Special Needs
Moderate to severe hearing loss diagnosis.
My one month old son was recently diagnosed with moderate hearing loss for low pitches and severe for high pitches. They told me he will need hearing aids. Anyone in this boat? Do the hearing aids enable them to hear 100%? I'm so new to this and wondering what comes next. We have an ENT doctor appt on Wednesday. Not gonna lie, I'm pretty sad right now. 
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Re: Moderate to severe hearing loss diagnosis.
Mother of An Angel - 11/12/09
My daughter was born with profound hearing loss, so although we tried hearing aids for six months we knew we were headed for cochlear implants. I remember how devastated I was at her diagnosis. I wish I hadn't wasted so many tears. My daughter is wonderful and is on target with her hearing peers. Our life is mostly normal now.
Hearing aids should really help your son. I don't have much experience with this (my daughter never heard a thing with hers). it will be very hard at first. You'll be going back for new ear molds constantly since they grow so fact. The feedback noise will drive you crazy and once he figures out how to get them off his head you'll have lots of fun trying to keep them on. I recommend a silkawear cap when he gets to that age (5-6 months).
Tyy to get involved with early intervention and your state school for the deaf. Meeting parents of kids like mine is what saved me. Like I said, we have a great life. I wouldn't change it for anything. (I also keep a blog if you're interested at www.cochlearimplantjourney.blogspot.com)
Our son, Nate, has been wearing hearing aids since 4 months old for mild-moderate hearing loss. The aids bring his hearing to within normal range.
Since we got the aids, we have had to get new molds(part that goes inside the ear) 3 times. I saved the first ones we got because they were so darn tiny and cute. He swallowed one mold a month or so ago (he likes to chew on them when he is bored) and the good news is that he pooped it out a few days later. He wore the pilot caps until he was about a year old to keep him from fiddling with them. He now wears a lanyard so in case he pulls one out at daycare or school it will dangle off of his shirt and someone can pop it bakc in.
For me, the hearing loss was the least of Nate's problems(he has genetic micro-deletions) and in my mind could be "fixed" so we ordered the aids and I moved on to other things.(brain malformation and eye issues) However, I was encouraged to get in touch with our local school for the deaf(Maryland School for the Deaf) and it was the best decision ever! I thought to myself, he's not deaf, he has hearing loss, so we wouldn't qualify for their services. Any level of hearing loss qualifies us for services there and we were able to get Teachers of the Deaf as part of our Early Intervention services as well.
We love it at Maryland School for the Deaf and they have a Family Education program that babies 6 months and older can go to with their parents on Mondays and Fridays. The babies go to "class" and the parents have a support group on Mondays and a free ASL class on Fridays.
Please feel free to ask any other questions you have. You are not alone. Deafness and Hearing Loss is the number one congential defect (for lack of a better word) out there. About 1/1000 children are affected by it.
We are still waiting to get my DD's hearing aids in. They should be ready next week finally. She had mild to moderate initially but her latest tests show it has gotten worse. My DD has Down syndrome and a lot of sensory issues, so I am sure it will be a struggle to keep them on her. I really don't care if it helps her to hear things.
I am struggling still some with the hearing loss, I can't really explain it but it has bothered me more than some of the other things we have dealt with. But, you aren't alone and the sooner you get him started in EI the better!! Something we have been doing is watching the Singing time videos. All 3 of my kids love them and we have really started picking up signs!
On a side note, I have been thinking about getting a sign posted near our house to alert drivers that there is a SN's child on our street. Im not sure how to go about it though, have you all thought about doing something like this?
My DS final diagnosis came @ 6 mths old. He did not get his aids until a few days past his first birthday (insurance issues). He is now very close to being on par with his typical hearing kids his age. If your son gets his aids now he will be on par and possibly ahead of his peers with his hearing and speech. Go ahead and grieve it is one of the stages you go through and like another poster said you are going to wonder why you were so worried. I cried for days, trying to figure out what I did wrong during my pregnancy, wondering if it was this or that that caused it. I did not even notice when I stopped grieving.
If you are in FL I know for sure the state will contact you and point you in the right direction in regards to services. After DS diagnosis I did not know what to do. All the right people called me--Early Steps, the county school board (he has a teacher for the deaf and hard of hearing who comes into the home once a week for 45 mins which is fun).
I am not sure if the aids enable him to hear 100% but it certainly seems like it. His audiologist told me once that the with his aids the only thing he may not be able to hear is leaves rustling in the breeze.
Lol as I type this he is trying to get me to come do the Baby Bop Hop with him
. If you have other questions you can email me @ angieg303@gmail.com.
I am not sure if you can get a Special Needs one but I have seen "Deaf Child" ones. I am not sure how deaf you need to be though. LOL. One the parents in our support group got one for by her house and her son has a CI.
I would think you could contact your local department of transportation. They would know how you go about it.
Hugs to all of you! I have a younger sister who was adopted at age 3 because she became profoundly Deaf from a fever some time after birth. She got 1 cochlear implant and tried a couple different programs until one was found to work best for her. This spurred me to learn ASL in school and I eventually began working in a birth-preschool program for Deaf and Hard of Hearing Students. This journey is so jam packed with emotions and information that I'm sure your head is spinning. First off, always remember that as you lo's mom, you are his number one supporter and advocate. No medical professional/educator/therapist can know what's best for your son more than you because you have his best interests at heart always. The journey will take time, learning, and patience but there is no one out there who is more cut out for the job than you!
Here are a few things I've heard parents of my students learn along the way and say they wish they'd been told sooner. A few things to keep in mind; hearing losses vary greatly and can fluctuate depending on fluids etc so hearing aides are usually the first step. In my state, it's mandatory for a child to try them for at least 1yr before being considered for cochlear implants. If your child is eligible for implants, the earlier it is done usually the easier speech is to develop. They are an amazing device and give amazing opportunities to kiddos, they just sound a bit more like a radio signal than perfectly clear speech. Also, the benefit of having 2 vs 1 isnt a huge leap from just having 1, and who knows what incredible technology advances we'll have in the coming years so it may be beneficial to keep 1 side in tact.
I am a huge supporter of the Total Communication approach to education for kids with hearing loss. It uses the best of ASL and speech therapy to give the kids every option to succeed at their maximum potential no matter what their loss. Using sign and speech together encourages communication in all forms, versus just spoken words. It ensures that the children are able to have a full understanding of the world around them. I've found that our students who have come from a strictly oral program or have gotten implants at an older age may be able to produce speech in a way that appears 'normal' but doesn't necessarily mean that they are connecting what they are saying with it's real life application. Sign Language can really help bridge that gap since children with hearing loss are naturally more visual learners.
One thing near and dear to my heart from my experience with my sister, is to remember that although a child with hearing loss may have equipment that allows them to function/appear much like a hearing child, they still have a loss. Especially in situations where the equipment can't be/isn't used like swimming, bathing, bedtime, large noisy crowds/events etc. Having extra resources around geared towards individuals with hearing loss (closed captioning, light sensors etc.) make a world of difference and can alleviate a lot of anxiety for them and allow independence.
I encourage you to check out your nearest school for the Deaf, local ASL classes, and feel out the hearing impaired community in your area. Going to a social event of parents in similar situations could ease you into a lot of great connections for you and your son.
Every child/family/situation/hearing loss is so vastly different that one person's 'solution' is never a cookie cutter for another's situation. So this is what I've taken away from my experience with Deaf/HH children, families, and adults who have all chosen different paths through this journey. I don't mean offense to anyone. Because once again, all of you parents are the ultimate deciders of what is best for your child and I believe that it is no one else's place to judge since you obviously desire the utmost for your beloveds
Sending positive thought to you and your support system!!!!!