Deaf school or public school?

[CSign]

I hope his appointment went well. I know a few children with a BAHA and they seem to be pleased with it. Maybe your AuD can link you up with a few local families to chat with about it. I agree with Reba's point about the ENT- they are in no position to make recommendations about what is and isn't "necessary" for language development. If I were in your position, I would probably be writing a letter to that individual and CC'ing his/her boss about the inappropriateness of the comment. Beyond that, the comment could be detrimental to a child and family that doesn't have the fortitude to seek out more information to make an informed decision.

In terms of placement, I think you should go and visit the different options available. Only after you have observed them will you be in a position to determine which will be most appropriate and the Least Restrictive Environment. Regardless of placement, I would encourage you to continue with ASL at home and ensure that he has access within the educational environment as well.

As far as which placement is most appropriate, none of us are in a position to tell you which is best for your child. Only you know him, and only you have the ability to observe the placement options available.

You will know it when you see it.

 

[CSign]

P.S. Don't let your family get in your head. I doubt many (if any) of them have taken the time to learn more about what your son is contending with. Don't make choices for your son based on what others may or may not think. Make the determination with only his best interest in mind. The others will come to understand in time that you did what was right for him.

 

[slubahn]

What chromosome abnormality does he have?
Also, the ENT has no clue.......it should be the right of EVERY and ANY dhh kid to be able to function fully 100% both with and without hearing aids/CIs, breakable technology......technology breaks. He will always have his hands!

Well I wrote out a reply to you last night on my phone and it said it needed approval, apparently that never happened. He has a triplication in his first chromosome, the location is 1q23.1 to 1q23.3. He is the only one in the world so far to have a triplication in that region of the 1st chromosome. I agree with you, technology shouldn't be the determination of how a child learns and grows up!

 

[slubahn]

P.S. Don't let your family get in your head. I doubt many (if any) of them have taken the time to learn more about what your son is contending with. Don't make choices for your son based on what others may or may not think. Make the determination with only his best interest in mind. The others will come to understand in time that you did what was right for him.

Thank you so much for your kind words! I have decided that I will not be telling anyone in my family what my thoughts are at this point in time. I need to take the time for me to adjust and research as to what is best. If they care about me and Sean they will understand that I have to do what is best for him in the long run!

 

[slubahn]

Here is what happened today at the ENT. Saw the resident first and then the actual ENT. He said that he has dealt with a case recently that was similar and the child loves her BAHA. (as if one case means everyone should respond the same way??) He ordered a hearing test and we got it done today as well. Still showing a moderate to severe conductive hearing loss. The audiologist was very nice in listening to all my concerns and made sure to tell me that it is totally up to me, that it doesn't matter if the ENT thinks one way or the other. We are going to do a trial of the BAHA with a soft band, the audiologist will be calling in a couple weeks to check in and see if we want to think about getting the BAHA for keeps, even if its just with the soft band. They showed me what his hearing loss was like by showing the volume of a standard conversational tone and then replicating what his hearing loss would make our voices sound like. It was barely a whisper! Kind of upset me that we have been continually given the run around for 4+ years now. They did a hearing test with the trial BAHA on and he was in the "normal" (god i hate that word) hearing range.

So we will try the softband but I am still leaning towards the deaf school in Arkansas or somewhere... I don't think he is getting enough services with his IEP in our rural area and I don't see how they will be able to provide them in the future at this rate.

I will continue to teach him the signs I remember and try to teach myself more at home as I do more research.

I have no idea how to go about checking into the deaf school in little rock nor what to ask them, any advice on that matter would be appreciated.

Also, does anyone know why only some of my posts say they have to be approved by a moderator? Last night I spent 30 minutes on the little keyboard on my phone typing out a response to everyone and it seems to have gone the way of the socks in the dryer...

 

[slubahn]

Here is what happened today at the ENT. Saw the resident first and then the actual ENT. He said that he has dealt with a case recently that was similar and the child loves her BAHA. (as if one case means everyone should respond the same way??) He ordered a hearing test and we got it done today as well. Still showing a moderate to severe conductive hearing loss. The audiologist was very nice in listening to all my concerns and made sure to tell me that it is totally up to me, that it doesn't matter if the ENT thinks one way or the other. We are going to do a trial of the BAHA with a soft band, the audiologist will be calling in a couple weeks to check in and see if we want to think about getting the BAHA for keeps, even if its just with the soft band. They showed me what his hearing loss was like by showing the volume of a standard conversational tone and then replicating what his hearing loss would make our voices sound like. It was barely a whisper! Kind of upset me that we have been continually given the run around for 4+ years now. They did a hearing test with the trial BAHA on and he was in the "normal" (god i hate that word) hearing range.

So we will try the softband but I am still leaning towards the deaf school in Arkansas or somewhere... I don't think he is getting enough services with his IEP in our rural area and I don't see how they will be able to provide them in the future at this rate.

I will continue to teach him the signs I remember and try to teach myself more at home as I do more research.

I have no idea how to go about checking into the deaf school in little rock nor what to ask them, any advice on that matter would be appreciated.

Also, does anyone know why only some of my posts say they have to be approved by a moderator?

 

[CSign]

Thank you so much for your kind words! I have decided that I will not be telling anyone in my family what my thoughts are at this point in time. I need to take the time for me to adjust and research as to what is best. If they care about me and Sean they will understand that I have to do what is best for him in the long run!

Sounds like a good plan.

 

[Bebonang]

For specific reason why it is important to go to Deaf school (Deaf institution) so that your son can understand what is going on in the classrooms and learn a lot from the teachers and Deaf students as long as they are signing more clearly. Not only that, it will give your son good grades like A+ to B+. Also your son would be happy to be with the deaf children in the recess when they are out playing. They can communicate in signs more than trying to lipread (may try to listen) hearing children.

Mainstream is way of our league. It is all about being with the hearing children and get into the hearing world where your son would get frustrated trying to cope with this kind of life in the hearing world. There will be less accommodations in the real hearing world as he grows up. Not only that is your son will be separate from the Deaf Culture and Deaf community if you or the hearing school prevent him to go into the Deaf world. He needs to know where we are and would like to have Deaf mentor to help him adjust to the Deaf world and to be a member of the Deaf community.

Just listen to him (meaning watch him what he is expressing his feeling about what he want to do in his life). No one should change him to be like an hearing person as he will never be able to hear like a hearing person.

Remember that hearing aid is just a tool and so is CI.

 

[TXgolfer]

and just so you know sluban, Txgolfer is late deafened, and has NO experience with Dhh education.

Your statement is not completely accurate. You are entitled to your opinion....IMO the child has a better chance of being successful by attending a private school.

 

[Bottesini]

Your statement is not completely accurate. You are entitled to your opinion....IMO the child has a better chance of being successful by attending a private school.

I wonder what part of that statement is inaccurate? Since you are deafened as an adult, have no deaf children, and are not a teacher, it looks pretty accurate from where I stand.

Also , what private school do you recommend for a deaf, cognitively delayed child , with what is probably 18q- syndrome?

 

[deafdyke]

Here is what happened today at the ENT. Saw the resident first and then the actual ENT. He said that he has dealt with a case recently that was similar and the child loves her BAHA. (as if one case means everyone should respond the same way??) He ordered a hearing test and we got it done today as well. Still showing a moderate to severe conductive hearing loss. The audiologist was very nice in listening to all my concerns and made sure to tell me that it is totally up to me, that it doesn't matter if the ENT thinks one way or the other. We are going to do a trial of the BAHA with a soft band, the audiologist will be calling in a couple weeks to check in and see if we want to think about getting the BAHA for keeps, even if its just with the soft band. They showed me what his hearing loss was like by showing the volume of a standard conversational tone and then replicating what his hearing loss would make our voices sound like. It was barely a whisper! Kind of upset me that we have been continually given the run around for 4+ years now. They did a hearing test with the trial BAHA on and he was in the "normal" (god i hate that word) hearing range.

So we will try the softband but I am still leaning towards the deaf school in Arkansas or somewhere... I don't think he is getting enough services with his IEP in our rural area and I don't see how they will be able to provide them in the future at this rate.

I will continue to teach him the signs I remember and try to teach myself more at home as I do more research.

I have no idea how to go about checking into the deaf school in little rock nor what to ask them, any advice on that matter would be appreciated.

Also, does anyone know why only some of my posts say they have to be approved by a moderator?

On the other hand, I do know that the overwhelming majority of kids with autosome chromosome issues tend to have significant expressive spoken language issues. I'm one of the few who don't. As a matter of fact, my organization has a couple of kids who have perfect hearing, but who use ASL/Sign as a first language b/c their spoken language delays are so severe.
Sign would be awesome for him....plus he could take advantage of group homes for mentally handicapped dhh adults when he is older...as well as services and stuff targeted towards the Deaf community.
I have a simlair loss (although I have traditional aids rather then BAHA)
Again, I'm glad I can hear but again technology cannot transform a hoh kid into a hearing kid. The world is NOT a soundbooth. Amplification cannot even come CLOSE to mimicking nautral hearing. Definitly look into the Deaf School....contact them, directly, say that you're interested in maybe sending your son there, see what they offer and have.....If you live in a rural area, I can guarantee that your school isn't going to offer all that much....and they most likely last had a "hearing impaired" (and most likely mentally normal) kid..20 years ago.

 

[deafdyke]

I wonder what part of that statement is inaccurate? Since you are deafened as an adult, have no deaf children, and are not a teacher, it looks pretty accurate from where I stand.

Also , what private school do you recommend for a deaf, cognitively delayed child , with what is probably 18q- syndrome?

Exactly!!!!! Most outplacements for mentally handicapped kids (ie Easter Seals, United Cerebal Palsy) tend to be for moderate and more affected kids. There really doesn't seem to be a lot of placements for more mild kids. Besides, even if there IS those placements prolly wouldn't be experienced with deaf cognitively delayed kids.....most set ups like that are targeted towards hearing cognitively delayd kids.

 

[deafdyke]

and the number of dhh people who come here and say " I wish I had learned ASL" is countless...........ASL is awesome even for kids who can hear with HAs/CIs very well......

 

[slubahn]

No one should change him to be like an hearing person as he will never be able to hear like a hearing person.

Remember that hearing aid is just a tool and so is CI.

This is exactly what I am trying to explain to my family. My mom gets it, as does my grandma. The rest of the family, not so much. Very well said in my opinion. I think that the rest of my family is thinking that he will be "secluded from the real world" (their words not mine!) I think that the opposite is true. He will be able to experience both worlds and pick where he feels he fits in best as he grows up.

 

[deafdyke]

AMEN!!!!!!!!!!!!!!!!!! YAY!!!!!!!!!!!!!!!!!! A parent who GETS IT!!!!!!!
Here are some links for you!!!!
Arkansas School for the Deaf - Home
American Society for Deaf Children - Home
CDO - Welcome
Also check out the resources page at CDO!!!!!
CDO - Support Groups

I think that the rest of my family is thinking that he will be "secluded from the real world" (their words not mine!) I think that the opposite is true. He will be able to experience both worlds and pick where he feels he fits in best as he grows up.

You are 100% percent right. Ask your family if they remember how the special needs (of all stripes, including mental, hearing, sight etc) kids in their classes were physically there, but not really included.
HOH kids DO get plenty of exposure to the hearing world......but they miss out on Deaf World stuff.
With Deaf world stuff, your son can have a community of his own....including being a part of Deaf mentally disabled stuff. (most mentally disabled stuff tends to be for hearing mentally disabled.)

 

[slubahn]

I wonder what part of that statement is inaccurate? Since you are deafened as an adult, have no deaf children, and are not a teacher, it looks pretty accurate from where I stand.

Also , what private school do you recommend for a deaf, cognitively delayed child , with what is probably 18q- syndrome?

Even if there was a good private school out there that would be a perfect fit, there is no way I could afford it anyways. I'm sure there are some financial aid packages and such, but it seems like it would be out of my league anywas.

 

[deafdyke]

And the fact of the matter is that virtually ALL state deaf schools are VERY experienced with dhh mild mentally disabled students. (the severe and profound kids tend to be in severe/profound disability programs) Many of them even have specialized programs specificly for mentally disabled kids. Txgolfer, you're talking about a population that is very low incidence.
slubahn, I do want to say that I think maybe with ASL your son could be found to be smarter then the doctors and experts think. Who knows?

 

[slubahn]

AMEN!!!!!!!!!!!!!!!!!! YAY!!!!!!!!!!!!!!!!!! A parent who GETS IT!!!!!!!
Here are some links for you!!!!
Arkansas School for the Deaf - Home
American Society for Deaf Children - Home
CDO - Welcome
Also check out the resources page at CDO!!!!!
CDO - Support Groups You are 100% percent right. Ask your family if they remember how the special needs (of all stripes, including mental, hearing, sight etc) kids in their classes were physically there, but not really included.
HOH kids DO get plenty of exposure to the hearing world......but they miss out on Deaf World stuff.
With Deaf world stuff, your son can have a community of his own....including being a part of Deaf mentally disabled stuff. (most mentally disabled stuff tends to be for hearing mentally disabled.)

Awww you are too sweet! I think that had I not had a grandfather who is severly HoH and taken ASL in high school from a Deaf teacher that I probably wouldn't have been as receptive. Thank you so much for all the resources! The geneticist thinks that while Sean will always be delayed, that it will be pretty minor, and with him starting kindergarten when he is almost 6 that it might not be incredibly noticable that he has delays at least while in the early years. Hopefully that will also hold true and he will be able to cope easily as he grows.

I put his BAHA up to my bone and listened with the tv on and my family talking around me and I have to say, while everything was louder, it wasn't any easier to discern what anyone was saying. I had a lot of problems with chronic ear infections from infancy through to around 13, and still have occasional problems with them today and have a very mild hearing loss from it and it was definately not any easier to hear with them, just louder.

 

[Reba]

and the number of dhh people who come here and say " I wish I had learned ASL" is countless...........ASL is awesome even for kids who can hear with HAs/CIs very well......

How many say, "I wish I had learned SEE?"

Yep.

 

[deafdyke]

Awww you are too sweet! I think that had I not had a grandfather who is severly HoH and taken ASL in high school from a Deaf teacher that I probably wouldn't have been as receptive. Thank you so much for all the resources! The geneticist thinks that while Sean will always be delayed, that it will be pretty minor, and with him starting kindergarten when he is almost 6 that it might not be incredibly noticable that he has delays at least while in the early years. Hopefully that will also hold true and he will be able to cope easily as he grows.

.

No problem. I know exactly what you're going through in looking for info, as I was not told I had my deletion until I was 16. I saw Harvard Med School trained docs, and they were all " Our medical tests suggest you weren't intended for life on this planet."
Oh, so he'll be more mild or the type of kid who's not exactly mentally disabled but not exactly learning disabled? I actually think that's a HUGE reason why sending Sean to Deaf School would be awesome. He would get functional academic skills.....Like he wouldn't be lost in a sea of kids who are VERY academic. He would also get the advantage of instruction by teachers who are experienced with dhh special needs. (this is a very low incidence population) He could also take classes at local schools if there are areas that he is strong in.
He would be completely lost in public school Even if he was on par mentally, I would suggest looking into deaf school or program. Heck, I doubt that the schools in Arkansas are AWESOME. (meaning I bet ALL he would get in public school is a minimal accomondations approach, with front row seating, FM device, speech therapy, Resource Room etc)
Heck, remind your family there's still special ed in the mainstream.....and sadly most of THOSE kids still face low expectations etc.