I need your help with some advocacy

[Val]

Long story made made short, my parish priest was recently very insensitive regarding my child with a hearing loss- said something to the effect that he didn't want the FM unit used by the teacher 'cause it was special-ed looking, and that it was an imposition on the teachers (who actually LOVE the FM unit for the WHOLE class).....we engaged in a long, heated debate about whether my daughter could "hear better if she just tried harder"......after I got over being angry (okay, I even called the priest a bad name to his face!), I realized that my priest is not necessarily insensitive (okay, maybe he is), but he is VERY uneducated about individuals with disabilities. Thus, my project: I am making him a three-ring binder of resources for interacting with individuals and parents of individuals with disabilities- kinda of a kill him with education approach. Here's where I need your help....


......this is your chance: What would you like to tell a priest/pastor/minister about dealing with/helping individuals and their families. What do you wish they would do MORE of, LESS of, or just ANY of? What services might you want to have at your church- what resources, advocacy, understanding, etc. Fire away!

 

[Michigan]

I think the first thing your Priest needs to do is open up his Bible and take a lesson from the compassion of Christ and I would not hesitate to tell him that either.

I attend a large Evangelical Presbyterian Church that makes every effort it can to meet the needs of the disabled. They have Cheer Givers which are special helpers for any child that needs them. My daughters don’t need them because they are very independent with their wheelchairs. However, my youngest DD has a little girl that is in the class with her that has Down Syndrome and has a Cheer Giver. There is also a class for any child with a disability that doesn’t feel comfortable in a crowded class. There is a class for developmentally disabled adults. They also have 2 Greyhound type busses but they also have a small bus with a wheelchair lift that my oldest DD has had the privilege of using several times.

I would ask the Priest to put cotton in his ears and try to listen.

 

[vhoffman]

How important is that church to you? Why don't you just find another one? Its not clear from your post if this is a church thing, or if your child also attends school there as well. If she attends private school, you are paying money for the service--if it doesn't meet your child's needs, find another school. If its church only, well, there must be other churches that would be more accomodating (and willing to accept your donations!). Trust me, you'll never win, you might win a few battles here and there but you'll never win the war and your child will be caught in the crossfire. I hate to say it, but I really think he wants you to leave for whatever reason. What has he done to make you want to stay? Of course, its a personal decision, but do realize your child is caught in the middle.

This reminds me of a news article I read a few years ago about a little girl with a severe wheat allergy. The parents asked if she could have gluten-free wafers for her first communion. Seems like a simple enough request, the parents even offered to pay for it. However, the church refused, saying the Bible clearly states that the last supper consisted of bread and wine. Bread is made from flour (containing gluten), not rice. I really don't think Jesus intended his words to be taken to exclude a child from His table. And if they're so interested in being true to the Scriptures, was the original bread in the last supper made from Pilsbury or Gold Medal flour? Answer--no one knows the exact recipie!

I'd quit that church--find another that cares about your child!

 

[roseprincess]

Hi Val,
First of all, I am so sorry about your situation with your priest, not wanting to understand your child's special needs. It sounds like the teachers are open to
understanding your daughter's special needs.
Second, I think it's a great idea to shower the priest with all the info you were planning on giving him about your daughter's disability and children with disabilities in general. Your priest needs to open his mind to accept children and adults with disabilities.
Third, you are your child's best advocate. The parents are the ones that know best and want the best for their children.
Fourth, there are a few special ed advocates out there you can contact. I have 2 special needs children. I live in the NW suburbs of Chicago. There is a special ed advocate you can contact that helps out parents here in the NW suburbs of Chicago. I don't know if she can directly help in your county, but she can possibly help indirectly or maybe she can answer your questions. Please email me if you would like her name, number, and email address.
I think I have on my options for the Disboards to take email and possibly IMs.
I hope this helps!

roseprincess

 

[luvmarypoppins]

So sorry to here of this. I would say if there are other parents of special needs kids in your parish, that you might want to form a council/committee and see how your parish in whole deals with differently abled children. I was on a council that had to work on child protection issues with dh. It was great and a procedure book was formed etc. I also was a sunday school teacher and we help in the nursery, my 2 ds help me. I have to say the biggest problem is the parents themselves not telling you how to treat or help their child. Our little special friend right now is autistic and the mom who was in denial just drops him off. He is getting lots of therapy but at one point we had moms refuse to leave their kids when he was there because of his constant screaming, throwing etc. I just wish the mom would tell us how to handle him. Maybe have a book in the class room with an action plan for each differently abled child. A basic form that parents could just fill in the blanks etc. My own son had speech delay problems and I made sure to tell the teacher, helper etc. what to say to him, his phrase was - what you have to say is important to us, try again, show me, point to it etc. Sometimes he would basically withdraw and go by himself and not interact with anyone. So it is good to hear you are advocating for your child. Do you have a childrens ministry, or christian education person who could go with you to the priest etc. Best of luck and hope all works out.

 

[eeyore45]

Hearing aides do NOT "fix" hearing!! My ds is hard of hearing, and in 4th grade I butted heads with his 4th grade teacher, she was so frustrated at one meeting that she uttered those horrible words "He wears hearing aides, they fix his hearing!" They are so unlike glasses, yet they are compared to glasses too often!!

Do you have the chart that shows the DB and common items, as well as vowels and consonants? When we showed his 4th grade teacher that even with hearing aids my son will never hear "s" and "F" etc, etc, she didnt get it, well, she didnt admit it anyway!!

Also, I have a friend that is a librarian that is hard of hearing, and she looks after my son, (emails) she has quoted that the HOH group has the highest incidence of drug and alcohol abuse, due to not fitting in to either deaf, or hearing worlds... and as a church, shouldnt we be trying harder?!!

 

[Talking Hands]

That is so true. If the enviroment is noisy it just amplifies all that background noise and doesn't make any easier to understand. FM systems are great because they transmit speech directly to the user without the background noise. The priest needs to go around for a day with earplugs in his ears and then maybe he will understand more about being hard of hearing.
I would look for a church that welcomes your child and is willing to accommodate him. We have a child with a CI and she sits up front every week so she can see as much as possible as well as hear. Maybe a church with a deaf ministry or even a deaf congregation. They have more visual formats as well as interpreters and there are oral interpreters
who take what is being said and makes sure it is visible so the hard of hearing person can speech read.

Hearing aides do NOT "fix" hearing!! My ds is hard of hearing, and in 4th grade I butted heads with his 4th grade teacher, she was so frustrated at one meeting that she uttered those horrible words "He wears hearing aides, they fix his hearing!" They are so unlike glasses, yet they are compared to glasses too often!!

Do you have the chart that shows the DB and common items, as well as vowels and consonants? When we showed his 4th grade teacher that even with hearing aids my son will never hear "s" and "F" etc, etc, she didnt get it, well, she didnt admit it anyway!!

Also, I have a friend that is a librarian that is hard of hearing, and she looks after my son, (emails) she has quoted that the HOH group has the highest incidence of drug and alcohol abuse, due to not fitting in to either deaf, or hearing worlds... and as a church, shouldnt we be trying harder?!!

 

[scroot]

First, on behalf of clergy every where I am sorry about this. Second, we are not all this way. I actually know of cases where families have been told to leave children with disabilities at home becuase they bothered other people. I would also point out that the communion waifer issue raised in another post went all the way to the pope. On the other had there are those of us to go out of our way to accomidate special needs and especially children who have a special need. I think in the big picture this is getting better but the Church is often the last thing to change.

I would recommend a couple of books for your resource packet "Healing Homelitic" by Kathy Black. Kathy was the chaplin at Galadet for awhile and writes about ministry to people with disabilities. She also is a professor of preaching and worship at a United Methodist seminary. This book is aimed at rebuffing some of the bad theology around disabilities that is so previlent. Another nice book is "What it's like to be me" edited by Helen Exley written and illustrated by children with disablities. Both of these should be available at Amazon.

Here comes the hard part. If these efforts fail, I would make an appointment with the Bishop of your diocese. In all honesty, If I did something this nasty and didn't change my ways, I would hope my parisioners would visit my higher ups. Good luck and feel free to pm me with further questions.

 

[SueM in MN]

Here comes the hard part. If these efforts fail, I would make an appointment with the Bishop of your diocese. In all honesty, If I did something this nasty and didn't change my ways, I would hope my parisioners would visit my higher ups. Good luck and feel free to pm me with further questions.

I think that is good advice and I don't think you would ever do anything that nasty (if you did, it would be inadvertant and when the person talked to you about the first time, you would be horrified you had done it and would fix it).

We did end up changing churches once because of how DD was being treated. I went to Sunday School with her each week and acted as her aide. Each week, the chairs were arranged differently and there was no space for a wheelchair to get through. The clueless teacher never did anything, but the kids picked up on it and would make a path for us. The final straw was one week when they were doing the story of Jesus healing a lame man. The teacher said that his sins had made him sick. One of the kids pointed to my DD and said "Does that mean she is sinful?" The teacher said "Yes" and pretty much left it at that. At that point I took over the lesson (luckily the teacher was kind of timid and my 8 years of parochial school did prepare me for some things) and explained that we are all sinful, and that people with disabilities are not any more or less sinful than other people. I also explained that the "sickness" the lame man needed to be healed from was his sins, but that the people with Jesus would not have been able to see that. He healed the man of his lameness so that people would see and understand that something had happened and would go out an testify to others that they had seen a miracle.
I was kind of upset that the teacher had not forseen something like this coming up and that the pastor had not talked about in the Sunday School teacher's meeting since he knew my DD was in the class.
After quite a while of butting heads like this, we did find another church in the same denomination that was more disability friendly. I did talk to the pastor and let him know why we were leaving. He still didn't really get it.

 

[simba928]

I am only 14 and even I know that your priest was very ignorant in that situation. He should have realize that a long time before I did. If I were you, I would switch churches and I wouldn't be shy about telling him why. I know you all are probably saying that I'm just a "stupid" 14 year old and what do I know. I will admit, though, that I used to stare at people in wheelchairs and I was very ignorant when it came to people with disabilities. A few years ago, I heard about Canine Companions for Independence (CCI). CCI, for those of you who do not know, is an organization that raises and trains assistance dogs. Ever since I found out about them, I was very interested in service/assistance dogs. I started researching them and now, I am a lot more sensitive. I even explained to my brother on a cruise that people in wheelchairs deserve the same amount of respect that we give anyone else. Your priest definitely needs to be educated and you should be the one to do this because noone else will. Good luck.

 

[SueM in MN]

I know you all are probably saying that I'm just a "stupid" 14 year old and what do I know.

I think you will find that most of the people here agree with you and no one will think you are "stupid". Sometimes the most adult people are the ones who are not technically adults yet.
Thanks for giving your opinion.

 

[eeyore45]

DS has a box of soft sided yellow ear plugs, (You can purchase a set at Walmart for just a couple of bucks!) on the back of the box it states the hearing it 'mimics', he was excited and asked his girlfriend, and friend to wear the ear plugs to get a feel for what he "lives" with... they lasted 2 hours! His girlfriend admited to going crazy and just ignoring the tv and wrapping presents!! I believe it mimicked a 35 -45 db loss in the mid range... when I substitute teach I often mention my sons hearing loss, and ask the class to put their fingers in their ears, explaining they can still hear me, but have to concentrate, and look at my lips etc...

Just wondering if there was an update...

 

[JoyMouse]

Hi!
I also have a wonderful DD that is hearing disabled. Be proactive! A "pushy" mama is not a bad thing sometimes, like others have said, you are your childs best advocate. Do not hesitate to educate! Your childs religious training and social life at church is just as valuable as anyone elses. Sometimes a one on one talk works other times you have to go farther up the ladder. Good luck and don't give up!

 

[Carrieberry]

My son is deaf and autistic. We got him a cochlear implant because the hearing aids were causing sensory problems due to his autism and we were told they really just amplifed the sound that was making him miserable.The learning disability from the autism made teaching him sign language impossible and he did not pick up any signs for 2 years so we decided to try the implant. Now he has the CI, wears it at school like a happy little camper, but wants to take it off the second he comes home- MASTER MANIPULATOR! Anywhoo, we have had to deal with peope just like your parish priest many times. Such as- "he has an implant- why can't he talk? Or hear? Or respond more often?" or "It sounds just like a normal persons hearing (no it does NOT) so why doesnt he like it?" Maybe if you got him extra therapy he would fit in better." Blah blah blah. Unfortunately all you can do is educate by pointing out the persons misunderstandings about the disability. If you feel your parish priest is a genuine sensitive person that just does not understand then you can do what you are doing and try to help him. If he is coming off as not being caring or at all sympathetic to your child, and making you feel at all uncomfortable about being there with your child, I would have to agree with the other posters that suggested going elsewhere. Your church should be the second most comfortable place you can go to (your home being first) and if this is not the case then they do not deserve to have you or your wonderful child as part of their congregation and I would say .

 

[pampam]

Perhaps you could ask your priest to follow Jesus' example. At Mark 7:32,33 we read of Jesus healing a deaf person. But he did it in such a kind way. He took him away from the crowd to a private place, so the disabled man would not be embarrased. Jesus would also be able to explain, likely by gestures what he was about to do so the deaf man wouldn't be startled or afraid. This shows compassion, and love, 2 qualities your priest needs to work on.

 

[AJKMOM]

While not all priests or clergy are like the first one mentioned, a lot seem to think that because they are clergy, they are better than you and me. Hey, I went to college, too, just like they did. I hate that because someone majored in religion in college, they think they are superior. Like priests giving advice on marriage, child raising, and disabilities. I have a friend whose child was assaulted at a parochial school, and the priest was upset, not because of the assault, but because the student population found out about it. If that was me, I would have pressed charges, but the priest tried to hush the whole thing up.