Monday, January 12, 2009

Denial Part 2: I Can't Accept My Child's Deafness


I've changed my tone. I am desperately trying to understand this mother's pain and convey certain fundamental messages regarding disability. I started my Italian blog with the Special Mother Poem, so that parents would focus on the positive and not be consumed by the guilty, nagging feeling that they were in some way responsible for their child's deafness.

This mother flat out said that she does not accept her son's disability. She talked about an experience with her son's coach:

...The coach asked a question to all of the children and expected they answer. After many children answered, one child refused to answer and the coach said, "So can you not hear me because you're distracted or because you're all deaf?"

The coach doesn't know that my son is really deaf. I never told him.
Why? The truth is that I don't want him to be treated differently than the other children. I lie to everyone because first and foremost I lie to myself...maybe this is the real problem.

Please forgive me, I am not trying to insult anyone, but only here do I feel able to truly express myself, and not to fake or always say that everything is okay...

I realize that it is not easy to understand my point of view, maybe because there really is no logic to it. I have these disconnected and illogical thoughts that come upon me unexpectedly and without warning.

There are times when I feel this incredible sense of strength and I'm ready to fight for my kids and then there are these moments of total desperation where I am so totally ashamed of myself.

I have tried to examine myself in these two days that I have been writing to you and the truth smacked me in the face. Not only can I not accept my son's deafness, but I hate the idea of accepting that my child will never be totally the same as other children...And you know? Writing this is not easy. I am ashamed of myself and I so wish that these thoughts about my child would never have surfaced.


While at first the people responding to this mother's post were a bit on the harsh, "pull yourself together" side, now the commenters are being a little more empathetic. This is a MAJOR cry for help. These cries for help are always present on the support groups and are totally normal. I went through these periods where one minute Jordan made incredible progress and the next I felt like he would never speak a word again. The down moments are so totally down, especially when you are alone. Her husband provides no emotional support, he's in denial as well. She lives in a small town where she has never seen another deaf child. She is alone. And she is reaching out.

I won't say "I understand your pain and you have every right to be in denial. Your son is Deaf-what a tragedy!" That is so not what I believe. However, I remember all of the times I said to Luca, "Honey, I'm taking a walk. Be back in a half hour and I'll be a much better mom to my son. Good luck to you." I went for my walk and I breathed. God, I was totally alone and even more isolated by the language difficulties. I think I ate a lot of gelato in that period.

Every day, I read the mothers' cries for help on the support groups and after ten replies from parents who have "been there, done that" they begin to see what is beautiful in their children. They focus on the positive, not the negative. It is a long journey and a very difficult one without support. The more support this mother has, the stronger she will become. Jordan has taught me many lessons in patience and faith...this mom has no idea how her life will be enriched by her son. Once she begins to overcome her sense of guilt, now that she is reaching out for help, she will begin to understand that she is a Special Mother, too.

25 comments:

Naomi said...

so true Jodi! I have always likened raising A as a true roller coaster journey. The lows are so low you think you will never get out of them, but the highs!!! They are so high, you feel on top of the world, when you see your little guy accomplish something awesome : - )

Anonymous said...

Wow. I am a deaf mom myself. I have two sons, one hard of hearing and one deaf. Matthew lost his hearing at the age of two and a half. Now, yes I grieved because I lost my hearing son. Even though I am deaf myself. But over the years I have embraced my son for who he is. He is a deaf kid, proud of his deaf identity. No he is not the same kid he once was, when he could hear. But that is okay.

My son Alex is hard of hearing and is losing his hearing progressively. I think this is easier. Matthew's hearing loss was very sudden, he lost his hearing after becoming very ill.

Sue

Paula Rosenthal said...

Proud of you for seeing past this mother's issues of denial and lying and seeing it for what it was, a real cry for help. She is lucky to have found you. :)

Anonymous said...

jodi,

I can only offer my view as a deaf person, not as a mom with a deaf child.

I can only say that the longer the young mother keeps projecting her denial onto her deaf son, the harder it will get to maintain that illusion. The illusion is a facade that will crack eventually in the child's life, not hers.

It has so far been about the child fitting his parent's need for normalcy, however the parents define it, and not the parent meeting the deaf child's needs which will become all too apparent as he gets older.

The lack of acceptance of her child's deafness is the cruelest denial of all. It makes the child realize that he is NOT ok, that his family is NOT ok with deafness, therefore, creating an insecurity in that child that will last a lifetime. I know, I've been in that child's shoes.

I understand that deafness is likely considered a closeted disability in Italy, that little is understood about deafness in children there, so it must be a difficult road for those who must deal with the attitudes there. You have your work cut out for you, but I'm sure you have the strength and caring to blaze a trail of understanding and support there.

Ann_C

Dianrez said...

This mom needs some shock and reality treatment. Take her to hospitals to visit severely disabled children who will never talk, walk or feed themselves. Show her schools for the mentally disabled where some children will never recognize their parents. Then take her to schools for the deaf where children are playing soccer and happily trading outrageous commentary with one another. Introduce her to deaf businessmen, deaf teachers, and, yes, deaf mothers with children thriving under her care. Then take her hand and ask her tell you what is troubling her.

Anonymous said...

(Heavy Sigh) The root of oppression is that we do not value the lives of people who are different from ourselves as much as we value the lives of people who are like ourselves.
In addition to the cry for help, this mother cannot see her deaf son as a real person who can have a 'real' life as a deaf person. In other words, she is saying that if she admits that her child is deaf, then she is admitting that he is not really a person at all. I have experienced this attitude before. I do not know if it is possible to make any positive difference without face-to-face conversation. Both support and confrontation may be necessary.

David

Anonymous said...

This mom needs professional help. While you have your "mom" experience, and that is good too, this woman needs way more help than you can offer. Suggest she see a therapist!

Lucky

O said...

Perhaps her lies have more to do with the culture in which she is raising her son, than her own willingness to accept his being deaf. When I lived in Ireland, I was treated as a pariah because no-one understood how to handle a deaf child. My family never spoke directly to my son, except for my step-mother, and nobody would babysit, they all said, we don't know what to do. Do not doubt for one second that this mother loves her son, but when she has no experience and the people around her have no experience, then how is she to know better? Jodi, even though your son was diagnosed in Italy, you have found a lot of your support from parents in the United States, she didn't have that option.

Have a little compassion and share what you know and have learned and perhaps help her see how she can help herself and her son.

Orla
Mom to deaf 15 yr old boy who is quite happy just the way he is!

Jodi Cutler Del Dottore said...

Morning! Thank you again for your comments because every time you guys leave one, I think of another way to think *smile*
I'm making progress with the mom. I told her that since there are sales now throughout Italy to go and buy something spicy for her and her husband. She's my new best friend.
Seriously, she asked for help and is receiving it. Her acceptance of her son's situation will not be immediate, but based on info she gave me she is making progress. I gave her my number to call me, but she isn't ready to have voice to voice contact. It's slow, but she has acknowledged her difficulty in dealing with deafness which means she really wants to be the best mom possible to help her child.
Orla, I had no access to support until one year and a half ago. I didn't even know support groups existed until then. Note: this is why Audiologists, ENTs, Pediatricians and Speech Therapists must provide resources to families. So, I was alone just like this mom and I understand what she is going through.
I truly believe that when a mom gives birth to a child with a disability, something in her lifetime has prepared her to go to battle for her child. Based on what this mom told me, I am sure this is the case for her. When you are used to traveling an uphill battle your entire life, you have that extra bit of strength necessary to forge onward. We just hit some potholes every now and then, where we need to regroup and repair. This is one of those moments.
After every single one of those moments of desperation, I got stronger. Has something to do with forming calluses. That mom will be okay, but she definitely needs help. That's what we're all here for! Thank you...
Love,
Jodi

Tony Nicholas said...

Jodi

There are three separete issues here.

1. The child's deafness
2. The mother's denial/ response and the child's response to his mother's behaviour
3. The reasons for the mother's behaviour to her child. Cultural conditioning.

What the child needs is to meet people like him. Simple.

What the mother needs is some deaf awareness. Not just the oral root, but also the cultural route.

The child is old enough to amke some choices for himself, so that is going to become more important than the mother's own needs.

The child hismelf is gonna need some support to live as a deaf person....something abit more holistic than technological aids and shit like that!

kim said...

Jodi,
This post pained me to read. You would think at the age I was when my hearing loss was diagnosed (19) that my mom and I could have gotten past all that. The pain of my mother being openly ashamed of my hearing loss was worse than the pain of losing my hearing. It felt like she was ashamed of ME because my hearing loss is part of me. And the denial-- just when you need a mother's support-- to have her turn around and be so unsupportive-- because SHE can't handle it-- well it's brutal.

At least I was an adult. I can't imagine was that little boy goes through.

It took me decades, and a comment from a psychologist friend to realize my mom couldn't accept my deafness because of her own misguided feelings of guilt. I should have picked up on that. I'm a mom.

I understand that as moms we always think everything is our fault, that we should have known, that we must have done something to cause whatever bad things happen to our kids. But it was hard to step out of the situation and look at it rationally. It took a friend to suggest maybe she felt 'guilty'. Then the light went on.

It wasn't until I sat Mom down and said, "I had a great childhood, the hearing loss wasn't your fault,. . ." that she finally came to terms with it.

And it didn't happen over night.

There used to be a wall between us which isn't there anymore.

That other mother, she needs to talk to a psychiatrist who specializes in how disability impacts family life, so she can build a supportive relationship with her son. She needs to stop feeling guilty.

And one more thing? We've talked about intuition/weird psychic things in the past? I know for a fact deafness was my destiny. I had a premonition long before I became deaf. Why? I don't know, but it's not a punishment or a horrible thing. It was meant to be. Mom had nothing to do with it.

Jodi Cutler Del Dottore said...

Kim,
You know I think you are an amazing and sensitive woman, but this: It wasn't until I sat Mom down and said, "I had a great childhood, the hearing loss wasn't your fault,. . ." that she finally came to terms with it.
...was exceptional.
Love,
Jodi

Anonymous said...

very clearly. That is part of discrimanition You against deaf community. Why don't you learn America Langauge? It is important to learn how to communicate with deaf community with ASL THAN speech. I have been throu my bad experaince about the speech is not learning quickly until I was 10 that very behind to learning America Sign Langauge able learning very quickly. Very easy to pick learning alot And lot of input catch up the words by ASL very helpful. Myself disagree with that Cochlear Implant for tooo young children and baby that I am against. You know why? I have been research few the client who are Cochlear implant. one young girl die of cochlear implant. one teenager get impant siezure by cochlear implant. One young man didnt feel nerves system as numb on the side of his face..many babies get cochlear implant by their parents force them become hearing. DON'T FORCE THE CHILDREN BE COCHLEAR IMPLANT! I rather be my opinion only for adult can want themselves being cochlear implant. that is fine!. not for babies and children are NOT safety.

thank you.

O said...

Jodi, I didn't know that you didn't find support until 18 months ago, that must have been very hard.

When I was in Ireland, the social and medical aspects of deafness were to hide it away and I was told to wait for a CI when my son was 6 months old and the age for implanting, at that time, was 3 yrs of age. No-one could tell me what I should do for the next 2.5 yrs. I decided to learn sign as I felt that getting language, any language, into him was imperative.

As for Audiologists, ENTs, Pediatricians and Speech Therapists providing support for families, this is still a hurdle even here in the US. Dr. Berlin was part of a group who came out with a booklet, I think it was sponsored by Oticon, which gave a brief overview of what parents might need to do, post-diagnosis. The booklet is called "Open Doors: Options in Communication and Education for Children Who are Deaf or Hard of Hearing". It's not very long, only 36 pages, including resources listed in the back but I don't think I have ever seen it at my SLP's, ENT's or Audiologists office. Sad. Jodi, if you are interested, I can scan it and email it to you page by page, LOL. It is actually half the size of a full page, so it would be 18 pages, scanned. Let me know.....

Some mother's are more capable than others of bucking the trend and fighting for every piece of information and learning about everything they need to do to help their children. Unfortunately, this is not typical. I have met many parents who do only what the school district tell them to do. When something felt wrong to me, I went searching for answers. Not every parent can do that. Even my own husband (now ex) told me to back off and let "them" do their jobs. I just knew that I couldn't look that boy in the face if I hadn't done everything humanly possible to get him the services he needed. And it has paid off in spades.

This mom is now doing the same thing. She is searching for answers and the whole group can help her instead of judging her.

As an aside, my son also has a diagnosis of Cerebral Palsy. While the school insists in putting deafness as his primary disability, the CP impacts his education far more at this stage of the game, his deafness is just part of who he is.

Orla

Jodi Cutler Del Dottore said...

Orla,
Thank you so much for your comments. First of all, I would REALLY appreciate the booklet. If it's too much to scan it and you want to send it via snail mail, send me an email to jodi@rallycaps.net and I'll send you my address.
If you want to scan it, send it to lucaandjodi@alice.it because the other email address doesn't always accept attachments. I'm a mess over here *smile*
You are right about not all parents fighting to find resources, I think it's more of a rarity than a commonality. That's why it's the parents who do the research who need to kick the system in the ass to get it rolling for those in need. In general, it's the moms who have this ability, not the dads-yet there are many exceptions to that rule.
Your child is very lucky to have you..
Btw, are you the Orla that Jill responced to in the post I posted about her? Do you belong to Listen Up?
Hugs and thanks again,
Jodi

O said...

Yes, same Orla, not too many of us, LOL.

Orla

mishkazena said...

This is tough. I wince because it reminds me of my childhood family friend who is deaf and his mother who couldn't handle his deafness. Sad to say, her inability to accept his deafness had harmed his emotional, psychological and social well-being to this day.

Bless your heart for trying to understand this woman's dilemma, which is so alien to you and being there for her. She has her limitations and needs help. Hopefully she will gain some insights and strengths from you, but she may need to get professional help.

My friend's mom didn't learn from my mom who accepted our deafness and never treated us differently. My mom tried, but one can only do so much. One blessing is that his mother chose the same approach my mother used, academically. If not for that, he could have been much worse.

Unlike others, I am not going to judge that mom.... like I did with my friend's mom when I was younger. Now they are old, I see a lot of regrets and concerns.

She is a mother who is not emotionally equipped to raise a child with different needs. I hope she will be receptive in getting help, for her sake and her kid's sake. She is trying.

You may tell her what will happen if she doesn't get help. Feel free to contact me, if you want to discuss this.

Anonymous said...

I understand her pain. I think she blames herself for not taking care of herself pretty well. I know she's angry herself pretty well.

I know and am sorry that it would be insensitive for me to tell her this.....
I'd tell her that I rather my child to be deaf more than having her/his leg is to get amputee.

That's tough task.

You try to do your best to support this Mom.

Hug.

White Ghost

Anonymous said...

I could really relate to the part about not wanting to tell people that you're deaf. I never did when I was growing up, and the reason was because I wanted to be like everyone else. Not hearing per se, but to simply do what others were doing, and especially having access to communication through lipreading and speaking (I didn't sign back then). Many decades later, I realized - talk about your light bulb moment - it is really *helpful* to tell people that I'm deaf. It doesn't take anyone long to realize there's something different about me, and the sooner I tell them what it is, the better off we all are. Some people are turned off and just want to withdraw, some people are cool with it, and there's a million different reactions in between. But nearly every time, as soon as I tell them how I want to communicate -- write, talk, lipread, whatever -- they seem so much more at ease. I also realized, years down the road, that family members ran interference for me any time a hearing person would speak to me and I didn't respond. A lot of the time I didn't know they were doing it. How much better it is to take the initiative of telling people who I am.

Anonymous said...

Just curious....since you have chosen an exclusive oral approach for your son, haven't learned sign language, and your Deaf son hasn't had access to it, would that be a denial of your full acceptance of your son being Deaf? How does your Deaf son socialize with other Deaf peers and adults? Am I the only one that thinks it is odd that you are mentoring this mother??

Jodi Cutler Del Dottore said...

Mishka, thank you for your comment and your offer to help me..you know I'll email you if I need you *smile* Everyone has their own skeletons that get in the way of how able they are to come to terms with their child's hearing loss. I was talking the other day to a friend about this and was saying that I was fortunate to have taught at an Elem. School that had a lot of problem kids. There, the focus was on each individual child and the message was that every child learns at a different pace- the fastest wasn't always the best...This helped me a lot in concentrating on what my son needed, not what was "expected."
Hugs and thanks,
Jodi

Loudest Mom said...

Wonderful post.....And, after reading your blog for quite awhile, I'm sure that you offered amazing words to her.

Jodi Cutler Del Dottore said...

*Am I the only one that thinks it is odd that you are mentoring this mother??*
Probably not...but maybe:)

Jodi Cutler Del Dottore said...

Dear Anon,
I was trying to send you a reply to your incredible comment last night, but Sofia had to go to bed and needed my attention...
This: How much better it is to take the initiative of telling people who I am... is what I have been determined to teach Jordan. When we are concious of our own individual needs in a matter of fact way because that's just the way it is, others perceive that attitude and react accordingly. Oftentimes we are our own worst enemies. I really loved what you wrote- thanks for sharing it...Jodi

Jodi Cutler Del Dottore said...

Thank you White Ghost and Loudest Mom---so sweet!