Friday, January 9, 2009

Denial: A Mother Lies to her Deaf Child

I have begun my Italian experience in offering support to parents of deaf children. I don't know whether I'm cut out for this job or not. See, a mom on one of the forums wrote a post asking for comprehension regarding the fact that she has been lying to her son...
Her son consistently asks her, "Mom, when am I going to get better? When can I stop using my hearing aids?
The mother replies, "When you are twelve or thirteen years old."

Oh God, you know that horrifying sinking feeling you get in the pit of your stomach when something is really, really wrong? Multiply that by infinity and that was my reaction. Then, suddenly this overwhelming sense of anger took over my body and I was flat out disgusted. I refuse to feel compassion for this mother, yet isn't that what I am supposed to feel if I'm helping other parents?? Hellllllllllllllllllp me!!!!!!!!!!!!!

This mother felt so badly that she lied to her son and she is lost. But, her son is more lost and he is who interests me.

I replied,

Dear Anonymous Mom,

I don't have any desire to sugar-coat my reply to you, so I am apologizing ahead of time. Your son is Deaf. If you can't accept this fact, how do you expect your son to except it? Deafness is not the end of the world; although, yes, it does make life more difficult. You can say to your son, "You were born a beautiful, sensitive and intelligent baby, it's just that your ears don't work very well and so the hearing aids help them work better." He needs to understand that his ears don't work very well, but that he 'works' just fine.

I told her she needed to explain this to him in a firm yet loving way. If you don't face this situation, how do you expect your son to deal with it? His hearing aids are a part of him. Jordan called his hearing aids his ears. Do not HIDE them, because if you react in this way, then your son will really think something is wrong with him or that you are ashamed of him - and a child doesn't invent that feeling, someone gives him a reason to think that he should feel ashamed. No, it's not an easy thing to face, but you are an adult - start acting like one. I'm sorry, but sometimes things need to be said with conviction, because more than your well-being, I'm interested in your son's well-being...

I think I lost it and I'm not sure that I reacted in a productive way, but the fact that she lied to her son blew me away. I can understand denial, but denying your child's deafness to the point of lying goes against everything I believe...if I meet more parents who react like this, I don't know if I'm the right person for the job.

I'm very disturbed by this situation. What would you have said to this mother??


Naomi said...

Jodi this is where it gets tough supporting via online, because you don't get the chance to see people and actually get a handle on where they are with this.

Don't get me wrong, lying to the child that they will able to hear one day is completely wrong.

However I guess the heart of the problem is why she lied. Maybe her wider family have not accepted this and she feels unsupported and so has to follow the lead of the rest of her family. Maybe she herself hasn't accepted it yet and so can't accept it for her child. There can be lots of factors at play here.

She needs to know it is not acceptable to lie, but equally it sounds like she needs lots of support to accept this herself. She needs to know she isn't alone, she needs to meet other parents, other kids and see that whilst life is different to what she thought it would be, there is still a very happy wonderful life ahead for her and her child - it is a just a little different to that which she had planned. Personally I would encourage you to stay in touch with her, try to put her in touch with other parents and arrange situations where she meets other kids. In a way it is a kind of targeted way of making her accept it. It is hard to be with a whole group of parents and kids linked by hearing loss and not acknowledge why you are there too.

Anonymous said...

Deaf children never discuss their deafness because they experience ZERO pain from deafness. Deafness is painLESS. It's parents who tell their deaf children that they are NOT normal. Deaf children sense immediately that they aren't accepted because of their deafness. Doctors, audiologists and teachers also play the larger role in wrecking deaf children emotionally and psychologically.

Anonymous said...

I wasnt upset that she lied to her child. Parents tell their children little white lies all the time in order to protect them and make them feel better,

What I was disturbed about is why she had to lie about this. Would the mother have done the same if he wore glasses and asked the same about his eyes?

The problem isnt the fact she lied but WHY SHE HAD to, what kind of environment is the child being raised in where he thinks having hearing aids is "something wrong."

Ok, so having hearing aids is obviously something wrong but why does it have to be, this is something the mother needs to explore!

Dianrez said...

Naomi and Anonymous have it exactly right.

The child does know that he is different from others and senses great anxiety from his parents about his hearing aids and his "differentness". He isn't going to trust anyone, or himself as a whole person, once he finds out the truth.

One of the best things to do right now is to have the child meet others like himself. Let him meet people who joyfully accept who they are and casually use devices as if they are everyday tools. Let him see that his parents think they are great people and worthy of association. If these people use sign language, the parents need to accept and joyfully use it as well or the child may grow up to reject his parents for their ambivalence.

This reminded me of an anecdote I heard as a young teacher. A deaf girl said that she expected to die before she was eighteen years old. When asked why, she said she knew no deaf people older than that.

Parents owe it to their children to believe in them, accept them as they are, and build a solid self-esteem. Part of that is knowing and accepting their future peers.

leah said...

Ah, but Jodi. This is why your help is so needed! If you can form a support network to reach out to parents when their children are small infants, the parents will learn how to give honest answers to difficult questions. You can help this parent (however misguided) now, and you can prevent this from happening in the future.

I would hate to be that mother and have to explain why I had lied to him for so many years. Hopefully the truth will be discussed and they can both move toward a more healthy attitude.

Danielle said...

Jodi- My heart is broken for the child.. I deafinitely know how he feels because thats why I grew up hating myself because I am hard of hearing now at 24 years old im finally accepting myself for the way I am. I hope you help that child. I really do! I really pissed off myself. I have no words to say! All I know is im really upset for that child.
I want to know why she lied? I guess the truth is parents cannot accept there children for who they are & they grow up learning something is wrong with them just like I did.... Totaly shame


Anonymous said...

I thought you gave her a good answer. You may think you're not the person for the job, but, in good time you will see that being frank and upfront is the best way to go. One part I probably wouldn't say is "You're an adult, so start acting like an adult." :) But, that's just me. You grew up out on the east coast, so, that's you. :)

Another thing, if that mom had not let it bothered her, then I would have considered her cold. But, the fact that she reached out, tells me she felt bad about her lying.

You go girl! You're doing a great job.


Anonymous said...

Goes to show ya, some people are not qualified to be parents!


Anonymous said...

Jodi, my mom lied to me too when I was growing up. at age 7 or 8, I asked her why I had to wear my hearing aids. She said it was because they stimulated my ears so that one day I would hear again. At least that's how I recall it. I had a love-hate relationship with my hearing aids all through childhood. I agree 100% that deaf children don't feel pain regarding their deafness. What WAS very, very painful was the expression on people's faces (pity, mostly) and how they treated me differently after they learned I was deaf, as if I was helpless or mentally impaired. However, my family always thought of me as normal, and I thought of myself that way too. I grew up the only deaf child in my town, and I bet this mother has never met another deaf child or mothers of deaf children. She deserves compassion and support. I'd ask her, "Tell me more about your situation" and then figure out how to tell the truth to her deaf child. Hopefully, both mother and child will be able to forge a better relationship with each other and their circumstances in relation to the child being deaf.

Unknown said...

I just want to thank everyone for their advice and comments. Naomi, I knew you would say calmed me down (for a change *smile*)
Dianrez, I think you've posted this before: This reminded me of an anecdote I heard as a young teacher. A deaf girl said that she expected to die before she was eighteen years old. When asked why, she said she knew no deaf people older than that. A number of people suggested doing that, which is really one of the best solutions for the child.

I wrote her back, told her to contact me via email if she wanted to talk and was more compassionate. I told her she obviously was looking for support and was on the right path if she had made the concerted effort to find the support group. People are very close-minded in Italy, especially in certain parts of the country. I need to get used to this type of mentality and be more understanding. I'm just not a sweet person- I'm more the type to shove it down your throat, but then that guilt gets me right in the gut and I have to become sweet. It's a vicious cycle.
I greatly appreciated all of your comments - Anon. thanks for posting.
Hugs and have a great Sunday,

Anonymous said...

Jodi, as you know, I've been dispensing advice online and in person for several years now. Everyone's style is different (though I don't know what growing up on the East Coast would have to do with it!).

When someone reaches out, they are asking for help and at the same time they are taking a risk. They risk hearing the truth, whether it is harsh or sugar-coated. They have no way of knowing what someone will say or how they will say it.

I think you did just fine. When you want to continue the dialogue and further educate, it is often better to go a bit easier so you don't scare them away. We know parents often need long-term help, not just a single email or conversation. I love email because I can edit things (and boy, do I) before I hit the "send" button. If you're not sure if you feel you may be coming on too strong, write the email and then leave it for an hour or two then re-read and perhaps edit it before you send it.

This mother was obviously in pain. She felt she had to lie to protect her son from feeling upset about his hearing loss being permanent. Sorry commentors, I disagree about deafness being painless. For many that might be true, but for others it might not. Even the most well-adjusted, happy child can go through bouts of "why me?" when it comes to their hearing loss. As an adult with a nearly life-long hearing loss and a parent of the same, I know.

Jodi, don't ever doubt yourself and your great instincts. You are offering sound, honest advice and are doing a tremendous service to parents in Italy as well as worldwide.

Keep up the GREAT work!

Unknown said...

Thank you for what you wrote. Just one realize how necessary the services and resources you provide are so could you please get your ass blogging again?

Unknown said...

PS.'s that headache???

Dianrez said...

The focus here is upon supporting the parent and her needs; for all children what is good for the parent is going to benefit the child.

All children have pain to some extent, whether it is about deafness or freckles or being a tad bit overweight or having one parent when others have two.

It is because the society around the child has set expectations and reinforces them somewhat. It takes minimum of one parent to counter this where it is not respectful or responsible: eg. teaching the child that it's okay to be black or small or deaf.

That society is relentlessly supportive of hearing/speaking is especially troubling to us deaf citizens: however we try to show that it is normal and possible to have happy, productive lives while deaf and to enjoy sign language for its virtues, society stubbornly asserts its audism. We constantly fight the threat of nonacceptance from people who should know better: parents, neighbors, employers, and are told irrationally this is our fault because we don't hear.

We all need to focus on acceptance of human diversity for everyone's sakes. Starting with parents.

Unknown said...

"The focus here is upon supporting the parent and her needs; for all children what is good for the parent is going to benefit the child."
I agree. Okay, I changed my tone and started to tell her about things that happened to me and Jordan's reactions etc. and she told me I made her cry.
I'm making progress. *smile*
Thank you...