A Day in the Life of
Hands & Voices
Sometimes it’s an easy question, sometimes it’s a hard question. Sometimes it’s a question within a question. The toll free hotline that rings into Hand & Voices offices, as well as a “contact us” prompt on our website, bring many parents (and professionals) to us with questions or concerns about their children (and students) who are deaf or hard of hearing. More often than not, it’s a parent who needs someone to talk to who has “been there, done that.” We’re always happy to comply, and we draw on a large network of H&V parents and professional colleagues who share their expertise and experience generously. Here’s look at just a smattering of exchanges that touch on typical themes (names have been changed whenever necessary). The questions and issues come up so often, and the exchanges are often so heartfelt, that we thought they’d be worth sharing. We’d also love to hear from you on the FAQs (frequently asked questions) that come up in your chapter, and how you’ve helped families. Send them to firstname.lastname@example.org
Q: Hi, our son is one month old. We took him in for an OAE this week because he wasn't startling (or even looking around in curiosity) to loud noises or responding to our voices. The doctor was great but the long and the short of it was Jack failed and will be getting an ABR next Monday morning to quantify how much or how little he hears. I found www.babyhearing.org at 2 am that night and it listed handsandvoices.org where I found GBYS. This is all so new to me I don't really have any questions, just worries, and I feel a little lost. I personally have no experience with people with hearing loss except the elderly and one middle aged patient I only saw a couple times. Even though it's by the mom of a kid with Down Syndrome, I've found the essay "Welcome to Holland" really helpful. My husband has taken this all pretty calmly, but the thought that Jack can't hear all the mommy-love I'm pouring on him is hard on me. I know he sees me and feels me but it's still hard.
My husband took ASL for his foreign language in college so, strangely enough, we'd already had a long discussion before we were even planning a pregnancy about the decisions we'd have to make if we had a deaf child and all the controversy and ended up just being glad those were decisions we didn't anticipate having to make. Now here we are anticipating making all sorts of decisions. We don't watch TV, but we listen to the radio and read avidly so words and language are important to us and I worry that if Jack can't be a part of that, it will keep him out of a chunk of our lives. Jon started college as a music major and our home is strewn with musical instruments. Also, my family is big on music and we sit around and sing together for fun. I haven't been able to sing to Jack since we realized he couldn't hear us a couple weeks ago because I start crying and can't keep singing. I really don't want Jack to miss out on all that. We'd always planned on homeschooling our kids--now I wonder if that would be the best or not. At the same time, my mom, sisters, and Jon have all taken ASL and I know I can learn. I know hearing aids and cochlear implants are possibilities depending on how profound his hearing loss is. I guess at this point I just want someone to talk to who has been there before. I'm a little overwhelmed by all the lingo and laws and resources. Dr. S has already said that regardless of the results, we'll be referred to Children's and I'm sure they'll be helpful, but there's just so much!
We haven't told our families yet because they tend to be a little over-enthusiastic about advice so we are waiting to tell people until next weekend when we can hopefully have the results of the ABR and have come up with a SOCO (single overriding communication objective—it’s how we've learned to deal with advice—we script our response ahead of time to be appreciative but non-committal until we can explore our options ourselves). Sorry this is a little jumpy. My thoughts are all over the place and I'm typing with one hand while nursing Jack.
I'm so glad Hands & Voices exists and so grateful to all the parents who are involved!
Renee (and Jon and Jack)
H&V: Hi Renee! I can totally relate to everything you said, especially the singing. I want to give you some hope first off! I am here to tell you on the other side of the diagnosis and with a now 11 year old deaf child, our kids can surprise us on every front. She loves music and sings along with the Sound of Music captions on a DVD, keeps up with the kids in the dance unit for gym class (remember that as a kid?) and uses language well. She has taken lessons in several instruments... and I know other deaf/hard of hearing kids who are quite talented in music. For some it seems to be due to their high tech amplification, but even a few who don't wear aids or implants at all or as carefully as my daughter likes to wear them... find great joy in music. (We do print out the words - the internet is an amazing tool.)
It took a ton of work on all our parts to get to where we are now - she's at or above grade level in all areas. There are lots of parents who have walked this road before, and some dedicated professionals to help us as well. Good for you to be so tuned into whether he was responding and to take such action so quickly. Early identification is so important. You already know to catch his eye before you try communicating, and that's half the battle =) I had to remind myself that Maddie was the same baby after the diagnosis as before - after I just had a much better idea (growing idea) how to communicate with her.
Did Jack have the newborn hearing screening at birth? Where are you guys from? I can hook you up with a parent to meet with in person if you like. That is so cool that you found us on the "net."
I love your take on dealing with family. That is exactly right—sometimes a "thank you for letting me know that" is enough to stop the barrage of advice from continuing. It was hard for me as a "newly identified mom" of a child who was deaf (she was 14 months when we went for testing) to realize that the usual places I went for support in parenting were not quite the right fit - they didn't know anything about hearing loss.
Renee, I know you are worrying and hoping and worrying and losing sleep. If Jack's testing finds a hearing loss, there are lots of us who will stand with you and Jon as you work out your own family story – and it can still include homeschooling and many of your other dreams. Meanwhile, give that sweet boy a cuddle and a hug to yourself. You sound like great parents to me. Whatever it is, whatever lies ahead - you can meet the challenge! Hugs from near or far - maybe you are on my block! Come on over! – Sara, Colorado H&V
Q: We’re just beginning a grassroots effort to pass hearing aid legislation in our state. Do you have any advice for us? – Tom
H&V: Hi Tom, how are you? I am the Outreach Director for Hands & Voices at the national level, and also the Director of the Colorado chapter, where I served as the CO-Chair of the coalition that passed legislation for hearing aid coverage in 2008 in Colorado. Here is a link to the information about the CO bill. We also have a folder of materials we used to pass legislation here in CO, that I would be happy to share with you, just let me know as you progress... http://www.cohandsandvoices.org/ resources/SB57.html
Let me know how else I can assist, -- Janet, Colorado H&V (Ed. note: Janet is currently - 2014, the Executive Director, H&V)
Q: My son has a hearing loss. Will he be able to play sports? - Dan
H&V: Hi Dan, thanks for contacting Hands & Voices with your question about whether kids who are deaf or hard of hearing (d/hh) can participate fully in sports. First of all, each child and family is so unique that there are a variety of considerations that could come into play in answering this question. For families with children using amplication technology, the issue of whether or not to allow their child to play a contact sport with their cochlear implant or hearing aids must be addressed. This is a personal decision for families who should explore the issue with the input of their child and the advice of professionals who work with them. Many families have decided to allow their children to play sports like football, wrestling, lacrosse, soccer, swimming, gymnastics, etc. You’re very likely to find d/hh children engaged in every sport imaginable. There is rarely anything about hearing loss itself that would limit a child’s participation in sports.
I personally have a 10 year old son who has played football for several years with his hearing aids on. We worked with Riddell, a football helmet manufacturer who customized a helmet where the padding fit nicely around his aids. My son also wrestles and could definitely get by without wearing his aids but he doesn't want to take them off so we have done the same thing with finding a head gear that would fit over them. One other consideration is sweat. To protect their amplification equipment, many kids wear the super seals or something similar. I have known some kids who wear sweat bands or moisture wicking skull caps too. Once again, not a reason not to play a sport, just some considerations to think about.
The last thing I want to mention is personal FM sysems and sports. Many kids who chose to wear their amplification and participate in sports also need the benefit of the personal FM for good access. Coaches can wear the mic so that the kids have good access to what the coach is saying. This is a time where we sometimes need to educate the school personnel for the need of our kids bringing home their FM for access to extra-curricular activities like any other student.
I hope this helps. I have a very active 10 year old son who has never allowed his hearing loss to stand in his way of participating in anything. Please don't hesitate to contact me if you have any other questions. I would be happy to help.
Best regards, -- Lisa, Indiana H&V
Q: We’ve just learned that our daughter has a unilateral hearing loss. Our doctor said that kids with this problem often fall behind and fail a grade in school. We’re really worried. What should we do? - Sally
H&V: That’s pretty pessimistic, but at least I’m relieved that your doctor didn’t tell you not to worry about it at all because your girl has another perfectly good ear. You’d be surprised to learn how many MDs dismiss the issues of unilateral hearing loss entirely—at such a cost to the child. I am here to tell you that your child is not fated to fail a grade or get behind because she has a hearing loss! If you ignore the fact that hearing loss could put her at risk for language delays and gaps in comprehension, she may indeed struggle. But if you make a good effort of educating yourself on what the unique communication access needs are for your child and then apply yourself to getting them met, she can thrive. We have some great contacts for you, so let me know if I can share your inquiry within our H&V network. Plus, Hands & Voices has a new yahoo group for families of children with unilateral hearing loss! These families often have specific questions and challenges that are not necessarily shared by families of children with bilateral hearing loss. This group offers an opportunity for real-time parent to parent support, as well as a safe, comfortable environment for sharing information. Just go to this site and join up: http://health.groups.yahoo.com/
You can also check out these articles on our website for more information:
All the best, -- Teresa, Janet and Leeanne (parents in Vancouver BC, Colorado and Illinois)
Q: Our state is working on a "care coordination plan" to give to parents to put in a binder when they meet their pediatric audiologist. The hope is that it will keep papers in one place and encourage parents to bring it to appointments. Has anybody done something like this they would share with us? - Erin
H&V: WI utilizes our Babies & Hearing Loss Notebook which is filled with lots of great information and resources, and also includes plastic dividers to hold business cards, IFSPs, audiograms, etc. for organization. The updated copy can be found on our www.wesp-dhh.wi.gov website, click on D/HH Outreach in the upper right hand corner, and then follow the link “For Families” then “Parent Notebook.” Good luck, -- Laurie, Wisconsin H&V
Q: I have a profoundly deaf son who is seven yrs old. I am scared that I am not doing all that can be done for him to prepare him for a bright future as a deaf person. I was wondering if I could find someone to talk to or find parents with children who are also deaf. Any help you can give would be greatly appreciated. Thanks for your time, Suzanne
H&V: Thanks for contacting us at Hands & Voices. We're parents of kids who are deaf or hard of hearing, and we all know the feeling you've described very well. My son is now a teenager and I still get scared sometimes. But not as scared as I was when he was seven--I can relate to that feeling very well. Those early years are challenging.
Where do you write to us from? We are glad to connect you with other Hands & Voices families in your area if we can, and we are always available via the internet to network with each other. Talking to someone who's “been there” has been a really important form of support for all of us, so let us know what kinds of questions and concerns you have and we'll keep the dialogue going, ok?
On the topic of "Fear": Doing the best for our kids starts with intention—our best intentions. Then it becomes our responsibility to pave the road ahead of us with more than just good intentions—rather, with a strong foundation of knowledge and information. Diverse input, ideas big and small, workable strategies, plentiful resources, a child-focused agenda, and a lot of love create the map by which we navigate this journey as parents. Our best intentions become realized when we see progress in our kids. Progress that maximizes our child's fullest potential and is on-par with that of typical kids is the destination.
True progress takes into account the whole child: mind, body and soul. When we are scared that we're not doing enough for him or her, it's usually a cue that we're not on-track with expected progress, and we need more information in order to keep moving towards the destination. To push this metaphor a bit further, we get scared when we're "lost.” Time to lay some more track...pave some more road! Our fear propels us into actions motivated by our high expectations. And so the cycle continues, yes, even until our child is 17 years old and beyond. Fear is a great blessing because it's impossible to ignore for long and it won't go away until it has no further need to exist. Suzanne, I hear you say 'I am scared' and I'm thinking "wise mother."
You can do this. Stay in touch and let us know how we can support you, -- Leeanne, H&V Headquarters
Q: I've heard a lot about the importance of having a critical mass of deaf/HOH students for an effective education program that focuses on communication. What I haven't heard is a number. What number of students makes a critical mass? 25? 50? 100? - Jacqui
H&V: Hello Jacqui, We are not aware of any specific published numbers that define critical mass. The goal of critical mass is to provide a fully accessible communication and learning environment that includes deaf and hard of hearing peers and provides high quality educational programming and support services in a program designed specifically for DHH students. By centralizing these comprehensive specialty services the students benefit from the enhanced expertise and programming of the staff and the school districts involved may realize some cost savings by not duplicating services across schools or school districts. Critical mass occurs by invention at schools for the deaf, charter schools or special day programs, but is also achievable within the general public school setting.
A DHH program should have sufficient students to be able to support the services of an SLP, an audiologist, a psychologist or counselor, a lead interpreter, and a program coordinator - all of who have expertise with this population (these positions would not necessarily need to be full-time). The number of teachers and support personnel obviously would depend on the numbers and the needs of the students. When considering critical mass numbers, think of a typical classroom of 15-20 students where you would find students with a range of skills, backgrounds, and interests. Ideally you want similar diversity reflected among the DHH students. Depending on the program size, this diversity could be achieved at each grade level but more likely requires several grades (preschool, early elementary, upper elementary, middle school, high school). At a minimum, there should be three to four students per grade level (PS-12) or about 50 students in a program (across all grade levels). Schools for the deaf and special schools generally have much higher numbers. Some programs, especially those outside of metropolitan areas, might have as few as 12-15 students across all grade levels. Whether this number is considered critical mass depends on how the students’ classes and activities are configured as well as the resources available to them. In a small rural community, 12-15 students in a DHH program may work very effectively. Co-taught classrooms and/or multi-age grouping (1st-2nd, 3rd-4th) are additional ways to increase the number of DHH students in a specific classroom when numbers are lower.
Thanks for asking such good questions, -- Cheryl DeConde Johnson, EdD, H&V Board of Directors
Q: I’m having trouble dealing with my baby wearing hearing aids. Does any other parent feel like I do?
H&V: Yeah, I remember it was a bit tough at the beginning, putting on the hearing aid. I was totally happy for him to have it to help him hear, but then we were taking him for his first baby photos, and I had very mixed feelings about whether or not to keep the hearing aid on for the picture. I wanted to take it off, but then I also wanted to feel like I was totally accepting of who he was, even with the hearing aid. I had this silent tug of war inside myself for a few seconds (the photographer must have wondered what I was hesitating for). In the end, I left the hearing aid on. I think after that day I did feel more at peace with the whole thing, like I had jumped over some hurdle or something.
H&V: Our 4 months old girl was diagnosed with unilateral moderately severe hearing loss at birth. She was recently fitted with a hearing aid. It's a little hard to judge whether the hearing aid has helped since she is still so young, but we thought every little thing would help. And at the least, she would be used to wearing it for school or other activities in the future. Sometimes it's still sad to see her wearing the hearing aid, but it gets a little better each day. -- Xing
Q: I’m not a parent yet. Rather I'm only 15 soon to be 16 in just a few days. Well I wanted to get help for my dad. He's not the one suffering from hearing loss. I'm the one. Every time I try to use the captions on TV or when I watch a DVD, he goes and yells at me and orders me to turn it off. And it gets worse when I leave it on by accident. That’s just the start. When I'm listening to music with headphones, and I have it on "T" mode, all I can hear is the music. But my dad doesn’t pay attention when I tell him again and again to just tap my shoulder when he wants my attention. Instead he yells at me until he gets so angry he goes right next to my ear and screams as loud as he can. Even though it’s a lot less quiet than it really is, I still feel the bone-shaking anger in it that makes me very sad. Also the same goes for resteraunts. (pardon my spelling) Every time we go somewhere out to eat, he would always chose to sit right in the middle of the resteraunt where I can barely hear what the people at my table are saying because of all the other people around us talking. And just a week or so ago, we went out and I tried to tell him that I cant hear, but that didn’t stop him from picking the spot right in the middle of the resteraunt. And I mean literally it was "IN THE MIDDLE". When I tried to tell him, he just shrugged and said "Ah you can tough it out for tonight." But I've been toughing it out for over 10 years now. I can only hold so much weight on my shoulders for so much time. So I asked my Case Manager at school and she told me to come here at Voices and Hands and see if I can’t get any valuable resources or advice on what I should do about my dad. So I really hope I came to the right place. I’m about to crack underneath all the stress my dad puts on me with this problem.
Ed. Note: Hands & Voices referred this young man to several professional resources and helped him get some counseling support. We also had one of our parent leaders who is a “dad” share his personal insights and support; his reply follows.
H&V: Hello…Thanks for sharing your e-mail so I can reply to you. Feel free to e-mail me anytime you want whether to talk more or to let me know if my responses are unhelpful! You’re fortunate to be willing and able to ask for some advice and support. Few males your age are as ready to ask for help as it seems you are. My impression is that you’re as strong and confident as you are hurting right now, and that those attributes will help you figure out how to work through this challenge.
Before I tell you what thoughts I have, I should tell you just a bit about me so that you can consider the context from which my responses come. This will probably help you evaluate what I have to say, and figure out whether any of it might be relevant to your situation. I’m a 37-year-old male who is a son, a brother, and a father of two girls—five and eight, much younger than you. (It’s my younger daughter who is hard-of-hearing and has trouble in exactly the kind of setting you describe in the restaurant.) I think my experiences as a son and brother are what most inform my responses to your story—after that, I’d say the conversations I’ve had with others about growing up and our relationships with our fathers inform what I have to say. I don’t think that my experience as a father has much to do with it—yet—because of the ages of my daughters. We’re not yet going through the sorts of things you’re going through, or that I’ve been through with my own father. But because I’ve become a parent, I have spent quite a bit of time thinking about parenting and how not to repeat the mistakes of the past.
I also have to say that what follows are just my responses based on my experiences and the experiences of people I’ve known. I’m not going to try to psychoanalyze your father; I’m just going to tell you what I’ve seen and what people I know have said. You’ll have to decide if any of it might apply to your relationship with your father.
The first thing I’d say is just what you may have already figured out: this really is your dad’s problem, and doesn’t stem from any sort of problem that you have. Unfortunately he’s making his own problems difficult for everyone else to deal with, rather than dealing with them himself. Sadly, this is a common—if unproductive, unreflective, and simply immature—response to personal problems. I’ve found that I can’t fix other people’s problems (wow would that be nice—I tried for years and years with my dad). In the end what worked best for me, my brother, and others I’ve talked to is being as clear and politely assertive as possible about what our needs in our relationships with our fathers are, then accepting that if our dads can’t handle that, it’s their problem. My brother, for instance, said that his relationship with our father improved greatly once he simply dropped his expectations for the relationship to zero, then felt grateful for what was positive and completely blew off whatever negatives my dad brought to the relationship. Easier said than done, of course. After years of pain, my brother came to that conclusion when he was 27 years old. And let me tell you, he still struggles and hurts.
I went through a similar process with my dad—I learned to call him on his crap, and if he continued I’d simply let go. By “let go,” I mean that I would disengage by telling him that we could not continue on that topic or in that context. If I had to physically leave the scene, I would. I was 19 when I first started doing that, and by the time I was about 25 he’d figured out how he could act or not act around me. (He still needs occasional reminders, though.)
Of course, you’re sixteen. That makes it so much harder, and in some cases perhaps impossible to disengage from your father the way one can as an adult. But I really believe that what you’re going through right now is brought on in part by the fact that you’re coming of age, you’re gaining independence from your father. Many, many parents—of both genders, but I’m most familiar with how it goes for dads—many parents have extreme difficulty letting go of the control they have over their children when they are young. When a son is old enough and strong enough to tell his father where he needs to sit, too many fathers resent or resist that growth and try to reassert their own control. Usually what happens is that those dads who can’t let go and become over-controlling end up with kids who need to be more rebellious in order to become independent. The end result is the same: kids grow up and become independent of their parents. But the process by which it happens, and the degree of emotional pain involved (for parent and kid alike), varies greatly.
Another dynamic I’ve noticed is that many dads—particularly those who have trouble dealing with their own issues and who have trouble seeing their kids grow up and become independent—many of these dads actually sabotage their kids’ growth and success. I suspect it’s more subconscious than anything and that these dads are just doing what had been done to them by their own fathers—but gosh darnit, it sure seems intentional. That is, when I step back and look at it in my own experience—or when I saw it happening to my brother (I’m seven years older then he is, and had some perspective on what was going on)—I think that it’s pretty much impossible for someone to act that way without understanding what they’re doing. And maybe they do, I don’t know. I’m talking about dads who remind their kids of their failures, or even rub their noses in them. I’m talking about dads who bring up what they see as deficiencies or weaknesses in their kids. I’m talking about dads who put their kids in situations where they cannot possibly succeed, then say, “I told you so.” I’m talking about dads who take pleasure in defeating their sons in games. I’m talking about dads who tell their kids that they’ll never amount to anything. And maybe, just maybe, I’m talking about a dad who insists on sitting in the middle of the restaurant when he knows damn well that his son has trouble communicating in that setting.
In my opinion, these sad situations come from parents who lack self-confidence themselves. Frequently they aren’t confident or satisfied with what they’ve accomplished in life—this is a problem that many people face upon hitting middle age, about the time that many parents are watching their kids grow up. It can be especially acute when a parent sees a kid who has the strength and confidence to do things that the parent has not (yet, at least) been able to accomplish. It’s a scorched-earth sort of policy: these parents seem to feel insecure about their own lack of accomplishment, and it becomes too hard for them to deal with their kids’ accomplishments. They’d rather sabotage their kids than see them take off and fly to places that they haven’t been. It’s like the angry little kid who would rather break a toy than see someone else have it or play with it. It’s just as childish, but more sad and far more painful.
You might have noticed that none of this deals directly with anyone being hard-of-hearing. My personal hunch is that your dad’s issues don’t have anything to do with the part of you that’s hard-of-hearing, it’s just that he finds it convenient to take them out on the part of you that’s hard-of-hearing. I could be wrong on this—some parents have emotional trouble specifically tied to hearing loss, and there could be other reasons that your dad is responding specifically to hearing loss and not to you. You can be the best judge of that.
This whole situation totally sucks. You seem to be handling it in a very mature way, though, and it sounds like your mom understands totally. Perhaps you can talk with her about different ways that the two of you might handle the situation, and perhaps she’ll find ways to support you. If she does, that’s great. Ultimately, though, you have to figure out how you need to support yourself and assert yourself in your relationship with your father. Hopefully he’ll find a way to respond positively. In a worst-case scenario, he responds negatively—but then you know that it’s his issues, not yours, and you’ve become all the stronger for it.
Thanks for sharing. I wish you the best. Don’t hesitate to write me if you want, even if it’s to assert your independence by telling me that I’m full of bunk! – Curt, Minnesota H&V
Q: I found your link on raisingdeafkids.org. Today, we discovered that my six year old son has lost hearing in his right hear. His left ear is normal. We have enrolled him a Spanish immersion elementary school for this fall, and my question is: do you know of any research or anecdotal information about second language immersion for children with hearing loss? I would appreciate any ideas about where to look for this information. Thank you, -- Jen
H&V: Hello Jen, You pose a really interesting question. One to which we don't actually have any definitive answers. If I understand this correctly, your son once had normal hearing in both ears and lost hearing in one ear. What degree of hearing loss does he have in the affected ear? This makes a difference. In most cases a mild hearing loss in the affected ear has minimal impact on academic and language outcomes, but may present challenges listening in noisy environments - like in the cafeteria or a noisy restaurant. Because you don't mention that your son has language difficulties, I am assuming that he has typical development in speech, language, auditory skills and academic learning. One of three children with unilateral hearing loss experience significant delays in their communication development and academic skills. People have speculated about which children are at greatest risk for delay and the prevailing theories are: the more severe the loss (severe to profound hearing loss in the affected ear), a history of chronic otitis media in the good ear, the non-affected ear and congenital - present at birth or acquired pre-linguistically (before language developed), presence of secondary disabilities.
We have been following a number of children learning second languages or in bilingual spoken language settings who have significant hearing loss. Almost all, if not all of these children have bilateral hearing loss. Many of our children with significant bilateral hearing loss who have age-level mastery of one language are learning a second language rapidly with no apparent detriment to their language learning in the native language. However, there are always exceptions. Some children decide drop the second language because it is too difficult to keep up – some end up with literacy skills in one but conversational skills in more than one language - this is the most common development - even among our typically hearing children. Hearing loss in one ear places any child in an at-risk category that means that their development should be monitored on a regular basis. However, since two-thirds of them seem to function as children with normal hearing in both ears, the odds are high that they are able to learn in any environments that would work for children with bilateral normal hearing.
By observing his development, you will be able to tell whether or not the addition of a second language is negatively impacting his progress in his native language. If the class is on the smaller size (in numbers) and the noise levels in the class are at least at regular levels—and not on the very noisy side—second language learning at an age of six should be a fun, interesting and relatively easy thing for him to learn. If he has chronic otitis media or develops chronic ear infections that create temporary hearing loss in the unaffected ear, this could impact his ability to learn another language, but it will impact his ability to progress in English. This should be monitored carefully.
I hope this information is helpful. -- Christine Yoshinaga-Itano, PhD, H&V Board of Directors
Q: My wife and I have a 14 year old hearing impaired son. He is oral and has bilateral hearing aids. Since the third grade he has been attending public schools outside of our home school district. This was due to the location of the center-based HI program. Our son is transitioning from middle school to high school and his annual IEP is scheduled for Friday. We were just informed through our current school that a representative from our home district would like to meet with us to discuss moving our son back to the home district. For a number of reasons my wife and I are strongly opposed to moving our son out of the current school district and back to his home district. We suspect that this request from our home district has nothing to do with what may be best for the education and socialization of our son but instead is really about school funding and addressing budget deficits. We were told that if we refused to move our son back to the home district that the home district would ensure that his bus transportation would be terminated. My wife and I are wondering what our rights are by law and if there are some recommended next steps that we may want to take (e.g. hire an attorney, contact an IEP advocate, etc). Thank you, -- Doug & Christine
H&V: Hello Doug & Christine: I’m not an attorney, and I’m not sharing legal advice. These are just some thoughts and legal information. If you need an attorney, you should get professional legal counsel, FYI. Having clarified that…while it is appropriate and legally compulsory for your home school district to try and meet your son’s needs locally, all educational placement decisions are the result of IEP team discussions about what the student’s individual needs are and where those needs are best met—not what the fiscal goals and cost-savings of a district are. Can the home school district provide a program that meets his academic AND functional (including social/emotional) needs? Will he have peers with whom he can communicate directly? A staff that is familiar with his unique mode and method of communication who can instruct him effectively and directly? What kind of program/support do they have in place? Time for you to bone up on your “special considerations” of your son’s specific needs—see the IDEA Section 614 (3) (B).
An autism case from the 6th Circuit (Deal v Hamilton County Board of Education, TN) in 2006 had similar features to what you’re describing. In this case, the judge found in favor of the parents because the school district had “predetermined” the educational placement of their child who had been in a private school program. The local school wanted him back (much cheaper that way) and put together what they believed would be a nice program then said to the parents, “Welcome back, we’re ready for Zachary at last!” It’s admirable that they tried, but again, all educational placement decisions are based on the determination of need relative to an individual student. In Hamilton County, they had it the wrong way around!
Remember, whatever you do remember: if it’s not in writing, it didn’t happen. Document every every every single communication with the school and ask for whatever they are presenting or sharing with you to be provided in writing as well. Do they have a draft of their proposed IEP? Don’t meet with them until you’ve had it a week ahead of time to read thoroughly and consider. Learn all you can about becoming an effective advocate for your son….so that everything you do from this moment on will achieve your goal, which appears to be for him to remain with his friends and peers at the school he’s been attending for a long time now. See: http://www.handsandvoices.org/articles/education/ advocacy/radvocacy1.htm
Good luck, - Leeanne, H&V