My God Daughter

[Wintermagnolia]

hello, I am wondering if anyone has any advice for me.
My goddaughter is 5, and HOH. They discovered it when she was 6 months old, and ever since have sent her through tubes, "speech therapy" and "oral rehabilitation." The school says she is "special needs" in the sense that she is behind the rest of the kids her age in school. She can't even recognize any of the alphabet. I know for a fact the reason for this is because she can not hear, and if they would just teach her sign it would get better. She is extremely smart, and it breaks my heart watching her go through this.
I have begged her mother over and over to enroll her in the Washington School For the Deaf, but she says things like "She's just being a brat. There's nothing I can do." or "I don't want to have more to do. I'm already stressed out enough."
It makes me very angry to see her say these things. I know cognitive ability is dependant on the aquisition of a first language. She can't advance to her intelectual potential without a language she can FULLY understand.

Does anyone know of any studies done, or any "proof" I can present to her mom to maybe help her see how extremely important this is??

Also, I'm worried she will put a CI in my goddaughter. I personally think the decision to get a CI should be left to the child. I don't think it should be even legal to put one in until the child is at least old enough to know what a CI entails. The infections, the "re adjustments.." the scar that never goes away. That's just my personal opinion, but I'm at a loss as to how to explain all these things in a way she will understand.

I feel very helpless to help my goddaughter. She means the world to me. I even told her mother that I would do everything the school needs for her. (Paperwork, appointments, taking to and from school, etc.) She is still resistant, saying the "public schools will handle it."
I know for a fact they will not.

What do I do? Help!

 

[Bottesini]

If they are treating it with tube in her ears, it is fluid in the ear.

Plenty of kids go through this, and yes require catch up time, but it doesn't mean they are congenitally deaf.

There is a very good chance she doesn't even qualify for the school for the deaf.

What you are describing is a fairly common childhood problem.

 

[Mrs Bucket]

I read your thread and I see quite a bit of criticism towards your goddaughter's mother.

If a person truly loves their godchild, they will love and respect their godchild's parents to the point of parental choices/decisions.

If I may say so, you offer more criticism than you offer support and feedback.

You are not really helping the situation where the mother is feeling quite helpless here because she has this "friend" giving quite a bit of negative criticism to the point you are detrimental to her parenting abilities.

I encourage you to step aside and re-evaluate your priorities; ask yourself this question. Is this your child or is this your friend's child?

Ask yourself this question as well; would your friend appreciate reading this thread knowing you are posting detrimental value towards her parenting abilities?

Please give your friend a break. There's no manual towards being a parent, much less being a parent of a Deaf child.

 

[Wintermagnolia]

If they are treating it with tube in her ears, it is fluid in the ear.

Plenty of kids go through this, and yes require catch up time, but it doesn't mean they are congenitally deaf.

There is a very good chance she doesn't even qualify for the school for the deaf.

What you are describing is a fairly common childhood problem.

The tubes havent been working. The first set helped just enough to get her into the classes but since then hasnt gotten "better." The dr's don't know what more to do, and apparently will just keep doing this periodical because they dont know what else to do. they said her inner tubes are too short, IDK exactly.
I dont know how long this is supposed to go on, how long the treatments take? There has been serious concern about the effectiveness since her hearing has not been increasing but decreasing since the first set.

I read your thread and I see quite a bit of criticism towards your goddaughter's mother.

If a person truly loves their godchild, they will love and respect their godchild's parents to the point of parental choices/decisions.

If I may say so, you offer more criticism than you offer support and feedback.

You are not really helping the situation where the mother is feeling quite helpless here because she has this "friend" giving quite a bit of negative criticism to the point you are detrimental to her parenting abilities.

I encourage you to step aside and re-evaluate your priorities; ask yourself this question. Is this your child or is this your friend's child?

Ask yourself this question as well; would your friend appreciate reading this thread knowing you are posting detrimental value towards her parenting abilities?

Please give your friend a break. There's no manual towards being a parent, much less being a parent of a Deaf child.

You are right. I do have quite a bit of criticism towards her parenting style. Mostly because there is -i hate using this term but idk how else to explain it-
neglect in their house and I suppose i was asking if this is another example of that and if there is any way i can motivate her to do more to help the situation. Hearing loss runs very strongly in their family, and I am just very worried because most of the time she (mom) doesnt do any more than the minimum-required level of effort.
I have spent years being supportive and "helpful" and it turned out being taken advantage of. she is very depressed and just doesnt really "tune in" to life anymore.
It stresses me out and I just worry about my goddaughter since I haven't been around to watch out for her lately.
If anyone is detrimental to her parenting ability, it is her in her inactivity. if i wasn't really her friend, I wouldn't care at all.
It gets hard to not be critical after years of watching emotional and parental absence to the kids I love. But, please don't imply that I am not a true friend, or that I do not love her as much as I love her children.

I posted here because I didnt know where else to turn for advice. Isn't that the point of forums? To discuss things, and get advice and support? I just wanted other's input before opening my big mouth again. Tact isn't something I was born with apparently :/
IDK how to handle this situation at all and i've been feeling like just giving up on the whole family in terms of trying to help.
Can't help someone who doesnt care to be helped.

Thank you for your input, I will take a more empathetic approach when dealing with this topic from now on with her. It isn't easy given the situation, but I will work on bringing that aspect back into our relationship.
I had forgotten how much she has gone through, and was focusing more on the bad behaviors versus why those behaviors began.




Thank you both for your input. I will do research and do my best to help in whatever way I can.


As a side note I would like to say that sign helps all children. Even without hearing loss, my goddaughter would benefit from learning sign. Sign has been proven to help cognitive ability, Linguistic ability, right brain function and even ADHD prevention/treatment. I think all children should be taught at least the manual alphabet.

 

[Bottesini]

Eustachian tube dysfunction?

In children, who often have a more horizontal tube, the drainage is sometimes blocked anatomically and results in a greater occurrence of ear infections. Synthetic tubes are sometimes inserted by a doctor to help keep the earway open and facilitate appropriate air and fluid exchange. Since the tube opens into the pharynx, the mucus drains into the stomach similarly to the sinuses

The eustachian tubes explained - by Alicia M Prater PhD - Helium

 

[deafdyke]

Winter, bit confused....does she have hearing loss in addition to the tubes? I am very confused as someone with fluid induced loss wouldn't even be eligable for CI at ALL. Even most hoh kids wouldn't.
It is possible that your goddaugher could go to Washington School for the Deaf. Many Deaf schools and programs don't have a set "required" loss for admission.
Is there any one else you could talk to about the mom? She sounds very ...strange.
I really think the mom may not realize that going to Deaf School will remove a lot of the stress that can come about as a result of oral only "therapy 24/7 approach.
Yes, the mom would have to learn ASL, and that can be stressful and hard....but I do think that if the parent insists that the kid has to speak, the parent should meet the kid halfway and learn how to Sign.

 

[Mrs Bucket]

You are right. I do have quite a bit of criticism towards her parenting style. Mostly because there is -i hate using this term but idk how else to explain it-
neglect in their house and I suppose i was asking if this is another example of that and if there is any way i can motivate her to do more to help the situation.

Wow, thank you for this reply. As an abuse survivor, I cannot stress to you how important it is for an adult to recognize their pattern(s) of criticism towards a small child. To this day, I still struggle with my own abuse pain however I refuse to victimize myself rather empower myself & others.

It stresses me out and I just worry about my goddaughter since I haven't been around to watch out for her lately.
If anyone is detrimental to her parenting ability, it is her in her inactivity. if i wasn't really her friend, I wouldn't care at all.
It gets hard to not be critical after years of watching emotional and parental absence to the kids I love. But, please don't imply that I am not a true friend, or that I do not love her as much as I love her children.

I can see how much it is gut-wrenching for you. I wouldn't even imply you are on a self-serving mission for this child, I see how you are torn apart. I truly wish there are more friends like you in many children's lives. Thank you so much for your proactivity, believe me.

I posted here because I didnt know where else to turn for advice. Isn't that the point of forums? To discuss things, and get advice and support? I just wanted other's input before opening my big mouth again. Tact isn't something I was born with apparently :/
IDK how to handle this situation at all and i've been feeling like just giving up on the whole family in terms of trying to help.
Can't help someone who doesnt care to be helped.

You just echoed how I felt and still feel.. I was born with a big mouth for sure, LOL! I channeled this "big mouth" into advocacy and I encourage you to channel this energy you have into being an ally. Being both an ally and an advocate which you already are.. extend this to the community.

Thank you for your input, I will take a more empathetic approach when dealing with this topic from now on with her. It isn't easy given the situation, but I will work on bringing that aspect back into our relationship.
I had forgotten how much she has gone through, and was focusing more on the bad behaviors versus why those behaviors began.

Thank you both for your input. I will do research and do my best to help in whatever way I can.

Thank you for bringing more information into this and please do stay here in this forum. It is so enlightening to have people like you.

 

[Berry]

How much interaction do you have with the child? Are you signing with her and teaching her signs? If the mother is as stressed as indicated then she should enjoy you helping more with things like babysitting, taking her to ice cream, etc.

Whether you are right or wrong if you nag the momma you will make an enemy and your access to your goddaughter will become more restricted.

So instead offer to help. And while you are helping the mother do everything positive you can for the girl. Everyone has fond memories of someone besides their parents who contributed to their life. You can be that person.

 

[Wintermagnolia]

Sorry it has taken so long to reply, i am in the middle of finals and dont have a lot of spare time lately :/

Wow, thank you for this reply. As an abuse survivor, I cannot stress to you how important it is for an adult to recognize their pattern(s) of criticism towards a small child. To this day, I still struggle with my own abuse pain however I refuse to victimize myself rather empower myself & others.



I can see how much it is gut-wrenching for you. I wouldn't even imply you are on a self-serving mission for this child, I see how you are torn apart. I truly wish there are more friends like you in many children's lives. Thank you so much for your proactivity, believe me.



You just echoed how I felt and still feel.. I was born with a big mouth for sure, LOL! I channeled this "big mouth" into advocacy and I encourage you to channel this energy you have into being an ally. Being both an ally and an advocate which you already are.. extend this to the community.



Thank you for bringing more information into this and please do stay here in this forum. It is so enlightening to have people like you.

Yes, it is very hard. I try my best to be empathetic, she has been through a lot and is very depressed and sometimes that translates into not being fully capable of handleing her kids. It is very sad and I try to help as best i can.
lol yes the "big mouth syndrome" is something i have always had. When i was younger i always tried to say what people wanted to hear, but when i kept failing at that i just decided to just be myself and i suppose that makes my communication... inappropriate at times? i am very blunt and sometimes that doesnt come out right. I never intend to offend though. it does happen though :/ i always feel bad when it does.
I plan on mastering in ASL & Deaf Studies, with a side-focus on teaching ASL. My goal is to become an Equal Rights Activist and start working towards getting ASL accessable in every school, ESPECIALLY public schools and colleges. The problems I went through, and the struggles my goddaughter is going through have really pushed this goal to a passion. I know i will have lots of support in this when i come back to WA and I really hope i can start a movement for the whole country. It is so important for kids to be able to communicate.

i will definately stay! i love this forum <3

Eustachian tube dysfunction?



The eustachian tubes explained - by Alicia M Prater PhD - Helium

i am not sure exactly. i asked her mom for more information but she seems to have lost all of the medical records. or just never had them, IDK. BUT, i took a different approach with her and this thursday we are taking my goddaughter with to my audiologist appointment and going test together. I am very happy that with the advise from alldeaf i was able to "get through" to her mom, it is definately a step in the right direction

Winter, bit confused....does she have hearing loss in addition to the tubes? I am very confused as someone with fluid induced loss wouldn't even be eligable for CI at ALL. Even most hoh kids wouldn't.
It is possible that your goddaugher could go to Washington School for the Deaf. Many Deaf schools and programs don't have a set "required" loss for admission.
Is there any one else you could talk to about the mom? She sounds very ...strange.
I really think the mom may not realize that going to Deaf School will remove a lot of the stress that can come about as a result of oral only "therapy 24/7 approach.
Yes, the mom would have to learn ASL, and that can be stressful and hard....but I do think that if the parent insists that the kid has to speak, the parent should meet the kid halfway and learn how to Sign.

I spoke with her mom and i got a *little* more information:
She has "severe hearing loss". The dr's think its from her inner ear tubes (?) being too short? they have been trying the tubes to alleviate the hearing loss but it has not done any difference since the first set. the doctors did say the last time that she will only be able to get one more set of tubes (they disintegrate after some time is what i understand?) and after that there is nothing more they can do. Something about scar tissue. I am not exactly clear on everything yet, as her mom hasnt really...taken initiative so to speak. I have not been able to get many clear answers from her. when i speak to the audiologist this thurs i should know more.
they have not suggeted CI, (that i am aware of) i was just wondering if they would and what to do if they did..i worry about things way ahead of time often. i dont know much about CI, just that it has effected many people in negative ways. and that it should be a choice the person "needing" it should make- in my opinion.

i agree, i dont think she understands how it much it would help.
I dont think the mom would learn ASL. maybe basic signs, "help, ty, please, sorry, etc." but she would not take the time. my goddaughters older sister has already started learning though. She has recognized how the communication is better with sign than trying to talk so she has taken it upon herself to learn. she is 8 and gives herself lessons from books, online and when i do small lessons with my goddaughter and their cousin.
i agree though. if a parent wants their child to be Bi-bi they should also try their best to do the same. it is unfair to expect someone to intergrate into a culture and not reciprocate the gesture.
what do u mean "talk to someone else about the mom?" im sorry i do not understand...

Once i get a better idea of what the diagnosis is and the whole picture i will do my best to show her mom how WSD would help relieve some of the stress.


Thank you everyone- you have been so very very helpful! This forum is a godsend

 

[deafdyke]

BUT, i took a different approach with her and this thursday we are taking my goddaughter with to my audiologist appointment and going test together

YAY....that's good news. Maybe the audi might have some suggestions and influence with the mom. Maybe you could contact the audi and suggest that they point the mom towards Dhh resouces.

what do u mean "talk to someone else about the mom?" im sorry i do not understand...

Like her mom, or the husband or another very close friend.
Do you know if she's in a dhh ed program or just a general specialized special ed (headstart style) program? Some dhh kids end up in programs for all sorts of "classic" disabilites, but they really need Deaf Ed.

 

[Wintermagnolia]

I brought her to my appointment today to get her used to the Dr. and show her that grown-ups do it too.*I get a black hearing aid to match my hair on monday* We got stickers, drew pictures and made cookies afterwards. She said "ear dr is fun!!" and i asked her if it's ok to bring her back to get her ears checked on wed and she said "yeah!!!"
So i made it an exciting, fun thing and she is excited now. Thank you alldeaf!!!

oh, well her mom is a widow and i spoke with her sister-in-law and she is suggesting WSD too. (Her son has hearing loss it runs in the family.)
I think that approaching it in a fun, light-hearted way has been helping a lot.

I am worried a little though, because she is moving next month 1/2 hr away from WSD and im not sure how my goddaughter would get to school after i move to DC for college..
I will cross that bridge when I get there though. (There i go again, being worried too early!)

She is in headstart. It is frustrating because the teachers say she "doesnt pay attention" and stuff like that but I know her and she IS, if not as much then MORE than other kids her age just to understand whats being said. It's very frustrating. I am talking with her mom about the new school she will be attending and I think once she starts there I will take her audiogram in and talk to the teachers about some kind of program for her. She is in special ed with an IEP so hopefully the school will be accommodative. If not I will have to call an advocate place or something, but i am working on things slowly but surely!

Thank you everyone! <3 I appreciate the support so much!

 

[deafdyke]

spoke with her sister-in-law and she is suggesting WSD too. (Her son has hearing loss it runs in the family.)
I think that approaching it in a fun, light-hearted way has been helping a lot.

Oh wow...well encourage her sister in law to talk to her about WSD. Early Intervention and the early grades at Deaf Schools tend to be better then just "general special ed" (for all kinds of disabilties) Maybe her sister in law can influence her.

is moving next month 1/2 hr away from WSD and im not sure how my goddaughter would get to school after i move to DC for college..
I will cross that bridge when I get there though. (There i go again, being worried too early!)

Kids up to an hour away can attend Deaf Schools as Day students.

She is in headstart. It is frustrating because the teachers say she "doesnt pay attention" and stuff like that but I know her and she IS, if not as much then MORE than other kids her age just to understand whats being said. It's very frustrating. I am talking with her mom about the new school she will be attending and I think once she starts there I will take her audiogram in and talk to the teachers about some kind of program for her. She is in special ed with an IEP

Oh general special ed. Some mildly hoh kids can thrive in a headstart setting, but many dhh kids need a Deaf ed placement.. Does her new school have a formal dhh ed program? That might be the answer.

 

[Wintermagnolia]

Oh wow...well encourage her sister in law to talk to her about WSD. Early Intervention and the early grades at Deaf Schools tend to be better then just "general special ed" (for all kinds of disabilties) Maybe her sister in law can influence her.
Kids up to an hour away can attend Deaf Schools as Day students.
Oh general special ed. Some mildly hoh kids can thrive in a headstart setting, but many dhh kids need a Deaf ed placement.. Does her new school have a formal dhh ed program? That might be the answer.

I will do that hopefully we can get through to her. I was thinking of having her read the book Deaf Again. I think it might help her understand better.
oh really?! that is amazing! !! that is the best news i have seen all day!
i am not sure, her mother hasnt really done the research about it. I will next week.

 

[jillio]

I will do that hopefully we can get through to her. I was thinking of having her read the book Deaf Again. I think it might help her understand better.
oh really?! that is amazing! !! that is the best news i have seen all day!
i am not sure, her mother hasnt really done the research about it. I will next week.

There is a better book that never fails to open parents' eyes. It is called Deaf Like Me and it is written by the father of a deaf girl. It really gets parents thinking because he is so honest about the mistakes he made. I don't know of any parent of a deaf child that I have recommended this book to that has come away without being deeply touched.

 

[deafdyke]

Also, Silent Garden. I HIGHLY HIGHLY reccomend this book for ANY parent of a dhh kid. It's an "approach" guide written by a Deaf man. (a Ph.D if I recall correctly......Paul Ogden)
It really does illustrate the different approaches very well.
It's possible that the mom may believe in the myth that Deaf ed is just for ASL only, non orally skilled kids. Or the other myth that Deaf ed/schools/programs are horrible all along the line.
Hopefully you and the sister in law will be able to nudge the mom into trying Deaf ed.

 

[faire_jour]

There is a better book that never fails to open parents' eyes. It is called Deaf Like Me and it is written by the father of a deaf girl. It really gets parents thinking because he is so honest about the mistakes he made. I don't know of any parent of a deaf child that I have recommended this book to that has come away without being deeply touched.

I read "Deaf Like Me" as well. It was very good, but it takes place in 1965. There has been a lot of change in the world of Deaf education and audiology since the 60's.

It was actually where I heard of the John Tracy Clinic. Even though the family does not have a lot of success with the program, I found it helpful and full of wonderful professionals.

 

[shel90]

I read "Deaf Like Me" as well. It was very good, but it takes place in 1965. There has been a lot of change in the world of Deaf education and audiology since the 60's.

It was actually where I heard of the John Tracy Clinic. Even though the family does not have a lot of success with the program, I found it helpful and full of wonderful professionals.

But the issues remain the same today as it did back then.

 

[jillio]

I read "Deaf Like Me" as well. It was very good, but it takes place in 1965. There has been a lot of change in the world of Deaf education and audiology since the 60's.

It was actually where I heard of the John Tracy Clinic. Even though the family does not have a lot of success with the program, I found it helpful and full of wonderful professionals.

Evidently, you failed to understand the larger message in the book. You were obviously looking at it from the hearing perspective of speech and success with spoken language. The book is about far more. It is about a hearing parent learning about their child's perspective, and the journey of learning to see the world from that child's deaf perspective. Read it again, and try to understand the message.

 

[jillio]

But the issues remain the same today as it did back then.

Bingo. And nothing has changed regarding those issues.

 

[faire_jour]

Evidently, you failed to understand the larger message in the book. You were obviously looking at it from the hearing perspective of speech and success with spoken language. The book is about far more. It is about a hearing parent learning about their child's perspective, and the journey of learning to see the world from that child's deaf perspective. Read it again, and try to understand the message.

I understood the message perfectly and you are being rather presumptious to think otherwise. Perhaps you don't understand me nearly as well as you think you do.

The whole point is the journey the family goes through and the struggle that the child has without language. One of the most moving, and horrible, parts of the book is when the deaf daughter gets so sick and they have no way to communicate and comfort her, and at the same time the family happens to see some Deaf adults signing and they wonder if they could help her understand.....it was so sad...