Anyone with small children that are deaf/HOH?

[justagirl]

I am a mom of two children. A son that is 3 who is very HOH and a daughter that is hearing. I am wondering if anyone else has small children that are deaf/HOH. I'm finding it hard to get the help I need in my city for my son. The Public school have been no help to us, the state hasn't been helpful at all. And the school for the deaf/HOH is very expensive. I'm just wondering if there are resources that we are missing that we do not know about. I myself am deaf and you would think I would know just about every resource out there but I don't.

Our pediatrician has been great at helping us to find resources. But I would like to hear what you have to say.

Thanks!

 

[deafdyke]

What state are you in? Are there any regional dhh programs where you are? Those can be really good, especially for HOH kids! I think it rocks that you're looking into deaf ed for your hoh kid....very few hoh kids get the advantage of deaf ed.
You might want to push for placement at the deaf school........it's expensive yes..... but the early grades at the deaf school tend to be the good ones.....and it would be worth it, (and I mean the school district pays...you don't pay the tution) especially as the public school sounds like it's going to have the same attitude "Oh we're just going to give your son the absolute minimum" services accomondations etc. Rememeber public school is far too "one size fits all"

 

[deafdyke]

Do you have any Deaf friends locally who might be able to help you? What about Deaf social service agencies?

 

[justagirl]

Thank you so much for the reply deafdyke! I didn't know that about the school district paying for it! I'm trying very hard to push for placement. There is a preschool which is basically a sister school to the deaf/HOH school. That prepares children ages 3-5 for kindergarten for the deaf/HOH hearing school...which is fantastic. (they work on SL, lipreading and other forms of communication) We live in AZ, Phoenix area but we are still fairly new here and so I haven't gotten the chance to really make any friends yet. The other issue is where we are located the deaf/HOH school is right around an hour drive as it's located closer to the downtown area. But I'm willing to make the drive of course! I'll do whatever it takes for my son. I don't want him to have to go through what I did. I was the only deaf child in my school and no one did anything for me at all.

I have searched and searched and I can't find any regional deaf programs in our area. We live in a new development only a couple of years old and I'm thinking that might be why. Either that I am using the wrong search terms. I'm pulling my hair out trying to find something either closer or someone that will help us. I'm starting to feel like I'm running in circles at this point.

My husband and I even thought about getting him a tutor. So he could have private lessons at home...but I want him to experience kids like himself. He won't interact with hearing children because they don't understand him and he doesn't understand them either. (our son cannot speak although he tries so hard) So he hangs back and just watches them play; it breaks my heart. I want him to make friends that he can relate to.

I'm still looking for options and resources and so is our pediatrician so I am hoping when we go back to the doctor they might have something new for us to look into.

 

[deafdyke]

Oh, Phoinix Day School for the Deaf? Yes, definitly try to take advantage of that....it's such an awesome resource!!!! I mean yeah it would be an hour long drive.......but as you said he would THRIVE and he'd get the right accomondations etc.......and he would also know other dhh kids too!!! THAT is very very important!

 

[justagirl]

Oh, Phoinix Day School for the Deaf? Yes, definitly try to take advantage of that....it's such an awesome resource!!!! I mean yeah it would be an hour long drive.......but as you said he would THRIVE and he'd get the right accomondations etc.......and he would also know other dhh kids too!!! THAT is very very important!

Yes, I've heard it a wonderful school and it looks just perfect for him. I want him to go there so much. We are trying to get an appt to tour the school.

 

[deafdyke]

AND one way you could argue for placement is that although he's audilogically HOH, he's got no oral skills.....so he's functionally deaf... He'd also get appropreate speech therapy, and maybe an answer to why his oral skills haven't developed...... Not trying to be audist or anything, but I do know that development of oral skills is something that even DODA families may worry about. I can tell you that I do know of HOH kids who haven't developed oral skills or who were late speakers. But he has a language....YAY!!!!!!
Here are some REALLY good links for you: American Society for Deaf Children - Home
and Hands & Voices.. Also ASDB
(I know you're in Phonix but still......)ASDB

 

[justagirl]

Thank you so MUCH deafdyke. I have been worried like mad about his language skills. I do know that VERY late talkers run on my husbands side of the family. His dad for instance didn't talk till he was almost 5. (turns out he as a very small hearing loss) but when he started talking it was full sentences. Most of my father in laws sibs didn't talk until 4 or 5 years of age. And they are all extremely smart...and just didn't have anything to say or didn't feel the need to talk for whatever reason. Go figure.

We are looking into speech therapy because I am hoping that we can develop some sort of speech for him. He tries very hard to talk but he just can't because he can't hear clearly enough to understand. There is only one word he can say and it's still a little slurred but understandable. And that is "stairs". He is better at trying to mimic hard sound words...like things that begin with ST ...the word itself is hard and so it's easier for him to hear. Words that start with M he cannot hear at all. And the older he gets the more he watches my mouth when I speak.

He likes to try and count right now. For instance we were counting cups together. I said, "1,2,3" (while pointing at each cup) and he said, "toot, toot, toot" (while pointing at each cup) (and then he looks at me expectantly to see if he got it right...and of course I praise him and give him hugs and tell him what a great job that was...bless his heart, he really tries) The only word he could hear me say was the word Two and he tried to mimic that word. T words and ST words are the only sounds he can really hear. Unless they are a soft T like the word Three.

We are going to be doing the ABR testing. But I've read that after a certain age it's not as accurate? Is this true? I know my son is extremely hard of hearing and we are still doing test right now to find out just how bad. I really think its worse than we know at this point. When I look at him and how he reacts to sounds and certain things, it's like looking at myself at that age. He doesn't respond to loud noises at all. The only way he can tell if we are coming if he is not facing us, is if he is sitting on the floor he can feel the vibrations of our footsteps. And only then will he turn and look to see what is going on. And I'm the same way...and sometimes I still don't know. Can't tell you how many times my husband has scared the crap out of me by walking into a room and coming up behind me. He tries really hard to get my attention before he does that now...LOL

Sorry, I am just rambling, I know. I just want to do everything we can so that he can have the best life possible. We will do anything for him.

Thank you so much for the links, you have been wonderful!!! *big hugs*

 

[Bottesini]

In our state , early intervention went directly to my granddaughter's home, and that's common.

Have you been in touch with your area education agency?

 

[CSign]

In our state , early intervention went directly to my granddaughter's home, and that's common.

Have you been in touch with your area education agency?

Since he's 3, he's transitioned from Part C (under the age of 3, served by the county) to Part B (served by the district, ages 3-5). So at that age, home visits are less likely, however you raised a good question Bott.

Does your son have an IEP?

If it's a state school for the deaf, you shouldn't have to come out of pocket for anything. If it's a NPS, or private school then that's another story if you don't get the district to offer placement at one of the schools.

 

[GrendelQ]

Is the delay only in spoken language development? (Is your child age appropriately fluent in sign language?)

 

[deafdyke]

Thank you so MUCH deafdyke. I have been worried like mad about his language skills. I do know that VERY late talkers run on my husbands side of the family. His dad for instance didn't talk till he was almost 5. (turns out he as a very small hearing loss) but when he started talking it was full sentences. Most of my father in laws sibs didn't talk until 4 or 5 years of age. And they are all extremely smart...and just didn't have anything to say or didn't feel the need to talk for whatever reason. Go figure.

We are looking into speech therapy because I am hoping that we can develop some sort of speech for him. He tries very hard to talk but he just can't because he can't hear clearly enough to understand. There is only one word he can say and it's still a little slurred but understandable. And that is "stairs". He is better at trying to mimic hard sound words...like things that begin with ST ...the word itself is hard and so it's easier for him to hear. Words that start with M he cannot hear at all. And the older he gets the more he watches my mouth when I speak.

He likes to try and count right now. For instance we were counting cups together. I said, "1,2,3" (while pointing at each cup) and he said, "toot, toot, toot" (while pointing at each cup) (and then he looks at me expectantly to see if he got it right...and of course I praise him and give him hugs and tell him what a great job that was...bless his heart, he really tries) The only word he could hear me say was the word Two and he tried to mimic that word. T words and ST words are the only sounds he can really hear. Unless they are a soft T like the word Three.

We are going to be doing the ABR testing. But I've read that after a certain age it's not as accurate? Is this true? I know my son is extremely hard of hearing and we are still doing test right now to find out just how bad. I really think its worse than we know at this point. When I look at him and how he reacts to sounds and certain things, it's like looking at myself at that age. He doesn't respond to loud noises at all. The only way he can tell if we are coming if he is not facing us, is if he is sitting on the floor he can feel the vibrations of our footsteps. And only then will he turn and look to see what is going on. And I'm the same way...and sometimes I still don't know. Can't tell you how many times my husband has scared the crap out of me by walking into a room and coming up behind me. He tries really hard to get my attention before he does that now...LOL

Sorry, I am just rambling, I know. I just want to do everything we can so that he can have the best life possible. We will do anything for him.

Thank you so much for the links, you have been wonderful!!! *big hugs*

Mention that there's a history of late talking.....that actually might be the reason why he hasn't developed speech. The window is still wide open. Granted early intervention IS important......but there's still time. Still, I think that getting speech therapy directly from a deaf school would be AWESOME. ....You are very lucky to be in Phoinix!!!!!

 

[justagirl]

Mention that there's a history of late talking.....that actually might be the reason why he hasn't developed speech. The window is still wide open. Granted early intervention IS important......but there's still time. Still, I think that getting speech therapy directly from a deaf school would be AWESOME. ....You are very lucky to be in Phoinix!!!!!

Yes we are very lucky to be in Phoenix I am so grateful. I haven't been able to get on here day, as it's been filled with doctors appts. Well....what I ALREADY knew has been officially confirmed. Our son is almost completely deaf in one ear and has 40% hearing in the other. Hence why his language is so far behind. I knew he was HOH just didn't didn't realize (although I had my suspicions) that it was that bad.

So we have some opt. Obviously he is going to need help...once again...DUH! We have set an appt next week to go to the Phoenix Day School for the deaf/HOH. I'm still hoping that with speech therapy that he will be able to talk some. And if he is never able to that is okay with me as well. I love him for who he is and I am not ashamed of him. I'm very proud. So he is more like his mother in this way instead of his father. And I am very happy how I turned out.

My mother in law is having a very hard time coming to grips with this and I can't understand why. She makes it seems like it's the end of the world as we know it. And that he is not perfect. And believe you me my husband got a hold of her before I did and ripped her a new one. We told her either she accepts him for who he is or don't contact us. Is it just me or do a lot of people seem to think that deafness/HOH is the end of the world? I read some post on different sites with parents with deaf/hoh children and they all told about how they reacted when they found out. One lady even went so far as to say that all the dreams and wishes she had for her son were now crushed because of his deafness. How horrid is that? It's not like you found out your child has cancer or something. I just don't understand why people think of us as stupid or incapable of anything.

To answer another posters question we did have someone come out to our house for one visit. It didn't go to well. Our son kind of freaked out on the lady. He was just very scared and she was wanting to do some "test" to see where he fell as far as his mental capacities went. To see if he was on target for his age and what he was lacking. We finally made it through it, and all he is lacking is speech and communication. In some areas he is right on target in others he is ahead. It's just the speech/communication.

He is NOT fluent in ASL as someone asked but he is learning ASL. My husband and I speak and sign at the same time to him as he is always watching our lips. He is starting to catch on to what we are saying and is taking cues as well. He knows that if we are putting on our shoes that we are going out, so he runs get's his shoes, cup, and his Lighting McQueen and Mater cars. (these are he safety/comfort objects) Cues like that.

I am just hoping and praying that we can get him into this school so that he can get the building blocks he needs to be successful in life.

If we can't get him into this school or are put on a wait list I am not sure what we would do. I'm very grateful to you all that have offered great advice and help. You have been wonderful.

All to CSign...that was the only home visit we will get. From what I understood from that lady that came that was all she could do. That our school district will not accept him as all testing and anything had to be done earlier in the summer...May/June and since the school year has already started (and we talk with this lady back in July) that he is not eligible for any of their programs. Which just doesn't make sense to me since it's obvious that he needs help now not next year. It's been frustrating. So we have had all our eggs in the one basket that we can get him placed in the Phoenix Day school, which I would prefer anyways because it's better than what a public school can offer IMO. But I could be wrong.

Sorry for the long post just trying to answer everyone's questions. Thank you again so much and again if you have anything else to offer or know of anything else I could check out please tell me know.

 

[deafdyke]

Yes we are very lucky to be in Phoenix I am so grateful. I haven't been able to get on here day, as it's been filled with doctors appts. Well....what I ALREADY knew has been officially confirmed. Our son is almost completely deaf in one ear and has 40% hearing in the other. Hence why his language is so far behind. I knew he was HOH just didn't didn't realize (although I had my suspicions) that it was that bad.

So we have some opt. Obviously he is going to need help...once again...DUH! We have set an appt next week to go to the Phoenix Day School for the deaf/HOH. I'm still hoping that with speech therapy that he will be able to talk some. And if he is never able to that is okay with me as well. I love him for who he is and I am not ashamed of him. I'm very proud. So he is more like his mother in this way instead of his father. And I am very happy how I turned out.

My mother in law is having a very hard time coming to grips with this and I can't understand why. She makes it seems like it's the end of the world as we know it. And that he is not perfect. And believe you me my husband got a hold of her before I did and ripped her a new one. We told her either she accepts him for who he is or don't contact us. Is it just me or do a lot of people seem to think that deafness/HOH is the end of the world? I read some post on different sites with parents with deaf/hoh children and they all told about how they reacted when they found out. One lady even went so far as to say that all the dreams and wishes she had for her son were now crushed because of his deafness. How horrid is that? It's not like you found out your child has cancer or something. I just don't understand why people think of us as stupid or incapable of anything.

We finally made it through it, and all he is lacking is speech and communication. In some areas he is right on target in others he is ahead. It's just the speech/communication.

He is NOT fluent in ASL as someone asked but he is learning ASL. My husband and I speak and sign at the same time to him as he is always watching our lips. He is starting to catch on to what we are saying
I am just hoping and praying that we can get him into this school so that he can get the building blocks he needs to be successful in life.

If we can't get him into this school or are put on a wait list I am not sure what we would do. I'm very grateful to you all that have offered great advice and help. You have been wonderful.



Sorry for the long post just trying to answer everyone's questions. Thank you again so much and again if you have anything else to offer or know of anything else I could check out please tell me know.

First of all, thank GAWD for the spoken language delay and the fact that he's not quite fluent in ASL.....you can use that to grease the skids towards admission. It's not guarenteed that he will ....BUT, he most likely will not be able to get the quality of services that he would from PDS, in an inclusive/mainstream setting. I seem to recall from another parent that the Phoinix/Arizona area tends to be a "either or" education-wise. Meaning, it's either a specialized setting or inclusion. Which really sucks, since regional dhh programs can be very good too. Like it can give kids the benifits of both mainstream and deaf ed.
And I hear you on some people's reactions. It's like....yes its unexpected.....but have you ever noticed that the very same people who mourn and grieve when a kid has relatively mild disabiltes are the same type who would disown their kid for beign gay?

 

[justagirl]

First of all, thank GAWD for the spoken language delay and the fact that he's not quite fluent in ASL.....you can use that to grease the skids towards admission. It's not guarenteed that he will ....BUT, he most likely will not be able to get the quality of services that he would from PDS, in an inclusive/mainstream setting. I seem to recall from another parent that the Phoinix/Arizona area tends to be a "either or" education-wise. Meaning, it's either a specialized setting or inclusion. Which really sucks, since regional dhh programs can be very good too. Like it can give kids the benifits of both mainstream and deaf ed.
And I hear you on some people's reactions. It's like....yes its unexpected.....but have you ever noticed that the very same people who mourn and grieve when a kid has relatively mild disabiltes are the same type who would disown their kid for beign gay?

EXACTLY on the last part of the post. I just don't get it. If my kid came to me and said "Hey, Mom" I'm gay. I would be surprised probably unless I kinda knew or something. But I would be like, "Okay, if that makes you happy and that is what you want, then that is fine." I believe that one should do what makes one happy, so long as it doesn't hurt anyone or anything else (ie child abuse...animal abuse...etc..). Life is far too short to try and conform to make everyone else happy because that is the "norm". One should do what one feels is right...unless it hurts child animals...or serial killers...you see where I'm going with that. LOL

That is really good to know on the whole ASL thing, I didn't know that...and I never would have thought about it being a bad thing. There is so much I don't know since I was thrown into the public school system and I was the only deaf child. My mother didn't do much for me there and refuse to learn ASL. My grandmother (who ended up raising from 6th grade on) was the only one that advocated for me and took me to the doctors and did all that she could for me. My mother is the reason for my hearing loss at the age of 1. But like I said deafness runs in the males of my family.

You have been such a fountain of information. I am so glad I found this site and you! You rock!!!! :

 

[CSign]

Yes we are very lucky to be in Phoenix I am so grateful. I haven't been able to get on here day, as it's been filled with doctors appts. Well....what I ALREADY knew has been officially confirmed. Our son is almost completely deaf in one ear and has 40% hearing in the other. Hence why his language is so far behind. I knew he was HOH just didn't didn't realize (although I had my suspicions) that it was that bad.

So we have some opt. Obviously he is going to need help...once again...DUH! We have set an appt next week to go to the Phoenix Day School for the deaf/HOH. I'm still hoping that with speech therapy that he will be able to talk some. And if he is never able to that is okay with me as well. I love him for who he is and I am not ashamed of him. I'm very proud. So he is more like his mother in this way instead of his father. And I am very happy how I turned out.

My mother in law is having a very hard time coming to grips with this and I can't understand why. She makes it seems like it's the end of the world as we know it. And that he is not perfect. And believe you me my husband got a hold of her before I did and ripped her a new one. We told her either she accepts him for who he is or don't contact us. Is it just me or do a lot of people seem to think that deafness/HOH is the end of the world? I read some post on different sites with parents with deaf/hoh children and they all told about how they reacted when they found out. One lady even went so far as to say that all the dreams and wishes she had for her son were now crushed because of his deafness. How horrid is that? It's not like you found out your child has cancer or something. I just don't understand why people think of us as stupid or incapable of anything.

To answer another posters question we did have someone come out to our house for one visit. It didn't go to well. Our son kind of freaked out on the lady. He was just very scared and she was wanting to do some "test" to see where he fell as far as his mental capacities went. To see if he was on target for his age and what he was lacking. We finally made it through it, and all he is lacking is speech and communication. In some areas he is right on target in others he is ahead. It's just the speech/communication.

He is NOT fluent in ASL as someone asked but he is learning ASL. My husband and I speak and sign at the same time to him as he is always watching our lips. He is starting to catch on to what we are saying and is taking cues as well. He knows that if we are putting on our shoes that we are going out, so he runs get's his shoes, cup, and his Lighting McQueen and Mater cars. (these are he safety/comfort objects) Cues like that.

I am just hoping and praying that we can get him into this school so that he can get the building blocks he needs to be successful in life.

If we can't get him into this school or are put on a wait list I am not sure what we would do. I'm very grateful to you all that have offered great advice and help. You have been wonderful.

All to CSign...that was the only home visit we will get. From what I understood from that lady that came that was all she could do. That our school district will not accept him as all testing and anything had to be done earlier in the summer...May/June and since the school year has already started (and we talk with this lady back in July) that he is not eligible for any of their programs. Which just doesn't make sense to me since it's obvious that he needs help now not next year. It's been frustrating. So we have had all our eggs in the one basket that we can get him placed in the Phoenix Day school, which I would prefer anyways because it's better than what a public school can offer IMO. But I could be wrong.

Sorry for the long post just trying to answer everyone's questions. Thank you again so much and again if you have anything else to offer or know of anything else I could check out please tell me know.

That doesn't make sense at all. Did the woman from the school district try to assess him and wasn't able to? They have an obligation to provide him
With a Free and Appropriate Public Education (FAPE) regardless of anything.

I feel like there are pieces missing from the story...

If they did in fact say that, you should be filing a compliance complaint, mediation, or Due Process.

Your son is deaf and needs to be in an accessible educational environment so that he doesn't have significant delays and challenges when he gets to elementary school and on...

 

[CSign]

First of all, thank GAWD for the spoken language delay and the fact that he's not quite fluent in ASL.....

Why would you say that? How is that a good thing? According to the OP, the child has incredibly limited communication skills- not just spoken language delays. Minimal communication skills in a three year old child is not a good thing.

 

[Frisky Feline]

Your kid will pick up ASL in no time as long as anyone talk to kid in ASL. I am so sure of this.

 

[CSign]

Your kid will pick up ASL in no time as long as anyone talk to kid in ASL. I am so sure of this.

According to Justagirl, they are signing with him (see post 13).

To the OP: Do you think that there may have been a miscommunication? Perhaps they weren't doing anything because it was summer? I would contact your school
District again.

 

[Frisky Feline]

According to Justagirl, they are signing with him (see post 13).

To the OP: Do you think that there may have been a miscommunication? Perhaps they weren't doing anything because it was summer? I would contact your school
District again.

He is NOT fluent in ASL as someone asked but he is learning ASL. My husband and I speak and sign at the same time to him as he is always watching our lips. He is starting to catch on to what we are saying and is taking cues as well. He knows that if we are putting on our shoes that we are going out, so he runs get's his shoes, cup, and his Lighting McQueen and Mater cars. (these are he safety/comfort objects) Cues like that/

Yes. I want her to know that her kid is going to be ok once they and anyone sign to this kid in ASL.