Deaf or HOH moms...I really need some help

[greenluv]

Ok, I know we have a few moms here who are deaf or hard of hearing themselves as well as moms of deaf or hoh kids. I'd love some input from both about making an educational plan for my Bella, who will be one in about a month. I know some may think that a baby just turning a year old is a little early to be worrying about this but I am willing to do whatever I must.  Even pack up and move across the country if necessary.

Let me give you some info:

 My Bella was born deaf last summer and our goal had been cochlear implants-which has now been done. Just last week, actually. However, during the surgery her ear drum had to be removed due to malformations of the facial nerve making it's placement difficult to work around. Seriously, the malformations were everywhere from the cochlea itself to the hearing nerves being weird.  In the end, the implant was placed but we have a narrow chance that dd's benefits from this will be significant enough to really help her develop as well as we'd hoped.

Our school for deaf has been closed and is now outreach only. I don't know if putting dd into a mainstream public school is the best choice. I just don't know what I should know, kwim??

Moms, if you are deaf or HoH, is there anything you wish your family had known or done differently?

If you're a mom of a child who is deaf or HoH, what wisdom have you gained?

I think I'm having one of those days when it's really hard to just keep rolling with the punches.

[oddduck]

Hey mama,

I my DD2 is moderately HOH bilaterally. I just wanted bump this for you since your LO is the same age as mine I really don't have any/much additional wisdom...

You've got a lot of time to figure out what your going to do with her education wise.  I work in the school system here and have discussed my little one with a few LSTs (learning support teachers).  We're hoping her hearing improves after surgery in the fall otherwise I'll make sure they install an FM system ;) and enrol her in regular classes.

We happen to have a school for the deaf in the city and I've heard great things about it.  My audiologist provided me with loads of information when we were working on her diagnoses.  The kids there do awesome.  If her hearing loss was severe I would send here there.  Where is the closest school for the deaf?  I know the one in our city does boarding for out of area students (not that anyone would want to board there 4 or 5 year old but it's at least an option).

[~cassie]

My son was born deaf and uses Cochlear implants. I wish I could be of more help but I don't think i will be. My son does extremely well with his so we haven't had to worry as much. If I were I. Your shoes-I do think I would seek out a more appropriate school for her. If the CI are of little to no benefit, then sign language will be your best bet, which I'd already start with if you haven't yet. I hope you come to a decision that works for your family.

[greenluv]

Thank you both for responding, I appreciate it.  I'm not actually sure where the closest school for the deaf is located. I think I'll call around and start asking questions. I know of one day school in another state where dd would be able to start at 2.9 years old, which isn't too far off really.

Yep, we are doing sign with her, too. She understands more signs than she makes right now but she's progressing. It's just so hard to know what to do when you live in a state where there is no charge for dd's educational and intervention services-I forget the term for this-but the educators have little or no experience with deaf kids vs moving to a state where we would have to pay for her evaluations but maybe could find people with experience.

[hdirks]

We are in a similar situation to yours. My dd is 2 and was bilaterally implanted last summer. With that being said, she has no malformations with her ears and everything looked great during surgery but her hearing nerves never gave a response. June 30th just marked the year date for us for being activated and to be honest, I'm not sure we're any further along than we were a year ago. My dd does have some brain damage from birth and they are thinking that this is causing the lack of response. Her left side gets absolutely nothing while her right side they are unsure about what she will hear. She does give some responses while being mapped and extremely loud environmental sounds I have seen her turn to (but I mean it has to be EXTREMELY loud) so while she will probably never hear speech sounds, this is at least hopeful she may be able to hear cars or things environmentally for safety.

We are struggling with the school issue too. For our AEA to continue seeing her they are wanting us to send her to school next year when she turns 3. DD has extreme developmental delays and still cannot walk. She also refuses to use any signs so as of right now she has no communication. So mainstreaming her is a big concern for us but the nearest school for the deaf is over 2 hours away.

I think we will give the mainstreaming a try since she will have her own associate at all times anyway. If I don't like the way it is going I might consider home schooling.

It's such a tough decision! You can always PM if you want to chat more!

Good luck making your decision, we're still working on ours :)

[greenluv]

Originally Posted by hdirks 

We are in a similar situation to yours. My dd is 2 and was bilaterally implanted last summer. With that being said, she has no malformations with her ears and everything looked great during surgery but her hearing nerves never gave a response. June 30th just marked the year date for us for being activated and to be honest, I'm not sure we're any further along than we were a year ago. My dd does have some brain damage from birth and they are thinking that this is causing the lack of response. Her left side gets absolutely nothing while her right side they are unsure about what she will hear. She does give some responses while being mapped and extremely loud environmental sounds I have seen her turn to (but I mean it has to be EXTREMELY loud) so while she will probably never hear speech sounds, this is at least hopeful she may be able to hear cars or things environmentally for safety.

We are struggling with the school issue too. For our AEA to continue seeing her they are wanting us to send her to school next year when she turns 3. DD has extreme developmental delays and still cannot walk. She also refuses to use any signs so as of right now she has no communication. So mainstreaming her is a big concern for us but the nearest school for the deaf is over 2 hours away.

I think we will give the mainstreaming a try since she will have her own associate at all times anyway. If I don't like the way it is going I might consider home schooling.

It's such a tough decision! You can always PM if you want to chat more!

Good luck making your decision, we're still working on ours :)

hdirks, thanks for responding! I see you're in Iowa, which is cool cuz that means you're in my neck of the woods! 

In our convos with our school for the deaf rep. we've learned that Bella having an interpreter with her in class isn't quite as good as having a teacher trained to teach the deaf student. This is what I'm struggling with now. I'm also told that in the beginning some kids will learn a little sign but by older elem. age this drops off and soon the deaf student is more socially isolated in the mainstream environment.  If there is one thing I want more than anything else, it's that I don't want her socially isolated. As Bella is the youngest of 5, we're all learning to sign so she's picking up signs quickly. I just hope I can keep up with her! 

[hdirks]

I agree. With Lani not doing any sign either I feel she will already be isolated in any school. It's a tough decision! Where are you located it and where was she implanted at?!

[hannahgrace]

My twins are 2.5 years with global delays and bilateral hearing losses. (cCMV+) They don't walk either. We have a "choice book" that I made for them. Basically, I took pictures of everything and then put the pictures on a black binder with velcro and they can choose what they want. They sign a little but because of their mobility issues, their signs are hard to comprehend at times. Its slow, but we are learning how to better communicate with them. I'm also learning what certain sounds they make mean.

As for school, we are hoping to get them into our local public school that has a deaf and HOH program.

[greenluv]

hannagrace,  thanks for the reply.  Are Ci's an option for your twins??

hdirks, Bella was implanted at Mayo in Rochester. Her activation appt is the 26th of this month and I'm both excited and scared of what will happen. We're in S.D., for the moment anyway.

[hannahgrace]

CI's have never been mentioned as an option. One has hearing aids which help a lot. THe other, we've had some major issues getting a correct ABR. One ear has profound loss and we aren't able to determine if there is loss in the other ear because he had PE tubes placed before the ABR and that made the results skewed. Not understanding my son's developmental delays, the team thought they would be able to determine if there was loss in a booth test...so far though...booth tests have been a total failure. So we need another ABR. But because of the risk of sedation and his compromised airway, the risk was outweighed by benefits. Grrrr...but his health is a lot better so we will do a repeat ABR this summer.

[fairejour]

My daughter has bilateral cochlear implants, but ASL was her first language, as she was not implanted until age 5.

First question, what is your goal? Do you want your child to be a spoken language user, ASL user, or both? Your goal will determine what services she needs and where you can get them.

Second, has she been activated yet? If not, wait until then to determine what the prognosis is. Your child could very well get excellent benefit, as most children do. You won't know until AFTER activation (and actually, probably not for several months.)

Third, my daughter had some of her inner ear removed in her first CI surgery, so as to not come too close to the facial nerve. It has not affected her one bit.

Fourth, I am not a huge fan of mainstreaming, ESPECIALLY when it is done because it is the only option. I moved cross country to get my daughter (age 8) the best services in the world, and while we have only been here 6 months, it was the best decision we could have made. Her language is blossoming and they have gone back and filled the language "holes" that she had from poor services early on.

Lastly, I would highly recomend joining http://groups.yahoo.com/group/cicircle/  It is a group just for parents of kids with implants. It is a wonderful resource.