New Member

Posted August 9, 2000 · August 9, 2000

Carmelina:

Hello. I want to jump in here to say, on behalf of the " seasoned moms "

and founders of the Mosaic group that no matter what school your child ends

up attending, we strongly encourage parents of ASD children, especially the

youngest ones, to maintain a strong home program.

If your child is receiving a reasonable number of hours of ABA in the

school placement, then perhaps you can try to add some variation (i.e.:

Greenspan) type therapy in the home program.

I don't know of too many autism programs that effectively " mix " these two

methodologies together. Intensive ABA is strongly recommended for at least

the first year for most ASD children, because it is the only documentable,

quantifiable form of therapy where the results/progress can be proven and

demonstrated. Of course, there are parents who do not agree with all the

principals of ABA, but the peer-reviewed literature that is out there on ABA,

Lovass, and his techniques, presents a pretty compelling case for it's

effectiveness.

At any rate, as I first suggested, regardless of where your child attends

school, the maintenance of a strong home program can be a huge " plus " in

promoting and achieving progress with ASD/PDD kids.

List Moderator

Posted August 9, 2000 · August 9, 2000

Ezzie,

Thank You for answering my post. I do have the packet from Cosac,

I think I need to provide you with more information. I have been

visting several schools,(almost all are ABA)what we are looking for

is a program that is not only ABA, but rather more eclectic in its

approach. (Greenspan & Lovass etc)And since it takes so much time to

set up appiontments, I wanted to get a feel from the group based on

the programs\schools what some of the parents impressions were.

My daughter is going to a program in Essex county in September

that isn't really only ABA,(she was there for the month of July)and

we thoght it was working out O.K. Although, one month is not a long

enough period of time to gage progressive results.

I ask the question about programs\schools, because if the school

she will go back to in Sepember does not demenstate improvement, like

you indicated many have waiting lists for other schools, I want to

have an alternative.

> > Hi To All,

> > I'm new to you group and would like to thank

> > eveyone for the

> > infomation posted. I have a 3 1/2 yr diagnosed ASD.

> > Live in

> > County, working on our IEP with the child study

> > team. Also fighting

> > for additional services in the IEP, like a monitor

> > on the bus.

> > I've visted several schools in various

> > counties, (the program in

> > town is not sufficient, its 1/2 day and no OT)I

> > would like to know

> > what programs (or Schools)are recommended in Bergen

> > County.

> > Thanks,

> > Carmelina

> >

>

> __________________________________________________

>

Posted August 9, 2000 · August 9, 2000

I concur with 100%. Our son's progress has primarily stemmed

from a very solid home program we've had for the past 2 1/2 years.

Carmen

amterry@... wrote:

>

> Carmelina:

> Hello. I want to jump in here to say, on behalf of the " seasoned moms "

> and founders of the Mosaic group that no matter what school your child ends

> up attending, we strongly encourage parents of ASD children, especially the

> youngest ones, to maintain a strong home program.

> If your child is receiving a reasonable number of hours of ABA in the

> school placement, then perhaps you can try to add some variation (i.e.:

> Greenspan) type therapy in the home program.

> I don't know of too many autism programs that effectively " mix " these two

> methodologies together. Intensive ABA is strongly recommended for at least

> the first year for most ASD children, because it is the only documentable,

> quantifiable form of therapy where the results/progress can be proven and

> demonstrated. Of course, there are parents who do not agree with all the

> principals of ABA, but the peer-reviewed literature that is out there on ABA,

> Lovass, and his techniques, presents a pretty compelling case for it's

> effectiveness.

> At any rate, as I first suggested, regardless of where your child attends

> school, the maintenance of a strong home program can be a huge " plus " in

> promoting and achieving progress with ASD/PDD kids.

>

> List Moderator

>

Posted August 9, 2000 · August 9, 2000

Thank You for all for input. My daughter receives private speech & OT

therapy, but not at home. How do I go about getting home tharapy,

that's not extremely costly.

Carmelina

> Carmelina:

> Hello. I want to jump in here to say, on behalf of the

" seasoned moms "

> and founders of the Mosaic group that no matter what school your

child ends

> up attending, we strongly encourage parents of ASD children,

especially the

> youngest ones, to maintain a strong home program.

> If your child is receiving a reasonable number of hours of ABA

in the

> school placement, then perhaps you can try to add some variation

(i.e.:

> Greenspan) type therapy in the home program.

> I don't know of too many autism programs that effectively " mix "

these two

> methodologies together. Intensive ABA is strongly recommended for

at least

> the first year for most ASD children, because it is the only

documentable,

> quantifiable form of therapy where the results/progress can be

proven and

> demonstrated. Of course, there are parents who do not agree with

all the

> principals of ABA, but the peer-reviewed literature that is out

there on ABA,

> Lovass, and his techniques, presents a pretty compelling case for

it's

> effectiveness.

> At any rate, as I first suggested, regardless of where your

child attends

> school, the maintenance of a strong home program can be a huge

" plus " in

> promoting and achieving progress with ASD/PDD kids.

>

> List Moderator

Posted November 6, 2000 · November 6, 2000

Welcome Ais! Nice to see you here :-)

Michele, mom of Arran 12-27-93, Keely 12-5-97 & Rowan 3-15-00! ICQ# 13092478Do your eyes light up when your child walks into the room? ~ Toni on

Hi all!I just joined this list and thought I'd do a quick introduction. I'm 26and a SAHM to Aidan, born 3/30. He's our first. My dh Drew (28) and Ihave been married 5 years this December.Aidan is exclusively bf and is taking solids once a day. He lovesbutternut squash, but he loves his nursies more! )Ais-------------------------- eGroups Sponsor -------------------------~-~>Create your business web site your way now at Bigstep.com.It's the fast, easy way to get online, to promote your business,and to sell your products and services. Try Bigstep.com now.>Give'>http://click.egroups.com/1/9183/0/_/410002/_/973555562/-------------------------------------------------------------------- -_- >Give the Gift of Life Breastfeed!http://www.lactivist.com

Posted November 6, 2000 · November 6, 2000

--- Aislinn aislinn@...> wrote:

> Hi all!

>

> I just joined this list and thought I'd do a quick

> introduction. I'm 26

> and a SAHM to Aidan, born 3/30. He's our first. My

> dh Drew (28) and I

> have been married 5 years this December.

Welcome to the list, I'm 27, SAHM to Hannah

(3 1/2) and Noah born 9/13. My husband (30)

and I have been married 5 years as well as of Sept.

16th.

=====

Mommy to Hannah (4/19/97) and Noah (9/13/00)

__________________________________________________

Posted November 7, 2000 · November 7, 2000

Drake calls em nursie too! He'll say "my need nursie mommy". I don't know how it came to be though......

Fawn

Posted November 7, 2000 · November 7, 2000

HI Ais and welcome. I am Tina, SAHM to Blake born 4-2. Our kids are really

close! Blake is one solids twice a day now, but loves nursing too. We live

in Tucson, AZ.

Tina

Mommy to Blake

born 4-2-00

visit Blake's web site at http://www.growthspurts.com/view.asp?s=20969

New member

> Hi all!

>

> I just joined this list and thought I'd do a quick introduction. I'm 26

> and a SAHM to Aidan, born 3/30. He's our first. My dh Drew (28) and I

> have been married 5 years this December.

>

> Aidan is exclusively bf and is taking solids once a day. He loves

> butternut squash, but he loves his nursies more! )

>

> Ais

>

> Give the Gift of Life Breastfeed!

> http://www.lactivist.com

>

Posted November 7, 2000 · November 7, 2000

Ais,

Thanks so much!

Wendihttp://www.lactivist.com"When individuals have been born gently, welcomed kindly into the community, breastfed for many years, they do not become greedy people. They come from a place of fullness and balance with all our relations." Jeannine Parvati Baker

-----Original Message-----From: Aislinn Sent: Monday, November 06, 2000 8:42 PMTo: breastfeeding (AT) eSubject: Re: New memberWendi wrote: Ais, Welcome to the list. :)Thanks, Wendi! BTW, I love your site . . . tons of great information! Ais Give the Gift of Life Breastfeed!http://www.lactivist.com

Posted November 18, 2001 · November 18, 2001

.. My nephew's ear cannals continue to narrow from skin. Does this happen with any of you.

my son had to have this done over a few times...

once he swam in a lake and he had infections for a year, so there was so much scar tissue it had to be redone..

once the canals closed up (stenosis) so that had to be redone..

he threw away the behind-the-ear hearing aid when he was 7. never needed it again, (except when he needed to redo the surgery!)

doing it again is no big deal.

its usually one day in the hospital and a follow up visit in a week.

he did it one more time when he was 23 and its been great for the last 4 years.

none of us have any regrets about any of this.. dr j explained to us: some kids have a little more luck with this than others...

but i feel we ve had more luck than anyone!

jack

Posted November 19, 2001 · November 19, 2001

Thanks for the response, Jack. Does your son use any hearing aid at all now? Kathleen

Posted November 20, 2001 · November 20, 2001

Thanks for the response, Jack. Does your son use any hearing aid at all now? Kathleen

nope not for the last 20 years!

Posted March 27, 2002 · March 27, 2002

Thanks Autumn. Our stories do sound alike. It's amazing that only a couple

of months ago I left the hospital with our new baby blaming myself for having

a cafe mocha when I was pregnant. (I was afraid to tell my husband that I had

coffee, thinking it was all my fault) You would think the hospital staff

would give some answers/guidance/counseling when you deliver a baby with a

birth defect.

Posted March 27, 2002 · March 27, 2002

Hi Lou and ,

My son is 3 yrs old with bi-lateral microtia (type 1 or 2). He has

bi-lateral stenosis of his ear canals and wears a bone conduction hearing

aid as the stenosis causes him to have a 40dB conductive hearing loss.

Your experiences are not too unusual in that many doctors don't seem to have

a clue about microtia/atresia. We were given no info until was 3

months old! And only then because we were referred to an excellent pediatric

ENT in the Houston medical center. And no hearing aid until 2 years based on

a bad audiologist. That is a long story! Since your son is unilateral

hopefully he has a better chance of having normal hearing in the unaffected

side and won't require an aid. Both sides should be tested.

We just consulted with Dr. J and he does the ear canal surgery at age 5 in

bi-lateral children, 6 and older in unilateral. He makes no distinction

between bi- and uni lateral kids in terms of needing ear canal surgery as he

feels the benefits of binaural hearing, sound localization etc are worth the

surgery. He is nearing retiring age and I have the same concerns as you

about that. I hope he has a good replacement if he retires. Otherwise I have

considered Dr. De La Cruz in California (House Ear Institute) for the

atresia surgery. We plan on doing his ear canals at 5 in order to try and

free him from his bone conduction hearing aid as soon as possible. Children

with normal hearing do not have this pressure and can wait as long as they

want. There is a risk with stenosis of cholesteatoma in older children and

adults, and anyone with stenosis should be checked for this.

Interestingly did have blocked tear ducts also. My theory is that it's

like his " tubes " formed very small. i.e. small ear canals, small tear ducts.

He also seems to have a small airway as he gets severe croup easily.

had a bi-lateral nasolacrimal probe done by an opthalmologist at about

16mths. It required anesthesia and was very quick, maybe 10 mins. He has

been fine since with no tearing of his eyes or infection requiring

antibiotic drops. I would recommend it as the teary, goopy eyes were

annoying. Interestingly also, his R eye was much more obstructed, and that

is his more affected ear.

You sound very informed and I'm sure you will make good decisions for your

son. Just search out information and follow your " mommy instincts " . Good

luck!

Sally and

RE: New Member

> > Hi Everyone!

> > I'm so glad that I found you all.

> > Our son is 5 months old and has unilateral (right ear)

> > atresia/microtia (looks like type 3 to me)and he has 2 small skin

> > tags. Actually, I have made this diagnosis on my own from researching

> > the internet. Our peditrician didn't tell us anything in the hospital

> > when he was born. Nice huh? We have since switched doctors and I'm

> > satisfied with our new one so far. She ordered a renal ultrasound

> > and his kidneys are fine. Next week we are taking him for an ABR

> > test at Children's Memorial. (His left ear passed the hearing test

> > in the hospital when he was born) I'm a little nervous about the ABR

> > since they will need to sedate him and he cannot eat 6 hours prior.

> > How do you do that with a 5 month old?

>

> When we had the ABR with , they did sedate him, but there was no food

> restriction. In fact my wife tried to breat feed him to get him to go to

> sleep quicker.

>

> They gave him a couple of droppers full of some orange liquid (I don't

> remember what it was called), and about 10 minutes later, he was fast

asleep

> (although he did scream when we tried to give him the liquid, he didn't

like

> the taste too much)

>

> I know of others on this list, that had an ABR with no sedation at all.

As

> long as is asleep, and stays asleep for the test, that's all that

> matters. Whether you need help getting and keeping him asleep is the

issue.

>

> I would double check about the food thing, and ask what kind of sedation

> they will be using.

>

> > We are still looking for good ENT doctor in our area. has

> > had one ear infection in his good ear so far and he seems to tug on

> > it quite often like there is alot of wax or something. Anyone else

> > have experience with this?

>

> OUr second son (no microtia or atresia) gets excess build up of wax, and

our

> family Dr has cleaned it out a couple of times (squirts a warm liquid into

> the ear to melt the wax, and drains it. Doesn't seem to bother our son

too

> much). He has had a couple of ear infections, but they haven't been real

> bad. Just enough that he needed ear drops to reduce the redness and

slight

> swelling in the ear. A couple of days with the drops and he is as good as

> new.

>

> > He also has blocked tear ducts, any

> > relation to atresia/microtia?

>

> I haven't heard about this being related to Microtia/Atresia...anyone

else?

>

> > One last question, when do you make an

> > appointment for consultation with Dr. J and Dr. Brent? I sure hope

> > they are around in 6, 7, 8 years!

>

> I can't help you here. Although the age for the surgeries seems to vary

> depending on the Dr. I have heard as young as 2 or 3 years old (which I

> think is too young), and lately I have heard that you should wait until

they

> are 10 years old. I am sure others on this list will help ot here.

>

> > Lou

>

> Glad to have you on board Lou!!

>

> Steve

>

Posted March 28, 2002 · March 28, 2002

<< I have

considered Dr. De La Cruz in California (House Ear Institute) for the

atresia surgery. >>

I'm hearing more and more about him. He is local for me so I should set up a

consultation. Just by chance (or maybe not) my husband (a graphic designer)

was given a job to do for House Ear Institute the week Brayden was born.

Autumn

Posted March 28, 2002 · March 28, 2002

<< Thanks Autumn. Our stories do sound alike. It's amazing that only a

couple

of months ago I left the hospital with our new baby blaming myself for having

a cafe mocha when I was pregnant. (I was afraid to tell my husband that I had

coffee, thinking it was all my fault) You would think the hospital staff

would give some answers/guidance/counseling when you deliver a baby with a

birth defect. >>

Lou, Yes our stories are alike and unfortunately like many others. I

too was very surprised at the lack of guidance, and help I received at the

hospital and after. I did the same as you and blamed myself. I did

everything I was supposed to do for a healthy pregnancy and child, but still

I thought it MUST be my fault. Brayden is almost 18 months old and I still

sometimes wonder what if I didn't have that cola, etc. We can't blame

ourselves. It wasn't anything we did wrong or otherwise, but I know it is

still hard. Feel free to talk about the emotional sides of having a new baby

with microtia. There are many parents here that have been through it. We

are all different but I know talking about it helped me. Feel free to email

me direct also.

Take Care

Autumn

Posted October 16, 2002 · October 16, 2002

Welcome! Glad you found us. You will get all the information you need from

this group. I know I did. I was in a very similiar situation with my doctor

when I joined. I would say I have learned 99% of what I know about Microtia

from this group, in one way or another. My son is 2 and also has

unilateral stage III Microtia/Atresia. He's doing great!

You are doing the right thing by seeing the Craniofacial team. They should be

able to answer a bit more than your regular doctor has. If you have already

been in contact with Dr. Brent you are ahead of the game.

Welcome

Autumn (mommy to Brayden)

Posted October 17, 2002 · October 17, 2002

Welcome!

Christie and (8 months, bilateral microtia/left atresia/right stenosis)

-----Original Message-----From: yenavarro Sent: Wednesday, October 16, 2002 10:32 AMTo: AtresiaMicrotia Subject: New MemberI am new to the group and very excited about all that I have found on your group page. My son is 14months and was born with grade iii unilateral Microtia on the right side, and a slight hemifacial microsomia. I am so interested in learning all that I can about Microtia, so I know what to expect for my son, and his options. Currently I am not too happy with the Dr. that we have been visiting. He is very nice, but I feel so rushed and that he is too busy to answer my questions. Honestly all of the information that I have received has been online. My son has had just some standard check ups and hearing test so far. As well a tube has been placed in the good ear, due to frequent infections in his first 6 months since birth.We are due to go to a visit with the Cranofacial team in February, But I am not sure what to expect when I make my visits, nor what questions to ask. So I would love to keep in touch with others who have and are going through same situations, to help me..

Posted February 18, 2003 · February 18, 2003

Welcome Patty & Dave!

You have found the best group of people here. I just recently joined,

but my son is 4 months.

It took me a while to come to terms with my sons condition and do the

" research " to get an idea of what I needed to do for him. Your heading

in the right direction, having already been to the Children's Hospital,

an ENT, and the plastic surgeon - I'm just now working on getting these

done. You'll get a lot of advice from parents who have been there, done

that. Anytime you have a question, just send an e-mail, and you'll be

surprised how everyone here is ready to lend a hand.

a

Mother of , 4 months, right unilateral microtia/atresia grade II,

HFM

On Tue, 18 Feb 2003 23:54:45 -0000 " dpm162003 pdmat@...> "

pdmat@...> writes:

> Patty and I(Dave) are the proud parents of a beautiful baby girl

> named Marla, she has a 3 1/2 yr old sister . Marla has right

> side stage 3 microtia/atresia. Needless to say how we intially

> felt,

> I'm sure you have all been there. I've been reading this groups

> information since the night I found out which is about a mounth ago

>

> (every night), and joined a few days ago, thanks Steve. We live in

>

> Michigan and were refered to the Childrens Hospital where we've seen

>

> the E.N.T. and the plastic surgeon, I was not impressed with the

> pictures of the plastic surgeon's work, what so ever. This journey

> for the reconstruction of my daughter's ear and possible middle ear

>

> surgery has made me feel somewhat relieved by all the wisdom this

> group has to offer. I want the best for Marla which probably means

>

> traveling out of state for ear reconstruction. I'm not sure if Dr.

> B

> will keep working forever, but if he does retire, I'll settle for

> second best. I forgot if Dr. Eavey or Dr. Epley are plastic

> surgeons

> but all information and support is welcome. Once again, thank all

> of

> you for easing my fears as now I have people who I can talk to. All

>

> information is welcome. Sincerely, Dave

>

Posted February 18, 2003 · February 18, 2003

Welcome,

In the few days that I have been reading this group's postings, I have learned more than any doctor we have seen has told us. This is a wonderful group here and very willing to help.

Carol

Posted February 18, 2003 · February 18, 2003

Patty and I(Dave) are the proud parents of a beautiful baby girl

named Marla, she has a 3 1/2 yr old sister . Marla has right

side stage 3 microtia/atresia. Needless to say how we intially felt,

I'm sure you have all been there. I've been reading this groups

information since the night I found out which is about a mounth ago

(every night), and joined a few days ago, thanks Steve. We live in

Michigan and were refered to the Childrens Hospital where we've seen

the E.N.T. and the plastic surgeon, I was not impressed with the

pictures of the plastic surgeon's work, what so ever. This journey

for the reconstruction of my daughter's ear and possible middle ear

surgery has made me feel somewhat relieved by all the wisdom this

group has to offer. I want the best for Marla which probably means

traveling out of state for ear reconstruction. I'm not sure if Dr. B

will keep working forever, but if he does retire, I'll settle for

second best. I forgot if Dr. Eavey or Dr. Epley are plastic surgeons

but all information and support is welcome. Once again, thank all of

you for easing my fears as now I have people who I can talk to. All

information is welcome. Sincerely, Dave

Posted February 18, 2003 · February 18, 2003

Opps! sorry for the spelling Dr. Eppley

Posted February 18, 2003 · February 18, 2003

Patty and Dave,

Since your daughter is 3 1/2, she is not yet ready for any type of ear

reconstruction for several years. What is most relevant at the present time is

the length of the jaw on the affected side. If severe, she may be a candidate

for mandibular lengthening (distraction) at this stage.

Dr Eppley

Associate Professor of Plastic Surgery

Craniofacial Program

Indiana University School of Medicine

Indianapolis, Indiana