Parenting a Deaf Kid as a Hearing Parent: Four Years In
Ellis runs ahead of me in all his four-year-old boy vivacity. As I lumber along with the baby on my back, lugging our little bag full of snacks and water bottles, I watch him, waiting for the moment, just before he disappears around the corner, when he'll turn around and make eye contact. I wave him down signing WAIT FOR MOMMY! but he's already plopped down on the park bench and signs WAIT. As I get close, up he pops again, and I watch the back of his head bounce, jump, and dash along.
Cut to later. Ellis is picking up his fifteen-month-old brother. Again. He adores his brother, but sometimes his love is a bit too lavish. I kneel down, fully intending to affirm his love, but to talk with him about more appropriate ways to express it, while firmly prying his arms away from the baby, who is screaming his head off. Ellis drops to the ground, flailing and squeezing his eyes shut.
Four years ago, when we learned that our brand new baby was born profoundly deaf, we knew our experience as parents would be different. We got a kick out of being able to vacuum in the same room as a sleeping baby. We cheered at his vocabulary of ASL at such a young age. We stomped the floor to get his attention.
However, I feel like it's only been this year that I've really begun to get a glimpse at what it means for Ellis to be deaf, and deaf in our hearing family. I've started to see how he settles himself socially. Personally, I'm starting to see the particular ways I fall short as a parent. True, nobody is a perfect parent, but I'm speaking of the ways in which I struggle as a Hearing Parent of a Deaf Kid.
The primary aspect of this unique experience is communication. We are settling into the bilingual dance between spoken English and ASL. Two years ago Ellis got a CI. He's doing pretty well with it, his receptive language is stronger than expressive. I can talk to him without signing through the simple aspects of our routine and that works out fine. He doesn't like to wear it at home. We don't press him to, but, I will admit, I may or may not have bribed him with chocolate milk to wear it at home sometimes. He wears it at school or usually any other time when we're not home. He is most comfortable with ASL, and that is the language we use with him primarily, even if we are speaking, too. This is especially true in discipline situations, where I need to use whatever language we have to its fullest, and since ASL is his preferred language, that is what I use.
From the beginning, we've pursued our education in ASL vigorously. We've taken classes, lived in the dictionary, had Deaf Mentors. But we are far from native signers. We get by. We can communicate fairly effectively with our four-year-old: we can read books in ASL and talk to him about the world around us.
I have found lately, though, that my ASL is starting to fail my parenting needs. It's taken me awhile to figure out what the matter is, because I know the signs and how to use them, but somehow I'm failing to communicate. I think there is a Deaf presence that I don't have. I'm not really sure how to describe it. A way of using my body that transcends the actual signs, that enters into his space, meets it, communicates with it. Connection is a key part of my parenting philosophy and to be so defeated by the basic communication that I need to make it happen is beyond frustrating. It has deeply discouraged me in these past few months especially.
It's not all a total big Fail. We do get along, after all. We do connect. I give him as much physical presence as I can. I give him as much language as I can. And we are a happy family. But sometimes I look at my hearing friends with their hearing kids--parents and children who speak the same native language--and wonder at the ease of it all. To just talk, effortlessly.
He shuts his eyes. Bam. Communication stops. He glances away from me, focusing back to his play. Communication stops. Sure, he might pick up more than I think peripherally. But it is unnerving to have the eye contact lost. The conversation could just be small talk about his play, but it is lost mid-sentence. Is my signing that weak? Do I not have the persona to indicate that I'm talking to you? Ellis seems to think that I can only hear him if I'm looking at him. He screams my name while I am driving until I glance back giving him the visual acknowledgment that I hear him. (Dang! We need a mirror!) He also thinks that if I don't acknowledge him the split second he says my name that I must not hear him, so he repeats it at blood-curdling volumes, until I can turn to him. I'm rambling a little. This summer has been a roller-coaster. My nerves feel shot from his screaming my name, though it's getting a little better.
He's changing socially. We were at a birthday party with all hearing kids, kids he's known since infancy. Another guest, another little boy, ran up to Ellis, hi! what's your name? Ellis didn't know what he said. How much do I step in to intervene? Do I translate for E? Let it go and watch him slip into isolated play? Do I go through the conversation for the bazillionth time? oh, hi. His name is Ellis. He can't hear you, so we talk with our hands. can you say 'hi' like this? Some kids get into it. Some feel awkward and back away. Bless the little British kid at the park the other day who made fast friends with E despite his curious quality.
How do I balance it all? As a mother I want to protect him from all this. I want to make a world that fits him perfectly. I don't want to have to teach him how to negotiate through languages and worlds. I wish I had more to offer him. Yet at the same time, he's doing a pretty good job. Sometimes, I just have to stop and let go. Let him run ahead, trusting that he'll turn around. After all, I am not in control. The God who gave me Ellis also has Ellis perfectly in His arms.
Comments
Mostly lots of hugs for you.
Mostly lots of hugs for you. And I'm exhausted for you. And I really can't wrap my head around all this means for you. Now I'm going to pull out itty bits of encouragement. Your description of his turning his head from you while you're talking? Actually sounded very familiar. And sounds like a boy I know. I'm in the midst of a big point, talking directly, making eye contact, thinking my boy is right on board with me. And he looks away and he just starts talking with a whole new idea. And moves on. No language barrier here. We speak the same language, and in much the same way. But the boy breaks away, changes the subject, moves along without me.
And maybe I'm hearing other bits of that in what you're saying. Other super normal things that happen in hearing-hearing families with no language gaps. I say this not to minimize your experience, because again, you all have challenges we don't have here--language and communication is definitely not one of our challenges--but I want to, hope to, give you some reassurances that not all of these challenges are rooted in the communication thing, so, consequently, are not a function of your failure as a parent or an ASL-learner. Just part of the developmental ways of these crazy creatures. I hope you get what I'm saying. Mostly I'm exhausted for you. For this one more unknown to negotiate in the parenting world that is full of giant question marks. And now I go back to the hugs. ((you))
Oh dear, it's a beautiful, if
Oh dear, it's a beautiful, if a bit painful, post! I agree with Rylee that even not having the communication problem that you have sometimes it's hard to get through to the boys.
And the constant, loud screaming of my name? CHECK! We get that too. Even after we scream (and they here) "I'm coming" or "Wait a minute! I'm busy!"
"Mommy-mommy-mommy-mommy" also drives me nuts many times a day. Sigh.
So, I understand how much harder it is with you and how heartbreaking it must feel to think that his communication needs far exceed your ASL abilities (hug).
Anyway... I feel ashamed (once more) that you guys live so (relatively) close (I guess that when you move you'll be farther away) and not have had you over yet. Hopefully we'll get around to doing it before we move (if we move, if K gets a job next year... ah, the dreamed job!).
Boy what you wrote sure rings
Boy what you wrote sure rings a bell. My daughter is now grown and in her twenties but I remember when she was four years old. I felt that way many times. The feeling of inadequacy is not unique to hearing parents of Deaf children....but through establishing a network of Deaf mentors and friends...this will subside and your confidence will grow.
Lots of times hearing parents grow up in language with their Deaf children but sooner or later our kids are going to pass by us in their first language... our 2nd language ASL. That is normal and that is awesome! I found out that by keeping myself and my daughter around fluent ASL users including peers and adults kept me learning the nuances of ASL and kept her just speeding along in language.
As your child matures, he will learn the appropriate ways of getting attention. But you can also start now by modeling for him appropriate attention getting techniques that don't involve yelling your name till you look.
Deaf children look away when they are not interested or when they are trying to avoid what you are saying. Hearing children do the same thing only they just tune you out. Believe me....this will happen more especially in adolescents:))
Later when she entered school, I made sure she was immersed in a signing environment where she had teachers who were Deaf and Hearing fluent in her language. I always had other Deaf parents that helped me along when I was stuck on how to communicate an idea with my daughter.
It is not always easy for hearing parents to find their networks. It takes some perseverance including finding the right schools for our children and the right communities in which to live that meet the needs of our children. But no matter the sacrifices, it is so worth it in the long run.
You are doing a terrific job with your son and someday he will thank you for allowing him to be bilingual. Don't stress about what you are experiencing... What I learned is that my daughter ,as she grew in language, became my teacher not only for accessing her language but for gaining knowledge of the Deaf world that was so comfortable and natural for her. This is what bilingualism is all about....learning to embrace both English and ASL and Deaf culture and Hearing culture. Our Deaf kids and us Hearing parents can embrace both!
Bridging both worlds. And you are doing just that!! Bravo!!
Thanks, Sue. It's great to
Thanks, Sue. It's great to hear from parents whose kids are grown. :)
We are part of a great Deaf school, that has a really good bilingual program. We are very blessed to have such a great resource. It's really helped us find that little bit of Deaf community that helps SOOO much. :)
Beautiful post, J. You have
Beautiful post, J. You have different challenges with E, but I bet in the long run the extra effort both he and you put into it, will bind you closer to each other. The thing that binds you together is the love, not the language. You're doing a wonderful job.
I am so glad you blogged
I am so glad you blogged about this. I've been having so many of the same thoughts this summer. I am so aware that I am not using ASL with him, but just simple English words signed. And to have him respond to my simple sign with his vigorous, extended ASL replies is just heart wrenching. During his signed soliloquies I smile and nod with enthusiasm or dramatically shake my head in empathy, or open my eyes wide in expectation and interest, and just hope that I have chosen the correct response. But of course, he turns away at some point, and well . . . communication over.
Soooo, do we have a plan, Stan? Here is what I know so far:
1. You are moving closer to school which has many advantages, including reduced travel time, more opps for you and Hubby to be involved at school, more opps for Ellis to have his friends over to play
2. We will soon have an ASL signer for church, and I hope I can co-opt some of her time for private lessons for some of our church friends and family. (I can see it now: Signing Sundays at Grammy's!)
3. The LORD said to Moses, "Who has made man's mouth? Or who makes him mute or DEAF, or seeing or blind? Is it not I, the LORD?" The same LORD who has Ellis in his arms is not limited by our boy's deafness as we are. And he is the Father and Brother and Friend that we must point Ellis toward for his total satisfaction in this world and the world to come, and it is His irresistible call that Ellis can hear.
You know I love you like my very own daughter, and you have me in your corner.
Ah, yes. My mother will
Ah, yes. My mother will totally relate to your frustrations on communication issues between a hearing parent and a deaf child. The eye-closing thing? I did that. The screaming on top of my lungs until my mother looked at me? I did that. It was not until later that I realized there was a bit of a cultural clash. My son closes his eyes on me too and I try not to resort to using my voice. Instead I wait until he's ready to listen and then sign to him. It takes immense patience to wait for any 4 -year-olds, deaf or hearing, to be ready to listen! =P I saw a Deaf family struggling to get their deaf kids to look at them so it seems to be a struggle for both hearing and deaf parents with either deaf or hearing kids! ;)
The screaming bit, I realized that my mother didn't know that I didn't know that she was listening (when I was speaking to her). So I would suggest giving hand signals, the "wait" finger or something to acknowledge that you heard him and will look soon, after you are done with whatever, when you pull over, etc. Also, my mother would often be doing something and say "I'm listening to you" but she was not looking at me. Not looking at a deaf child is equivalent of not listening to them thus the need for hand signals for acknowledgment.
You and Chris are doing a GREAT job. I love that you are doing your best to be a bilingual family. It's not easy finding a balance between the two worlds. We are also trying to find a balance for our kids because they *are* a part of both worlds as well. Hang in there! =D
I agree, this was a beautiful
I agree, this was a beautiful post. It's something I never thought about (the relationship between a hearing parent and a deaf child) but I'm glad I did!!
I had a bunch of screamers
I had a bunch of screamers when they were little. Except in my case, they really HAD to scream to get me to hear them. Eventually, they grew up, the screaming stopped and now they just throw things in my direction.
When the kids are little, it's so easy to get away with stuff socially-- kids play and they don't care much about the social connection. It does get tough when they get older, and especially challenging in middle school and high school. What you do is equip your kiddo with some amazing advocacy skills and the self-esteem to use them.
Thanks for writing this post.
Thanks for writing this post. I can feel your frustration here, but I agree with the others that a certain beauty shines through. Maybe it's just your honesty, or perhaps it's the profound love of a mother for her child. At any rate, I feel educated and more compassionate after reading this post.
Beautiful post. Lots of
Beautiful post. Lots of understanding and even commiseration from my heart parenting a 4yr old girl, all hearing. :) you amaze me with your parenting. I even envision that is a lot closer to perfect than mine is, despite your extra challenges.
Oh, and perhaps remember that Ellis is in a way a TCK as well.
Hi, You are doing a fantastic
Hi,
You are doing a fantastic job and trying your best to communicate with your son. That is important. Boy are very active and we got the closing of the eyes too. As your son grow up he is really going to appreciate your communication efforts.
Our whole family took signing classes as soon as we had the opportunity and I continued until our son went to university. ASL for a young child is very different than ASL for a teenage. As he was growing up my son did teach me ASL too.
Again you are doing a great job! Get your entire family involved in learning ASL. When our son was a teenage, we would say "our Deaf child listens more than our hearing child." That was the constant communication paying off!
Raz77
www.deafparenting.com
www.raisingdeafchildrenpodcast.com
Hi, I have a daugher who is
Hi, I have a daugher who is nearly five, and has been deaf since she was 18 months old since contracting bacterial meningitis. She went undiagnosed until a year later, and was implanted with a CI 8 months after that. The thing that I am still struggling with, is her screaming at me. Sounds like such a simple act. Yet I'm on my own with 2 other children, and her screaming at me all the time, every day, wears me down. I am trying to be soooo patient, and making her say "mum", asking her what she wants (she now has about 145 words that she can use in context) yet she is still reverting to screaming, which is what she learned from when she first became deaf. If I don't respond at once, she starts to slam doors, overturn furniture, & destroy things. After a day of this, my patience runs out, after several days of trying to cope, I am screaming back. I'm sure that my neighbours think I'm loony, but I don't know how to cope with this situation. I've recieved advice from parents who have had hearing children, and to tell the truth, I think I've done a very good job of raising my other two children very well. They are polite and respectful. But her behaviour has me at my wits end. I have talked to child pyschologists - they recommended time out in her room and explain why. I can't catch her to put her into time out. She runs away from me, and laughs when I am running around the garden after her. Control over the situation for me - nil, control for her - game, set and match. Do you have any suggestions?
Michelle
Michelle, wow, that sounds
Michelle,
wow, that sounds really hard. Screaming is very hard to cope with. It sounds like you have a lot on your plate and are doing admirably.
The first question I have is how do you communicate? Do you rely solely on the CI? Do you sign at all? I realize that deaf education is very diverse, and I totally respect each family's decisions to do what they think is best. I will say that for us, signing in addition to the CI has been indispensable. Especially in discipline situations. I once herad an older deaf child who is extremely skilled in auditory/speech skills with her CI but also a native ASL user say that she understands mostly fine with just her CI but with signing, there is no question. When I need to communicate with Ellis seriously, like in a discipline situation, I sign first. For us, in that moment, communication in his most comfortable language possible is of highest importance.
I don't know your situation, so I don't know where or if signing figures in. I was reflecting on what works well for us. I am also wondering if she is using screaming to leverage control because she feels some loss of control in communication. We have to work so hard to give deaf kids all the language that a hearing kid just picks up. I wonder if you could give her some particular phrases that would more constructively express her feelings. Or if she starts to act up give her some emotions faces to choose from. Maybe with a broader vocabulary of emotions and needs, she won't always use screaming to express herself.
Ellis doesn't scream so much anymore (now it's fire truck sirens all. the. time. gah!). And I'm trying to think of what we did, but i think it's pretty much what we still do even with our 18mo hearing child, who's just learning to talk and to sign. We give them words to say instead of scream. For example, "Help, please!" is a big phrase in our family. I say "no crying. say 'help, please'," or whatever appropriate phrase. And we do this with both English and ASL for both deaf and hearing kids!
Those are just some initial thoughts without knowing more about your family. I hope it's helpful. As I'm sure you know, communication is key to getting through to kids, and when you factor deafness into it, you have to work so much harder. My sympathies entirely.
Hi Diber Thanks so much for
Hi Diber
Thanks so much for your response. We use very, very little sign at all. The auditory/verbal centre that we go through are very strict as far as no signing. They want her to totally rely on her CI for language development, and we have been using this process since she has been implanted. Some days though, I think the easier route would be to learn ASL and have 2 modes of communication. It's a very tough path to rely on auditory/verbal alone, and when I made the decision, at the time it seemed the most logical. Now, I'm not so sure. I know that some of Jaida's behaviour is age appropriate 4 and a half year old tantrums i.e. not getting her own way, but combined with the screaming - oh my god. Unbearable. I think it is the feeling of helplessness, and the feeling that I'm failing her as a parent that makes it so hard. I will definately implement your suggestions as to emotional faces, and a certain phrase. We use the wait sign, however, she chooses to ignore it most the time. Although she certainly expects us to do it! Thanks, I really appreciate you taking the time to write. It's a good feeling knowing you are not the only one going through something like this.
Many many thanks!
Michelle
Michelle, I had a couple more
Michelle, I had a couple more thoughts. I just reread through some of the comments to this post, as well as your comment.
One thing that struck me is something that the commenter Keri (a Deaf friend of mine) said:
"The screaming bit, I realized that my mother didn't know that I didn't know that she was listening (when I was speaking to her). So I would suggest giving hand signals, the "wait" finger or something to acknowledge that you heard him and will look soon, after you are done with whatever, when you pull over, etc. Also, my mother would often be doing something and say "I'm listening to you" but she was not looking at me. Not looking at a deaf child is equivalent of not listening to them thus the need for hand signals for acknowledgment."
Even if she can hear quite well with the CI, there are some directional issues such that she really might not realize that you heard you. Maybe at a neutral time you can sit down and discuss with her a way to let her know that you heard her and will take of her as quick as you can. Like a high-five or something.
Something that helped with car screaming is explaining to Ellis before we left in the car (usually after he was buckled in) that we were going to be driving (in a lot of traffic, in rain, or whatever) and that Mommy really needs to pay attention (we talk a lot about safety etc) and will help him/talk to him when we stop. And then help him find some activities to do in the car to help him be patient. That has has helped tremendously.
Also, I find time-outs pretty much useless. For us, sometimes we all take a break, and I sit down with Ellis and do a quiet activity (read, paint) for a few minutes. It also helps me scream less (I am sadly very short-tempered). Sometimes we all need to just take a break. And sometimes you just have to wait for the kid to be ready to listen. I'll say, you sit there, I'll sit here, when you're ready to talk, you may come over here.
Anyway, I'm just babbling on. I hope you can find even a morsel of helpfulness. Raising kids is just plain hard.
I hope it's alright if I hop
I hope it's alright if I hop in for a moment... Michelle you didn't say how you communicate with your daughter. Is it through speech only? It sounds as though she is frustrated.
At the age of 5, children should be reaching language fluency (whether in spoken language or sign language) and if she only has a vocabulary of 145 words that will cause a huge communication gap and make her and you extremely frustrated and make it more difficult for you to discuss her behavior and set her on the right track.
Just a thought.
Hi Alicia We rely on
Hi Alicia
We rely on auditory/verbal alone. And yes, she is definately frustrated. We both are. She only has about 145 words, as when she became deaf at 18 months old, she lost all her speech, (apart from screaming!). She became deaf in Sept 2006, was diagnosed profoundly deaf December 2007, and implanted July 2008. So she basically lost 2 years of her life as far as speech goes. I also had a huge battle after her implant, as she rejected wearing her processor for nearly a year. It's only in the last 6 months or so that we have made any real progress. So it's been an extremely long and difficult road, with many challenges and roadblocks at times! She is due for her 2nd implant 8th January 2010, and it's going to be interesting as to how that development goes!
And yes you are right. The lack of vocabulary makes it extremely difficult to explain things to her. I have to assume she understands, but, who knows? It doesn't change her behaviour, so I end up resorting to lots of talking whilst gesturing to her. I have been thinking of learning ASL to make the communication gap smaller, and make it easier for the whole family.
Thank you for your comments. I appreciate it more than you know!
Michelle
Sounds like you are using
Sounds like you are using your snow day for the same thing I am--catching up on the blogs I enjoy reading but can't ever find the time.
I so identify with the frustrations you were feeling back in Sept. and might just cycle past again on the spiral staircase of life. I know I cycle past them all every few months, get a few months of cognitive rest about the issue, only for it to resurface in a slightly different form a few months later.
Does Maxim scream? Oh, yeah. Sitting right next to me on the couch and right in my ear. Ouch. That was today--my ear is still ringing. He thinks when he talks, anyone he is thinking of can hear him at any time, no matter where they are in the house (then he gets mad that the person didn't respond appropriately--meaning acquiesce to his every whim). It is more than just an annoyance--it shows what they just don't get, what they have missed. Of course it makes me wonder what else he has missed and needs a private tutorial on, or sixteen, maybe sixty private tutorials. To me it is annoying, but to others it is just plain weird, especially another five year old. We were at duPont playground about six weeks ago and this little boy who had been bitten by a dog in his face ran up to Maxim and the two of them played for about 30 minutes. Blissful, childlike play--running around, yelling to each other, laughing when one of them slid down the slide really fast and fell on his bum at the bottom, copying each other. This kid was so sweet, talking to Maxim, listening to his jibber jabber that most kids would say, "What are you saying?" or even worse, they would go right to me as if maxim doesn't count, or the worst--the turn around and ignore treatment. The 30 minutes gave me hope that while most kids, the vast majority of kids, will not have what it takes to be friends with Maxim, there are kids that do and will be his friend. I hope Nathaniel will be that kind of kid because of the blessing of having a brother like Maxim.
And oh, the communication. To me the difficulty in communication (which is huge) is compounded by the anger that I feel and he must pick up on when he starts to ignore me (closing eyes, pulling off the headpiece, looking away--it is all an integral part of our communication). That is totally a me issue: my anger, my need to be listened to/respected, my fears that I am actually not worth listening to. I actually think he enjoys the control he has over me in that one area. Which of course leads me to the main question of my life right now--Now that he tells me he loves me, does he really love me?
And the balancing of safety for him or the other kids with encouraging him in something he is doing with love, but totally inappropriately. It is the same with hearing kids, but they are able to respond so much quicker. Often by the time I get to Maxim to get his attention, I could have spoken several whole sentences. And by that time, I am so frustrated that I have to run across the room when he is too vigorously petting the cat for the 10th time that day that it is written all over my face. It is just hard. Really hard.
A friend told me one thing that has helped me so much in the past six months of so since she told me: Do not grow weary in doing good. I so need that encouragement. It is good to correct him without my own baggage. It is good to encourage him even if it takes getting up, walking across the room, getting his attention, and making sure he understands what I am happy about (I know I am woefully bad at this, because I am so worn out from the drama of running across the room to do the same thing when he is beating his car on the piano, or reaching to get an ornament off the tree while standing on a step stool, or blissfully breaking something when he is focused on something else. So I remind myself when doing the right thing just one more time seems overwhelming and distasteful (wouldn't it be easier just to let it all go, have a conniption and get all my own frustrations out by yelling or banging around or whatever)--God can really help me to do good in spite of my bone-weariness.
I love how involved you are in the Deaf culture and really wish for the time in our lives when we can focus on that more. This past year has been so overwhelming for us in adjustments and surgeries. I don't think I told you that Maxim's left implant got infected over the summer and after three surgeries and many weeks of iv antibiotics he was explanted two weeks ago. After two weeks, he looks better and feels better than he has in months. We are so happy it is out, but it has been an insane last semester trying to keep up with the kids' schooling and Maxim's appts, surgeries, medications, therapy. I'm sure you've been busy, too with moving and the usual challenges of raising two kids.
Blessings, J!
Martita
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