Here’s the presentation that Cara did at the Family Connections 2018 Hopes and Dreams Conference!
If you have any questions, send Cara an email at firstname.lastname@example.org
Access the presentation here: http://scbegin.org/wp-content/uploads/2018/03/Language-Construction-Paper-and-Ice-Cream-Sandwiches_-Making-Learning-Happen11.pdf
Six years ago this month, Mary and I (Cara) sat around a table at our then-favorite eating establishment and met with the leadership of Beginnings, Inc. from North Carolina. Fast-forward to now where Mary and I have provided individualized, in-person education and guidance to 165 families of children who are deaf or hard of hearing (DHH) and have conducted hearing screenings on more than 2,700 children across the state of SC. To be honest, we (Mary and I) didn’t exactly plan on getting into conducting hearing screenings, but being able to fill this previously unmet need has increased Beginnings SC’s ability to impact the lives of children and helped define the essential components in making a positive impact for children who are deaf and hard of hearing and their families.
Introducing….the Beginnings SC Model. It is a best-practice model based on national recommendations and it is what we infuse–past, present, and future–in all of our programs. Identification and Connection with resources must be coupled with Parent education and support and best-practice interventions for the Child who is deaf or hard of hearing; each component cannot subsist without the totality of the Essential Three components.
More detailed blog posts are forthcoming, but here is a brief overview of the Essential Three components:
Identification and Connection: It is expected that 1-3/1000 infants will be born with a hearing loss. That prevalence rate increases to 6/1000 by the time a child enters kindergarten (This is not including the multitude of children who have large gaps in listening to learn language during ear infections!). If one includes all children up to age 21 with hearing loss, it is 9-10/1000, or ~1/100. In SC, our population of children averages around 1.2 million. So it can be estimated that up to 12,000 children in SC have a permanent sensorineural and/or conductive hearing loss. While not the only way to identify a child who has a hearing loss, the 2016-17 Child Count Data from the SC Department of Education Office of Special Education Services (age 3-21) indicates there are 1,070 children with Deaf/Hard of Hearing (DHH) listed as their primary disability on their IEP. Increased identification is critical to the success of these kids. With Identification also comes the need for Connection between that child and professionals with specialized expertise to begin interventions, as well as Connection with high-quality resources.
In tandem with Identification and Connection, Parents need education and support and the Child who is DHH needs best-practice interventions. It is common to understand that after identification, the Child would need resources; a “village” of professionals with the expertise in working with DHH children, individualized plans to identify language and vocabulary delays, and a group effort to target closing those gaps. Hearing loss is a diagnosis that automatically qualifies a child between birth-3 to receive Early Intervention services from BabyNet (SC’s Part C program) because hearing loss–without appropriate interventions–impairs language acquisition so severely that many will not read above a 4th grade reading level. It’s a different process once a child turns 3, but a knowledgeable evaluation team can properly assess the language levels of a DHH Child and ensure optimum progress is occurring.
What is often overlooked–even by Parents of children with a hearing loss–is the education about hearing loss and the individualized guidance that each family should have. Most parents of a child with a hearing loss admit they never even thought about hearing loss before their child. Parenting takes lots of work for any kid; there’s lots of extra “stuff” that parents of children who are DHH have to quickly learn in order for their child to have optimal language development. Parents–and really the entire family– need to know about hearing loss, understand an audiogram, and understand how their child’s hearing loss impacts their child. Parents need to know that there are many ways that a child and family can communicate–American Sign Language, Listening and Spoken Language, Signed Supported Speech, Listening and Spoken Language supported with Cued Speech, or a combination. Parents need to know their educational rights, identify opportunities in the community for support, meet Deaf and hard of hearing adults, and interact with other parents who also have DHH children. Parents don’t know what they’ve never experienced, and I’ve met so many parents that are fast-learners who still struggle to locate the resources their child needs.
So this is just an overview of the Essential Three components that are the foundation of all of the programs at Beginnings SC. Whether it is screening young ones in a childcare program, providing trainings for early childhood professionals, providing parent guidance, or networking with the community, Identification and Connection must be tied with Parent and Child interventions and education as well. As my youngest child says, “More to come!”
Many people throughout the world have dealt with varying levels of hearing loss. I am just one of those many and I would like to share part of my journey through life as a hard of hearing person.
In 1979, I joined the United States Marine Corps, 251 Thunderbolt Squadron. It was from working around F4 Phantom Jet aircraft that I became Hard of Hearing. The flight decks were extremely noisy from the jet’s engines as the aircraft were taxiing up and down the runways. And, it would not be uncommon to find Marines out on the flight decks without hearing protection for various reasons. One reason was there was a lack of adequate hearing protection to go around. And, I suppose if I were completely straightforward, some Marines believed they were invincible and did not need hearing protection.
It is from this experience that I suffered my initial hearing loss and started having ringing in my ears known as Tinnitus. Back then, a Marine never complained about such matters for fear of having their careers cut short. So, we just dealt with what was ailing us and forged ahead. At the time, my hearing loss was only a minor irritant. It was not until after I got out of the Corps that I really understood the scope my hearing loss would have on my personal and professional life.
Shortly after leaving the Corps, I began working for a cast iron foundry / machine shop manufacturer as a Quality Engineer. The inherent noises of the many machines in operation coupled with my hearing loss issue made communication between people on the shop floor and myself virtually impossible. Often, hand signals, trying to read lips, jotting down on paper what the other person was trying to tell me where just some of ways I communicated. Nothing really was ever said to me about how difficult it was for me communicate because I always got the done and done right.
I worked for that company for 17 years before I was recruited by a Japanese Automotive company located in Atlanta, Georgia. One of the reasons I accepted the offer was that after fighting my hearing loss in the very noisy environment of the cast iron foundry, I had started to become depressed. Working day-to-day in a high-level manufacturing environment and not being able to communicate sufficiently took a huge toll on me. Another reason I was becoming depressed was because my hearing was getting worse. It had been affecting all aspects of my personal and professional life for far too long.
Before I left the first company, my then wife made an audiology appointment for me. It confirmed that my hearing had gotten worse. So, with the persistence of my wife, I was fitted for hearing aids. They truly did help me and I felt some certain level of wholeness again. Even so, I could not shake the fact that I was a Marine and Marines were supposed to be invincible.
So, in 1998 I started working for a new company as their Senior Quality Engineer. I had no issues in being able to communicate, even with the limited English that the Japanese management spoke. In fact, they sent me to Tokyo, Japan to learn about the product and the Japanese quality philosophy and management style. What a grand time it was.
Although I had improved hearing with hearing aids and a new employment opportunity, the depression did not leave. Finally, in 2001, I was given an injectable medication to alleviate the symptoms of depression. Unfortunately, I had a severe reaction to the medication and lost approximately 90% of my life’s memories, including all I knew about Quality Engineering. I was forced into early retirement and moved back to my home town and began on the road to try and build a new life. In 2005, my wife passed away from genetic disease called Cystic Fibrosis. In 2013 I moved to South Carolina to start yet another new life with a beautiful woman with whom I was having a long-distance relationship. We have been happily married since April 2014.
Since I have been in South Carolina, I have had three audiology exams. The first was in 2014, where I received a new pair of hearing aids, and the last in July 2017. There has been a fairly significant change since 2014. The 2017 exam showed that I have severe sensorineural hearing loss. I now have only 40% word recognition in my left ear and 92% in my right ear. Although my right ear has 92% word recognition, my left ear tends to cancel what I hear in my right ear and does not allow the signals to be sent to my brain. My audiologist said there is a term for this condition and it is “documented in the books,” but I did not press on to determine what it was. He also said I am basically deaf when I am around background noise. I have a very difficult time hearing with background noise.
My audiologist and I are currently working on our next steps, but I was informed I may be a good candidate for a Cochlear Implant, but that is another story.
1. Begin with a fresh start.
This is a new school year, which means it’s an opportunity for a brand new start! Your child has different teachers, different classmates, maybe your child is even in a new school. Either way, this year you know more.
You know what words to use, you know the IEP system better and that your child’s school is legally required to serve your child, you know how to work with your child, and you know that your child can succeed with this support.
And, this year, you have a whole team of support behind you! Just remember: you, the parent, know your child best; you, the parent, are the most important part of the team; you, the parent, are empowered.
2. Fill out Beginnings’ Back to School Introduction Letter
This letter will provide important information about your child to his/her teacher(s). Providing your child’s teacher(s) with information about your child before the school year starts can be a great way to prepare them so that they know how to best work with your child.
The Introduction Letter includes basic information about your child, their likes/dislikes, and information about their hearing loss, skills, and communication strategies. It also has a section covering the best way(s) to communicate with you and other involved family members. Just fill out this letter and give a copy to each of your child’s teachers. If you need some help filling this out, call Beginnings SC. At the 2017 Back to School Bash, there will be a workshop explaining this with more detail. Join us!
3. Find Your Child’s Most Current Audiogram and IEP
When we talk about current audiological evaluations for your child, we mean an evaluation that was completed less than one year ago. You may already have an audiological evaluation that is less than a year old for your child. If so, find it! You will want to have this on hand for meetings at the beginning of the school year. If your child’s most current audiological evaluation is older than one year, you will want to have one done soon, preferably before the school year starts.
Having the most current, up-to-date information about your child’s hearing, is important so that their current hearing status can be explained to new school personnel and considered when reevaluating their IEP.
Maybe there have been changes during the summer. Look over the most recent IEP and see if there are changes that need to be made. If so, set up an IEP meeting for the beginning of this coming school year.
4. Check That Your Child’s Amplification Systems Are Working Properly
This is an important aspect! If your child has an amplification system – hearing aids, cochlear implant, etc – be sure that it is clean and in working condition. If your child is at an appropriate age, with him/her so he/she can start learning the importance of caring for their equipment. If the equipment belongs to the school district, go ahead and contact the teacher of the deaf/hard of hearing that works with your child and request a status update.
Send extra batteries to school with your child so that if a battery dies unexpectedly, he/she will not lose an opportunity. This will also teach your child self-advocacy skills.
5. Meet With School Staff
Contact your child’s Teacher of the Deaf/Hard of Hearing and set up a time to meet the staff at your child’s school. This is a great way to prepare them for working with your child, ensuring that all needs and accommodations are met, and that they know you will be holding them accountable.
You’ll want to give them a copy of your completed Beginnings SC’s Back to School Introduction Letter and go over it with them. This will allow everyone to be on the same page and have time to ask questions about your child.
Also, make sure that everyone knows your child’s accommodations – the more knowledge they have, including knowing that you know what your child needs, the more likely they are to serve your child to the best of their ability. Inform the teachers about the best way to stay in touch with you and other involved family members. Show them the last page in the Back to School Introduction Letter that has this information.
The more prepared and knowledgeable you can make the school staff, the better the year will be for your child!
6. Take Your Child to School
This is especially important for your child transitioning to a new school, but also important for a child returning to the same school. During that first week before students start, go to the school and walk around. Meet new faces in the front office. Stop by and see the nurse, guidance counselor, and the administration. Look around and notice if there are new initiatives – like a new behavior incentive program for all students – so you can help your child about
7. Make Sure Your Child Has School Supplies
Your child’s teacher(s) should send out a list of the school supplies that your child will need throughout the year. Make sure your child has all of them and a good way to keep them organized and together so that he/she will be well-prepared and not lose them!
SC’s tax-free weekend is coming up soon– August 4-6, 2017 this year. Get more info at https://dor.sc.gov/TaxFreeWeekend.
Items that are tax-free that weekend include:
- School supplies
- Computer equipment
Beginnings SC is partnering with the SC Association of the Deaf, the SC Chapter of Hands & Voices, and the Irmo Fire Department for the 2nd Annual Back to School Bash! This event will be held on Saturday, July 22, 2017 from 9:00 am – 1:00 pm, the Back to School Bash will be located at Seven Oaks Park and Recreation Center, located at 200 Leisure Lane, Columbia, SC, 29210.
This is a FREE event open to all Deaf or hard of hearing families in SC – parents of deaf and hard of hearing children and Deaf and hard of hearing parents and their families.
It’s a chance to meet other parents, a time for kids to play fun games and connect with other kids, and an opportunity to learn about the many resources available in SC for deaf and hard of hearing families! This year will have free workshops with topics such as Back to School Prep and dealing with bullies-one for parents and one for DHH kiddos.
We will have interpreters, games, a wide variety of vendors providing information, and opportunities to meet other parents, kids, and families!
You won’t want to miss this, so come on out to prepare for the start of the best school year yet!
RSVP to make sure your child has the opportunity to get free school supplies.
BabyNet Public Hearings & Comment Period
Early Hearing Detection Act Reauthorization
Sign Language Interpreter Act
1. BabyNet Public Hearings
>> Comments from parents, educators, policymakers, and the provider community are wanted on a change with BabyNet.
What is BabyNet?
BabyNet is South Carolina’s interagency early intervention system for infants and toddlers under three years of age with developmental delays, or who have conditions associated with developmental delays.
Why have BabyNet?
Young children learn and develop differently. One baby may walk earlier than another, while another baby might talk first. Often, these differences will even out. But, some children will need extra help. BabyNet will evaluate the child at no cost to determine if they may be eligible for services.
BabyNet matches the special needs of infants and toddlers who have developmental delays with the professional resources available within the community. Services are provided in everyday routines, activities, and places relevant to the life of the family.
How does one connect with BabyNet?
Anyone (a parent, doctor, caregiver, teacher or friend) can make a referral. Look for signs that an infant or toddler might need extra help. If you suspect a child may have a problem, the earlier you get help, the better!
What is the change happening with BabyNet?
South Carolina’s Individuals with Disabilities Education Act (IDEA) Part C program, known in South Carolina as “BabyNet,” will be transferred from SC First Steps to the SC Department of Health and Human Services (SCDHHS) on July 1, 2017 after Executive Order 2016-20 was issued by the President.
The South Carolina Interagency Coordinating Council (ICC) is holding several public hearings for comments on this change. Specifically regarding the 2017-18 IDEA Part C Grant Application, changes to BabyNet Policies and Procedures, and the lead agency transfer.
What can I do?
- Provide written public comment here
- Attend and comment at the public hearing in your area listed below:
To read the existing approved policies:
To learn more about BabyNet:
2. Early Hearing Detection Act Reauthorization | Federal Bill
>> Several Senators have introduced a bill that would reauthorize newborn hearing tests.
What is the bill?
The Early Hearing and Detection Act of 2017, a bipartisan bill that was introduced in both the House and Senate, would reauthorize a federal program for newborn hearing tests.
Why is this bill important?
This Act provides federal funding critical to South Carolina’s mandated newborn hearing screenings. Without our state’s program, just imagine how many children wouldn’t have been identified early on. Beginnings SC speaks constantly about and works constantly to ensure that children are identified early on so that they can begin receiving early intervention and making strides in language development so they are ready for school.
Why is early hearing detection important?
“So much of a child’s development happens in the first few years of their life, which is why early detection and intervention is so important. This bill will ensure that more infants have access to critical hearing screenings, so parents can be informed about the options for their children’s care. I’m pleased to join Congressman Guthrie in introducing this important legislation that will improve health, social, and educational outcomes for kids as they grow.” – Congresswoman Doris Matsui (CA-06)
“Early hearing detection is critical because children with hearing loss often fall behind their peers in speech development, cognitive skills, and social skills. This bill takes important steps to improve early hearing detection and intervention for newborns, infants, and young children, and I’m hopeful we can move this legislation quickly in a strong bipartisan way.” – Senator Rob Portman (R-OH)
What would the Early Hearing Detection and Intervention Act do?
“The Early Hearing Detection and Intervention Act reauthorizes and improves critical programs that ensure we are properly diagnosing and treating hearing loss in newborns, infants, and young children. Access to these services meets an important public health need for families across the country. We know that early intervention means improved outcomes, and our bill will benefit the families of hard-of-hearing children who rely on these services.” – Senator Tim Kaine (D-VA)
What can I do?
- Contact your representatives. This is a bipartisan noncontroversial piece of legislation. It currently has no SC sponsors.
- Call, email, send a letter, or visit them in person. A phone call is better than an email. You won’t get much time on a phone call but speak from your perspective as a parent.
- Find your representatives.
3. Sign Language Interpreter Act | State Bill
>> A bill has been introduced in SC regarding Sign Language Interpreters.
What is the bill?
Senator Katrina Shealy recently introduced the Sign Language Interpreter Act Bill S.548/H.4040 to the SC Senate. It has since been referred to the Committee on Labor, Commerce, and Industry.
Why is this bill important?
This bill would require sign language interpreters to have a specific level of competence in order to work in certain state entities, such as government, public schools, hospitals, etc…
Can I see the actual bill?
Yes – you can see it in print or ASL!
What can I do?
How do I find my legislators?
- Go to: http://www.scstatehouse.gov/legislatorssearch.php.
- Type in your address and click “Find Legislators.”
Below is an example using Beginnings’ office address.
Which legislators would I contact about The Early Hearing and Detection Act of 2017 vs. the Sign Language Interpreter Act Bill S.548/H.4040?
- The Early Hearing and Detection Act of 2017 is a federal piece of legislation. This means you would contact your United States Senators and Representative.
- The Sign Language Interpreter Act Bill S.548/H.4040 is a piece of legislation for South Carolina, so you would contact your South Carolina State Senator and Representative.
How do I contact them?
If you click on their names, you will be taken to either their profile or their own website. From here you can find their contact information.
Ex: US Senator
Ex: SC Senator:
Is it intimidating to contact my legislators?
It might seem intimidating to contact your legislators, especially over the phone or in person, but it shouldn’t be. In this case, you are the expert. You’re a parent, a professional, or a community member who knows about this issue first hand. You have real-life examples from your real life. This is your opportunity to be the expert—educate your legislators about these issues that are near and dear to your heart. Just remember, you’re the expert, and this is how our legislators are able to represent us in their decisions.
If we don’t tell them, they’ll never know.