HELP! New to this

iVillage Member
Registered: 06-20-2007
HELP! New to this
7
Wed, 06-20-2007 - 11:56pm

Hi,

I am a new mom to a 4 month old and I think she may be hard-of-hearing(HOH). She failed her newborn screening and was re-tested a month later. The ENT said is wasn't bad, nothing to worry about, but with the 3rd test it got worse. She's scheduled for another test in August and i am absolutely terrified to find out what it says. I have been feeling so down, guitly and angry because this doesn't run in our families and I had a healthy pregnancy. Lately I have been taking it out on my poor husband :( To all of you who have HOH children, how did you manage when you first found out? How are your kids doing with their communication skills? How about school? I heard Deaf/HOH children don't have more than a 4th grade reading level once they graduate high school. HELP i'm so confused and scared!

iVillage Member
Registered: 03-27-2003
Thu, 06-21-2007 - 9:14am

Hi and welcome to the board.

I know how overwhelmed you're feeling right now but you need to take it one step at a time. I am the mom of a 9 year old HOH son. He's been aided since 3 years old with a moderate/severe hearing loss. Hearing loss does not run in our families and I also had a very normal, healthy pregnancy.

If your child does have hearing loss, you are catching it at an early stage which will make speech/language development come at a normal progression. Newborn screening were not mandatory when I had my son. If they were, we possibly could have diagnosed it much earlier. My son had a lot of catching up to do. My son is going into 4th grade and has been in a regular classroom during all of his schooling. He has beautiful speech and excellent grades in school. He loves to read and give oral reports!! My son is a very normal 9 year old. He plays sports, loves the outdoors and has many friends. Being hearing impaired has not impeeded him in any way. Yes, we need to make a few accommodations, but overall, he has a very normal lifestyle and his aids are part of who he is. He is comfortable with his aids and is not embarrassed or ashamed. We won't have any of that.

If your child is HOH and needs aids, with being so young, she will be able to progress at a normal rate. It is hard to accept in the beginning and you can't help but feel down...it's normal.

Anyway, hope this helps and please keep us updated on your daughter's progress.

--Gina

iVillage Member
Registered: 06-20-2007
Thu, 06-21-2007 - 7:26pm

Wow! Thank you so much for your post. It was very reassuring and gave me much needed hope for my daughter. When I started doing some research about this, I came across many heartbreaking stories and not-so-good facts about this impairment. I didn't come across any success stories, until now, And that is why i was so concerned. It's nice to know that there are others out there who have not let this impede them in any kind of way.

So did you ever find out why your son was HOH? I'm still trying to figure out how this happened to my daughter since there's no history in our families. But I guess that won't really matter; the important thing is to help her as best I can. Thank you once again for your post. I will keep you updated!

-ilove_myDD

iVillage Member
Registered: 03-27-2003
Fri, 06-22-2007 - 7:36am

I'm so glad I was able to give you some reassurance. We never have found out the "cause" of our son's hearing loss. We never went through w/ the genetic testing. Before we knew he was HOH, we had already had another child (she hears perfectly). If we were going to have more children, we may have gone through with it.

With the technology of today, hearing aids do an amazing job. It is confusing in the beginning but like anything else, you can learn as you go.

Best of luck to you and your family and again, keep us posted.

Gina

iVillage Member
Registered: 03-25-2003
Fri, 06-22-2007 - 10:37pm

In your post, you said:

" heard Deaf/HOH children don't have more than a 4th grade reading level once they graduate high school."

There is one study that was done one time with one group of students at one school and it determined that the majority of them did have 4th grade reading levels. Unfortunately, I think that it has become more of a self-fulfilling prophesy than the absolute truth.

Here is the deal (by the way, I am a teacher/administrator)... Many of our kiddos, in the past, were identified very late (i.e. around age 2) and, therefore, language development was delayed. Children who receive appropriate amplification and good, purposeful language instruction (signed or oral) don't come to the classroom with the same level of language delay (if any) as children in the past. Also, I can't tell you who did the studies on this, but I have read that deaf, hearing, and hard-of-hearing children of deaf adults often do not experience any language delay. LANGUAGE = LITERACY

iVillage Member
Registered: 03-10-2004
Wed, 07-04-2007 - 3:00pm

Let me give you another success story!


My daughter is 14 years old and profoundly deaf in both ears. She has had a cochlear implant since age 3 and is thriving. She speaks wonderfully. She signs fluently. She hears with her implant. She is a typical 14 year old girl. She can read. She can write. She does well in school. She is going into the 8th grade this year, but is reading and doing math and language arts on a 6th grade level. That whole 4th grade reading level myth is just not true. Being HoH/deaf is not a guarantee that a child will not thrive. Yes, my daughter has to work hard to get to where she is, but we all have to work hard to get anywhere in life.


I do know how scary it all must feel for you. We didn't have the benefit of newborn screening in 1993 and our daughter was not diagnosed until 21 months old. We suspected something at 8 months, but no one even considered hearing loss...including the pediatrician! Once we found out, I experienced all the emotions you mention. It's a big blow to find out your perfect child isn't exactly perfect. I too had a normal healthy pregnancy and there was no history of hearing loss in either of our families. We may never know why our daughter was born with a profound sensorinueral hearing loss, but honestly it matters no more. Our daughter is a fabulous girl and I have no doubt she will go on to do something very special in life.


Hang in there!!!


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iVillage Member
Registered: 07-05-2007
Thu, 07-05-2007 - 4:48pm

Hi!

I am the mother of a 2 year old with profound hearing loss.

We did go ahead with genetic testing, and although there is no history of hearing loss on either side of the family, it turns out that my DH and I are both carriers of a specific genetic mutation known as Connexin 26.

We have a 25% chance of having a child with hearing loss.

I know this point in your journey is terrifying, but please trust me when I say everything will be just fine.

As a previous posted said, take this one step at a time. HOH kids can be (and generally are) fully mainstreamed and just like "normal" kids these days. Early intervention is key.

My daughter's hearing loss is profound and hearing aids did not give her enough hearing to develop speech. So, she was implanted with a Cochlear Implant at 14 months of age. She will be 2 next month and is already at a 21 month old's level of language development. The goal is generally to be age appropriate in language by the age of 5, but she is on track to be age appropriate before age 3. We are so proud!

She is in a mainstream daycare setting and is completed adapted socially - and is actually one of the class leaders. Her impairment has not held her back in the least.

Your DD *will* be just fine! And I know this sounds really silly, but I almost miss the days when my daughter wore her cute little pink hearing aids.

Please post updates... I would love to hear more about her!

iVillage Member
Registered: 06-20-2007
Thu, 07-05-2007 - 7:01pm

Thank you so much for sharing your story with me. You don't know how relieved I am now that I've read so many encouraging messages on this board.

She will be tested again when she turns 6 months (next month) and I will keep you all posted. I hope that it hasn't gotten worse, but I also know, now, that whatever happens my DD will have a "normal" life.

Thanks once again and I look forward to keeping you updated.

-ilove_myDD