Support for Parents of Deaf Children

I just wanted to say thank you to all of the people who gave us input on which CI they chose. It was extremely helpful. As you all know it is a huge decision, and it is a decision that will impact your child for the rest of his or her life. We just want to do what is best for our son! Thank you for all of your support.

Throughout this new journey with Cal, my husband and I have learned that there is a huge support group available to any parent who is going through these same tough decisions. If you are first learning that your child is deaf, get in contact with your local school for the Deaf and Blind. You will find several resources to get you on your way. The most important of those resources is the Parent Infant Program (PIP). Someone will come to your house once a week to teach you how to parent your deaf child. It has been the biggest blessing in our life. Our PIP advisor is Nicole Pilling. She is unbelievable! She has taught us so many great things to help Cal learn to communicate with us. We feel extremely lucky to have Nicole play such an important role in Cal's life.

The last thing I want to tell all parents of deaf children is that you are the only person that can make the best decision for your child. We have learned along the way that people are very passionate about the decisions they have made for their own child. This is fantastic. You should be passionate about the decions you are making, or else they wouldn't be the right decision. I have learned that every child has their own specific needs, and something that is perfect and great for one child may not be so perfect and great for your child. Do what is in your heart and in your gut. You are the only one who can decide what will work for you and your child. Don't let people push you into making certain decisions. Take all the advice you can get, and use what works best for you!

Could use a little help here...

Cal is growing right up. He is a little stud who smiles at just about anything. He is starting to understand some sign and even seems interested in signing himself. He mimics really well and is always using his hands. And contrary to what the doctors told us, he is using his voice a ton.

But more about that later. This blog is for advice. We are still planning on the cochlear implant this summer and have researched both the Advanced Bionics and the Cochlear. After going to seminars, reading online and talking to both companies, I am leaning, but still not 100% sold on one company over the other.

So, to parents or people that have had an implant, I am looking for some advice here. (And I don't want the, "They're both great!" answers. I want to know why you chose the company you did and if you are happy with the results. Please help!

Dealing with a Child's Hearing Loss

I was reading an article in the AG Bell's winter newsletter, and I wanted to share the closing paragraph with you. I think this is such great advice for any parent who learns that their child is deaf. I am just going to quote it. The author of the article is Heather Frost.

"I know hearing loss is tough, especially as a parent of a toddler who is deaf. Try not to grieve too long about what has happened. You as a parent could not have prevented it from happening. Be excited to take on the challenge to be your child's best advocate!"

I think this is probably the best advice I have heard. Good luck to all of you parents who are just learning about your child's hearing loss. There are several people out there for you to talk to and get advice from. Take every opportunity to learn about ways of helping your child succeed.

Cal's Progress

We did another Sound Booth test with hearing aids this week, and Cal responded to 60db on his left ear. We are really excited! His left ear seems to be doing much better than his right ear. We think we may have had a response in the right, but we will continue testing. I thought I would show you some of Cal's progress. I know it doesn't seem like a lot, but this is a big deal in our family! Oh ya, and don't mind Londyn walking by in her underwear, we are real classy in the Perkins' home!

Insurance

“No, your insurance plan does not cover cochlear implant surgery.” Those are the words we heard a few days after Cal’s MRI. Needless to say that sent us into a frenzy of looking into supplemental insurance, advocacies, anything that would help us in getting Cal’s CI covered. One of the advocacies recommended I request a full disclosure of benefits from my insurance. As I read over these it said nothing about cochlear implants, in fact the only thing it said was, “Do not cover hearing aids or similar devices.” Similar devices? If that was their way out they were going to have to better than that. So I called back up the insurance (immediately asked to talk to a manager or specialist) and explained our situation. After a game of 20 questions, we got our $80,000 answer...we are covered! They will only cover one implant, but for now we will take it. It is such a relief to not have to worry about this along with every thing else. I doubt this will be my first battle with the Insurance companies...but this victory was a big one.

Hearing Booth

We did a hearing booth test for the first time this week, and it was a huge success. The process goes as follows:

Cal and I sit in a small booth with big speakers and a TV on our right and left side. I hold Cal on my lap as an audiologist sits in front of him and makes faces at him. As he is smiling and laughing, another audiologist behind the glass window sends sound through the speakers. In our case she said ba ba ba ba in the microphone. When Cal heard the sound, he stopped smiling and got an inquisitive look on his face. We kept repeating this process to see what kind of response we were getting each time. The audiologist explained that he was responding to sound at 70 decibels with his hearing aids on. This means that Cal would be able to hear a big dog barking when he wears his hearing aids. We were so excited about the results! It doesn't mean he won't get an implant. It means that he will respond better to an implant because he is receiving and recognizing sound right now. The more sound he is getting into his brain, the more successful he will be with implants. Way to go Cal!

An Answer

This last week has been a big week for little Cal. The long awaited (and dreaded) MRI finally happened on Wednesday. And a few (very long) days later we got the results. Cal has all his little ear bits and pieces and appears to be a good candidate for cochlear implant surgery. Brynn and I are extremely excited about the news. By no means is this an easy road, but at least we know what road we are on, and that in itself is a tremendous relief.

So here is the basic run down. The cochlear implant will give Cal hearing capabilities. This does not mean that he will hear like you and I hear, but it does mean that Cal has a good chance of being able to hear sound, learn speech and be mainstreamed. Obviously we will take these steps as they come, but as parents we feel like the implant gives Cal options.

More than anything is just feels good to have a direction. For months we didn’t know if Cal could or couldn’t hear. We had no idea where we were or where we were going. And though we still don’t have exact answers to those questions, we do feel like for the first time since we found out about Cal’s deafness, we have been given something tangible.

And so starts Cal's journey towards a cochlear implant surgery.

RollerCoasters & Clichés

There are good moments and bad moments; moments that literally break my heart, and moments that consume me with so much happiness, I cannot even hope to put it into words. This truth lies with every parent, perhaps slightly magnified when your child cannot hear.

Driving in the car, Cal crying in his car seat, and his 2 1/2 year old sister is singing him Twinkle, Twinkle Little Star, because she knows when she is upset, singing helps calm her. Cal continues to cry, because he cannot hear his big sister singing her little heart out. And though she talks and sings to him all the time, Cal has never heard his big sisters voice...heartbreaking.

Cal has the cutest little voice. He coos, he talks, he squeals...and the older he gets, the less he uses it. The doctors warned us of this. At 4 or 5 months old, because Cal cannot hear his own voice, he will not use it. So as we watch our little boy become more and more silent, he does this...complete happiness.



Roller coaster, ups and downs, highs and lows (plug cliché in here). So goes the journey that is parenting.

Cochlear Impant

When we talk about the possibility of a cochlear implant for Cal, I do a really bad job of explaining how it all works. I found this little tutorial on youtube that does a much better job of explaining how the implant works than I do. This may a little soon since we have no idea if Cal can get this surgery or not, but hopefully it helps clarify a bit.

Cal got his Hearing Aids!

So the little guy got his hearing aids! The hearing aids should not do anything for Cal, but the FDA requires that children wear hearing aids for 6 months before they are considered for cochlear implant surgery. So if it comes to that, we want to be ready. For the first time since this process began, it feels like we are moving forward. So even though the hearing aids won't allow Cal to hear, we are still really excited. (Not to mention, the little dude looks like a stud with his new skull candy.)