Mom Looking for Information for Son Who Was Recently Diagnosed with Hearing Loss

Hi L.,
first of all.. I want to say you are a WONDERFUL parent to be moving on all of this when your child is still young. good for you!! you are doing the right thing getting services for your child! I would check with your county to see what services they can provide for you and also what your medical benefits may be with this. If he has a congenital hearing loss that he was born with (as my daughter had).. I would think your medical insurance would cover something! I have heard of Easter Seals organization and there is SEDOM in woodstock which is a special education resource. They may have some information for you too. THey have wonderful audiologists out there and my daughter finally got a good and complete hearing evaluation from them after the school district did a complete evaluation on her in 1st grade. Service information is much more available now then it was many years ago when she was young.

While I don't know much about your child's particular situation, I wanted to offer my support. My daughter (who is now 22 years old) was born with a bi lateral high frequency hearing loss. I had her in speech at 2 as being a teacher,, I knew she was behind in her vocabulary and then they released her. At that time I just knew she was mildly delayed with her expressive language. I didn't know she had any sort of hearing loss and I don't believe they tested her either. I didn't really have access to a good hearing evaluation on her until she was older.. kindergarten or 1st grade. Her preschool and kindergarten teachers thought she was sweet and quiet and she could follow along with the routines. We hit up against the wall in 1st grade when she struggled learning to read. We had a full case evalu done through the public school (she went to a private school) and we also consulted with a private special education advocate so she could review the information as well..

and during the big evaluation they said she had both expressive and language delays and some auditory processing issues too.

and she got a FM hearing unit.. (it isn't a hearing aide.. it just brings the sound from the teacher who wears a unit and it goes right into my daughter's unit we got this through the public school.. she only wore during her second year in 1st grade.. ) We secured a reading specialist.. (private expensive..ugh but excellent one on one..) as she was in a private school and I didn't want her in the public school therapy.. a big room.. several kids.. not as much attention. She was in hearing therapy for several years and we also ended up holding her back in first grade (against the public school's advice.. they were WRONG)

for another year of speech and hearing. It was the BEST decision ever. She graduated jr high and high school with honors and now thrives in college in advertising art. She has always been a visual learner. No one even knows she has the loss she has as the therapists taught her different skills to help compensate and she was released from speech and hearing I think about 4th grade and just flourished afterwards..)

I say this to you to encourage you to keep advocating for your child to get any services he is entitled to in preschool and elementary and beyond. Sometimes it isn't easy and you may have to fight for things.. even with your medical insurance. We had our daughter in speech year round even in the summer. I used to have to battle for that and have her pediatrician write a letter and her speech therapist to the medical insurance. when they are young IS the time to do this to help address the delays..I firmly believed with her delays she could catch up if she went to therapy read round and we completely enriched her environment.

If you are positive and friendly each year with his classroom teachers, they will work with you. Continue on with the speech as I'm sure the delays will be there for a while. He will thrive and have very special talents and gifts that make him so very unique! I have learned so much from my daughter and her unique way of looking at the world has made her very happy and successful in college and in life.
I'm sure others will share their stories too! good luck and let us know what happens. Try and just love your child and know with the right therapy, he will do just fine!

Hi - I was born hard of hearing in both ears, they describe it as 'moderate sensoneuroal hearing loss'. I wear hearing aids and have done well through life. I'm a successful physician assistant and use an amplified stethoscope w/my patients. I was in early intervention and then went to deaf/hard of hearing classrooms till I was 13 when I was transferred to regular hearing schools with no difficulty. Sometimes I think the special ed classrooms make one feel that they will never suceed in life because they are disabled, and that is why my parents pulled me out. My advice to you is be on the same page with his teachers, make sure they know he is hard of hearing. There are many groups for kids/parents with hearing loss, join them. Don't let the fact he has a mild hearing loss define who he is. I'm defined by who I am, not that I wear hearing aids and can't understand dialogue too well in movie theaters. I got speech therapy for many years but I still talk with a slight lisp. Most people don't notice.
Never let him be embarassed about his hearing loss. Make him proud and confident by encouraging his skills in sports, hobbies, etc. Never let others put him down or discriminate. I've been through all of this and keeping my head high had helped me become who I am today.
As for hearing aids, the top notch place I go to is Northwest Speech and Hearing Center, in Arlington Heights, IL. They will do a full diagnostic evaluation of his hearing, and then advise what hearing aids would work best for him. I went to other hearing aid places (Sears, Golf Mill, etc) and none can beat the professionalism and quality of Northwest Speech and Hearing. I dont have the # but you can google it. Their speech audiologists are very knowledgeable and supportive.
I love my hearing aids -- they are behind the ear because I have lotsa wax and in the ear models will get messed up by it. Again Northwest Speech and Hearing will tell you all your options. If people can see them when I wear them, I don't care. It helps me hear. My daughter is 3 and we were so fearful she was hard of hearing because she failed several tests (she passed her newborn screening) but she had a sedated hearing test and finally that was negative. She hears so well and often tells me when someone is coming down the stairs or when papa has arrived home. Good luck and feel free to email me with any questions.

L.,

How frustrating for you to only catch the hearing loss after several tests and speech therapy. Luckily it is still early and with the proper hearing aids and therapy your son should be able to catch up quite a bit before Kindergarten.

My daughter failed the newborn hearing screen. At three months she tested only very slightly for hearing loss. At 1 year she tested for a mild to moderate high frequency hearing loss. She is now 2.5 she has been in Early Intervention since she was 1. My daughter's speech is at a 3.5 year old level. So even with the hearing loss she is doing well ahead of her peers.

EI paid 100% for her hearing aids. It seems unfair that EI failed to diagnose your sons hearing loss and now he has aged out and you may have to pay that expense. Maybe your school district will pay for the hearing aids or an FM system.

I would check with Early Intervention, your school district, and LICA (www.lica.k12.il.us)on who may pay for the hearing aids. My daughter sees Bonnie Rodin with Lica - her contact information is on the LICA home page. Bonnie is very knowledgable about services available for hearing loss. My daughter sees Georgette Schroeder an audiologist at Lutheran General Hospital in Park Ridge. Georgette is also very knowledgeable about hearing loss in children and the state services available.

Now that my daughter has hearing aids I notice lots of kids everywhere I go (i.e. school, sporting events and church) with hearing aids. You should know that your son will do just fine with the proper support!

Good Luck!

J. C

L.,
I'm not sure if this is helpful, but you may want to look into state programs that may provide subsidies for your child's hearing aids and/or surgery.
It may not be applicable, but I have an aunt in Indiana that receives money for her hearing aids. This is because the state of Indiana has a program that tries to keep 'people with disabilities' in the work force. My aunt says she doesn't consider it a disability, but she definitely appreciates the help on paying for her hearing aids. She always says that if it weren't for that program, she wouldn't have access to the level of care and technology that she currently receives.
Good luck!

Call Community Alternatives at ###-###-####. They are my liasons for kids with developmental disabilities. They are territorial so there might be a different group for your area but they should know who it is. There is state aide out there for qualifying kids with disabilities and these liason groups know how to get it. You might also want to contact Easter Seals. I know they work with kids to some extent with hearing loss because my grandson was sent there by EI for a hearing test before he turned three. Good luck.

I raised my grandson who is now 18. His stepmother did not believe in giving antibiotics to kids and he had numerous ear and sinus infections. By the time he was placed in our care, he was five and when infections again occurred we took him to doc who found a tumor had formed from scar tissue from past infections and destroyed almost all of the conductive bones in his left ear. They did surgery to remove tumor and placed a prosthesis bone in place to conduct some sound. He was fit with a hearing aid. Normally we think that they should then be able to hear. However, because of the TYPE of hearing loss, other accomodations needed to be made in the classroom for him, i.e. seat placement, control distractions. He still has a 70% loss in one ear and when you learn about hearing loss, you will be amzed at what problems a hearing loss can cause. So, check with your ent again and get the details on the type of hearing loss. You don't just plop a hearing aid on the kid and magically he hears. You will need an IEP in school for him. His testing will need to be done under certain conditions so he doesnt miss anything. Lastly, go online and look up hearing loss. You will be amazed. The good news is that you have found it and can now help him.

In 1984, I was diagnosed with being a hearing loss. I am deaf in one ear and partily in the other. I stopped talking for a year and I had to have speech therapy for a while to catch up and learn to speak more effectively. I focused on my weaknesses and turn them into strengths. You can look into resources that are available to you and maybe you can get some assistance in buying your son hearing aids. I wear one hearing aid and I never had surgery. Keep the faith and know that God is with you. Good luck and God Bless!

Here some information that may be benefical to you:
A-1 Hearing Aid Center
1627 W. Belmont
Chicago, IL 60657
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Hi L.,

My husband was diagnosed with moderate/severe hearing loss at age 3 back in 1967. Granted, many things have changed since then but I wanted to share a couple things. First, the hearing aids should not cost more than $4,000 tops. Hopefully you can find an organization to pay for them but he has never found any health insurance to pay for them - sadly. Second, he has succeeded very well in life and is a college graduate and now a successful salesman in the audio visual industry selling million dollar TV studios to his clients. So, while this may seem like a huge ordeal to overcome, it can be overcome and your son can and will be able to deal with this challenge with a loving parent like you. Lastly, he recommends Mobile Hearing out of Skokie or Costco Hearing Center in Oak Brook (he has not gone to Costco but plans to soon as there was a very good write up about it in the paper recently and he needs new hearing aids - FYI, they are only in Oak Brook not at all the other Costcos). He went to that Northwest Hearing place in Arlington Hts about 10 years ago that the other poster recommended ... and at least back then they were big pushers of only one kind of hearing aid that does not work well for all (they were likely getting some kickback or something).

I hope this might help. We will say a prayer for you and your family.

L.

L.-
Here is a link to a website reviewing the results of chiropractic on hearing loss. As a pediatric chiropractor this is one of the things I work with. Check out this site http://www.chiro.org/research/ABSTRACTS/Deafness.shtml. If you have questions feel free to call the office. I am in Oak Park, but to find a chiropractor near you the works with kids go to www.icpa4kids.org, this site also has great pediatric case studies.
In Health,
Dr. J. Aardema
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