How the EHDI System of
Care Helped A Parent
See That She IS A Hero!
Last April, I attended the 12th Annual Early Hearing Detection and Intervention (EHDI) Meeting in Glendale, Arizona. To say I was overwhelmed is an understatement. After returning I was asked how I enjoyed my "trip." My response¼ "Well, I felt like I was in college in a foreign country. I learned so much, felt so much, experienced so much, and am mentally and physically exhausted." But before I explain this in further detail¼I feel I need to give you a brief synopsis of why I even was at the EHDI conference.
I am a mother of an amazing boy (Joshua) who is 10 years old. Before Joshua was even born, we discovered he had Trisomy 21 or Down Syndrome. We knew Joshua was going to introduce us into an unfamiliar world but we had no idea that he would be introducing us to the Deaf world as well. When Joshua was born, he passed his newborn hearing screening. At around 9 months, he was diagnosed with a mild to moderate hearing loss and was fitted for bilateral hearing aids. At about age one, he started to communicate with us through sign language. We were thrilled and started to learn sign along with him.
Three years later, we discovered Joshua had a severe to profound hearing loss. Joshua was approved for bilateral cochlear implants, however, within weeks of this approval Joshua was also diagnosed with a neck condition which required him to have multiple MRI's and surgery¼.and MRI's don't work with cochlear implants. Now¼at the age of 10, Joshua communicates solely through sign language. He attends Capitol View Elementary in Des Moines with its Deaf/Hard of Hearing Program. He loves school, books, cats, movies and hugs. He is one of the most loving and happiest people I know. He has been more than a blessing¼he has changed my world and made me a better mother, wife, friend and person.
I am constantly striving to improve, to learn new things and ultimately to make this world a better place. I have been a member of Iowa Hands & Voices for several years and just recently joined the Board of Directors in hopes to assist this group further. My hope was that by attending the EHDI conference I could help/benefit my son but I could also help/assist others who were part of the Deaf/HH community.
As I walked into the Conference Center on April 14th, I was thrown into a different world. Everywhere I looked people were signing. Yes, some were talking but MANY were signing!! I had no idea there were so many people who could sign¼I had always felt very alone in this area. I had also considered myself a fairly good signer. However, when I was amongst all these "professionals" I quickly realized how much I needed to learn and ultimately how much more my son needed to learn.
The conference offered seven different one hour "sessions" which consisted of 19 different topics during that hour. (If you do the math¼that consists of 133 different classes!!) There were sporadic group meetings, four plenary (large group sessions) and over 40 exhibitors. Do you understand why I felt like I was back in college?
I learned so much by attending this conference and struggled to know which "tidbits" would be the best to share with you. Over the past several weeks I feel there have been three main things that have touched my heart, soul and mind. I believe they have changed me and impacted me the most. I hope they will touch you as well.
Tidbit #1: Read with your child at least 30 minutes per day:
I'm positive you have heard this before. And, very possibly you do this already. I won't go into all the data and specifics but there are many very good reasons of why this is important. Prior to this conference, "reading" a book to my son was not an enjoyable and bonding experience. Instead, I viewed it as frustrating, frightening and even devastating. (Yes, devastating.) Since my son communicates solely through sign language and does not have the ability to hear my speech, I knew I needed to "read" in sign language. So, I believed I needed to know how to sign everything and sign everything perfectly. And, if I didn't know how to do it perfect then it was better to not do it at all. Does this apply to you? After this conference, I realized I was so wrong! It doesn't matter to my son if I sign every single word in a book. It doesn't matter if I don't know the signs to something. It doesn't matter if I do it perfectly or if I make mistakes. What matters is that I am spending time with my child and we are communicating with each other in the best way we know how and we are enjoying the moment. Maybe this "tidbit" will help you that struggle in this same way.
Tidbit #2: Deaf role models in your child's life are essential.
I attended several sessions about the importance of deaf role models. The sessions explained that role models who are deaf are very beneficial for the parents, child, extended family and even the deaf mentor. Deaf role models increase confidence, ease grief and or anxiety, help with language, celebrate or embrace the Deaf/HH child's identity and can assist with becoming a part of the Deaf community. As a result of this conference, I am going to be working with another mother to try to start a group which will help connect deaf adults with families of a child with a hearing loss. We aren't exactly sure what this will look like but are confident that it will benefit and possibly even make a life-changing impact on the people involved. I welcome suggestions from those in the field.
Tidbit #3: We are all part of a "Tribe" and we are all heroes.
After I returned from this conference, I was in awe with the realization of the large group of people who are attempting to help our children with hearing loss. There are parents, audiologists, teachers, therapists, doctors, nurses, state workers/officials, Deaf adults, researchers, students and numerous others that spend countless hours and dollars to help our children. There were over 1,000 people that attended this conference and I am certain there are thousands more not able to attend. I was touched when one parent stated, "we are all part of a Tribe and we are heroes." I had always thought I was only one of a few others that were part of this unique world. But, I/we are not alone. Our "Tribe" is large and strong and diverse¼some sign, some speak, some sign and speak, some wear hearing aids or cochlear implants or BAHA's or use no device at all. Some have just entered this world and some have been here for many years. Regardless¼we are all heroes. We are heroes because we view the world a little differently. We know the difficulties and the struggles AND the tremendous achievement when communicating with each other. We value the effort it takes to communicate and read and write and interpret the many sights and sounds surrounding us. We go to great efforts to learn from each other and to attempt to improve our daily lives. I would like to extend a BIG Thank You to NCHAM (National Center for Hearing Assessment and Management) for providing me with an Iowa Parent Stipend to attend this conference. Also, I offer many thanks to Iowa EHDI for helping me with additional costs. If you are able to attend this conference next year in Florida, go! I am very proud and feel extremely blessed to be a part of this "Tribe" and to be a hero¼we are all heroes.
Contact the author through Iowa Hands & Voices or firstname.lastname@example.org