A recent article by Gael Hannan, written in May 2013; talks about families, communication, and the Deaf and HOH person who is surrounded by hearing family members. Her full article is posted here: http://hearinghealthmatters.org/betterhearingconsumer/2013/hearing-loss-a-family-affair/. In it she speaks of a need for workshops or programs for the hearing family members on communication strategies beyond the ASL courses, and what is suggested by the speech pathologist or auditory verbal therapist. Particularly for those who are adults, for partners of the Deaf or HOH person, so that they can hear from someone outside the relationship or family, in an unbiased way the various strategies to use, and the communication needs of their partner.
Reading this prompted me to think about my family, and the communication issues, past and present, their roles, and mine. Being a Deaf person surrounded by hearing family members is complicated at its best, and frustratingly heartbreaking at its worst. It changes constantly, the dynamic between the Deaf person and their parents and siblings; through infancy, to childhood, to teenage years, and finally to adulthood. Until I read this article, I had not really given too much thought to my own family dynamics, and our roles regarding my deafness over the years, or to past relationships and my current family dynamic.
Now that I have given some thought to this, I have realized that until I reached adulthood, everyone around me was fairly accommodating in terms of my communication needs. They ensured I was lip reading them, they came to my room instead of calling for me, they helped me with phone calls when I attempted as a teen to start handling calls that were important in my life. That’s not to say that my sister (younger by a year) didn’t take advantage of my deafness in our fights and say things she knew I would miss. My youngest sister by twelve years didn’t grow up learning to accommodate me, as she forgets at times that I still don’t always process everything she says; and inadvertently complicates things by speaking too quickly, and gesturing (which is distracting, but I’m also bad at not gesturing when I talk). My parents are still really good at ensuring I understand them, but even at times, get frustrated with me.
Still, over the years and now, as an adult, from family, my ex husband, my current hubby, and friends, I will hear :”you were looking right at me,” or “you were participating”, or “listen”, “concentrate on the conversation”, and so forth. It is hurtful to hear these things being said, it’s frustrating, and breaks my heart because it isn’t my fault I am Deaf, or that I’ve coped or faked so well all these years that they forget I still need accommodation. This is even with my telling them directly, when I miss something, or ask for clarification, and even explain that I am having an off day with listening due to feeling ill or distracted. I’ve always been responsible about communicating when I think I have missed something, that when there are times I thought I got everything, and later learn I hadn’t, it’s very hurtful to be blamed for the misunderstanding. I simply thought I had a good comprehension day or moment. I thought I had been successful, and was feeling good about it. To find out later I was wrong and get yelled at for it, when I obviously had an APD moment through no fault of my own or theirs, is hurtful, demeaning, and heartbreaking.
Sometimes no matter how much I focus, nothing gets processed. The brain simply didn’t function at that given moment. Sometimes it’s the whole sentence, a single key word, or worse, the whole conversation. I recently missed part of a conversation because I was feeling sick, and yet I was looking right at my husband, focused, and responded appropriately to it, and still I missed a key piece of information about his work schedule.
My auditory verbal therapist says, that if I miss one word, the key important word to the sentence, then I’ve gotten myself lost. The key word is what triggers the comprehension of the entire sentence, and it’s meaning and information. For example, if someone says “We have five beds in the house.”; if I miss the word beds, then I have completely missed the entire sentence, even if I get the rest of the words. Until I started the auditory verbal therapy, I didn’t understand that that was why I missed things at times, why I was lost in conversations. I simply thought I had an auditory processing disorder where my brain just didn’t compute what I heard. This is true, but I didn’t understand WHY the APD existed and how it happened. My deafness automatically means I have an APD, but my brain can learn to work past it through rehabilitation and training, and support from the people around me.
It is helpful for me to have my daughter and husband be my coaches and attend my sessions, as my therapist explains the how and why I may miss something. I’ve explained to my family members what I have learned, and I think they’re beginning to understand. It still doesn’t mean communication mishaps aren’t still happening, but I think they’re understanding that right now, I am a work in progress, and while still frustrated with me, are just a little more patient and understanding than they once were. There is still a ways to go, particularly with those I am around daily, like my husband, and of course, my children all need to be taught communication strategies as they get older too. Communication strategies like ensuring I can see their lips, have my attention, choosing the right timing (ie not in the middle of changing a diaper), and being patient and giving me time to process what I hear are only just a handful of strategies that a hearing person may need to use with me.
Part of the phases of life is, that children grow up into adults and move away from home. When I left home, my youngest sister was six. My middle sister left home at the same time. Going to university automatically changes the family dynamics, and the ways family members communicate and perceive things. It means that for family members of the Deaf or HOH person that their families no longer had to work daily at communicating with them, and habits learned fall in disuse. That other means of communication occur, like emails, texts, and instant messaging, or Facebook. None of which existed when I left home, as I still had to use the phone, to talk to my family. I realize now this is why there began to be a breakdown in communication with my family, and why I withdrew so much. I had to focus on what was around me, and in university, my communication needs tripled, than it did in high school. It also led to the slow breakdown of my comprehension strengths because there were more demands on me, from the lectures, to the huge variety of people around me, and from being the adult, handling my phone calls for appointments, ordering pizzas and so on. I also know that my children will eventually as adults, get out of the habit of using communication strategies with me, and we may end up having more difficulties through their teen years and adulthood. I am prepared for that, but I hope that by then I will not need to rely on lip reading or text messages so much.
Over time, as I dated, and then went into a marriage with a Deaf man, worked, and started our family, my communication needs and comprehension strengths kept changing. It became increasingly difficult for me on a daily basis to keep those skills up. I became the Hearing Person in the relationship, and responsible for anything and everything related to our children and our household. That particular time in my life, those sixteen years of marriage, I know now was very stressful for me. Even just being a parent automatically makes one more distracted, and more apt to miss things. I also know we had our own communication mishaps and we both had little patience or understanding for the other during those times.
Dating is a whole other topic, so I will cover that in another post, but then too, there are those issues, and moments. Not exactly fun either, as a teen or as an adult.
The funny thing is, I think my current hearing husband needs his hearing checked, because I find myself repeating, and having to ensure I have his attention. Lately I think his memory is also going, because I think I need to start texting important information like family events or plans I have made. I am sure that as we get older, I will be finding myself using communication strategies with him, that need to be used with me. My husband, when that time finally comes, may understand my point of view, because he will experience those moments of APD too, simply because he got OLD, or his hearing got damaged from his line of work.
I do agree with Gael that all families need a Communication Strategies workshop, where they learn how to accommodate their Deaf or HOH family member, and how to make it a lifelong part of their lives. Many people lose their hearing for various reasons, and more commonly through age. As adults age, it’s just as important for the partner to get some training and insight, as it is for the adult losing their hearing and having to learn to lip read, learn coping strategies and start wearing hearing aids. So why isn’t this part of the rehabilitation process when it is learned that a child or partner is Deaf, or lost their hearing? I think it is time for such workshops and “training” be available for the hearing parents, siblings, grandparents or partners, and even children. It shouldn’t be so frustrating, painful, disheartening for the Deaf or HOH person to communicate effectively with their loved ones on a daily basis, yet it is.
Communication, as Gael said is a family affair. Everyone needs to learn how to communicate with the Deaf or HOH person in the family, regardless of the means needed. ASL is just as important, and family members need to learn, become proficient, and maintain that even when the person becomes an adult or leaves home. Or when someone in their family becomes Deaf suddenly and must learn how to cope.
Put yourself in that person’s shoes, and imagine your life as a Deaf person. Or better yet, put ear plugs in your ears and wear them for a week. I guarantee that you will gain just a little understanding of how hard it is for us, the Deaf, the HOH person to communicate and comprehend everything daily. Communication is not only a Family Affair, it is also a Community Affair.
Added: my next post on Communication Strategies, should be read by all family members.