The new dad ran in from a long day of appointments to catch up with his baby son and wife, knowing he would quickly return after a fast dinner to his home office to complete the jobs still due that night. This is the life of someone paid on commission in the high season of work’s demands. I happened to be there as a H&V GBYS Parent Guide in those brief moments, and he had many questions for me as about raising and caring for his son, who was recently identified as hard of hearing. They thought they were making good decisions, but how would they know for sure? What are the best practices? Would his son get bullied and teased as he had while growing up? He knew about what to do, but what are the most effective ways to build language and ensure learning? Would his son face discrimination?
I wished I had had these men: Matt, Mark, David, Patrick, Hal, Chris and Tom to pull life-size out of my welcome bag to talk with this young dad. To be honest, sometimes as a Guide I haven’t worked as hard as I should to make sure that fathers are present. After I heard Tom Houston’s presentation at a recent NCHAM conference, I was inspired to do my best to make sure I wasn’t putting up barriers to dads being present and involved in our visits. I posed a few of this new dad’s questions to these fathers of preschoolers through adults – from Colorado, Michigan, Florida, and Arkansas. Curt Lietz, a father and GBYS Guide in Minnesota, wrote about the period just after his daughter’s identification: "I took a businesslike approach to gathering information and preparing for the future. I learned about sensorineural and progressive hearing loss. I looked into amplification and ASL. I studied audiograms—and I studiously avoided my own heart." Pull up a chair as these dads share from their experiences. These are their “unplugged” responses.
Sara:
This dad feels both grief and anger for his five month old son, thinking that he may face a life that is already going to be more difficult than it might look for other kids. What would you tell this dad about how you come to think about your child in the sense of feeling different, being teased or bullied, and yet not wanting to stay "stuck" in those negative feelings?
Chris: We have all experienced the grieving process and everyone handles it differently. Make sure to grieve and talk about things and get the questions answered. Each of my three children has been identified with conditions that are life changing. It is very shocking and brings up a ton of emotions. The one thing that has helped me is focusing on the positive and being very matter-of-fact with things. The concern of bullying is very valid especially when we have seen while growing up ourselves, how cruel kids can be. Our oldest daughter just started fourth grade and to this point has had no issues with being made fun of or bullying. We have always treated the hearing aids as something that is part of her. For her, it is just as normal to put in her hearing aids as it is to brush her teeth. We have always kind of treated this like: your hair will be messy if you don't brush it, you won’t be able to see if you don’t wear your glasses, and you won’t be able to hear if you don't put in your hearing aids. Point being, if you are concerned about it, they will be also. If you are confident and know that this just adds to their beauty, then they will also adopt that same great attitude.
Matt: After a lot of thought about what life would be like for my son,I came to the conclusion that kids can be very cruel no matter what differences others may have. I feel I want my son to be so comfortable and confident about his hearing loss that he will be able to deal with anything that comes his way. If our kids are not confident, I think they will not be able to handle the teasing.
Mark: No matter what kind of hand life has dealt your son, it’s a father’s job to teach by example and prepare him for life. At first I thought life was going to be tough for him but that has since changed. Our hard work at home combined with the work of amazing teachers (at the Clarke School in Jacksonville, Florida) was able to get him ready to be mainstreamed by first grade. It is truly a team effort that is driven by good, positive energy and patience. Teaching him how to handle bullies is the easy part.
Patrick: My initial reaction when I learned my first daughter was hard of hearing was the teasing she would eventually get from other kids and the eventual rejection of her by some shallow man. My advice to this dad now is don't borrow trouble from the future. I now have two deaf/hh daughters. They are beautiful, smart, and very popular at school! I think the schools are doing a better job these days teaching kids about accepting other people’s differences. We are very fortunate to have had the kids born in Colorado. Both girls were using hearing aids by one month and we worked diligently to keep them in their ears no matter how many hundreds of times they took them out. They even used them as a paging device by putting them in their mouths to make them squeal with feedback.
David: I remember feeling similar negative feelings. In time, and in talking to my wife and other parents, I realized that those negative feelings are a perfectly normal part of the grieving process that a hearing family goes through when they learn their child is deaf. My daughter is almost three now, and I still battle those feelings from time to time. Recently, our five year old started kindergarten. While going through orientation and saying goodbye those first few mornings, I felt very similar feelings of worry, but realized this is all perfectly normal for any caring parent. My deaf daughter has as much chance of being teased or picked on for her beautiful head of fiery red hair as she does for the devices she wears or for signing with other deaf children. Creating feelings of confidence and self-respect through self-awareness is important to every child. Coming from a hearing family, I think about myself, my personality, my level of self-confidence and to what extent my parents played a part in developing that. How we instill these traits in our kids so they can learn to cope and be successful may on the surface appear more difficult or challenging, but really just requires a more focused approach.
Tom: First of all, your feelings of grief and anger are very normal, especially when you first learn of your child’s situation, but also, as time progresses and your child grows and you see firsthand (experientially) the struggle that hearing loss brings for them, you will continue to feel these same feelings welling up. So my advice is don’t necessarily try to make them go away, use them to push you forward to finding better and better solutions for your child and other children who have similar challenges. Getting involved in an organization such as Hands & Voices is a great way to help you “work out” those feelings.
We can’t protect our children from the storms or struggles of life, but we can help build for them a better shelter to make it through the storms or struggles. Focus your efforts on this. If you feel you are getting stuck, seek out someone to talk to about it, a good friend, a pastor, your parents or a mentor, someone who has some perspective and wisdom, who can help you work through those things. I think too it is important for a parent and especially a father to know, you did not fail or do something wrong here that caused this. There is always what I call the struggle/reward factor that is going on in life, the greater our struggle the greater also the “richness or blessings of life” that come through the struggle. Without my daughter’s hearing loss, I would have never met my Hands & Voices community and would have missed out on so many wonderful people who have helped us throughout the 16 years of my daughter’s life, who truly have enriched my entire family’s lives in return.
It is a dad’s job to protect his kids, and this is an area that I have always struggled with. We keep them close when they are younger, but as they age our grasp has to loosen as they figure life out. We all struggled and faced teasing and bullies as a child, so it really is no different than anyone else. Raise them as much as you can with the same expectations for responsibility and behavior just like your hearing kids--the difference is taking that extra time to make sure communication is as clear as possible. When the difficulties center on hearing loss or other issues beyond the child’s control, be their advocate but work hard to develop their character and skills so they can advocate for themselves as well.
Hal: All kids, no matter what, want the same thing – they want to make it through their education, make friends, and feel good about themselves and what they can do. We do have to teach boys how to stand up for themselves, what behavior is okay and what is not okay, but we can’t react to everything that happens. Expect that they will get picked on, and teach them what to do. My son confronted a bully by standing his ground and telling the boy “NO” in every way he could and that boy left him alone. In fact, they became friends on the basketball team. Sports can be a big help in helping a child find out what they are good at and joining a social circle at the same time.
Sara:
Women have more ‘permission’ for grief, sadness, anger... and some men think they must be strong for them although going through a lot of emotions themselves. Any advice for a new dad in dealing with powerful feelings?
Mark: Give yourself a time to grieve, to feel, and to express it. One week….one month etc, and then move on. Your child needs you to be strong, confident positive and supportive. Being deaf is not the end of the world. Put together a plan and take the first step.
Patrick: Having kids who are deaf/hh is a challenge but we feel we are blessed with so many great care providers that have helped us throughout the years. We have also met many other parents and children with much more serious problems. This really helps us keep perspective. Challenging? Yes. End of the world? Hardly. My children are the light of my life. Enjoy them while you can!
Tom: Men in general tend to compartmentalize their emotions. In their brains there are a lot of little boxes: a box for their job, a box for their wife, kids, feelings about their job, etc. We tend to only get out one box at a time and open it up and deal with it, never letting it touch the other boxes of our lives, and then put it back on the shelf to deal with again later. When a child comes into our life with these circumstances, at first there is a lot of “trauma and confusion.” A hurricane has blown in and all of our boxes are in a heap and all the lids are off. Over time, you bring order back to chaos, but understand that this kind of thing impacts every other area of your life. You figure these things out as you set things back in their place. That process gives you a chance to work through emotions (if you allow that) but also you will find difficult emotions to be a great source of energy for you to help your child, your wife, and your family to add this news about your child and all that it brings into the journey of your family’s story.
Hal: I had all these feelings when we knew, pretty quickly, that our middle son wasn’t hearing. He had no response to slammed doors and no startle as a newborn, but the docs said “it will be okay.” They wouldn’t test him until he was three years old then (he is 37 now.) First, we go through guilt, but you have got to get past that one. There’s a time for feelings and a time to take action. We got busy labeling the house with all kinds of words as part of the most important thing – language development.
Don’t allow yourself or your son to feel like victims. No matter what they want to do, there is always a way. For our extended family who didn’t learn to sign, Ryan gets out the pen and paper and they communicate at length. People ask him if he would ever want to be hearing, and he says “Absolutely not. I love my life.” Of course there are setbacks at times, but have high expectations of your son.
Chris: Rather than just being the “rock” that nothing bothers, note that this is a pivotal time in your marriage. Your wife will appreciate if you also bring up your fears and concerns. Be strong for your wife and kids but know that being strong means working as a team. The only way to be on the same page is to share your thoughts as well. This may be uncomfortable but will pay dividends down the road. If you don't deal with things your kids will pick up on this as they grow and will affect them. Every child has their own little challenges in life, but at the same time, that is what shapes them as a person growing up. Focus on their beauty and the joy they bring.
Sara:
Because of work schedules, some dads can't participate as fully as their wives in appointments for audiology or early intervention. How do you manage keeping informed so that you are able to share in decision making and not rely on secondhand information from your wife, who doesn't understand all this much better than you do?
Matt: I try my best to make or be a part of every appointment or meeting. If my work becomes a problem then you must rely on your wife to get the information and know that she is going to get all possible information. My wife is very good about making sure I know what is going on with our son and vice versa.
Tom: Every family has to figure this one out. My wife and I use the divide and conquer approach. My daughter had a couple of issues besides hearing loss, so to keep them straight, we assigned to each other who would take her to what kind of doctor. That seemed to work best for us as in those first years we saw up to 14 specialists. I think if you think of it like a football team, you have the head coach, and the assistant coaches. The assistant coaches interact with the players directly and coach them up, but the head coach keeps focused on the big picture. I think that sometimes this model works well. Your spouse may be the more hands on “coach” interfacing with the doctors, but you have a role too, to keep the “big picture” moving forward. In seeing so many doctors in our experience, I can tell you that you can get so focused on getting here and there to this therapy and to this visit, that you can lose sight of the big picture. This is where I think dads can really help: to see where the needs lie and then help to see that needs are met. If something is just not that important, being willing to cut it out of the family’s schedule and worries is also a critical life skill.
Chris: All you can do is do your best. Same goes with your wife. There may be no way to make all or any of the appointments but that doesn't need to limit your involvement. Communicate as much as you can with your wife and make decisions together. If you can’t make an appointment and have questions, simply write them down and have your wife ask them. This keeps you on the same page and continues the education process which will never end. Be involved when you can, that is the important thing. It is very important to continue to be a provider (and very honorable) but follow up when you can and get updated from your wife.
David: More often than not, when I have an opportunity to address a group, I always point to my wife as the champion of managing our deaf daughter’s doctor visits and staying informed regarding early intervention and speech therapy. My wife and I try to coordinate with one another and split our involvement and participation in support groups and attendance at various meetings. Splitting involvement in support groups also has the added benefit of basically doubling our exposure to other people with similar questions and needs.
Sara: Tom reflected that it is not beyond the realm of possibility to have a provider write a letter for the spouse who had to miss an appointment so that a more complete picture is received. “The medical community has to document everything anyway, so putting that into a quick report for a missing family member would not be all that difficult. This opens up the lines of communication for more discussion with the doc, audiologist or therapist once that letter is received. In agreement,
Mark also suggested that if written reports aren’t possible, using video at each session is another option. “That way you don’t miss out on a thing and if you have questions you can always follow up by phone.”
Hal notes that his wife was also responsible for the majority of visits, but saying a great partnership was key to helping him stay up on the latest news. Now with near instant communication (SKYPE, email, texting, video) this should be easier for parents.
Sara:
Is there anything that new dads should know about creating a strong relationship with a son or daughter?
Hal: Get in their business. Stay connected. You won’t like everything the other says, does or thinks, but learning to talk to each other without getting upset is important. All of our kids have been open with us and that connection has paid off.
Chris: Just be a dad and love it! If you treat this as a burden then your child will also. Our daughters have wild colored ear molds and wear their hair back. To them, their hearing aids are part of them and to an extent, an accessory. Let them have fun and be proud. Support them, teach them, have fun, and most of all be the best dad you can. Kids want love, give it to them and enjoy every second. They grow up fast. Don’t get too caught up in the hearing loss; you may miss some pretty cool stuff.
Matt: I did not do anything different than I did with my first son. I do not treat my sons any differently. I think if you treat all siblings the same then you are showing your son/daughter with hearing loss that they are no different (and just as capable) than anyone else.
Mark: Play with your kids. Get down on the floor and make truck sounds and be silly. Ask a billion questions and be very descriptive with colors and sounds. Hard of hearing kids use all their other senses to compensate so feed them.
Tom: The single most important thing that a Dad can do is spend time with them. If there are communication issues, then step up and overcome them. If you have to learn ASL or get some sort of assistive communication device do it to interact with that child. Every child you have needs one thing: that is YOU. Don’t substitute that for anything else.
Sara:
Any advice for this new dad that I haven't mentioned? Things you wish you had known sooner?
Mark: You have more support than you will ever know. From fellow parents, to audiologists, teachers, speech therapists and total strangers that will love your kid as much as you do. Seek them out and let them work their magic in your child’s life.
Chris: Get involved as much as you can and stay involved. I coach my daughters in soccer and softball when I can. Reach out to other dads if you are struggling. There are a ton of resources out there. Find them and see what works best for you and your family. What works for one family may not work for you but be sure to explore. Don't ignore the hearing loss. It’s there and it’s part of what makes our children as special as they are. Reach out and take advantage of everything you can. This is a great way to show support to your kids. Hearing loss is a new and wonderful world that we are fortunate enough to get to know. Embrace it and be sure to be a proud dad no matter what.
Matt: I always thought that our son will be fine because we will do anything in our power to give him everything he needs to be successful in ANYTHING that he wants to do. The one piece of advice I have for any new parent is to make sure you do not settle. If you get advice and you don’t feel comfortable, then get a second opinion. If you don’t like the options given to you then look to get better options. NEVER settle. Your son or daughter is too important to settle.
Hal: It’s important to consider your child’s personality. Ryan was hyper, so we had to be prepared to channel is activity every moment, and even had to sit by his bedroom door or latch the door at times. He was a climber – great for kids but it did scare the neighbors (trellises, roofs, etc.) This dad will figure out that his son will develop normally, with his own personality – but especially with a firstborn, he will have to guard against being too careful. We are so careful with the first baby. It’s a learning process. A dad can give a boy confidence through letting him do things for himself, and teach him how to handle both failure and success. With failure, you dust yourself off, go home, and try again another day. This little boy will grow, he’ll learn, and he’ll be x amount smart (we are born that way). He will learn through doing it. The most important thing, like I said before, is language development. We worked hard to find books that would interest him – any books! We read to him, he read to us, we went to classes; we did everything we could to develop language. Captioning helped him tremendously, and today he reads and writes like a professor and has earned a Master’s degree. Another thing we really focused on was idioms. We learned the toughest thing for a deaf kid to overcome was all the idioms in the English language. We used them on purpose, all the time, so that we could teach him. The first time we used “raining cats and dogs” in a sentence, Ryan went over to the window to look for the dogs, but he learned what it meant.
Patrick: Take advantage of every early intervention that's available. Sign language is a great way to communicate with pre-verbal children, but it is also something you can use for the rest of your life. There are many situations where hearing aids and implant processors are not available. Sock away some extra money because they are expensive even with help from insurance. Rose is on her third set of hearing aids at age eight and Maggie once lost both a hearing aid and a cochlear processor in less than a month! At age six she is on her second generation of cochlear implant headgear.
Tom: Don’t let your life or your child’s life be defined by their audiogram or any other label. They are more than their hearing loss, and you are more than a parent raising a child with hearing loss. Embrace the challenges that come along with the circumstance, but realize that there is way more to life than just this set of circumstances. Again, (for this dad and all the dads out there) keep your eye on the big picture and lead your family to embrace this idea. Set a worthy example for them to follow. You can do this.
Reprinted with permission from the June 2010 MN Hands & Voices’ FOCUS and the recurring column “Dad’s Viewpoint” by Curt Lietz.
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