Saturday, June 13, 2009

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.

15 comments:

susannah said...

This is an absolutely wonderful list/post. At teh beginning, it is amazing how huge it was for me to just read and hear that our daughter would be alright. A turning point for me (we found out she failed her test at one day old) was when monrovia was 2 months old and we went to visit an oral school on graduation day. to see preschoolers singing, listening, thriving....it made me take a deep breath and say, it will be ok!

tammy said...

Great post Leah! Such incredible information for new (and great reminders for the "worn in") parents of children with hearing loss! Aiden wasn't even 24 hours when he was "referred". I will never ever forget that day ... or any of the hundred appts after that all led up to "your baby is profoundly deaf". Just typing it brings tears. But you are so right, everything really will be just fine. I am so thankful for all these great blogs and videos parents post ... they were my saving grace!
And I'm glad the electrical tape worked for you all!

CAUSE ME TO HEAR said...
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CAUSE ME TO HEAR said...
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CAUSE ME TO HEAR said...

Okay, I think I might actually get it right this time :)!
Great resource list - thanks for the post!
I was wondering if you have a picture of the critter clips in action? I looked at them on the website, but I'd like to have a better picture of how they actually work. Thanks!

leah said...

I'll have to get a picture with the critter clips on. The cord goes around the tubing, where the tubing attaches to the BTE case. If your little one likes to take the earmolds off the tubing, then critter clips don't work very well (Nolan used to do this, doesn't tend to do it anymore). Oticon makes a clip, too, with bands that go around the actual BTE portion of the case. These were great for a while, but Nolan didn't like the silicone bands rubbing behind his ears. So we're back to critter clips!

rouchi said...

Great list. well compiled.For Prisha's HA , I have plastic bands which hold the aids. They have small loops through which I just pass a small thin chord and tie them into a knot. The chord holds both aids together which I secure with a safety pin on her clothes.works well.

Julia said...

Great post, Leah. Takes me back.... (And the picture of Nolan is lovely.)

Off topic: Lynn Shea e-mailed me asking whether we were going to enroll Ben in any of their EI classes at BHSC this summer. I'm pretty sure we're not, but I was curious as to whether you are and what you think about it. It's very tempting to take advantage of their trained teaching staff, but (a) we're travelling a lot this summer and (b) Ben is doing well enough that he doesn't really need it.

leah said...

I doubt that we'd do it, because it is 2 hours each way (and we'd have to do something with Matt). Their program is really, really good, though. If we could pop up once per week or something, then maybe...

Nolan is doing great with expressive/receptive language (we finally have more verbs down), but his articulation has gotten rather "slushy." How often do they meet for the summer session (and for how long)? We have a lot of things planned for the summer as well- camping, family is visiting, etc.

Herding Grasshoppers said...

Leah,

beautifully written and helpful to boot!

It Will Be Okay!

Julie

Here It Comes said...

I would have killed for that post four years ago when Emmi was first diagnosed! What a great post with so much information.

I did laugh when you mentioned narrating everything. I am so used to narrating what I am doing, that I catch myself accidently doing it when Emmi isn't around! I know people look at me a little strangely.

Val said...

look at you, the boys must have taken a nap for you to get all that info up. Nice post!

Pattie said...

You are one amazing Mom, Leah. I admire your strength. You are an incredible role model for those two little boys. Special needs are tough. Remember: only the strongest ones are chosen to be parants of special needs kids! We all have guaranteed seats in heaven!

And, yes, it will be OK!

Lucas'Mommy said...

Great post! I, too, wish I had come across that 16 months ago... What a great idea! I love "You have to walk before you can run. And you have to listen before you can speak." I have to keep reminding myself of that to...

rouchi said...

Leah,Thanks for the compliment for Prisha.I hope I have been able to help regarding keeping the hearing aids on.Just try and keep the aids away when he rips them out and tell him he wouldn't get them as he does not want them.meanwhile all of you at home, enjoy talking to each other, some music,dancing to show how much fun you are having listening to sounds.The jealousy would want him asking for the aids and not taking them out.