Patience of a saint

[Calvin]

 

[DeafDucky]

This does not fit the attitude of most that have posted in this thread but I am wondering what their answer is if Maggie learns about CI later and the recommendation that they be put in as early as possible for the best outcome. And then, as a result of leaning that past that age, she is furious that she was not given one!

I wouldn't have an answer because that in reality is between Maggie and her parents. Yes she has the right to be angry- just like the kid who finds out they could have had ASL in their early years has the right to be furious in not having that opportunity growing up. I can only speak from my own experience- I did not have the opportunity for ASL or CI growing up even though both were available. My parents were aware of ASL (and cued speech apparently...) but I don't think they were aware of or knew about CIs when I was growing up. I'd have to ask but pretty sure they didn't. Who am I to say what Maggie and Maggiesmom should or should not do? I can opine yes but in the end I respect their decisions and potential future reactions.

Huh.. interesting... first one was in 1961, then later in 1977 a second version.

BTW found the quote- just waiting to see if I can share it.

 

[DeafDucky]

What is with calling people "snowflakes " ?? When people hear that we're getting a snow storm in New England they run to the grocery stores and stock up on food ,water flashlights batteries and candles . There is nothing sissy about being a " snowflake" here ! We know how powerful whole a lot of " snowflakes " can be and the damage they can do ! Try digging out a 8 ft. snow bank !

How does this fit in this thread?! There's no mention of the word snowflake until your post then Calvin's after yours.

Good grief. We aren't mind readers if this is an errant post that's supposed to be in another thread....

RME.

 

[Jane B.]

I wouldn't have an answer because that in reality is between Maggie and her parents. Yes she has the right to be angry- just like the kid who finds out they could have had ASL in their early years has the right to be furious in not having that opportunity growing up. I can only speak from my own experience- I did not have the opportunity for ASL or CI growing up even though both were available. My parents were aware of ASL (and cued speech apparently...) but I don't think they were aware of or knew about CIs when I was growing up. I'd have to ask but pretty sure they didn't. Who am I to say what Maggie and Maggiesmom should or should not do? I can opine yes but in the end I respect their decisions and potential future reactions.

Huh.. interesting... first one was in 1961, then later in 1977 a second version.

BTW found the quote- just waiting to see if I can share it.

I am not sure how far those with strong don't do CI advice had thought of what might be in the future. That is what I was trying to bring out and you did a great job of thinking it through. Thanks.

Now let's see what some of the others have to say.

 

[LoveBlue]

I am not sure how far those with strong don't do CI advice had thought of what might be in the future. That is what I was trying to bring out and you did a great job of thinking it through. Thanks.

Now let's see what some of the others have to say.

I dint think anybody the anti-CI peeps are still here.

 

[Maggiesmom]

Well here's my reply (and I'll state it again I won't post again about trivial thoughts I am having )
#1 a CI would not work for Maggie. She would need a bone conduction implant a Baha, which is why I am fine with her using just her hearing aid. She's going to have enough surgerys when she's older so I see no need in increasing them. #2 Maggie has hemifacial microsomia- mild Goldenhar syndrome I've attached some files in case anyone wants to know what that is. We are extremely lucky her case isn't as severe as some children, her biggest obstacles will be her kidneys and her spine fusing together. #3 on her "normal " shaped ear and I hate saying normal because I love her microtia and atresia ear but the one that looks like a typical ear has conductive loss so the hearing aid the headband she wears works really well when she keeps the darn thing on and isn't trying to eat it. #4 her advisor with the SC school for the deaf and blind told me last week during her 6 month review that while she could go to the school when she's older due to her diagnosis, she would probably test out cognitively. He said she is his highest functioning child language wise he told me and no I am not exaggerating. (I am glad I took time to think about what to say because I made a list of everything she can "say" (sign) she can sign 71 words and she won't be two for about three more weeks- my other two hearing kids never said that much at her age and she completely understands what she's signing and he meaning behind her words . Also the youngest you can get the Baha implant is 5 because they have to drill the skull- I might be wrong as to why that's the reason you have to wait until then but you do have to be 5 or older. Weve also decided not to do reconstruction surgery(we would of course if she ever needed jaw realignment but her asymmetry isn't bad)..what ever happened to be ok with the way you are. Now that being said if she's 16 one day and says mom I want this surgery for my ha or this one for my ear then fine we will. I am more focused on what she will have to have done ; like her spine when it starts to fuse or the biannual kidney caths for her bilateral hydronephrous, she'll have that corrected soon but her kidney reflux is improving each time we go and her nephrologist saiid that as her body grows her ureters are growing and that they might get big enough on their own so hopefully we won't need that one !ok so I feel like I rambled a little or a lot. I also feel like I've got to meet some great stranger friends here and I've met some real opinionated folks too who seem to enjoy being difficult and be nit picking but I guess that makes our world interesting doesn't it. I really didn't need to explain any reasoning or any of her medical problems I only did so that no one would think I was a neglectful parent. I've edited this a million times sorry for any typos I missed

 

[Maggiesmom]

And here's her list of words just for GP (general purpose)

Maggie's ASL word list before turning two. Notice she doesn't sign mom, she signs her speech therapist name Lauren but not mom lol stinker
1.Eat
2.Help
3.No
4.Stop
5.More
6.Flower
7.Pig
8.Dirty
9.Frog
10.Dog
11.Cat
12.Bird
13.Duck
14.Chicken
15.Tiger
16.Lizard
17.Snake
18.Bath
19.Crayons
20.Grumpy
21.Mouse
22.Doll
23.Fun
24.Drink
25.Time
26.Work
27.Dad
28.Nap/sleep
29.Tired
30.Baby
31.Cry
32.Get dressed
33. Hat
34.Cookie
35.Shoes
36.Bathroom
37.Change diaper
38.Go
39.Finished/all done
40.Bug
41.Be quite
42.Hurt
43.Goodbye
44.Please
45.Thank you
46. Uncle
47.Cooking food
48.Milk
49.Ice cream
50.Doctor
51.Candy
52.Lauren (L name sign )
53.Book
54.Stars
56.Rain
57.Cracker
58.Ball
59.Sick
60.Nana
61. School
62. Up
63. Milk
64. Hot
65. Water
66. Bus
67. Home
68. D ( name sign for Danielle at ingles )
69. Strawberry
70. Apple
71. Thirsty

 

[AlleyCat]

Maggie, I'm so sorry for all you are dealing with.

Just know, you do NOT have to justify yourself. Despite what anybody asks or questions you here. I have seen a few nosy and unhelpful posts from a couple posters (you know who you are) who have no business asking you anything.

 

[Maggiesmom]

@Jane B.

In my opinion it's the connotation that comes with it, impaired has a negative connotation with it.

As for Deaf, it's a pretty unique and amazing community, if people are respectfull, hearing or Deaf , the Deaf community seems to me one of the most open and accepting communities.

@Maggiesmom no worries, no offence taken at all

Keep doing what you do for Maggie, she'll grow up an awesome person without a doubt with parents that care to adapt for her
I'm sure you have all of us rooting for her

Thank you Mieke

 

[Maggiesmom]

Maggie, I'm so sorry for all you are dealing with.

Just know, you do NOT have to justify yourself. Despite what anybody asks or questions you here. I have seen a few nosy and unhelpful posts from a couple posters (you know who you are) who gave no business asking you anything.

Thank you , I am still confused how me bragging about how much patience everyone has morphed in what it is now. I guess it was my fault for mentioning in my sorry for leaving anyone out reply how I am thankful no one at that point anyway wasn't giving me a hard time about implants like some of our family do. Lesson learned....HUGE lesson learned

 

[Rio]

What is with calling people "snowflakes " ?? When people hear that we're getting a snow storm in New England they run to the grocery stores and stock up on food ,water flashlights batteries and candles . There is nothing sissy about being a " snowflake" here ! We know how powerful whole a lot of " snowflakes " can be and the damage they can do ! Try digging out a 8 ft. snow bank !

Oh dear , " snowflake" is used in the political world. Mostly , name calling a " liberal". It has nothing to do with the weather.

I think you might be in the wrong thread.

 

[Calvin]

I think you might be in the wrong thread.

The word was mentioned in post #23 in this thread in case you missed it.

 

[whatdidyousay!]

Oh dear , " snowflake" is used in the political world. Mostly , name calling a " liberal". It has nothing to do with the weather.

I think you might be in the wrong thread.

I am not in the wrong thread ! Someone used the term here. I happen to think it's a ridiculous word to call people ,some people use 'snowflake ' to say someone it a sissy like the reporter on Fox news calling a boy that had autism ! I know how it's used . I am saying there is nothing sissy about snowflakes !

 

[AlleyCat]

Can WDYS please move on? Way to derail Maggie's thread.

 

[Rio]

I am not in the wrong thread ! Someone used the term here. I happen to think it's a ridiculous word to call people ,some people use 'snowflake ' to say someone it a sissy like the reporter on Fox news calling a boy that had autism ! I know how it's used . I am saying there is nothing sissy about snowflakes !

Weird. I back tracked before you posted about it and I didn't see it . I am on my phone so I can't tell you the number of the post. Anyways, I won't go on about it . I don't want to disrespect Maggie's thread . Talk to me in pm or other .

 

[LoveBlue]

I am not in the wrong thread ! Someone used the term here. I happen to think it's a ridiculous word to call people ,some people use 'snowflake ' to say someone it a sissy like the reporter on Fox news calling a boy that had autism ! I know how it's used . I am saying there is nothing sissy about snowflakes !

A SINGLE snowflake is delicate and unique. THAT is what the term is referring too. *SMH*

 

[DeafDucky]

Here is the comment my friend made on FB. Reposted with permission-

The difference between a Deaf person and a hearing-impaired person is that the Deaf person feels complete despite her deafness, but the hearing-impaired person feel incomplete without hearing.

Please note this is word for word her words- to explain why she used "her"- substitute whatever you like there. .

That actually sums up better what I was trying to say. I AM complete because my deafness has always been there. Granted there are likely some individuals born deaf who use the term hearing impaired...

 

[Cappy]

 

[Maggiesmom]

Best gif ever!!!

 

[whatdidyousay!]

"You have every right to be. Those special snowflakes don't know shit. You should send them here. We will give them the Patience of a Saint treatment. You get 1st dibs of course."
Cappy used the term " snowflake" ! So you're This is why I asked what is this crap about calling people "snowflake"!!!