Can't catch a break

[peppy]

Originally Posted by Tim Walsh

AHH boomers, at least he won't be sticking his head to fridge anytime soon then/ They do the implants for people over a certain db loss, but it's not just total deafness. According to my wife it's about 70db of hearing loss before you're considered for implants as an adult, and 60-80 for children depending on where on the scale it is. Steff also says that UNC is the best in the state for aids/implants.

Good for you to get him aids early. The earlier a kid gets his hearing the better he does in school and languages, it really does make a huge difference.

Hang in there, it'll get better and he's in good hands.

Thanks for the info Tim, we had heard that UNC is the place for hearing loss.

With the assessment we had last week he is about 5 months behind in speech. I thought that was pretty good considering he only hears about have of the vowel sounds.

[Tim Walsh]

That's not too bad at all. Steff's got one kid who's reading on a kindergarden level.. she's 15 and another 12 year old who's reading at the same level. 5 months isn't bad at all.

[notfarnow]

Sorry for your struggles, peppy

I can think of one REALLY lucky break your son got though... a really important one.

[peppy]

Originally Posted by notfarnow

Sorry for your struggles, peppy

I can think of one REALLY lucky break your son got though... a really important one.

????

[peppy]

We met with social services yesterday and they confused the crap out of us.

They said he needs social and motor skill therapy along with speech. They wanted us to enroll in their program on the spot, they were like used car sales people.

We then had a meeting with someone from Beginnings,and that went much better. I do not know why they have to make everything so complex and have so many redundant agencies.

Is it like this with all special needs children? It was like the agencies are fighting over him.

[notfarnow]

Originally Posted by peppy

????

Great parents.

Despite the obstacles your son has, having parents who want the best for him is a HUGE advantage. It's sad, but there's a lot of kids who don't have that. Your boy is lucky to have you as a dad.

Sorry to digress from your original post... my wife is a child protection worker and I hear horror stories. Reading your post was a nice reminder that there are parents who try REAL hard to do the best for their kids.

[Tim Walsh]

Originally Posted by notfarnow

Great parents.

Despite the obstacles your son has, having parents who want the best for him is a HUGE advantage. It's sad, but there's a lot of kids who don't have that. Your boy is lucky to have you as a dad.

Sorry to digress from your original post... my wife is a child protection worker and I hear horror stories. Reading your post was a nice reminder that there are parents who try REAL hard to do the best for their kids.

SOO true. My wife is a SpEd(deaf education) teacher in a rural county. Some of the stories she brings back just want to make you cry. Jake I'll bet it's the same up where you are. It seems with Steff

[peppy]

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

[DanielDudley]

I'm glad you have a son. It must have been tough to lose one, and hard to express. Kepp at it, and pretty soon your son will be a little older. They just keep getting more interesting as time goes by.

It seems hard and slow now, but it goes by fast. Make the most of it.

[Tishabet]

Originally Posted by notfarnow

Great parents.

+1

It's not at all an apples to apples comparison, but my older sister has Downs Syndrome and also benefited significantly from great parents... she is now 34, and was born in an era when then doctors asked my parents when she was born if they would like to have her put in a care facility (similar to a mental institution) when she was born.

My parents were having none of that, and spent the next 20+ years working like hell to get her the best education, the best opportunities, the best teachers etc.
My sister now lives on her own in her own apartment (in a "normal" apartment development), plays the violin, cooks her own dinner every night, and drives her Volvo to and from work every day. The difference between her and the other folks with Downs who are her age is not innate ability, IQ etc... it's that my parents decided decided to give her all they had, and they delivered.

This is, and I'm not exaggerating here, the single most important lesson my parents ever taught me. Believe in your kid, and do everything in your power to help them out, and your kid will overcome. Best of luck to you Peppy.

[pwd72s]

Peppy, One of the best pool players on the planet is a young man from South Dakota, Shane VanBoening (sp?). He is 90% hearing impared. One of the keys to his many championship wins is that he plays with his hearing aids off. Fewer distractions, no sudden noises to "shark" him in mid stroke. I'm not saying your son should take up pool, but often people with limitations in one area can develop amazing skill in other areas.

Here's Shane on his way to another championship...

[peppy]

My son got his hearing aids on Tuesday, and does not seam to mind wearing them at all. I think he is going to be just fine.

[peppy]

Diagnosed with auditory neuropathy, not what we were hoping for. I think it came as a surprise to the doctor and the audiologist also.

Now we just have to wait to see if the hearing aids will work, if not then they can try cochlear implants.

The doctors also want to do an MRI to see the nerve damage, I think that is what they are looking for.

[Superman]

Originally Posted by notfarnow

Great parents.

Despite the obstacles your son has, having parents who want the best for him is a HUGE advantage. It's sad, but there's a lot of kids who don't have that. Your boy is lucky to have you as a dad.

Sorry to digress from your original post... my wife is a child protection worker and I hear horror stories. Reading your post was a nice reminder that there are parents who try REAL hard to do the best for their kids.

So true. Hearing deficiencies and other challenges are about as likely to spur success as frustrate it. Yes, maybe other kids will tease him. That will strengthen his character. The one thing he really needs, he has. Your love and support.

Thanks for sharing, Peppy. To me, this is a good story.

[peppy]

Originally Posted by Superman

So true. Hearing deficiencies and other challenges are about as likely to spur success as frustrate it. Yes, maybe other kids will tease him. That will strengthen his character. The one thing he really needs, he has. Your love and support.

Thanks for sharing, Peppy. To me, this is a good story.

Thanks Sup, I think it will turn out okay also. I guess I am just complaining about it.

[targa911S]

Originally Posted by Superman

So true. Hearing deficiencies and other challenges are about as likely to spur success as frustrate it. Yes, maybe other kids will tease him. That will strengthen his character. The one thing he really needs, he has. Your love and support.

Thanks for sharing, Peppy. To me, this is a good story.

Supe that put a lump in my throat. Thanks

[peppy]

My boy said Elmo this morning.

His vocabulary is growing by the day now.

I don't know if it is the hearing aids or that my wife and I are really working to get him to talk.

[Tim Walsh]

Originally Posted by peppy

My boy said Elmo this morning.

His vocabulary is growing by the day now.

I don't know if it is the hearing aids or that my wife and I are really working to get him to talk.

My vote is for both. He's now hearing and hearing well, AND you're working with him to connect sounds to meanings/objects. Keep up to good work!

BTW My wife was glad to hear they've come up with auditory neuropathy, it could be much worse, and there are proven/reliable ways of dealing with it. Our offer is still on the table if you need advice.

[livi]

Hang in there, Peppy. I am no expert on hearing impairment, but anything you feel like discussing, just PM me. You know that.

[peppy]

Tim and Markus thanks for the offer. I may take each of you up on that before I am done. I have meetings tomorrow with a couple of groups that are going to explain everything to us.

We should be good and confused by tomorrow night.

Thanks,

Peppy