Talk about how it is a reason TO accommodate. Talk about your concerns for the future, how it's best to establish good habits now. Talk about the concern that he might become disruptive because he feels has to clown and joke to cover up all the many many many things he misses. (Which I've seen happen, a lot. It's one of the common reactions to missing things, especially in gregarious boys, and once it's been established as the only appropriate response to uncertainty about what's been said to him, it's hard as hell to correct.)

Talk about how well you want him to do in their school. Why do you want him in that school? Because you think it would be good for him. They've been good for him so far -- you want to make sure it stays that way. You want to work with them to teach your son. So on and so forth. Your approach can vary here, but in general treating it like "I want to work with you, will you work with me on these accommodations as much as I'm working with you here" can go far. Talk about the very specific concrete accommodations that you want. To be allowed to wear his aid. Preferential seating. To be allowed to wear an FM in the future as classes become more complex and it's more necessary that he compensate technologically for the physical fact of his audiogram. So on. Talk about how he might be fine socially at the moment, but you want him to do well academically as well and continue to do well socially. You want him to be able to read and write at grade level. Ensure you aren't talking about anything nebulous -- they hate that. Talk about your list of concrete, immediate, usually pretty tiny accommodations (in the overall scheme of things). Talk about what they can do to help your son help himself to be a good student in their school.

Though I don't think you can get the in-person assistance of a special education advocate on this short notice, I think you could more than likely speak to one on the phone about how the meeting is structured. What I've said is pretty general. They will most likely have more specific examples, and also, crucially, you can ask them about other students in the city that have done well with this kind of accommodation and how they handled their meetings. You won't get specific details, of course, but the advice will be more precise.

That's all I can think of for now. Good luck! You can do this. I believe you can, and if you need anything, feel free to memail me. :)
posted by E. Whitehall at 6:48 PM on March 15, 2014 [2 favorites]

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