Looking for information

[Guest guest]

rag, read the post I previously wrote to . Yes, one is more susceptible to

heart attacks, bone deteroration,etc. with low testosterone levels. Good Luck!

[Guest guest]

Hi Dodie! You and I are in the same boat. I'm looking for info on

this stuff, too and have received an informantion packet from one of

the implant makers and another one I requested from s Hopkins

inplant center. One of the requirments tor implant candidtate is a

audiogram done no longer than six months and a two month trial with

new hearing aids. It sounds like you meet the initial qualifications.

I am begining the process myself and have to schedule an appointment

with a audiologist for the audiogram and maybe fitting new hearing

aids first.

The required tests at s Hopkins implant center are: the

audiogram, new hearing ais trial of 2 months, a cat scan of the head,

medical exam, a psychological exam, and a evaluation from the implant

surgeon. There might also be a test of the cochlea itself involving a

needle which I'm not gonna describe cuz its nasty.

A lot of info is available online by doing a Google search for

cochlear implant and you will probably find the closest implant

center that way.

You're more than welcome to email me if you want. Maybe we can

compare notes or something

regards,

Pete

> Hi,

> My name is Dodie. I was told about this site on the Hearing

Exchange

> chat last night. I am HOH. I have a profound to severe loss in my

> right ear and a severe to moderate loss in my left ear. This is a

> progressive loss and I recently suffered another progression. This

> required me to get new hearing aids. I am now wearing power

digital

> BTE's. I don't have any speech recognition in my right ear, but

the

> aid helps balance environmental sounds.

>

> I would like to learn more about CI's and the process involved. As

> my hearing loss progresses I will eventually lose the hearing I

have

> left. I now am at the point where strictly verbal communication is

> not working for me. I am finding myself relying on visual cues

more

> and more. I have also discovered that I have learned some lip

> reading over the years. My hearing loss was diagnosed in 1977 when

I

> was 14. I had actually had hearing loss from the age of 9, but my

> parents were told for 5 yrs that it was just fluid and would clear

> up. I was on Sudafed almost constantly for those 5 yrs.

>

> I have a special amplified phone at home that I got from the Public

> Utilities Commission here in Oregon. I use an amplifier at work

> also, but I find that on the days I use the phone a lot I am more

> tired. I am starting to prefer e-mail over phone calls. It is

much

> less exhausting. I can no longer function as a " hearing " person in

> noisy environments.

>

> I really want to know how far gone does my hearing have to be to be

> eligible for CI and does it have to be both ears that are at that

> level. I still can function in quiet settings with my hearing aid

in

> the left ear.

>

> Any insight you can give would be greatly appreciated. I also am

> trying to find out how to make communication easier in my current

> situation. As I have stated, I am solely relying on hearing aids

and

> a little speech reading to communicate. Any ideas in that area

would

> be appreciated too.

>

> Thanks,

> Dodie Pettipas

[Guest guest]

Hello Dodie,

Welcome to . You've certainly come to the right place to look

for information on the implant process. this forum is full of very

supportive and knowledgable folks who are willing to help you through

the entire process should you qualify.

The hearing impairment requirement is 60% or less speech

comprehension in your best ear.

The first steps to doing this would be an evaluation by a certified

cochlear implant audiologist.. one who has experience working with

implant candidates.

They will tell you if you qualify and will also tell you what tests

are required by their particular center before you are implanted.

If you'd like more information, please feel free to email me

privately.

There are many excellent ci centers and if you want more detailed

information as to how the implant works, please let me know.

What area are you in?

Nice to have you here on the forum.

Regards,

Silly in MI

N24C presently wearing 3G

Hereditary bilateral progressive nerve deafness

Volunteer Advocate

" Courage isn't the absence of fear, but rather the judgement that

something else is more important than fear. "

Ambrose Redmoon

[Guest guest]

Hi Dodie!

Sounds to me that you are a candidate! I had very little speech

discrimination with my bi-cross aides (deaf in left completly with

progression in the right since age of 2) and they said I was more

than a candidate since they only require about 35% or less to be a

candidate. I was implanted by Dr Schluening at OHSU here in

Portland and was just hooked up today! It is a interesting

experience but in the long run if I can hear my babies voices agin

it will be well worth it!

I urge you to check into everything!

Bridget

[Guest guest]

,

Thanks for the information. I have a ways to go before I am down to

the 60% or less speech comprehension in my best ear. Is that with

hearing aids? I do ok in quiet situations, it is when there is

background noise I have trouble.

If my right ear is any indication, it will just be a couple more

years before my left ear loses the speech recognition. That is the

part I hate about a progressive loss. No one can tell me when the

next loss will occur or how much of a loss it will be. It is very

frustrating. I had my hearing tested in July and I swear I have lost

more hearing since I was fitted for my new aids in August. But I

went about 5 yrs without any more loss. It is so unpredictable. I

am kind of afraid it will happen quickly in my left ear. My right

ear was my better ear, then suddenly I couldn't hear hardly anything

on that side. I don't think it was overnight, but it seemed sudden.

I will keep gathering information. Eventually I know I will be a

candidate for CI, I just don't know when. I want to be prepared.

Thanks again.

Dodie

> Hello Dodie,

> Welcome to . You've certainly come to the right place to look

> for information on the implant process. this forum is full of very

> supportive and knowledgable folks who are willing to help you

through

> the entire process should you qualify.

>

> The hearing impairment requirement is 60% or less speech

> comprehension in your best ear.

>

> The first steps to doing this would be an evaluation by a certified

> cochlear implant audiologist.. one who has experience working with

> implant candidates.

>

> They will tell you if you qualify and will also tell you what tests

> are required by their particular center before you are implanted.

>

> If you'd like more information, please feel free to email me

> privately.

> There are many excellent ci centers and if you want more detailed

> information as to how the implant works, please let me know.

>

> What area are you in?

>

> Nice to have you here on the forum.

>

> Regards,

> Silly in MI

> N24C presently wearing 3G

> Hereditary bilateral progressive nerve deafness

> Volunteer Advocate

>

> " Courage isn't the absence of fear, but rather the judgement that

> something else is more important than fear. "

>

> Ambrose Redmoon

[Guest guest]

Dodie,

Welcome to our forum. I can relate to your story because you say that you

have a bad right ear, which dropped off somewhat suddenly. My own right ear

used to be my dominant ear, to the expense of my left ear. Then, it started

progressively losing hearing, slowly, with one dramatic fluctuation one

evening, then returned, but continued to decline. It " fell out " for good on

April 25, 2002 as I was watching Survivor on TV. My left ear HA drowned out

my right ear HA from then on.

It is terrible to go through a progressive loss because you don't know what's

going to happen when or long term. I was told at the rate I was losing my

hearing, I'd need a CI in 7 years. Then, it happened in one night. In a way,

I think of it as being " taken out of my misery. " But, I had a little more

suffering to go because my left ear trembled just around that upper limit of

60% hearing. Hopefully, your results will be less ambiguous and you can just

go for it. A CI is for living.

Please keep us informed of your evaluation progress. May it be speedy and

decisive!

M., age 37, Sacramento, CA

Rubella related hearing loss in both ears since birth, bilateral HAs until

age 36

L ear Canta 7 HA, R ear N24C implanted 04/03/03 after unilateral R ear

deafness

Hookup coming 05/07/03...the butterflies are fluttering.....

[Guest guest]

Hi Dodie

I know that there is an implant center in Boise Idaho. They were

closer but my surgeon, Dr. Schleuning helped me 5 years ago when my

hearing would not balance out, so I went with them. I know what you

mean about not being able to even comprehend not hearing the kids.

My girls also make me look at them when they are talking. I was

implanted 3/25/03 and went a month without any sound until my hook-

up today. It was hard not being able to hear but I realized that it

was like not having my hearing aides in at all. I never realized I

was that deaf until the surgery. I have heard that the implant

center in Boise is a very good one.

Take Care!

Bridget

[Guest guest]

Alyssa,Your son sounds a lot like my younger ASD son. He's PDD-NOS with hyperlexia. He was diagnosed by a pediatric neurologist just after his third birthday (this past July), so I think finding a dx. for your son is possible. Educationally, because my son, while reading, has had speech delays (he'd spell words to us instead of using the word itself to make a request), he was enrolled in our local county's PREP class for 3 year olds, which has a huge focus on speech. He is doing GREAT, even though academically he's way ahead of the other kids in the class. (He's reading and doing simple arithmetic.) His class really focuses on interaction between the children, as well, and we've just had a report that Owen is doing really well in interacting with the other kids. He also gets speech therapy and occupational therapy during school hours. (His gross motor skills aren't lacking too much, so he doesn't require any major intervention there.) I *personally* don't hold any faith in the whole CFGF diet or DAN! doctors, but if it's working for YOU, that's great. My reasons for not trying the diet is this...some of Owen's symptoms showed up when he was on soy formula ONLY...that is, between 4-6 months of age, before introduction of any solid food. So, I don't know that, for either of my boys ('s symptoms showed up early, as well) that it would be productive, and would be VERY challenging based on their food aversions. As your son is still under 3, have you considered having him evaluated by your local program for infants and toddlers? They won't diagnose, but they would get him on track for services required. I do have to say, that transitioning into an IEP and into school has been MUCH easier with Owen, who was young enough for our Infants and Toddlers program, than with , who went through other channels. So if you haven't sought that out, I'd recommend it.Mina -------------------------------Mina SmolinskiMommy to: 9/25/02 - NT 5/13/04 - PDD-NOSOwen 7/1/05 - PDD-NOS/HyperlexiaLila 3/3/07 - NT On Sep 23, 2008, at 10:21 PM, johnalyssa43 wrote:My son is 2 3/4 years old and we are in the process of figuring out what is going on with him. He is currently "undiagnosed" but we are growing increasingly concerned that he may be on the spectrum and AS in particular.We are mostly concerned because his profile is so "uneven". He is in the 9 % for gross motor- per the PT eval and he toe walks 80% of the time. He can not get from the car into CVS without falling several times. ...And yet he is reading. Really reading. Street signs, beginning readers, etc. I can only assume it is "hyperlexia". I have recently started seeing a nutitionist at a DAN! doctor's office (which I am sure is controversial to some) but for us it has been helpful from a biomedical perspective so far. But we have only just begun treatment.He is currently CFGF and going CF and dairy free was a vital change for Nick. His whole personality changed when we removed dairy.I am also very concerned about the social piece for Nick. He just started pre-school in Sept. but every day I pick him up he is playing solo on the playground which I know is a hallmark symptom. Anyone with experience getting an AS diagnosis on a child this young. Any ideas?Alyssa

[Guest guest]

Yes, as the developmental pedi. said, "It is the "uneven profile" that is concerning.". And I get that. For Nick, it's poor gross motor and exceptional reading.

You have your hands full with FOUR wee little ones, I see. I am overwhelmed with three. Taking on the diet does require an over-haul of your kitchen, shopping and general way of life. In fact, I think it would make a great new reality series actually. Maybe I could pitch my idea to NBC to help us pay for my new organic grocery bill, my fancy new bread machine, and my new Kitchen Aid mixer!!!

My question would be, if your kids are already significantly "self-limiting" foods does that imply that they have some "food sensitivities" (with a delayed reaction) or food allergies and this is their way of controlling their own diets? ...just a thought.

I am glad to hear your kids are making good progress. That is what is most important! I need to hear the happy stories.

Alyssa

My son is 2 3/4 years old and we are in the process of figuring out what is going on with him. He is currently "undiagnosed" but we are growing increasingly concerned that he may be on the spectrum and AS in particular.We are mostly concerned because his profile is so "uneven". He is in the 9 % for gross motor- per the PT eval and he toe walks 80% of the time. He can not get from the car into CVS without falling several times. ...And yet he is reading. Really reading. Street signs, beginning readers, etc. I can only assume it is "hyperlexia" . I have rece ntly started seeing a nutitionist at a DAN! doctor's office (which I am sure is controversial to some) but for us it has been helpful from a biomedical perspective so far. But we have only just begun treatment.He is currently CFGF and going CF and dairy free was a vital change for Nick. His whole personality changed when we removed dairy.I am also very concerned about the social piece for Nick. He just started pre-school in Sept. but every day I pick him up he is playing solo on the playground which I know is a hallmark symptom. Anyone with experience getting an AS diagnosis on a child this young.

Any ideas?Alyssa

[Guest guest]

My kids food limiting is based on two things...one is texture sensitivity. Owen only (until JUST recently, like two days ago) would only eat something if it was dry/crunchy on the outside. He'll eat things like chicken nuggets, fish sticks, and other breaded foods, and he'll eat PB sandwiches, etc., because the outside is dry. Two days ago he got out a yogurt and wanted me to open it for him. Now, he has NEVER eaten anything of this texture...no pudding, ice cream, etc. But he insisted, and so we went and got a spoon (which he's never used, because all his foods are really finger foods) and then proceeded to try to use the spoon to feed ME the yogurt. I told him no, I didn't want it, and since he wanted it opened he had to at least TRY it. (This is a big deal...I've never been able to get anything like this anywhere NEAR his mouth.) I had to hold on to him, and helped him get some on his lips (he didn't resist too much). He licked his lips and said "Mmmmm!", and then proceeded to use his spoon to eat the entire container (minus what he got on the table, floor and himself). He wanted to lick the yogurt off the spoon rather than bite it off, but hey, it's his first time with a spoon! (I never fed him baby food because even at 5-6 months old he'd grimace and turn away, and grit his teeth so I couldn't get the food into his mouth, so this has been a LONG time textural aversion.)The other thing with limiting foods is, I believe, just fear of trying things that are new. As they get older they get better about this, but we're not at the point where I can say "but it tastes a lot like something you DO like". Of course, my now 6 year old (today!) is just getting better about this, so how much of this is just the age and how much is related to ASD I don't know.I've got other great reports that I'll share, but I'm running out of time this morning! LOL!Mina -------------------------------Mina SmolinskiMommy to: 9/25/02 - NT 5/13/04 - PDD-NOSOwen 7/1/05 - PDD-NOS/HyperlexiaLila 3/3/07 - NT On Sep 24, 2008, at 9:32 PM, Alyssa Davi wrote:Yes, as the developmental pedi. said, "It is the "uneven profile" that is concerning.". And I get that. For Nick, it's poor gross motor and exceptional reading. You have your hands full with FOUR wee little ones, I see. I am overwhelmed with three. Taking on the diet does require an over-haul of your kitchen, shopping and general way of life. In fact, I think it would make a great new reality series actually. Maybe I could pitch my idea to NBC to help us pay for my new organic grocery bill, my fancy new bread machine, and my new Kitchen Aid mixer!!! My question would be, if your kids are already significantly "self-limiting" foods does that imply that they have some "food sensitivities" (with a delayed reaction) or food allergies and this is their way of controlling their own diets? ...just a thought. I am glad to hear your kids are making good progress. That is what is most important! I need to hear the happy stories. AlyssaMy son is 2 3/4 years old and we are in the process of figuring out what is going on with him. He is currently "undiagnosed" but we are growing increasingly concerned that he may be on the spectrum and AS in particular.We are mostly concerned because his profile is so "uneven". He is in the 9 % for gross motor- per the PT eval and he toe walks 80% of the time. He can not get from the car into CVS without falling several times. ...And yet he is reading. Really reading. Street signs, beginning readers, etc. I can only assume it is "hyperlexia" . I have rece ntly started seeing a nutitionist at a DAN! doctor's office (which I am sure is controversial to some) but for us it has been helpful from a biomedical perspective so far. But we have only just begun treatment.He is currently CFGF and going CF and dairy free was a vital change for Nick. His whole personality changed when we removed dairy.I am also very concerned about the social piece for Nick. He just started pre-school in Sept. but every day I pick him up he is playing solo on the playground which I know is a hallmark symptom. Anyone with experience getting an AS diagnosis on a child this young. Any ideas?Alyssa

[Guest guest]

Does he play with other kids at other times of the day? He is awfully young and might not have gotten interested in other kids much yet. Obviously something is going on with him. Why not find a developmental doctor (at your nearest Children's Hospital?) and get an evaluation done to find out what's going on. It could be any number of things really. A doctor could take his history and examine him and come up with a dx.

RoxannaYou're UniqueJust like everyone else...

( ) looking for information

My son is 2 3/4 years old and we are in the process of figuring out what is going on with him. He is currently "undiagnosed" but we are growing increasingly concerned that he may be on the spectrum and AS in particular.We are mostly concerned because his profile is so "uneven". He is in the 9 % for gross motor- per the PT eval and he toe walks 80% of the time. He can not get from the car into CVS without falling several times. ...And yet he is reading. Really reading. Street signs, beginning readers, etc. I can only assume it is "hyperlexia". I have recently started seeing a nutitionist at a DAN! doctor's office (which I am sure is controversial to some) but for us it has been helpful from a biomedical perspective so far. But we have only just begun treatment.He is currently CFGF and going CF and dairy free was a vital change for Nick. His whole personality changed when we removed dairy.I am also very concerned about the social piece for Nick. He just started pre-school in Sept. but every day I pick him up he is playing solo on the playground which I know is a hallmark symptom. Anyone with experience getting an AS diagnosis on a child this young. Any ideas?Alyssa

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.7.1/1686 - Release Date: 9/23/2008 7:38 AM

[Guest guest]

Usually self-limited diets are attributed to sensory problems. There are usually taste sensitivites or even the texture of food causes problems. My oldest had problems with the temperature of food. I had no clue what was going on at the time but we just figured out that if we made his food cold, he would eat anything. Eventually, I slowly warmed his food up over time and he eats anything these days.

RoxannaYou're UniqueJust like everyone else...

Re: ( ) looking for information

Yes, as the developmental pedi. said, "It is the "uneven profile" that is concerning.". And I get that. For Nick, it's poor gross motor and exceptional reading.

You have your hands full with FOUR wee little ones, I see. I am overwhelmed with three. Taking on the diet does require an over-haul of your kitchen, shopping and general way of life. In fact, I think it would make a great new reality series actually. Maybe I could pitch my idea to NBC to help us pay for my new organic grocery bill, my fancy new bread machine, and my new Kitchen Aid mixer!!!

My question would be, if your kids are already significantly "self-limiting" foods does that imply that they have some "food sensitivities" (with a delayed reaction) or food allergies and this is their way of controlling their own diets? ...just a thought.

I am glad to hear your kids are making good progress. That is what is most important! I need to hear the happy stories.

Alyssa

My son is 2 3/4 years old and we are in the process of figuring out what is going on with him. He is currently "undiagnosed" but we are growing increasingly concerned that he may be on the spectrum and AS in particular.We are mostly concerned because his profile is so "uneven". He is in the 9 % for gross motor- per the PT eval and he toe walks 80% of the time. He can not get from the car into CVS without falling several times. ...And yet he is reading. Really reading. Street signs, beginning readers, etc. I can only assume it is "hyperlexia" . I have rece ntly started seeing a nutitionist at a DAN! doctor's office (which I am sure is controversial to some) but for us it has been helpful from a biomedical perspective so far. But we have only just begun treatment.He is currently CFGF and going CF and dairy free was a vital change for Nick. His whole personality changed when we removed dairy.I am also very concerned about the social piece for Nick. He just started pre-school in Sept. but every day I pick him up he is playing solo on the playground which I know is a hallmark symptom. Anyone with experience getting an AS diagnosis on a child this young. Any ideas?Alyssa

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[Guest guest]

So strange you are bringing up teeth grinding. I had watched a U-tube video the other night of an autistic child doing this and I thought, I would never have put the two behaviors together.

....And today Nate was GRINDING HIS TEETH! For the first time. It was so bizarre. Nate is doing oral motor therapy three times weekly so I had a chewy tube and I IMMEDIATELY threw it into his mouth and at nap time I left it in his crib.

What can you do about teeth grinding? Any thoughts? I am praying this isn't a new behavior that will continue.

Sensory, oral motor stuff is challenging to address. I have a friend whose daughter will only eat bacon and grape tomatoes...

Best,

Alyssa

My son is 2 3/4 years old and we are in the process of figuring out what is going on with him. He is currently "undiagnosed" but we are growing increasingly concerned that he may be on the spectrum and AS in particular.We are mostly concerned because his profile is so "uneven". He is in the 9 % for gross motor- per the PT eval and he toe walks 80% of the time. He can not get from the car into CVS without falling several times. ...And yet he is reading. Really reading. Street signs, beginning readers, etc. I can only assume it is "hyperlexia" . I have rece ntly started seeing a nutitionist at a DAN! doctor's office (which I am sure is controversial to some) but for us it has been helpful from a biomedical perspective so far. But we have only just begun treatment.He is currently CFGF and going CF and dairy free was a vital change for Nick. His whole personality changed when we removed dairy.I am also very concerned about the social piece for Nick. He just started pre-school in Sept. but every day I pick him up he is playing solo on the playground which I know is a hallmark symptom. Anyone with experience getting an AS diagnosis on a child this young.

Any ideas?Alyssa

[Guest guest]

We are working towards an eval. But as I am sure you know, everything takes longer than you would like. The waiting lists are too long and time is ticking by. There are several red flags but not something overt... because I think he is still really little too. I talked to his pre-school yesterday and when I picked him up at school today he was playing a ball game with another child and it was being SUPERVISED by one of the teachers! I was over-joyed. Maybe that's exactly what he needs. "Guided play" with other kids!!!!!

My kids had temperature issues with bottles when they were babies. The bottles had to be super hot. Hotter than I would like. I hadn't thought about temperature affecting older kids eating too but it makes sense. I am going to pay better attention to this with my 14 month old. Maybe that's why he wouldn't eat his dinner the other night. Maybe it had gotten too cold.

Thanks for the thought,

Alyssa

From: Roxanna <madideas@...>Subject: Re: ( ) looking for information Date: Thursday, September 25, 2008, 1:46 PM

Does he play with other kids at other times of the day? He is awfully young and might not have gotten interested in other kids much yet. Obviously something is going on with him. Why not find a developmental doctor (at your nearest Children's Hospital?) and get an evaluation done to find out what's going on. It could be any number of things really. A doctor could take his history and examine him and come up with a dx.

RoxannaYou're UniqueJust like everyone else...

( ) looking for information

My son is 2 3/4 years old and we are in the process of figuring out what is going on with him. He is currently "undiagnosed" but we are growing increasingly concerned that he may be on the spectrum and AS in particular.We are mostly concerned because his profile is so "uneven". He is in the 9 % for gross motor- per the PT eval and he toe walks 80% of the time. He can not get from the car into CVS without falling several times. ...And yet he is reading. Really reading. Street signs, beginning readers, etc. I can only assume it is "hyperlexia" . I have recently started seeing a nutitionist at a DAN! doctor's office (which I am sure is controversial to some) but for us it has been helpful from a biomedical perspective so far. But we have only just begun treatment.He is currently CFGF and going CF and dairy free was a vital change for Nick. His whole personality changed when we removed

dairy.I am also very concerned about the social piece for Nick. He just started pre-school in Sept. but every day I pick him up he is playing solo on the playground which I know is a hallmark symptom. Anyone with experience getting an AS diagnosis on a child this young. Any ideas?Alyssa

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[Guest guest]

The thing is, neither of my kids grind their teeth now. One has a few waffle-knit blankets that he likes to chew/suck on, though! But, we don't really have any grinding/chewing issues, which is nice, because I know that many ASD kids do. But, when Owen didn't want me to put something in his mouth as a baby he would clench his teeth together really tightly to avoid getting any of the "yucky" texture in his mouth! LOL! It let me know he didn't want it, so I suppose it worked!Sensory aversions are particularly hard to address, because if you think about it, we ALL have certain sensory aversions, it's just that some ASD kiddos seem to have MANY. Sometimes, like with Owen and the yogurt, you can get them past the texture of the item if they discover it tastes good. But, for others, the texture is just going to be too much for them to get past, and that's really ok. I've never been one to force foods on my kids that I know they don't like, mostly because I had/have my own texture aversions, and was still forced to eat things that made me gag as a child. Not a pleasant experience, and not one I want to foist on my kids!My husband still will complain about the middle boys' diet from time to time...that they "should" be eating more variety, more fruits and veggies, etc., etc. I've told him that if HE wants to fix them the food and then make sure that they eat it, feel free. I gave up long ago making things that I thought they SHOULD eat and then throwing it away when they didn't. ;o)The one thing I will say is that texture aversion has made me more creative in ways to introduce food groups that wouldn't normally "fit". For example, because Owen likes chips and crackers, I can take a slice of cheese (or some shredded cheese) and put it on parchment and microwave it until it gets crunchy, like a chip. He LOVES them. Or, you can also microwave pepperoni slices and make pepperoni chips. Because he likes bread, I make things like banana bread, zucchini bread, apple bread, carrot cake (no frosting), etc., etc. for breakfast foods or snacks more often than I normally would. He likes bran muffins. He'll eat things like raisins if they are in a cookie, so we do that. (Oh, pumpkin bread or sweet potato bread works great, too.) So, while he might not sit down and eat an ear of corn with his dinner, he's at least getting some nutrition from the types of foods he really likes. And the other kids also are more likely to eat a pumpkin muffin that to eat squash at dinner, anyway! LOL!Mina -------------------------------Mina SmolinskiMommy to: 9/25/02 - NT 5/13/04 - PDD-NOSOwen 7/1/05 - PDD-NOS/HyperlexiaLila 3/3/07 - NT On Sep 25, 2008, at 2:55 PM, Alyssa Davi wrote:So strange you are bringing up teeth grinding. I had watched a U-tube video the other night of an autistic child doing this and I thought, I would never have put the two behaviors together. ...And today Nate was GRINDING HIS TEETH! For the first time. It was so bizarre. Nate is doing oral motor therapy three times weekly so I had a chewy tube and I IMMEDIATELY threw it into his mouth and at nap time I left it in his crib. What can you do about teeth grinding? Any thoughts? I am praying this isn't a new behavior that will continue. Sensory, oral motor stuff is challenging to address. I have a friend whose daughter will only eat bacon and grape tomatoes... Best,AlyssaMy son is 2 3/4 years old and we are in the process of figuring out what is going on with him. He is currently "undiagnosed" but we are growing increasingly concerned that he may be on the spectrum and AS in particular.We are mostly concerned because his profile is so "uneven". He is in the 9 % for gross motor- per the PT eval and he toe walks 80% of the time. He can not get from the car into CVS without falling several times. ...And yet he is reading. Really reading. Street signs, beginning readers, etc. I can only assume it is "hyperlexia" . I have rece ntly started seeing a nutitionist at a DAN! doctor's office (which I am sure is controversial to some) but for us it has been helpful from a biomedical perspective so far. But we have only just begun treatment.He is currently CFGF and going CF and dairy free was a vital change for Nick. His whole personality changed when we removed dairy.I am also very concerned about the social piece for Nick. He just started pre-school in Sept. but every day I pick him up he is playing solo on the playground which I know is a hallmark symptom. Anyone with experience getting an AS diagnosis on a child this young. Any ideas?Alyssa

[Guest guest]

Alyssa,

My son used to grind his teeth all the time, too. Sensory issues can

be managed and improved: check out this group for that:

SID-DSI_AllAboutKids/

>

>

>

>

>

>

> My son is 2 3/4 years old and we are in the process of figuring out 

> what is going on with him. He is currently " undiagnosed " but we are 

> growing increasingly concerned that he may be on the spectrum and

AS in 

> particular.

>

> We are mostly concerned because his profile is so " uneven " . He is

in 

> the 9 % for gross motor- per the PT eval and he toe walks 80% of

the 

> time. He can not get from the car into CVS without falling several 

> times. ...And yet he is reading. Really reading. Street signs, 

> beginning readers, etc. I can only assume it is " hyperlexia " . I

have 

> rece ntly started seeing a nutitionist at a DAN! doctor's office

(which 

> I am sure is controversial to some) but for us it has been helpful

from 

> a biomedical perspective so far. But we have only just begun

treatment.

> He is currently CFGF and going CF and dairy free was a vital change

for 

> Nick. His whole personality changed when we removed dairy.

>

> I am also very concerned about the social piece for Nick. He just 

> started pre-school in Sept. but every day I pick him up he is

playing 

> solo on the playground which I know is a hallmark symptom. Anyone

with 

> experience getting an AS diagnosis on a child this young. Any ideas?

>

> Alyssa

>

[Guest guest]

Thank you for providing this useful link. I, too, have applied.

: ) Velvet

> >

> >

> >

> >

> >

> >

> > My son is 2 3/4 years old and we are in the process of figuring

out 

> > what is going on with him. He is currently " undiagnosed " but we

are 

> > growing increasingly concerned that he may be on the spectrum and

> AS in 

> > particular.

> >

> > We are mostly concerned because his profile is so " uneven " . He is

> in 

> > the 9 % for gross motor- per the PT eval and he toe walks 80% of

> the 

> > time. He can not get from the car into CVS without falling

several 

> > times. ...And yet he is reading. Really reading. Street signs, 

> > beginning readers, etc. I can only assume it is " hyperlexia " . I

> have 

> > rece ntly started seeing a nutitionist at a DAN! doctor's office

> (which 

> > I am sure is controversial to some) but for us it has been

helpful

> from 

> > a biomedical perspective so far. But we have only just begun

> treatment.

> > He is currently CFGF and going CF and dairy free was a vital

change

> for 

> > Nick. His whole personality changed when we removed dairy.

> >

> > I am also very concerned about the social piece for Nick. He just 

> > started pre-school in Sept. but every day I pick him up he is

> playing 

> > solo on the playground which I know is a hallmark symptom. Anyone

> with 

> > experience getting an AS diagnosis on a child this young. Any

ideas?

> >

> > Alyssa

> >

>

[Guest guest]

Mina,

Your post just blew me away about your son not eating certain foods

and never eating off a spoon. I thought that my son was the only one

out there that was that sensitive with his sensory issues. I also

could not feed him baby food beacause of the textures and he couldnt

stand to have any type of eating utensils in his mouth. Wow, isnt

that funny. He is now 10 and still loves chicken nuggets, and pizza

with just peperoni and pband J and a hot dog here and there, but once

in a while he will try new things and usually he doesnt like them but

once in a while we will come across something he may want to try

again. He will not eat any type of fruits--NONE and only green beans

for vegetables. No type of potato at all. However, he does eat off of

utensils now, usually just one in paticular though it is a spork, you

know a spoon and a fork all in one. Isnt that funny. Wow, it amazes

me still to here other peoples stories especially when I can really

relate like I did to this one. Hopefully when your son gets older he

will be eating more types of foods and using spoons and forks or

maybe he will like a spork like my son.LOL Good Luck

> >>

> >>> My son is 2 3/4 years old and we are in the process of figuring

out

> >>> what is going on with him. He is currently " undiagnosed " but we

are

> >>> growing increasingly concerned that he may be on the spectrum

and

> >>> AS in

> >>> particular.

> >>>

> >>> We are mostly concerned because his profile is so " uneven " . He

is in

> >>> the 9 % for gross motor- per the PT eval and he toe walks 80%

of the

> >>> time. He can not get from the car into CVS without falling

several

> >>> times. ...And yet he is reading. Really reading. Street signs,

> >>> beginning readers, etc. I can only assume it is " hyperlexia " .

I

> >>> have

> >>> rece ntly started seeing a nutitionist at a DAN! doctor's

office

> >>> (which

> >>> I am sure is controversial to some) but for us it has been

helpful

> >>> from

> >>> a biomedical perspective so far. But we have only just begun

> >>> treatment.

> >>> He is currently CFGF and going CF and dairy free was a vital

> >>> change for

> >>> Nick. His whole personality changed when we removed dairy.

> >>>

> >>> I am also very concerned about the social piece for Nick. He

just

> >>> started pre-school in Sept. but every day I pick him up he is

> >>> playing

> >>> solo on the playground which I know is a hallmark symptom.

Anyone

> >>> with

> >>> experience getting an AS diagnosis on a child this young. Any

ideas?

> >>>

> >>> Alyssa

> >>>

> >>

> >>

> >>

> >

> >

> >

> >

>

[Guest guest]

My Aspie son, now age 16, began reading at age 2 as well. He was

reading at 6th grade level by age 5. We chose to homeschool.

It helped to follow his interests and expand the socialization in

doses he could cope with. He went through many obsessions over the

years. Eventually, he found a hobby that got him involved with lots of

other folks who were just as obsessed about antique engines as he is.

They all think it's great.

They grow up fast. Enjoy each phase.

Find ways to refresh your soul; yoga, prayer, walks in nature, etc...

M.

[Guest guest]

> My son is 2 3/4 years old..... He can not get from the car into CVS

>without falling several times...... he is playing solo on the

>playground>>>>>>

For one thing his is only just 2 yrs old and at this age they parallel

play which is what he is doing. Which is playing next to or near by

but not with each other.

Also could he have a problem with his ears as in his middle ears as

that can could balance problems and falling down???

Good Luck

Marj

[Guest guest]

My son too was also reading by age four at a third grade level. He

didnt start talking until he was four, but before then when he didnt

talk he would still write words out on his magnadoodle and had

beautiful penmanship but could not talk. How amazing. He was obsessed

with street signs so he would memorize all the different street signs

while we were out driving in the car and he would draw them on his

magnadoodle in the car, and when he got home he would get his big

magnadoodle and draw the steet post with the two rectangular steet

signs and write the street names inside of them spelled correctly. He

could tell me how to get home from anywhere. He would draw stop signs

and yield signs and rail road signs and speel every thing correctly and

color them the correct colors. No one could believe it. In school when

the teacher saw him reading in pre school she thought he memorized a

book that I had read to him, when I told her he could read she thought

I was nuts, so I had her pick out any book she wanted and give it to

him and he would read it, thats when they tested him and found out he

was reading at a third grade level at age four. How funny they are.

>

> My Aspie son, now age 16, began reading at age 2 as well. He was

> reading at 6th grade level by age 5. We chose to homeschool.

> It helped to follow his interests and expand the socialization in

> doses he could cope with. He went through many obsessions over the

> years. Eventually, he found a hobby that got him involved with lots of

> other folks who were just as obsessed about antique engines as he is.

> They all think it's great.

> They grow up fast. Enjoy each phase.

> Find ways to refresh your soul; yoga, prayer, walks in nature, etc...

>

> M.

>

[Guest guest]

He just got his ear tubes (due to chronic ear infections and fluid behind his ear drums) about three weeks ago and I was crossing my fingers that I would see an improvement in his balance and coordination. But no change yet. I am still hopeful though it might have some benefit.

I understand about the parallel play and his age. That's why it may be too soon to know if this is AS or other issues (motor planning problems- toe walking 80% of the time, core muscle weakness, GI dysfunction- chronic diarrhea, food allergies/sensitivities, and detoxification problems). There is not any one huge red flag... just lots of little ones (pronoun problems, hyperlexia, obssesion with books-number and letters, can perseverate on one question over and over, POOR eye contact upon request, etc). I decided to have him evaluated and that's happening Nov. 10, 12, and 13th. Then hopefully we will know more. They may not be able to tell me for sure but at least they can give me some guidance about how much and what services would be most helpful for him at his age and stage of development.

Alyssa

I am hoping the eval. says no. But I am bracing for a yes.

From: kellystar734 <kellystar734@...>Subject: ( ) Re: looking for information Date: Wednesday, October 1, 2008, 1:46 AM

> My son is 2 3/4 years old..... He can not get from the car into CVS >without falling several times...... he is playing solo on the >playground> >>>>>For one thing his is only just 2 yrs old and at this age they parallel play which is what he is doing. Which is playing next to or near by but not with each other.Also could he have a problem with his ears as in his middle ears as that can could balance problems and falling down???Good LuckMarj

[Guest guest]

Alyssa,

I would prepare for the answer to be yes also. It sounds like the

symptoms my son had. He also had alot of ear infections and had tubes

put in at 7 1/2 months old. He was the youngest child the doctor had

ever put tubes in. He was not crawling or sitting up or rolling over

or anything and literally two days after having his tubes put in he

was crawling and sitting up and rolling over and about a week later

he was pulling himself up on the furniture to stand. He did not start

walking until about 16 months though. Good Luck with your child.

> > My son is 2 3/4 years old..... He can not get from the car into

CVS

> >without falling several times...... he is playing solo on the

> >playground> >>>>>

>

> For one thing his is only just 2 yrs old and at this age they

parallel

> play which is what he is doing. Which is playing next to or near by

> but not with each other.

>

> Also could he have a problem with his ears as in his middle ears as

> that can could balance problems and falling down???

>

> Good Luck

> Marj

>

[Guest guest]

Hi Alyssa

I was wondering if you got a dx for your son yet. I just joined the

group and came across your post and have been reading your & Mina's

posts since you seem to have the same aged boys as my son. I am

struggling with my son and trying to figure him out. I know he

isn't " normal " but I really don't know where he falls. He is 3.5 yrs

old and is also very bright! He is also reading, doing simple math,

writes, can understand pretty complex ideas for kids his age. He is

speech delayed though. He talks but doesn't have conversations. He

doesn't ask me questions like most children his age usually start

doing. When he does have conversations they are not complete

sentences and I usually have to do most of the talking and ask him

lots of questions. He is in preschool also and mostly plays with the

teachers and parallel plays. He likes to play chase and duck/duck

goose because he is a great runner and loves it. His gross and fine

motor skills are good, his gross much better than fine. He has

limited friends and loves being around us and grandparents. We have

a 1.5 y/o son also whom he has now learned to accept. His preschool

teachers are always hinting to the fact that he may have asperger's

but I haven't taken him anywhere to be dx yet.

He is also CFGF for a year now and that was a godsend. His tantrums

minimized to what a normal 2 & 3 y/o has and that's when his speech

improved tremendously. He sometimes has bread or cake now but very

limited. If he has too much or more that 2 days in a row, we can see

him behavior change. Dairy is completely out of the question because

when he does have dairy, it make him crazy!!

We also see a DAN doctor only because his original ped pushed lots of

vaccines and honestly I feel that has a lot to do with why our

children are the way they are. She is great, she is a board

certified ped and becoming a DAN doctor when her 12 y/o son was

almost lost to autism. Unfortunetly, the only thing she has done for

us is stopped the vaccines and given him and younger son their check

ups but that's it. She works with many children with autism from

high functioning to severe and when I asked her what she thought of

my son, she said she didn't feel like he has anything, rather that he

was very bright and well behaved. (yeah, just in her office!!) LOL.

We have also been to a gifted consultant, because so many people also

tell us that he may be gifted. When we went she described what

people who are gifted are like and she almost described Connor to a

T. She asked us to read a book called Misdiagnosed/Dual Diagnosis of

Gifted Children. Telling us that gifted children are often

misdiagnosed by teacher's and therapists because being a gifted

person has lots of symptoms that children with ADD, ASD and

Asperger's have and if they don't have experience with giftedness

than that is what they immediately assume. If a child is gifted more

than often they are introverts and they shouldn't be pushed on the

social thing because it can cause them to have poor self esteem.

Well after I've talked your ear off, you can see that I am in a

bind. Schools are pushing Aspergers/Autism, I want to make sure he

isn't just gifted and I need him to start talking!! I don't know

what to do!!

> > My son is 2 3/4 years old..... He can not get from the car into

CVS

> >without falling several times...... he is playing solo on the

> >playground> >>>>>

>

> For one thing his is only just 2 yrs old and at this age they

parallel

> play which is what he is doing. Which is playing next to or near by

> but not with each other.

>

> Also could he have a problem with his ears as in his middle ears as

> that can could balance problems and falling down???

>

> Good Luck

> Marj

>

[Guest guest]

>

> Well after I've talked your ear off, you can see that I am in a

> bind. Schools are pushing Aspergers/Autism, I want to make sure he

> isn't just gifted and I need him to start talking!! I don't know

> what to do!!

Personally, my suggestion would be to take him for neuropsych testing

yourself, not through the school, so you can get a professional,

unbiased dx. A neuropsych with a specialty in autism spectrum isn't

going to misdiagnose him. Rather, it will open up the truth to you.

Guessing really is not good.

FYI regarding the gifted versus spectrum... I have found the opposite

to be true. Gifted specialists tend to poo poo away disabilities and

say " oh, he/she is just gifted " . It makes the parent feel better, but

the child goes without crucial early intervention.

I have a gifted 14yo son with Asperger. He went undiagnosed until age

12 because nobody could get past his giftedness. They still can't!

It is a very hard situation. Other people get the special ed services

at a young age, but then everybody wants to ignore the giftedness. It

is very hard to get both aspects of your child considered--so better

to start as early as possible! Some people are

successful--especially in states like CA and MA.

This is my two cents; hope it is helpful.

Ruth