Social Issues for Our Kids

Dear Hands & Voices

We have a son with a severe hearing loss who is mainstreamed.  He is a 2 nd grader and the only child with a hearing loss in his school.  He is in a private Jewish school learning a half day English/half day Hebrew.  Academically, he is excelling in the top of his class. However, typical of children with a hearing loss, interacting in group situations, 'jumping in'to new social situations, and so forth are difficult for him.  We encourage a lot of one on one playtime so that he can develop his relationships (although I find that he and I are the ones to initiate the play date, as opposed to the other parents). The play dates are always successful, and yet, I'm not sure why the other parents don't take the initiative. Although doing well academically, I know that our son's incidental learning and conversational skills aren't quite at par and the "language gap" seems to be widening with age.

Overall, he is engaging and well liked by everyone.  We are able to observe him in a variety of social settings and witness the various problems.  We try to take some of these situations and learn from them (e.g. what was our son's response or reaction, his language use (or lack thereof) and behavior as well as observing the other child(ren).  We reinforce the positive interactions; and talk about ones that didn't go so well to figure out strategies that would help the next time around.  Of course, we can never predict what is going to happen; but if we can anticipate some issues, we can remind him so that he can integrate the new skills/behaviors with the new situation or environment. 

While we have absolutely no concerns about his academic abilities or charming personality, we would like him to meet other deaf/HH children with whom he could socialize so that he is on the same level "playing field." We would also like to learn about summer camps for deaf/HH children for "social immersion".  Based on my research, many of the camps are in the US and are limited to American citizens.  An ideal setting would be a "family day camp".  We are open to any mode of communication, be it oral, signing or both.

A little bit about our son's background...we picked up on his hearing loss early and he was aided by 9 months.  We have used signing and auditory verbal therapy.  Those modes are not typically used together, but we wanted to ensure that our son would have language while encouraging the oral development.  We believed that eventually he would choose for himself how to communicate. He used lots of signing until speech and listening skills improved, and then nearly dropped all signing.  AVT was dropped during preschool when we were told that he no longer needed the sessions.

An interesting note is that he seems totally dependent on listening, as opposed to watching people's faces.  We have just started and encouraged the development of lipreading skills and support his renewed interest in signing.  We think the visual focus is important for socialization, 'reading people', body language, showing interest, etc.

It is important to note that the point of this letter is to discuss a very specific topic and the challenges therein.   I didn't talk about our unqualified and enduring love, pride and joy of this truly special little boy; his endearing qualities that brings sunshine to every day or those moments that bring both tears and laughter-because raising all of our kids is a challenging, adventurous, but hugely rewarding experience.   We are immensely proud of our son.   But we are cognizant that he's really in a social 'nomansland both within the hearing community and the deaf and/or hard of hearing population.  It is to this that we direct our concerns right now.

We are looking forward to ideas, advice, resources and web links. .
Canadian Family

Responses from the field:

Dear Canadian Family:

Socially, I think sports can be the great equalizer.  That said, I hear from so many parents that there is very little reciprocity with in school-aged hearing/deaf kid relationships.  Like you, I've sought out camps (Aspen Camp School for the Deaf starts at 8 yrs of age-an incredible experience) and local networks.  Hands & Voices has helped a lot.  Also, my son has a CI as I mentioned and the Rocky Mountain Cochlear Implant Center has recognized the social needs of their clients, so they have social events regularly for the kids to attend.  The parents often take turns hosting all the kids for pizza parties, etc....

Another thing I've tried (with pretty limited success) is to share my feelings with the other adults (at church or with other team moms during a game or practice) about my son's social isolation, in hopes that that would illicit more party invites, etc....  I've asked his mainstream teachers to pair him with more sensitive hearing kids, and to consider always whether he's being included in the social activity of school.  It's been my experience that there is no silver bullet, and that at least for my son, it's been incredibly important for him to connect to the deaf community where he's more confident, more "in demand", and less left out of the communication going on around him.  While he has a strong affiliation to hearing culture through his family, school and sports, he loves how comfortable and included he feels when surrounded by other deaf kids.

For some kids, peers are whoever else likes "tennis," but for others, they need to connect with someone whose experience of life is like their own.  This is true for hearing or deaf people.  It's where we get the validation we need to feel secure and supported through this challenging journey called life.  I would follow the lead of your son and watch for indications that he's feeling left out or lonely.  Ask him how he feels about his friends, and whether he'd like more time with other deaf kids, or to work on his social skills to improve his connections with hearing peers.  He's at an age where he needs to develop more mature relationships with peers, versus the side by side play of early childhood.  You're very on target to be concerned with these things now, and step by step, you'll find your way if you let him lead.  He sounds like a bright guy and a lucky one, too, to have parents with your sensitivity and awareness.

If you're looking for hard answers & absolutes, this email response will probably be a disappointment.  I wish there were hard answers that provided a concrete solution to the challenge of social isolation.  Instead, what I've found is that we all make up our answers along the way, based on our kids and the resources available. If the resources are too minimal, we have to do something about that instead of ignoring that reality for our children.  It's good to share with each other whatever works, so I hope you'll stay in touch.

- Leeanne Seaver

Another parent shares her story about what has helped their family:

Being a parent is the hardest job that I have ever experienced.  Being a parent of a special needs child is even harder. I am the mother of two wonderful, bright, and incredibly handsome, teenaged sons, both of them are hearing impaired.  My eldest son, 17, is a senior at East High School, which is the center high school for deaf students in Denver, Colorado, and my younger son, 15, attends George Washington High School where he is a sophomore.  Both boys have a severe-profound loss in both ears and have gone through the oral program in Denver Public Schools.  They get excellent use from their hearing aids, have good speech and are mainstreamed for their classes.  Unfortunately, as I see it, the boys are neither "fish nor fowl"; they do not fit in totally with either the hearing or hard-of-hearing populations.

There is no history of hearing loss in my family, at least not as far back as anyone knows. As a result, there was no one in my family circle who could help me understand how to deal with or to understand the special circumstances surrounding deafness.  I felt and was at the mercy of the professionals who diagnosed and assisted with the treatment of my children.  Fortunately, I had wonderful people to work with:  Sharon Prairie was the speech therapist, and Lisa Martin was their audiologist.  I cannot thank them enough for the support and education that they gave to me and to the boys.  Eventually, the school systems took over much in terms of the educational process.  Again, I have been lucky and feel that my sons have been treated well.  The problems have been helping the boys find a place for themselves with their peers, which I think is always a weakness in the school environment.

There is another component though, that is not addressed through education, and that is the psychological and emotional aspects of deafness and how it affects the parents and the children.  As a mother, I have struggled with guilt and grief and anger, which was something that I have had to deal with through my own counseling. I used to ask myself if there was something that I should have done or could have known that might have protected my sons.  These are answerless questions.  At times my life is harder, too, because of my sons' deafness.  I constantly have to stop what I am doing if I need to ask them a question or tell them something and they are in another room.  It is more difficult to communicate over the phone if I am not at home.  

The frustration gets to me:  I am a single mother and so all the responsibilities fall on my shoulders.  When they were younger, I had speech therapy for each boy every week, and they had constant ear infections that required doctor's visits. I often asked how I could do it all and continue to maintain a full-time job. My heart breaks at IEP meetings, when specialists tell me how well (or how badly) my sons are doing in an environment that does not adapt easily to any student's special needs.  I know that this is not a temporary condition and that everything they do in school is going to be harder for them because they cannot hear.  I think my sons are braver than I because they deal with these things on a daily basis. They are the ones who have to deal with people who treat them as if they are stupid because they are deaf. There are times when I need to be assertive to demand that the playing field be equalized for my children, a role which I do not like to play.  For them, it is something that they must deal with every day.

How have I dealt with this?  I believe in counseling and have found it very useful for me and my sons.  It has helped me deal with my grieving and guilt to have a therapist who can teach me to put things into a perspective.  I have learned to accept that it is okay to be angry about my sons¹ hearing loss because it is unfair for them and for me. My sons have gone through periods where they have been incredibly angry about being different and about the fact that they need modifications to compete with hearing students.  Counseling has been helpful to them as well.

Selecting a therapist is very important.  For many therapists, their experience with the issues that I (and others in the same situation) face is only academic. They are empathetic and can see how devastating this situation can be, but they do not have the first-hand experience.  I have found that there are some professionals who specialize in dealing with certain issues and who have a better understanding of deafness or special education; this has been helpful for us because I do not have to educate the therapist about annual meetings or IEP's or IDEA.  I really think that the most important element in selecting a therapist is what kind of relationship the therapist and client can develop and how trusting the client can feel towards the therapist.   Hands & Voices is in the process of putting together a referral list so that parents can find names of counselors who may be better able to deal with the needs and problems associated with deafness.  I strongly recommend that parents who are feeling overwhelmed or sad, lost or alone, contact a professional for support.

This can also be helpful for our children.  My sons have benefited from the opportunity to vent their frustrations and feelings to a professional.  Sometimes talking to a parent is too difficult.  I cannot be objective about my sons, and they know that.  Someone on the outside can provide a perspective and a listening ear that is often needed.  I hope that other parents and individuals will feel encouraged and supported by what I have written. Our best support comes from each other and sharing our experiences.  I am sharing what has worked for me and my children.

Linda Katchen, Ed.D. is a Colorado Hands & Voices member