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.