One of Beginnings SC’s Board members, Missy, has been Deaf since birth. She and her husband, who is also Deaf, use American Sign Language as their primary mode of communication, as do their two children. In November 2016, their oldest child begins to request an evaluation of his hearing because he was pretty sure he had a hearing loss, but wasn’t sure how much. Watch Missy as she gives an account of the past few months and where everyone is now.
Captions are available, but below is also the transcript that Missy wrote herself.
- Language builds on language.
- 80-90% of what a 5 year old knows going into kindergarten is learned incidentally – that means without thinking, without trying, the brain is listening and hearing and building language. Kids with a hearing loss don’t have the luxury of that easy acquisition
- Be patient.
- Remember that every parent comes to the table wanting to be the best parent they can, to do their best; they may not be the best expert on their child’s educational needs but they want to be, so be patient.
- If you’ve met one child with hearing loss, you’ve met one child with hearing loss.
- The impact of hearing loss on development is dependent on age, home environment, services, technology, etc… Every child is unique and requires an open mind to consider what their needs are.
- Write the Individualized Education Plan for that one child, not “this is what we do in this district.”
- Aspects of IDEA that we apply to other SpEd kids may look different to student with a hearing loss. For example, LRE (Least Restrictive Environment) applies to language, too. Is the student’s language level within 1-2 years of their peers? If not, they probably don’t have access to the curriculum or interactions with their peers.
- It goes a long way to intentionally create a relationship with a child’s parent.
- The IEP team for a child who is deaf or hard of hearing is usually large, so ask the parent(s) to come sit next to you so they feel they have a personal supporter in the room.
- If your district has a DHH consultant, call them and ask questions! Find out what they can teach you.
- Remember “adverse affect” for students who are DHH. Have you included/assessed:
- communication needs and the child’s and family’s preferred mode of communication?
- linguistic needs?
- severity of hearing loss and potential for using residual hearing?
- academic level?
- social, emotional, and cultural needs including opportunities for peer interactions and communication?
- Organize and bring your child’s paperwork with you.
- The most important ones to bring are:
- your child’s current IEP
- new audiological reports
- new evaluation reports
- Take paper to use to write notes during the meeting.
- The Beginnings parent notebook is a great organizing tool!
- The most important ones to bring are:
- For the meeting, think of your main goal(s) – try not to have more than 3. It tends to “muddy the waters” if there are too many issues.
- Make yourself a script if you need to – read it if you get nervous!
- If you are nervous that the meeting is going to get rough, bring a friend or your Beginnings Parent Education Specialist to help you stay calm, focused, and to help take notes.
- Go into the meeting with the mindset that everyone is there because they are there for your child and want to do best… but, even though they are the professionals, you are still the one that knows the child the best – and a crucial part of the team.
- When it is your turn to talk, thank someone. You can thank someone for the hard work with your child, something one of the team members reported on, etc.
- If you don’t understand the vocabulary they are using, ask! There’s only so much IDEA, LRE, FBA ,PLOP, ABR, and CBM you can take!
- Don’t leave the meeting without a copy of the IEP, even if they say it is “all messy and I’ll clean it up tomorrow.” Just say, “Give me a copy of the messy one, and I’ll throw it away when I get the clean one.”
- Reading Decreases Stress Levels
Believe it or not, reading for at least 6 minutes reduces your stress levels by a whopping 69%.
- Reading Increases Empathetic Reasoning
Fiction has been found to develop greater empathetic reasoning in readers than nonfiction, so make sure you’re getting a good balance! Reading also helps children relate well to others and better process their own emotions.
- Reading Decreases Mental Decline and Increases Brain Pathways
Reading regularly can keep you sharper longer—by up to 32%! Reading regularly also provides great cognitive stimulation for your child, helping to strengthen the pathways and connections their brain builds, providing them with early language skills.
- Reading Increases Memory Retention
Reading actually utilizes different parts of your brain than does watching tv or listening to music, and the parts of your brain that are used when reading are actually in charge of keeping memories in-tact. Reading has even been found to help prevent Alzheimer’s!
- Reading Increases Quality of Sleep
Staring at computer or phone screens before going to sleep and make it harder for your brain to switch off. Getting in a standard routine of reading a book better helps your brain switch off, allowing you to get much better shut-eye!
- Reading Increases Parent-Child Bonding
This is a wonderful pro for both you and your child. When you read with your child, you are sharing a special moment with them. They’ll come to associate books and reading with special times with you. Reading is a great way to develop a relationship and bond with your child, while you both obtain 5 great health benefits!
Enjoy a good book with your child tonight and reap all of the wonderful benefits for them, and yourself!
It’s Monday and I have a home visit with a new family this week. A new 6-year-old boy, “Shawn,” who is starting to show signs of struggling to learn to read. This will be the Initial Home Visit, and it begins before my actual appointment time with the family. Here’s a summary.
Beginnings SC received a referral from a pediatric audiologist. That referral has information about the family, the child, the type and degree of hearing loss, and a signature from a parent to indicate that they know we will be contacting them. With the referral is also this young man’s audiogram. After the referral and audiogram are received, one of us calls the parent on the referral and gets more information. We have a form that is used to ask the parents about the resources they have, the resources they know they need to have but have been unable to obtain, and those resources that the family may not know are available. My first step is to read the information gathered through this call and then also look at the audiological report(s). It is a great day when we get the narrative information as well–today I am in luck! I have a nice history to start my questions when I arrive at the home.
Then comes more prep. All families will get our Parent Manual that is a fantastic resource developed by our parent organization, Beginnings in NC. I still remember talking to Mary several years ago about creating our own manual for families; that stopped short when we first read the Beginnings Parent Manual. It contains so much beginning information about having a child with a hearing loss, all presented in a format that is tailored for parents and is accurate and unbiased. Unbiased is extremely important to us because every single family is different, and parents must go on their personal “journey.” The argument over how to deliver language, ASL or Spoken Language, has existed for over 100 years, but the most important part is the end result–language and communication. Families need to know ALL of the unbiased information about language and ways to communicate so they can start down the path to developing language and building communication and so decisions can be made. That’s what we bring. We also have a Pathways to Language and Communication DVD that demonstrates real families that are using ASL or Listening and Spoken Language, or both! All of this information is NEW for families–the DVD lets families see what all of this really looks like. There is also more information that is gathered as part of the education for the family. Again, there are some standard things we always bring, but much is chosen based on what we have learned about the family to date. See more specifics below.
So since this is the first time I will meet this family, I am going to pack the basic information about hearing loss including the anatomy of the ear and how one hears, our teaching audiogram, information about IDEA and how that relates to children who are deaf or hard of hearing, hearing and listening in the typical classroom (because this child doesn’t use sign language that I know of–but I will ask), IEP-specific resources, many release forms so we can have communication with the other providers in Shawn’s life, and so on. I also pack a 2” three-ring binder with our Parent Notebook files printed and ready so I can guide the family towards collecting and organizing Shawn’s paperwork. It’s an important first step to feeling “in control” when the resources are collected and easily accessed. This notebook is supposed to go with the family to all meetings and appointments and brings lots of “evidence” to team discussions.
So when I get to Shawn’s house, I am welcomed inside and I tell Mom about Beginnings SC and what we do. I tell her about my background as a teacher of deaf and hard of hearing students for 16 years until that day when I realized parents don’t know what they don’t know. Parents bring home a new, sweet baby from the hospital, not a newborn and an audiology degree! I tell her about the moment that I realized I had to do something different, and that I could better teach children by teaching their parents.
Then I ask Mom to tell me about Shawn…when he was born, the circumstances of his birth, did he pass the NBHS (newborn hearing screening), and when she started noticing that Shawn seemed to be acting differently. Shawn passed the NBHS, but around 2 years of age, Mom noticed a change. Shawn was an early talker and then the words sounded different. Mom took Shawn to his pediatrician who referred the family to an audiologist. Shawn and his family live in a tiny town in SC–about 45 minutes outside ofCharleston. Eventually, Shawn was diagnosed with late-onset childhood hearing loss; a hearing loss that happened after birth. I talk to Mom about how that felt when she heard that diagnosis, and how that impacted her and the family. I reassure Mom that she did everything right–that hearing loss is not something most people consider when they are going through the list of “what could be causing this?” I praise Mom for trusting her “mom gut” and acting on that feeling of something not being quite right. And I reassure her that even though she doesn’t have an audiological degree (and doesn’t need one) that Beginnings will be with her until Shawn is 22 and we will face the challenges together. I am then the coach…the tutor. I give Mom the “5 Steps to becoming Your Child’s Best Advocate” handout and talk through the first two items so Mom can already know she is competent. The third item says for the parent to learn everything possible about IDEA, the disability, etc. and so we begin. I pull out the diagram of the ear and talk about sound, and how it works in the ear and the types of hearing loss. I talk about Shawn’s hearing loss specifically and what part of the ear is affected. I move to an audiogram and talk about Shawn’s audiogram. Mom has been to nearly 10 audiology appointments since Shawn was diagnosed and the staff have been great about explaining it, but even after Mom started to accept the diagnosis, Shawn was there squirming and it was hard to process. After we spend as much time on the audiogram as Mom needs, we start to have a conversation about how language is learned. That sounds like a strange topic but most people don’t think about it! Ninety percent of what a child knows as they enter kindergarten is learned just by their brain hearing conversations and language being used around them.
Shawn is now half way through 1st grade and is struggling. I tell Mom that he was born with the ability to hear and that “planted the garden” in the parts of his brain that works with auditory skills and with language. And when he lost his hearing after that high fever, the amount of stuff he could learn just by listening reduced quite a bit and that is probably the reason he is struggling now. A lot of what I cover is based on Shawn’s family’s needs…what they know, the questions they ask, the gaps in the paperwork. We talk about the current school setting and how Shawn calls himself stupid so very often. I help her reframe that so she can help Shawn see it is not his brain, but his ears and we have a plan to support him so he doesn’t feel stupid anymore. Then I start to help mom reframe so she can begin to see a light at the end of the tunnel. I will provide her with a template of a letter for the school, requesting a meeting to discuss Shawn and the recent evaluation he received from the team at the nearby hospital that shows a 1 ½ year gap between his chronological age and the age-equivalent scores of his language testing. We will meet again to discuss that meeting later–I’ve started to feel that Mom received enough information today. I give the Beginnings’ Parent Manual, “Understand Your Child’s Hearing Loss” to Mom and ask her to start reading Chapter 1 on grief and I explain the Parent Notebook and the materials I brought for that. Before I leave, I write down the things I need to do, like follow up with the audiologist and find out the names of community speech language pathologists near their town so Shawn can get additional language exposure. Then we talk about Mom’s goals. She is going to call the school and find out who is in charge of special meetings, and start reading 2 books to him each night before bed. I write those on the Family Goals Sheet, giving her a copy for her fridge, and keeping a copy for me.
Hearing loss is complicated. It can be overwhelming. It is LOTS of information. Equipping a child for a successful adulthood is a daunting task; adding a hearing loss to that makes one feel like giving up. Setting attainable goals start to let the family see that it IS do-able, and I will be there helping them learn the tools they need for this new journey. Lao Tzu says “A journey of 1000 miles begins with just one step.” Beginnings makes sure the families know that this journey won’t have to be taken alone.
Cara and I never thought we would be performing hearing screenings for children when setting out to start a program for parent education, but getting into the process has been fun, energizing, and eye-opening. With the help of some amazing volunteers, I have performed almost two thousand (yes, you read that right!) screenings since September of 2015.
Some of the things I have learned are highlighted below.
My arrival to a center for the first time is always one that elicits feelings of excitement and nervous anticipation – unsure of how the children will engage and if staff will be displeased by my coming into their classroom and disrupting their typical day’s’ activities. But as soon as I step into the first room and sit on the floor with my box of supplies, I no longer have any uncertainty how it is going to go. The children quickly gather around and ask questions about my big box, or ask my name, or they try to sit in my lap, or show me their favorite toys. I have always had a way with children and most have almost always taken to me quickly, and I am thankful that skill continues to prove true. In each classroom I take a few minutes to greet the teachers and children and find a place on the floor or a table that is comfy both for myself and for the children. I ask their names and hold their toys; sometimes I read a quick book or roll a car around on the floor. Then I open my box and bring out my “special computer that plays the *strangest* music!” and they all look on wide-eyed. I continue to be surprised by even the smallest children who watch and listen and excitedly sit and wait for their turn. Many try to sit in my lap repeatedly while I am screening their friends – they just can’t wait for their turn! My love of children and the vivacious and curious three I have at home have helped me develop the skill of helping/talking to one while having others all around! “The more the merrier,” I often tell the teachers as they try to corral the curious onlookers awaiting their turn. The excitement usually means I will have great luck in screening all of the children in a class.
Because the process is so quick and easy (as you can see below in the video) I can complete a classroom of about 15 children in less than 30 minutes. I test one ear at a time and ask questions like, “Do you hear the birds? Does it sound like they are playing a piano?! Have you ever seen such a thing?!?” They giggle at the idea of such absurdity and then invite their friends to go next. Inevitably, there are children who are unsure and, at times, afraid, but I always encourage them to come look and help me push the buttons. Almost every time, they will ask for a turn and sit quietly while I check each ear. They give me a proud high-five and agree when I tell them how brave they were. The staff are so helpful and encouraging, as well. I have yet to be greeted with anything other than excitement and warmth from almost every single staff person in all the centers I have visited. They ask brilliant questions and then help me explain the answers to the children who are watching. They are curious about the technology and ask why I got into the business of screening children for hearing loss. They are nearly always astounded when I tell them we estimate 10,000 children in SC schools have hearing loss but aren’t identified. They often stand with mouths agape and then say, “We are so thankful you are here!” Every single teacher has had at least one student they have wondered or worried about. They have, at times, had their fears confirmed and at other times, been given reassurance. But every time, they have been offered information and ideas, resources and/or encouragement.
Screening the sleeping children may be my favorite time. Not only do I have the opportunity to soak in their peaceful, worryless sleep, which is calming and comforting to anyone, but I also get to show teachers how quick and easy the process is. For all the teachers who welcome me into their busy, active classrooms, there are just as many who give a kind, but doubtful side-glance when I come into their finally-quiet nap room with a big box and clipboard. Once I assure them my goal is to NOT wake anyone, and I am successful with the first, their confidence in my plan is renewed and they help me move from place to place; often even turning a sleeping head or patting a slightly-stirring back if need be.
While performing hearing screenings was not what we envisioned, we have referred more than 250 children on to their Pediatrician or an Audiologist to receive more information about serious issues that could have or were preventing their access to language. We know that language is fundamental to growth, development, success, and happiness and we know that the work we have done to identify children in South Carolina who may have remained invisible is invaluable. So while we didn’t set out to sit on floors with small computers and curious children, we sure are glad we’ve had the chance. And we can’t wait to tell you all the amazing stories we see and hear in the process. Thank you for helping us continue to make it visible.