Help with Deaf Son *Update Page Two*

[Toby'sFriend]

That's great!

It will probably take a couple of weeks for them to be able to schedule the Speech Evaluation...at least that is the way it works here.

So the quicker you get the request in, the better.

 

[missypie]

I was a deaf ed major in college and what we all REALLY wanted to do was "PIE" (Parent-Infant Education). The help starts as soon as a parent wants it. They come to your house...teach the child AND the family.

Also, he can be in school at the age of three...please take advantage of it. The early childhood classes are fun for them, and can make a world of difference.

 

[nliedel]

I am fairly sure any school I send the little terror to would toss him back. This morning he has disssasembled my Sunday paper, taken off all his clothes, pulled a box of pizza out of the fridge and smeared sauce all over his naked self and fed the pizza to the dog. This was all while I was on a one minute bathroom break. Whoever forgot to lock the fridge is getting cooked and eaten! He may lack hearing but his personality more than makes up for it.

 

[jackskellingtonsgirl]

I used to nanny a little boy with Down's Syndrome. When he was about 2 his hearing tested low enough to be considered "an educationally significant issue" so he started getting services thorough Early Intervention. He got hearing aids. A lady would come to the house weekly to work with him, but she also taught us signs, gave us a huge book so we could look up signs, and got us a set of videos with sign lessons on them. There are TONS of services they can put in place for your DS! Good luck!

 

[nliedel]

Just want to say that I really appreciate everyone's feedback.

 

[nliedel]

I don't even want to talk about it. The woman who conducted the test (audiologist) made me feel like a bad parent. Ok she cannot control my feelings but what she said and how she said it really hurt my feelings."I should have brought him sooner". Yes I probably should have. I didn't and I am sorry. What can we do now? "He has an ear infection in both ears, how can I let that go"? It went on and on. She stood about 5'9" and stood over me and basically berated me for "letting this go".

I tried to tell her Herne always appears to have an ear infection because there is always fluid behind his eardrums but the fluid is not infected, it's congenital, he was on antibiotics for almost 3 months before we went to an ENT that figured that out. She practically accused me of lying about it (I told her to call the ENT since he is a part of their practice).

She asked me over and over why I had not brought him in monthly as they suggested two years ago. I tried to explain that the ENT had thought that would be a waste of time and resources because he had hearing in one ear and unless there was an obvious speech problem one ear is sufficiant to hear. It was a waste of my breath. She told me off, told me he needed to see an ENT immediatly (I have already scheduled the appointment, he goes next week) and immediate access to a speech pathologist. Well I know that too. I tried to tell her I have left message after message with the Early On person and that she will get back to me, she always has in the past.
So I walked out of the office hanging my head. He cannot hear in one ear (I knew that) and has compromised hearing in the other (knew that too). She said she cannot tell me more than that because he needs another test after his "infection" clears up. I left a message for our GP to call me so I can have her call that audiologist and explain about Herne's ears. I am not sure why other than that I don't want that woman to think I am lying about his ears or would ignore an ear infection.

So he is going to see the ENT next week and I am waiting for a call from Early On.

 

[cepmom]

oh geez...sorry she made you feel so badly. Don't let her get to you...you are doing the best you can and with 4 kids it's hard darn it! Just keep doing what you're doing and things should fall into place. Some people just seem to get off making others feel badly

 

[cindy21494]

WOW, I am so sorry you were treated that way. You are trying to get your little guy help and all she wants to do is point out what you didn't do, not very nice. This reminds me of when we took our DD to the audiologist for the first time and were told she had a mild/moderate hearing loss and would need hearing aids. Our audiologist started asking us what kind of aids we wanted. I stated that the neutral ones were probably best since they would be less noticable. Well, she stated "I guess your going to be those kinds of parents" and started to get snippy with us. I was shocked at the time (because of her attitude and that we were just told our DD has a hearing loss). We still go to her, but I will never forget how we were treated the first time we met her. She has been much nicer since that first meeting and our DD is very comfortable with her, or we would never have gone back to her. BTW our DD is the proud owner of bright purple hearing aids with glittery ear molds.

IMO, I would not use her as your regular audiologist. Please try to find someone that wants to work with you and your current situation. It is important that you have a good working relationship with them. This woman sounds just plain miserable. Keep us updated on how things are going. It will get better.

Cindy

 

[Toby'sFriend]

oh big breath.
One thing to really keep in mind as you walk this path with your son - THESE PEOPLE ARE NOT YOUR JUDGE AND JURY.

Sorry, just needed to scream that.

The Doctors, the Audiologists, the Speech Pathologists, The Teachers, the People from Early On -- these are all people who have a job of helping you get your son the help he needs. Belittling you, making you feel bad, all that crap, it is not productive. So could you have gone in earlier. Sure. But you didn't and spending days and hours obsessing over that is not going to do any good right now. What you and your son need to concentrate on today is what needs to be done today to help your kid. That's it.

Unfortunately, so many of these people seem to feel that their main purpose in life is to make parents who have children with problems feel stupid, bad, and incompetent.

The next time one of them tries it, either tell them to knock it off or fire them.

 

[Microcell]

I have three, count em three deaf sisters. My youngest started public school at 2 and 1/2 to get a jump on things, and boy did she ever! She was only behind in speech all through school, she even tests at Genius level on IQ tests.

My mom and dad never learned how to sign. I was the only sister who could hear, and after countless classes I can't sign very well (though I am better than my parents) and the simple answer to why is guilt.

It is a very positive step that you want to learn sign language. You have to be really pushy and fight hard for your son. You need IEP meetings when he goes to school. It is not about "labeling" him, but rather that you are identifying a need that must be addressed in a particular way. My sisters are not "disabled" at all! One needs to write things out for hearing people because she is completely deaf and her speech is just not clear. Another needs phone assistance (in fact we laugh because she babysat us as kids, and being the only one who could hear, she would "Demand" I call my mom at work to tattle on myself- yeah right!), and the other just misses a few things.

The key is to treat him normally. We had relatives that would yell at all of them in an effort to be sure they could hear and even when they couldn't they took it as the relative caring enough to try and treated them respectfully. As a result of growing up with them, even my voice is naturally elevated now, and I ennunciate clearly. My kids have (finally) figured out that you have to repeat yourself and speak loudly and clearly with their favorite aunt. They are learning sign, but don't really have to use it with this aunt (the only one who lives close) so she lipreads and can hear some.

They say my parents would have had no deaf children if they had married other people, they both happened to carry the recessive genes for it. How could they know that would happen? How could you know you would have a deaf child. I think a big reason you ignored it is guilt, but it is not really your fault.

We grew up in the Detroit Metro area, and at the time- the 80's the West Bloomfield Schools were very good with deaf education. I don't know how they are now, but you might try to talk to someone there about how to proceed, especially if Ann Arbor is not helpful. I would also bet that Univ of Michigan has a good Audiology/speech pathology program, and they might be a good resource. I bet he could really benefit in the partial hearing ear having a hearing aid.

You need to work with professionals because there are many communication methods based on his level of hearing and your preference.

Do you know about Gallaudet University in Washington DC? I bet they have many resources for you.

I wish you luck, this is a challenge, but my sisters would tell you, it is not the end of the world. They are all happy people.

 

[Microcell]

I do not think I would go back to that Audiologist. There are so many out there that are good. I am not sure if she is in practice anymore (my sisters are in thier mid thirties now) but we used to go to Dr. Yo in Royal Oak (I think- she was somewhere in Oakland County) and she was so nice, she would fit me for ear molds as well as my sisters! I got to keep the casts she made at any rate!

 

[nliedel]

Thanks everyone. I am going to stick to MOSA in Ann Arbor because the thought of two babies in a car for over an hour each way.. well it's not pretty! Also my husband works at a local hospital and we are stuck there because of insurance issues. My husband, who is not the proactive one in the family, called the audiologists office and spoke to the manager. She was shocked this woman diagnosed an ear infection since she is not an MD. I have a feeling she is going to have a bad afternoon. I tried to tell her we know Herne can hear some because he tries to sing etc but he only has about 8 words and he is almost three. Btw he is smart. Any kid that can cause as much chaos as he can in two minutes is smart.

He is a happy normal little two year old in all aspects except for the hearing (although probably not a genius )

She would play a sound and then if he turned to it he got a reward of a dancing Tigger or Pooh (I thought that was funny) with lights. I watched him turn to about 40% of them and miss the rest. She kept telling me to hold him and not talk to him or signal him in any way in a very harsh voice. I assure you I was not signalling him and I did not say one thing to him the entire time I was holding him but over the intercom she would come, "do NOT talk to him or signal him". I wasn't. She said it about 10 times in 8 minutes. He was a very good boy btw. I was proud of him.

While I am sticking with the same group I will not be seeing her again no matter what. I just don't need the dressing down.

Oopps GP calling. More later!