Early Intervention: Why parents need to follow up

Early Intervention programs for deaf and hard of hearing children are typically offered for ages 0-3 in the U.S. Over the last two years, during the height of the COVID-19 pandemic, early Intervention caseloads have been decreasing. This prompts researchers to ask the question: Are parents of deaf children not following up with early intervention hearing care? Why is Early Intervention so important?

Hearing Loss Diagnosis

A diagnosis of hearing loss for a child can be overwhelming to a new parent. In the last two years amidst a pandemic, it’s been more overwhelming. On top of the diagnosis, parents have to take many things into consideration, including:

  • COVID safety
  • Sick family members
  • Work
  • Uncertainty about whether child needs services

These decisions are not always easy. It can make it easy to overlook Early Intervention services provided by your state. The offerings and providers vary by state and not all programs are created equal.

Early Intervention Teams’ Caseloads Down

I spoke to five Teachers of the Deaf and Hard of Hearing (TODHH) in different states recently who confirmed that their caseload for children ages 0-3 is down. One TODHH noted that their caseload is down 65 percent. I wondered what was happening.

The audiologists I spoke to saw no difference in the number of referrals following hospital screening. Families are following up. Most families are following up on their Early Intervention intake.

The gap appears to be after the intake. Possible reasons include:

  • Deferring services
  • COVID shut downs
  • Fear of going to a classroom
  • Virtual environments not for everyone
  • Thinking services aren’t needed
  • Not enough time in a day for extra appointments

Early Intervention does require work and time on both the parent and the provider’s side. It means extra appointments and conversations, which can seem daunting. But if Early Intervention is offered by your state, you should be taking advantage of it.

“If Early Intervention is offered by your state, you should be taking advantage of it.”

The good news is that DHH programs are starting to pick back up. Of the five TODHHs I spoke with, four reported an increase in case numbers this year and getting back to normal.

Read more: How to advocate for your child with hearing loss

Benefits to Early Intervention

If you are feeling uncertain about Early Intervention services, here are some benefits:

1. Parent Confidence

  • EI services can help you understand what your child may be processing.
  • Learn how to be an advocate, which brings a confidence out that children get to witness. When children see their parents advocacy, they can learn to follow that lead.

2. Guidance

  • There is a lot to learn about options and communication. A TODHH from your Early Intervention team can help put things into perspective and set goals and timelines. This helps to relieve the initial overwhelm.
  • You will learn about your child’s hearing loss, their devices, and what to look out for that might be considered behavior (ie, not listening) when it might be listening fatigue.

3. Language

  • Does your child have access to language?
  • Are they communicating at an age appropriate level?
  • Your TODHH and Speech Language Pathologist (SLP) can help guide you in these areas. Note: the developmental language window is narrow, all the more reason to act quickly.

4. Community

  • You will hear about and may have the opportunity to meet other families. It helps to talk to other parents, as well potentially have your kids meet other DHH kids.
  • You can confide in your service providers what is on your mind. They are not your therapists, but they understand the process of what you may be going through and can give you specific next steps or ideas.

5. Goal-setting

  • Develop routines for your child’s learning and how to implement them into everyday life and activities.
  • You early intervention specialists can help you prepare with the right questions to ask whether you are visiting the audiologist or a new school.

6. Advocacy

  • If you need an advocate for your child’s classroom, oftentimes your TODHH can help. You can work together with the family and school to discuss the right accommodations.
  • A TODHH focuses on the whole child and also communicates with the audiologist, SLP and physical therapist or other service needed.

Early Intervention Works

On a personal note, as someone who is deaf/hard of hearing, I originally fell into the category of believing I did not need Early Intervention services. While I do have a lifetime of experience being deaf/hard of hearing, I had no experience raising deaf/hard of hearing children. It challenged my perception of language, behavior, and learning. We’re all better off for it. I feel so incredibly lucky for the team my girls had between the ages 0-3.

Read more: What to do early on for your deaf baby

Safe listening: Protect your ears

Hearing is one of the most magical and complicated senses humans have. Our ears are beautiful tiny pieces of engineering converting differences in air pressure into perceptions of sound. Yet, we as a society do not have a basic understanding of how these sound pressures can damage our hearing. Safe listening is important; protect your ears.

Hearing Care Education

Using hearing protection is key to safe listening. According to the World Health Organization, one in four people is projected to have hearing problems by 2050. That’s 25 percent of the population. One of the major factors that affect hearing health is lack of proper hearing care education. Why don’t we stare at the sun or why don’t we go to the beach without wearing sunscreen? If we follow the same principle, why don’t we wear hearing protection when we are going to a show knowing is going to be loud? Or why do we have our headphones embedded in our ears for a good part of the day?

Read more: Hearing Protection

Hearing Damage Can Happen Quickly

Hearing damage can happen in seconds depending on the intensity, proximity, or even frequency of the sound. Without getting too technical, a rock concert can get up to 115 db. It is known that safety exposure to that level of sound is only one minute. After that, there is a chance you are doing some permanent damage as hearing doesn’t regenerate.

I get it. Live music is great! It releases endorphins and make us feel alive. But why play this game that could have devastating consequences like hearing loss or tinnitus?

Read more: The Do’s and Don’t’s of Going to a Concert with Hearing Loss

Safe Listening

Have you ever come back from a night out with some ringing in your ears? Even if you’re lucky enough for it to go away after minutes, hours, or a few days? This is normally the first sign you are doing some damage to your hearing. If this happens frequently, there is a chance you will have permanently damaged your hearing and developed what is called “Tinnitus.”. Listen to the signs and take action!

If you like going out to noisy places, there are few things you can do. One is to maintain a distance from the speakers or to take regular breaks. If you are not sure about risky sound levels, learn about sound levels and download a decibel meter to your phone. Take it easy the next days after you have been out to give your ears some time to recover.

60/60 Rule

If you are a headphone user, apply the 60/60 rule: No more than 60 percent of the volume for no more than 60 minutes at a time. Invest in good quality headphones, preferably with active noise cancellation.

Read more: Who is at risk from noise-induced hearing loss?

Hearing Protection

Part of the issue with hearing health education is the stigma surrounding hearing protection, which is seen as uncool or somehow diminishing the audio quality. As a DJ, I used to think that louder was always better. In reality, it is not. It’s all about adjusting your brain. In sound production, there is a technique that requires you to listen and mix at the softest possible level. In this instance, the brain becomes super sensitive to sound. The differences in frequencies and volume become obvious so you can have a better mix in music. This shows that it is possible to change our collective idea as a society about sound levels and turn the volume down a notch.

Read more: My experience coping with tinnitus

Don’t Learn the Hard Way

Unfortunately, for most people with hearing damage, we learned the hard way. We often don’t realize the damage we are doing until it’s done. Nevertheless, it is never too late to start protecting your hearing and find good hearing protection. If you are concerned with the quality of sound as I am, there are good earplugs that reduce the volume overall without making the music sound muffled. In fact, the sound is better with them, especially at venues without a good quality sound system.

Read more: Hearing protection

Prevent Hearing Damage

The reality is that we live in an industrialized society, therefore we are constantly exposed to sound from various sources. It is inevitable. So, the best way to prevent hearing damage is to be diligent about it. If you think something is too loud turn it down, wear hearing protection, or move away. Use intuition and always remember, if you want to hear for life, listen with care!

Why Egypt’s newborn hearing screening initiative is important for the rest of the world

Egypt’s Newborn Hearing Screening Initiative

In September 2019, Egyptian President Al-Sisi and his Minister of Health and Population, Hala Zayed, launched an initiative to get otoacoustic hearing screening to newborns across Egypt. Over one million children have been tested within the first year, according to EgyptToday.com. With the 100 Million Scheme being rolled out across Africa, many more will follow. The hearing screening can’t come quickly enough, as an average of 130,000 Egyptian newborns have hearing loss.

The 100 Million Scheme covers all kinds of health screenings, from newborn hearing tests to breast cancer. With massive plans to improve Africa’s status as a continent, the 100 Million Scheme is just one part of a colossal effort to make Africa a world superpower by 2063. The move is known as the African Union Agenda 2063. The World Health Organization is backing the health initiative.

Hearing Screening for Babies

The earlier you catch hearing loss or deafness, the less severe the impact on the child’s development. Babies rely heavily on their hearing to learn speech and language. Understanding how words and letters sound can be crucial in learning to read and write. There’s also a developmental window when it comes to learning how to talk.

According to a study published in the Journal of Deaf Studies and Deaf Education, Deaf children can have a much harder time with literacy, due to not having phonetics to learn from. As a result, their general education can lag. People who acquire deafness later in life have already obtained a voice imprint, or the memory of what words sound like, according to the National Institute of Health. This makes it easier for them to learn to read.

In the U.S., hearing screening guidelines state that babies should have hearing tests before one month old. Those that fail need a full hearing test before three months of age. Children with hearing loss or deafness do much better if they’re supported early on so that they can obtain essential literacy and communication skills. The more awareness you have of your child’s condition, the better you’re able to support them.

Read more: Our journey after a failed newborn hearing screening 

Deafness and Hearing Loss in Egypt

With five percent of Egypt’s population having hearing loss, deafness and hearing loss are just as much of an issue in Egypt as they are in the U.S. and the rest of the world.

Being born with a hearing loss in developing countries means having a distinct disadvantage, especially if there isn’t adequate literacy for education. However, there is support available. Egypt is rapidly becoming a supportive country to live in for the deaf community. One example is the Egypt School for the Deaf offering classes in Egyptian Sign Language to parents of deaf children.

Egypt also has its own sign language known as Egyptian Sign Language or ESL. There isn’t much documentation about its history or usage. It is one of several Arabic sign languages. There is no united Arabic sign language. All attempts to implement such a language failed, as it means incorporating an entirely new sign language among users of existing ones. If you fancy giving ESL a go, check out SignPuddle, a dictionary of ESL signs.

Read more: Sign languages around the world

How to overcome the urge to compare your deaf child to others

We’ve all heard the saying, “Comparison is the thief of joy.” But as a parent — especially as a parent of a deaf child — comparison is hard to avoid.

As parents to a child with cochlear implants, my husband and I are at the point in our journey where comparison is starting to become apparent in day-to-day life. We’ve spent so much time in our little bubble in the past few years due to COVID. Now that things are opening up and Cooper is getting older, we see more kids his age. I’d be lying if I said that’s it’s easy to focus on Cooper’s journey and his alone. It isn’t easy. I often find myself listening to kids his age speak, even hold conversations, and there’s a pang in my heart. Don’t get me wrong, I wouldn’t change our journey for the world. But that doesn’t mean it isn’t hard at points.

So, how do you acknowledge comparison without letting it dictate and affect daily life? Here’s what I’ve found helpful.

1. Remember Where You Started

I know personally, I get so focused on the now that I tend to forget where we began and how far we’ve come. Progress and learning happen gradually. But when you look back over an extended period of time, it’s pretty amazing how much can change. Early on in this journey, I got so excited when Cooper turned to a sound or tried to mimic something. Now, thanks to his cochlear implants, he locates sound with crazy accuracy and mimics full sentences. When I look at past milestones and then the milestones we are at now, it really puts things in perspective.

2. Remind Yourself That It Isn’t a Race

We are so programmed to compare and be competitive, even when we don’t realize it. Social media has only perpetuated this. People are always sharing their child’s accomplishments, as they should. But taking all that in as a parent of a child on a different path – like a child with cochlear implants –  can be overwhelming. It’s so easy to see another child around the same age as yours, speaking in full, clear sentences. Without consciously doing it, you begin to compare where that child is to where your deaf child is. It’s a draining cycle that can feel impossible to avoid.

In these moments, I have to remind myself that our path is a different one. That doesn’t make it less than, and it doesn’t make us behind. We just are where we are. And not only that, we get to celebrate so many little milestones that other families may not think about on a daily basis. I love those little magical moment. They truly do make me grateful that we get to walk this path.

3. Hold Onto the Moments That Make You Proud of Your Deaf Child

Like most things in life, it can be hard to focus on the positive when your attention is being pulled in so many directions. But, day-to-day, there are so many moments to be proud of your deaf child. If you have a hard time referring back to these in the hard moments, keep a literal running list or re-watch a video in which your child did something incredible. I like to refer to past videos in my camera roll, ones where Cooper really surprised me and my excitement in that moment shines through. It’s almost contagious and reminds me to put things in perspective. There are always moments like this. You just have to remember to look for them.

4. Realize It’s OK to Say No

I know, I know. This is hard. But if you know you are likely walking into a situation where you will find yourself comparing your child to others, it’s okay to say no. That’s not to say you should always avoid those situations. That isn’t a healthy approach either. But if it’s already been a hard week, or there is a particular reason you feel your mental well-being may be affected, it’s okay to not go to certain events. It’s good to be conscious of your own mental health because the way you are feeling can easily translate to your child. When it comes down to it, saying no is perfectly healthy at points.

5. Talk to Another Parent of a Deaf Child

There is nothing that can replace simply feeling validated and understood. In our case, it’s always helpful to talk to another hearing parent of a deaf child with cochlear implants because they are walking the same path. Even if they don’t have a solution to offer, they provide solidarity and support. Knowing that another person is experiencing the same difficulties and emotions as they watch their own child develop always makes me feel less alone. Not only that, but it’s reassuring to know that Cooper will also have people to lean on as he grows up. Making those connections with other families on the same road is vital.

All in all, it’s hard to be a parent of a child who isn’t “typical.” It’s impossible to avoid comparison, which is why learning to cope with it and redirect your thinking is critical. At the end of the day, what matters is that you are doing everything in your power to allow your deaf child to thrive and progress.

Deaf photographers around the world

While spoken and sign languages create foreign barriers between cultures, the language of photography is universal.

Here are a few deaf photographers are using that language to articulate a story through their lens.

Bruno Braquehais

Bruno Braquehais was born in Dieppe, France in 1823. Although records don’t state how he lost his hearing, Braquehais was deaf from a young age. When he was nine years old, he started at the Royal Institute of the Deaf and Mute in Paris. He later found work as a lithographer.

Braquehais’ connection with his father-in-law, who was a daguerrotypist, motivated his career shift into photography. Daguerrotype was the first photographic process. Braquehais began producing artistic photographs with nude subjects. These were hugely successful and used as a study aid by painters. He began selling his work. He also inherited his father-in-law’s daguerreotype portrait studio after his death, which he continued to run.

In 1871, he assembled an album of 109 photographs documenting the events played out during the Paris Commune, a three-month long mutiny against the French government. Other photographers documented the aftermath of the event. Braquehais was there during the uproar, making sure the historical revolt was recorded. Because of this, he is considered a photojournalism pioneer.
Ultimately, he was imprisoned for fraud. He died in 1875, a short time after his release.

Clare Cassidy

Based in California, Clare Cassidy‘s passion for photography started as a little girl. She got lost in the pages of National Geographic and fantasized about when she could take such photos. Born deaf, she communicates using ASL. She has an identical twin sister who is also deaf. Her three sons are also deaf.

After college, Cassidy minored in photojournalism, which she excelled in. She graduated with a Masters in Secondary Education. She currently teaches visual journalism while running her photography business on the side.

Cassidy has been outspoken in her deaf advocacy on social media and is known for using her photography projects to raise awareness. Her project “Roar from the heart,” inspired by her feelings of devastation after the 2016 U.S. election, donated all profits raised to the Deaf Women of Color organization.

As Cassidy writes on her website, “My being deaf actually gives me the advantage to have a better eye when taking photos. I am not distracted by noises and am more attuned to body languages. Hence, my subjects’ personalities are genuinely portrayed in their photos and real moments in between the nothing are captured.”

“My being deaf actually gives me the advantage to have a better eye when taking photos.”

Her content relies on capturing humanity in its natural state over posed shots. Her extensive gallery involves a lot of maternity, birth and newborn material. However, she often steps into other areas, such as lifestyle and weddings.

She also works for Finding Meraki, an online platform that offers captioned photography workshops by deaf teachers with years of experience. Cassidy offers four separate classes. They include teaching how to use photography as a way to deliver emotive storytelling.

Jaime Del Pizzo

Jaime Del Pizzo was raised just outside of Philadelphia. She has bilateral, severe-to-profound hearing loss and wears Phonak Naida hearing aids.

She studied film production and communications in New Hampshire, where she was given the opportunity to spend a semester in New Zealand. Since then, she has spent time in Wyoming where she worked on a ranch and saved up for her Canon camera. With it, she journeyed through Puerto Rico, Colorado, and Alaska, snapping all the way and and honing her craft. She then settled in Bellingham, went freelance and started her own website. A range of photography services is offered. She recently entered a creative collaboration with another photographer and started Higher Ground Visuals. It’s a content creation business that offers services in photography, videography, and graphic design.

An avid adventurer and self-proclaimed nomad, Del Pizzo’s love for the wilder side of life is reflected in her photography. She produces high quality prints of snowy mountain peaks and incredible night shoots where she captures the bright lights of the Milky Way, an act she describes as “connecting her soul to the universe.”

The photographs she posts on Instagram are often accompanied by descriptive language that beautifully encapsulate the deaf experience. When addressing the unrealistic beauty standards that society often holds us to, she had this to say: “This is something that drives me in my work. I feel that in a sense, I hold this profound power or responsibility to reverse what society is telling people and really, truly show people how beautiful they are, inside and out. I really strive to use this medium to try and smush a snippet of the energy & the soul of a human into a 2D representation that is just buuuuursting at the seams of this mere rectangle.”

Del Pizzo also shares the difficulties that arise as a deaf person living an active life and the barriers she faces. In a blog post a couple of years ago, she said because of her deafness she gets to see the world in a way that most won’t experience.