When You First Find Out

Baby Nolan- 1 day old. Or when we knew.

Some parents are told when their baby is no more than a day old. Some find out when a speech delay is found at the age of two. And others don't know until an elementary school screening reveals a problem. Pediatric hearing loss isn't something anyone is really prepared for. It's not in the "What to Expect" books. Most parents have never noticed a child wearing hearing aids or cochlear implant- and at an incidence of 3/1000, there simply aren't that many children out there who need them.

Then the diagnosis comes. The screening audiologist in the newborn center tells you that your baby has "referred" on the screen. It might be fluid- it might not. You take your baby home and wonder if he can hear any of the songs you sing to him. It takes a few months to get the full diagnosis and hearing aids, so in the meantime, you are left to wonder. Or your child with a speech delay is sent in for a hearing test, and the audiologist finds the cause of the speech delay- in the form of a hearing loss. You worry about how much your child has missed out on. How long it will take him to catch up.

For any parent, there is a whirlwind of medical appointments and audiology appointments following the diagnosis. There is little time to catch one's breath, or to process what you have been told. Scary statistics on reading levels and language scores pop up on every google search you perform. What is a parent of a newly diagnosed child to do?

• Find other parents who have children with hearing loss. This will ease your mind greatly, and give you greater resources and emotional support. The list at listen-up.org is wonderful for parents of deaf and hard of hearing children. If your child has been recommended for a cochlear implant, CI Circle is a great resource. They can also tell you how to use electrical tape to temporarily fix your kid's hearing aid (thanks, Tammy)!
• Buy a binder. And lots of dividers. All of your referrals, early intervention materials, doctor appointment information, audiology reports, etc. can be nicely stored inside. I also print out calendar pages from Word and include them, so I don't get appointments mixed up. I also included many clear page protectors. They're great for sliding appointment cards into or any other odd-shaped things (like CD's from CT scans).
• Expect a few medical appointments. After a diagnosis of permanent hearing loss, you will be referred to an ENT. The ENT will then order a CT scan, MRI, or both. They may also order a urinalysis, kidney ultrasound, EKG, vision exam, and other medical tests as deemed appropriate. Don't freak out about these tests- there is a rather standard protocol for kids with hearing loss.
• If your newly diagnosed child is an infant, toddler, or young preschooler- buy a pilot's cap. They help keep those little fingers from turning those expensive hearing aids into teething toys. Since Nolan has impressive fine motor skills and the pilot's cap is now useless, we use critter clips to keep them from getting lost when he pulls them out.
• If your child pulls out their aids, it doesn't mean they hate them. For younger toddlers, it is often curiosity. In Nolan's case, he gets bored and pulls them out to play with them. There is also an adjustment period to wearing the aids, so start out with a few hours per day and slowly increase it to having the child wear them during all waking hours. I've been told that by the time they hit preschool age, they're pretty good about leaving them in. Since we're not quite there yet, I can only hope!
• You have to walk before you can run. And you have to listen before you can speak. For any child learning to hear, consider their "hearing age." Children with normal hearing have been listening in the womb for several months before birth. Then they listen and hear for another year before producing their first word. Since Nolan received his hearing aids at four months old, his "hearing age" is technically four months after his birth date. For a child who first receives full access to sound via a cochlear implant at one year of age, their hearing age will be a year younger than their date of birth. Do therapy, narrate everything, and have patience. It will come. There are great therapy ideas at the Listening Room.

I would also recommend the books Choices in Deafness, Children with Hearing Loss: A Family Guide, and (for hard of hearing children) Not Deaf Enough. And ANYTHING by Carol Flexor.

Relax. Keep your sense of humor. Rejoice in your beautiful child, and know that everything really will be just fine.