Can't catch a break
 

I just wanted to rant and complain for a moment.

My son who is almost 2yo is having it tough. How do so many bad things happen to the same kid?

1. Had to fight TTTS.

2. Lost his identical twin to a hospital f-up.

3. Has moderate to sever hearing loss. (will be getting bilateral hearing aids)

4. Has a heart murmur that we found out yesterday the hospital new about and never told us. He will be getting an echocardiogram on Monday. They are rushing it because he has to be put to sleep for a hearing test, and they want to make sure he can handle it.

I am sorry for this rant, I know it really does not amount to a hill of crap compared to what some endure, but it still ticks me off.

Peppy, I couldn't imagine dealing with all that as a kid or a parent. I have been lucky with three kids. My thoughts and prayers for your family.

If you have never seen it, sit down and watch the movie Gattaca.

It's all about a "less than perfect" guy who had been told his whole life he would amount to nothing because of his genetics.

Sometimes, people who have to overcome great difficulty overcompensate by trouncing what seems to insurmountable obstacles to others.

Sorry to hear this kind of news. The funny thing about kids is that they seem to be so resilient. How is your son handling these issues? That's what I would concentrate on. I hope he's a happy almost-two-year old. :)

I just got back from getting a cast put on my 4-year old daughter's broken arm. Poor kids...

Peppy, I am so thankful that my kids are healthy because I'm not sure I could deal with the stuff that your family has endured.:(

It sounds like you are a strong family.

Good thoughts to you and yours, my friend.

Hopefully all of the recent advances in hearing restoration will benefit your son. Best wishes to you guys.

My son is happy. It is me that has the problem with the issues.

You are correct kids are resilient, my son is the toughest person I know.

Yes the advances are pretty amazing. I just know how mean people are and kids with hearing aids get picked on.

Peppy - sorry to hear about your boy.

I am no doctor so I don't want to give bad advice, but my son has a mild heart murmur and he's 13. It has never had any affect on his life. The only treatment is a course of antibiotics before he has any dental work/cleaning.

So my understanding is that there is little to worry about.

He too, was two, when the doctor first told us he had the heart murmur...

hang tough Peppy...
as for the hearing aids (I wear them) if I don't want to hear you..
I don't. :D

Rika

Thanks Rika, I needed a laugh.

Sorry for the bad luck Peppy. In adversity you can find strength, never forget that. Best to you and your family, I know you've had a rough go of things.

Peppy, I have been through that and then some with a now 11yo son of my own. Had many a day when I was at the brink. I learned to tell myself it is my son who is living with these issues, not me. Feeling bad myself does no good. When I'd hear people say how worried they were or how upset I would convey the same message.
Medical tehcnology is not perfect, but it is simply amazing. They're not always a friendly bunch, but in the end simply amazing. Stay stron, support your son and take one day at a time.

Hang tough for you and your son Peppy! Makes my problems seem insignificant in comparison.

Peppy - keep focused on the fact that your son is happy. that'll carry you through each day. I had (have?) a heart murmur from birth. Never slowed me down. I actually had a concaved chest for most of my life (had "elective" surgery about 15 years ago). I found, growing up that everyone I grew up w/ just looked at me as, just Josh. It wasn't until I moved to a new school that kids teased me. But I had 12 years of being "just Josh," that I didn't give a rat's a** what anyone else thought. Plus kicking their a** up and down the field in gym shut most of them up pretty quickly. As someone who was born w/ what I guess would be classified as a birth defect (I never looked at it like that), the best advise I can give you is to treat him just like any other kid. You may find he has some limits, but don't tell him what they are - let him find out on his own. You and he, will both be much happier for it.

Cheers

Went to Duke yesterday and had the same Dr. that did my wife's fetal echocardiogram. He was able to spend some time with us and explain everything.

I am glad to report that there are no holes or other problems with the heart, and the murmur is nothing to worry about.

I guess he got a break.:D

Yep Cochlear implants have come a LONG way. My wife is a deaf Ed teacher and one of her good college buddies just got one who was a music major. She had gone to bed hearing and woke up deaf, Now it's the other way around.

Where are they doing the implant? UNC?

+1

Tim my son is only getting the hearing aids for now. I think the Cochlear implants are for total deafness. My son hears about have of the range of spoken sounds.

Yes, he is going to UNC for his hearing.

AHH boomers, at least he won't be sticking his head to fridge anytime soon then/ :p 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.

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.

Sorry for your struggles, peppy

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

????

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.

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

Welcome to Holland
 

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.

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.

+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.

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...

http://forums.pelicanparts.com/uploa...1232325298.jpg

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.

Update
 

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.

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.

Supe that put a lump in my throat. Thanks

My boy said Elmo this morning.:D

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.

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

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