any advice would be wonderful!

[frankiesmom]

luckily, they havent been that negative..which is why we have tons of people coming out to try and help him!
but really though..i just hope we get answers..i hate the not knowing.

 

[GrendelQ]

Sad to say, but reading a lot of this reminds me so much of what we were told about my daughter.

Basically we were told:
1. She's borderline autistic
2. She's blind
3. She's deaf
4. She's retarded
5. She will never walk
6. She will never tolerate solid food
7. She is unteachable
8. She should be institutionalized
9. She will never be able to care for herself.
10. She will forever hate you due to her speech & language delays.
She was listed with 32 different developmental disorders and disabilities when she was 2 and 3. She failed all vision tests up to the age of 5. She had hearing aids from ages 5-8 before we found they did not help. She did not talk with a 75% understand-ability until she was 10. She did not learn to read until 9 and then only with the help of closed captioning on her favorite videos or TV shows.

Well, as I mentioned before, She proved them all wrong. Yes, she has delays and she has learning disabilities, but more than anything, we focus on what she can do, not what she can't.

Now, I do realize there are a lot of children who have it a lot worse than she did and I am not discounting that. However, I totally feel the frankiesmom is doing a wonderful job and approaching this the right way.

I totally applaud all dedicated parents who work hard for their children and I really and totally applaud and high five those dedicated teachers who are able to help these children grow even if only a little bit. My daughter was in the public school system for a short time and she has a speech therapist, a school nurse and a few teachers who made her feel like she was worth something. She was cut down and demoralized completely by teachers, principals and therapists (occupational and and physical).

I agree that frankiesmom is doing a wonderful job. But you are a pretty amazing mom, too, I sure hope you know!

 

[jillio]

Sad to say, but reading a lot of this reminds me so much of what we were told about my daughter.

Basically we were told:
1. She's borderline autistic
2. She's blind
3. She's deaf
4. She's retarded
5. She will never walk
6. She will never tolerate solid food
7. She is unteachable
8. She should be institutionalized
9. She will never be able to care for herself.
10. She will forever hate you due to her speech & language delays.
She was listed with 32 different developmental disorders and disabilities when she was 2 and 3. She failed all vision tests up to the age of 5. She had hearing aids from ages 5-8 before we found they did not help. She did not talk with a 75% understand-ability until she was 10. She did not learn to read until 9 and then only with the help of closed captioning on her favorite videos or TV shows.

Well, as I mentioned before, She proved them all wrong. Yes, she has delays and she has learning disabilities, but more than anything, we focus on what she can do, not what she can't.

Now, I do realize there are a lot of children who have it a lot worse than she did and I am not discounting that. However, I totally feel the frankiesmom is doing a wonderful job and approaching this the right way.

I totally applaud all dedicated parents who work hard for their children and I really and totally applaud and high five those dedicated teachers who are able to help these children grow even if only a little bit. My daughter was in the public school system for a short time and she has a speech therapist, a school nurse and a few teachers who made her feel like she was worth something. She was cut down and demoralized completely by teachers, principals and therapists (occupational and and physical).

Agree with you 200%. And knowing some of the things you have faced in order to be sure your chilfren's needs were met, I would say that you are one in a million, too.

 

[deafdyke]

nope...its so damn strange..he cant eat solid food because he doesnt know how to chew..he cant play with toys in a purposeful way, like putting stuff in boxes, climbing on stuff, pretending stuff, or even pushing a baby doll stroller. he can pat at things and look at toys with lights..and thats about it. he cant feed himself because he cant get the spoon to his mouth, or even hold one..BUT he learned to walk and crawl right on schedule. it really makes no sense. he doesnt know how to imitate either..no waving, pointing, peekaboo, nothing. never have i seen a kid like this. the doctors all pretty much agree that the hearing loss is separate, and not the cause of his delays, which makes all of this suck that much worse. the early intervention lady has put off the goal of learning signs because he simply doesnt have the capacity right now.

frankiesmom, what I meant is that there may be an underlying "something else" besides the hearing loss that could be resposible for his delays. There's also possibilty that it might be a genetic thing, that might be able to be treated. When you go and see the developmental pediatrican demand things like a karotype etc.
Oh, and while he may be delayed or have issues, remember there's still a lot of possibilties for him.

 

[frankiesmom]

a karotype, you say? i will bring that up. they are leaning towards genetic problems but how would i have 6 other kids that are normal? who can say really..its all so confusing. but yes, he has lots of possibilities..i am working with him so much and he has picked up a couple new things recently, so i am a little hopeful!

 

[deafdyke]

a karotype, you say? i will bring that up. they are leaning towards genetic problems but how would i have 6 other kids that are normal? who can say really..its all so confusing. but yes, he has lots of possibilities..i am working with him so much and he has picked up a couple new things recently, so i am a little hopeful!

frankiesmom, genetic doesn't always mean familial. I have a denovo genetic disorder. I am the only one in my family that has it. Definitly request a karyotype. I know that docs are taught that things like chromosome disordered kids are usually the stereotypical severe/profound kids who are deaf/blind with feeding tubes, trachs and ten godzillion other medical problems. Not quite. They're finding out that there are a lot of people out there with chromosome abnormalites that fit a whole spectrum, from mild LD/CP or just hoh and every and anything in between.

 

[frankiesmom]

i am going to ask then..thanks for the advice! but...please tell me what a karyotype is!!

 

[Bottesini]

i am going to ask then..thanks for the advice! but...please tell me what a karyotype is!!

A karyotype is an organized profile of a person's chromosomes. In a karyotype, chromosomes are arranged and numbered by size, from largest to smallest. This arrangement helps scientists quickly identify chromosomal alterations that may result in a genetic disorder.

To make a karyotype, scientists take a picture of someone's chromosomes, cut them out and match them up using size, banding pattern and centromere position as guides.

Make a Karyotype

You can learn a lot this way.

 

[Beach girl]

a karotype, you say? i will bring that up. they are leaning towards genetic problems but how would i have 6 other kids that are normal? who can say really..its all so confusing. but yes, he has lots of possibilities..i am working with him so much and he has picked up a couple new things recently, so i am a little hopeful!

Lots of reasons. In the first place, every child gets a random assortment of the parents' genes. A family might have one blue-eyed child and one brown-eyed child, for instance, if the brown-eyed parents each carry a recessive gene for blue eyes, and those recessive genes match up in one child but not in another. Maybe you and your husband had some recessive genes that just matched up with Frankie, but didn't pair up with your other children.

Another reason could be the age of the parents, and especially of the mother. It is more common to have abnormalities as the mother's age increases and her eggs aren't as healthy as they used to be. There is some correlation of increased birth defects with increased paternal age also. Obviously both you and your husband were several years older when you conceived Frankie than you were with your older children.

Or it could be just a random mutation.

There's no way to really know without running various genetic tests. How important is it to you to find the cause? Will it make a difference in treatment? A good geneticist can give you advice on that.

That is so great that he has picked up a few new things recently, and so great that you remain hopeful! To my eyes, having a spirit of hope and optimism in the face of difficulties goes a long, long way to overcoming whatever problems come up. Optimism can reinforce a fighting spirit, which you already have, and which no doubt will serve you in good stead as you fight for what is best in Frankie's life.

 

[jillio]

a karotype, you say? i will bring that up. they are leaning towards genetic problems but how would i have 6 other kids that are normal? who can say really..its all so confusing. but yes, he has lots of possibilities..i am working with him so much and he has picked up a couple new things recently, so i am a little hopeful!

Depends on whether the condition would be of a recessive gene type and whether 2 copies of the flawed gene are necessary to transmit the condition. That will not occur in each and every pregnancy. It is a matter of statistical probability.

 

[frankiesmom]

Lots of reasons. In the first place, every child gets a random assortment of the parents' genes. A family might have one blue-eyed child and one brown-eyed child, for instance, if the brown-eyed parents each carry a recessive gene for blue eyes, and those recessive genes match up in one child but not in another. Maybe you and your husband had some recessive genes that just matched up with Frankie, but didn't pair up with your other children.

Another reason could be the age of the parents, and especially of the mother. It is more common to have abnormalities as the mother's age increases and her eggs aren't as healthy as they used to be. There is some correlation of increased birth defects with increased paternal age also. Obviously both you and your husband were several years older when you conceived Frankie than you were with your older children.

Or it could be just a random mutation.

There's no way to really know without running various genetic tests. How important is it to you to find the cause? Will it make a difference in treatment? A good geneticist can give you advice on that.

That is so great that he has picked up a few new things recently, and so great that you remain hopeful! To my eyes, having a spirit of hope and optimism in the face of difficulties goes a long, long way to overcoming whatever problems come up. Optimism can reinforce a fighting spirit, which you already have, and which no doubt will serve you in good stead as you fight for what is best in Frankie's life.

its very important to me because i like to know why things happen..nothing drives me crazier than not having answers..we may never have them though, in this case..i hope we do though.
all of our kids look so much alike..all blond haired and blue eyed..but we are both blue eyed too.
but really, if i knew it was genetic and this was a permanent state for him, i can make longer term plans and not push him beyond his boundaries..i want to push him somewhat, but if there are things hes not going to understand ever, i want to know that.

 

[jillio]

its very important to me because i like to know why things happen..nothing drives me crazier than not having answers..we may never have them though, in this case..i hope we do though.
all of our kids look so much alike..all blond haired and blue eyed..but we are both blue eyed too.
but really, if i knew it was genetic and this was a permanent state for him, i can make longer term plans and not push him beyond his boundaries..i want to push him somewhat, but if there are things hes not going to understand ever, i want to know that.

I understand that need to know why. That is not a bad thing, because it also leads to self exploration of your own attitudes and beliefs regarding deafness in general and exactly how audism has been ingrained into the hearing person's belief system. One who asks "why" is capable of developing insight. It is obvious that you are a "why" person, as you have already, even this early in the game, begun to develop insight and have taken an strong interest in learning the Deaf perpsective.

 

[deafskeptic]

I understand that need to know why. That is not a bad thing, because it also leads to self exploration of your own attitudes and beliefs regarding deafness in general and exactly how audism has been ingrained into the hearing person's belief system. One who asks "why" is capable of developing insight. It is obvious that you are a "why" person, as you have already, even this early in the game, begun to develop insight and have taken an strong interest in learning the Deaf perpsective.

It's rare for parents to be like this.

 

[jillio]

It's rare for parents to be like this.

Very rare. I am so happy to see one around here. She will no doubt receive a great deal of benefit from this association with the Deaf. And her child will benefit even more.

 

[deafdyke]

its very important to me because i like to know why things happen..nothing drives me crazier than not having answers..we may never have them though, in this case..i hope we do though.
all of our kids look so much alike..all blond haired and blue eyed..but we are both blue eyed too.
but really, if i knew it was genetic and this was a permanent state for him, i can make longer term plans and not push him beyond his boundaries..i want to push him somewhat, but if there are things hes not going to understand ever, i want to know that.

Actually with the rarer genetic disorders they really tend not to know a lot about what kids can acheive. It doesn't sound like he's profound or severe. Just remember that if you get a dx, a lot of times the info in the textbooks is worst case scenerio.

 

[jillio]

Actually with the rarer genetic disorders they really tend not to know a lot about what kids can acheive. It doesn't sound like he's profound or severe. Just remember that if you get a dx, a lot of times the info in the textbooks is worst case scenerio.

True. Prognosis can vary quite a bit in these rare cases. There just aren't enough of them to get a lot of data, so what they know is from a case study perspective and that just isn't very useful for determining averages in performance or prognosis. Not enough data to generalize.