Saturday, May 3, 2014

Ask Sara: "All About Junior"

I get a lot of questions about Junior...from my readers, people we see in the grocery store, and even my friends. Here are a few frequently asked questions about my sweet little buddy.

"So, what's wrong with him?"
Nothing's wrong with him. Junior is fearfully and wonderfully made; he just happens to be missing his hearing. Aside from profound deafness, we are not aware of any other issues, but we're keeping an eye on his development and his vision, as issues in either of those areas could mean that he may have additional challenges.

"What is a cochlear implant?"
Simply put, a cochlear implant is an electronic device that helps a deaf person hear.
It consists of an internal magnet and electrode array that is placed in the cochlea. A microphone and speech processor worn on the outside of the body (attached to the head via magnet), feeds electrical signals into the implant, where the auditory nerve is stimulated, and the brain interprets it as sound.

"Can he hear normally now?"
Even with the incredible technology of the cochlear implant, Junior will always have a mild hearing loss.
And, just because the device is working doesn't mean he can suddenly hear normally. Consider the implant like a prosthetic limb. With any prosthetic, the user will need to practice using it often, and go to many physical therapy appointments to help his body learn to adjust and use it like a normal part of the body. In the same way, Junior's brain has to learn how to use the implants like a regular ear. He is in intensive speech and auditory verbal therapy several times a week, and we do many speech exercises at home to make sure he's hearing as much and as well as possible.

With the skilled help of his amazing therapists, we are hoping Junior will be caught up to his peers in speech development by the time he is in Kindergarten!

"When did you find out he was deaf?"
Junior failed the newborn hearing screen given in the hospital, but it was determined he had a lot of fluid backed up in his ear which we were told would dissipate and restore his hearing. When he was 3 months old, the fluid had dissipated, but the profound deafness was still there. After several emotionally difficult months after diagnosis, we found out he was a candidate for a cochlear implant, and we began that long, but rewarding journey. 

"How many words can he say?"
Junior will be 2 in a couple weeks, and has had his cochlear implant for 13 months. As of last month, he had the speech development of a typical 15 month old. He can say roughly 30 words, and can understand about 80-100 different words and phrases. He's not putting words together to form phrases or sentences yet, but that is the next step! It's amazing to see how far he's come!

"My baby was recently diagnosed with special needs. I'm not sure what to do. Do you have any advice?"
When Junior was first diagnosed, I was in a heap of emotions I couldn't even pinpoint. Sadness, guilt, anger, and the ever-present why. At the same time, he was so precious and little and like us all, just wanted to be loved no matter what. There's no right or wrong way to react to your child's diagnosis, since it's completely natural to go through a grieving process when you find out your child is not "perfect" in the world's eyes.

One of the most helpful thing for me to do was to surround myself with other special needs parents, especially those who were further down the road than I was. They can give you the encouragement you need to through the difficult times. Hearing "it's going to be okay" from someone who has never walked the road means nothing. Hearing it from someone else who has experienced the same things means everything.

Along the road, I also learned to look at Junior through God's eyes. God made him perfect in His eyes, and sometimes I need to remember that God doesn't look at the outward appearance, and neither should we. The treasures and blessings that Junior has brought with him have been so deep and rich, that I don't think I'd change anything about him...he's perfect.

Finally, give yourself grace. Take deep breaths. Try to get away by yourself and relax. You don't need to hold it all together or do it all. Especially in the first months of diagnosis, it's everything you can do to get out of bed in the morning. Don't be afraid to ask for help when you need it. Don't beat yourself up that your house is dirty and dinner is takeout again. Show your baby the love he or she longs for, and forget about everything else right now. If you'd like specific advice or need some encouragement, feel free to contact me.

Read Junior's Story HERE

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