Conference moira::parenting

    
    My son Patrick, now 14 months, has a profound bilateral sensorineural
    hearing loss. It was present at birth and discovered at the age of 9
    months. Both ears are practically the same insofar as the loss is
    concerned. We do not know what caused the loss but we do know it's not
    related to the bone structure of the skull or middle ear. We are
    persuing genetic testing to see if this was inherited. We may not ever
    know what caused it.
    
    We started early intervention at the age of 9.5 months. We have been
    using sign language with him since he was 10 months old. His vocabulary
    has grown enormously. He understands twenty signs, and signs twelve of
    them on his own, to communicate. They are things like light, bye-bye,
    hot, up, down, tree, mommy, daddy, Tara (our dog), eat, come here, TV,
    microwave, fan, nice, hello, shoes, all done, car, duck, and bird.
    Lately he has been picking up new signs about 3-4 a week.
    
    He has been wearing hearing aids (aided) since age 10 months as well,
    and we speak while signing to him. His vocalization has gone from 
    reflexive (outburst) to the phonetic babbling that is the beginning of
    speech. Without his aids, his threshold is between 70-90dB depending
    on frequency. Aided his threshold is 25-40dB. We have very high hopes
    that Patrick will speak.
    
    Otherwise he's a happy healthy little 14 month old. He is comfortable
    communicating manually in his world. It takes a tremendous amount of
    time, hard work, and dedication from all the professionals and family
    members, but it's worth it.
    
    I'm happy to talk with anyone concerning hearing loss and children,
    either here or off line.
    
    Chris deHahn
    
    

    
    Chris,
    
    I'm taking a sign language course right now.  Along with learning sign
    there is also much instruction about deafness and hearing loss 
    (there is so much more to deafness and hearing loss than I ever imagined!) 
    we had a couple very interesting books to read.  One is called "A Loss for
    Words" and the other is "Deaf Like Me".  Deaf Like Me is about hearing 
    parents of a deaf child and "A Loss for Words" is about a hearing child of
    deaf parents.  Very interesting reading.  I'd recommend them to anyone.
    (Although "Deaf like me" is sort of slow reading but still
    interesting.)
    
     The other thing they teach is about "language".  How language for
    the deaf is very different from language for the hearing.  It's 
    something that existing inside a person and the words are only symbols.
    I'm enjoying this class very much and I hope to pursue this interest.
    
    Are you taking/do you know sign language? (I don't mean to presume that
    that is the route your family is taking, I realize there are different
    schools of thought on this).
    
    Thanks for your note.
    

    
    You can say that again (different schools of thought). Totally opposite
    poles, at times.
    
    We are at this time using a total communcation approach, both speech
    and sign. I don't sign pure ASL it's more pidgin sign (and not very
    well, at that). Still, I have been able to communicate with the deaf
    I've encountered, most importantly, my son.
    
    I put a note in the last version of this file on deaf educational
    philosophy. I'll try and put some of it in this version.
    
    Good luck in sign class! If you're ever in SHR and want to practice at
    lunchtime, look me up.
    
    Chris
    

    
    Patrick signed 'Daddy' last Thursday. On Friday he signed 'Mommy'. He
    had known their meanings for quite a while now when we signed them but
    this was his first time signing them himself. He signs 'Grammy' and
    'Grampy', too, which is significant because they are essesntially the
    same sign but the elder generation is a repetition of the same sign.
    He signs them exactly as they should be done. In fact, all of his signs 
    are much better defined now. The 'baby signs' have been replaced by the
    proper 'pronunciation'. As of yesterday he's up to 35 signs that he signs 
    himself, and is learning new ones at about 3-5 a week.
    
    Patrick has also started to form sentences with the signs. He'll sign
    'bye-bye', 'car', then blast over to the door that leads to the garage
    and sign 'open'. He saw our dog lay down for a nap yesterday and he
    signed 'Tara' and 'sleep' in succession.
    
    I don't know if he's lipreading or responding to sound, but there are a
    few words that he'll respond to without me signing them. His vocalizing
    is still mostly reflexive but he still babbles a lot. While speech is 
    still a long ways away, we have little trouble communicating with our 
    son using sign language.
    
    Chris
    

    Chris,
    
    What a great milestone - I can only try to imagine what it felt
    like to see him sign Daddy and Mommy. Thanks for your notes; I have
    learned a lot.
    
    Lucy
    
    PS. Have you read the book "Hearing Voices"? 
    

    
    Thanks for the kind words. I haven't seen that book you mentioned but
    I'll put it on my list. I'm just about finished with 'Deaf Like Me'.
    There were times when I wanted to throw it in the trash. Fortunately it
    gets better at the end.
    
    I spoke with the audiologist this morning during Early Intervention.
    With the progress Patrick has been making lately we will start working
    with translating sign to voice immediately. Hopefully, by the end of
    this year he will have a word or two to say.
    
    Chris
    

    Sorry, I screwed up the book title - it's "Seeing Voices" -
    which makes sense, because it's all about sign.
    
    The author is Oliver Sachs.
    
    Lucy

    
    
    Chris
    
    I know what you mean about Deaf Like Me.  Like I said, it was Slooooow
    reading at times!  "A Loss for Words" was much better.  You might 
    enjoy it.  
    
    Well I finished my first sign language course, I going to take the
    next one in the fall.  I really like it alot!  
    
    I can't believe how quickly those little minds can learn.  3-5 signs a
    week is building to quite a vocabulary!  Kids are  amazing.
    
    take care,
    
    Nancy
    

Here's some background......Maggie is 4 1/2;  

She has never shown any signs of hearing loss until about 3 months ago.  

She speaks very well, better than many children of 6 or 7.

She does not need to have the TV turned up any louder than normal, and
she does not seem to have any problems hearing us when we read to her.

But, lately, she has been saying, "What?" every time we tell her something
during the course of normal conversation.  Yesterday, she and I spent most of 
the day together and I had to repeat everything I said three or four times.  
Very frustrating.

About two months ago, at a visit to the pedi, we asked about it, and
she said to wait until Maggie's then-current ear infection cleared up before
running any tests.  She also said that Maggie is just now old enough to 
be tested (knowing right from left, etc.).

I am beginning to wonder if it is not physical, but mental.......

Here are my questions:

	1.  Can Maggie's chronic ear infections have caused permanent
	damage to her hearing?  (She has them all winter long every year; 
	thank goodness for Ceclor and $3.50 copays!)

	2.  Can this be a game on Maggie's part?  In other words, is she
	just asking us to repeat stuff for the heck of it?

	3.  Can she be so distracted that she really doesn't hear us?  Her 
	mind is always going a mile-a-minute.

	4.  Anyone else have this experience or have any insight to this
	problem???

Frank

    Frank, the voice of experience speaks here....
    
    I actually have had AJ's hearing tested several times, for the very
    reasons you mentioned.  In all except two of them, his hearing was
    normal, he was in fact ignoring us!  We were advised that part of the
    problem *could have* been his ADHD, which at that point had not been
    diagnosed.  He was not *stopping long enough* to absorb what we were
    saying, and processing it in his mind.
    
    Only a good complete hearing test, done in a sound proof booth by a
    professional will be able to tell the truth.  Also an "audiograph",
    where the actual tracing of how much the child is hearing will give a
    very clear picture of whether there is a real hearing loss.
    
    My sister inlaw tried a unscientific test on her kids a couple times. 
    She would walk up behind the child, and speak in a normal or lower tone
    a phrase guaranteed to catch attention.  She said things like "Katelyn,
    do you want a lolipop" (you get the idea I'm sure).  Of course she got
    her attention, there was nothing wrong with this child's hearing.
    
    AJ has, from time to time, gone through a "knee jerk" reaction of
    saying "what" a lot.  As I start to repeat it the second or third time,
    I stop him and ask him point blank, "did you hear what I said to you?"
    Usually he did, and the what is just sort of a reaction or stall for
    more time for some reason.  It may be the age, since it started at
    about 4-1/2 with AJ too.
    
    Have her tested, to eliminate any problem with her hearing, and then
    deal with it as a discipline problem if the hearing is normal.
    
    Contact me again, if you want to chat further.
    Lyn

    Yes, an ear infection can cause hearing damage, and it can cause
    exactly the sort of problem you describe.   I know.  I've got it. 
    
    It's only a very tiny amount of damage, a bit of loss of acuity in
    the middle of the range of normal sound.   Unfortunately it's in
    the range of normal speech too, especially for higher-pitched
    voices, and I sometimes have a great deal of difficulty making out
    what words people are saying.  If I'm distracted at all, if the
    person's not looking at me, if there's a lot of background noise,
    all I hear is mush sometimes.  I have to ask people to repeat --
    and people are *not* generally courteous about repeating
    something.  The people who know I've got this problem sometimes
    act the worst, like they think this is something I could control
    if I paid more attention.  
    
    However, that doesn't mean it's your daughter's problem.  Yes,
    have her hearing checked, but don't be surprised either way.  
    
    Another thing that can cause this kind of attention problem is
    epilepsy.  If a child is having a certain kind of petit mal that
    causes "microseizures" (there can be literally dozens a second),
    it can cause problems with the ability to concentrate -- the child
    does things like hear the beginning and the end of a word, but not
    the middle.  
    
    --bonnie

    
    
    I came back from a trade show road trip, gone a week, to Patrick
    walking for the first time, and signing most of his signs in pairs.
    Amazing what these little minds can do in a short period of time. My
    wife, of course, attributes it to me being out of the house 8^).
    If we cover or mouths and make sounds, like ba-ba-ba he will imitate
    them, so he knows how to voice and he hears himself.
    
    My mother in law slammed a door by accident the other day, and Patrick,
    in another room, jumped. It was the first time I've seen him startle.
    This is more proof that he is learning to use what little hearing he
    has.
    
    Re: .8
    
    Glad you liked the courses. We get our instruction in the home from the
    state developmentalist but will start classes again in the fall. We
    have started to learn some ASL and signed English, and all are
    distinctly different.
    
    Re: .9
    
    I would have your child tested as soon as the tympanogram shows that
    the ears are clear. I always felt that Patrick was ignoring me, since
    sometimes he would hear me, and sometimes not. A good audiologist will
    make the testing fun for the child, so you may want to play this up a
    bit. My thoughts are with you...
    
    Chris

    To Frank,
    
    My son is also 4.5 and he has been saying "What?" often enough
    for us to get concerned. The pediatrician said two things are
    at work in our case: first, it's developmental (I guess this is
    the Ignore Your Parents stage) and second, he has an incredible
    amount of wax in both ears. He's scheduled for a de-waxing
    in a couple of weeks. I think the ped. will flush his ears out
    with water, not sure, since my husband has been taking care of
    doctor visits. 
    
    Other parents tell me their kids have done the same thing at
    the same age. My mother-in-law's test was to go in another room
    and say in a low voice, "Who wants a cookie?" and see what happens.
    
    Lucy

Thanks, everyone for the advice & suggestions.  We'll push for
a hearing test, just to be sure.


> My mother-in-law's test was to go in another room
>    and say in a low voice, "Who wants a cookie?" and see what happens.


This might not work with Maggie...........now if we said "Who wants
broccoli?" it might.........she will actually choose broccoli over
cookies (I guess she really is sick :-) )

Frank

    
    Patrick turned 1.5 years yesterday...the terrible twos have started
    already, although I believe that this is just the tip of the iceberg
    8^). Discipline is a hot topic around the deHahn household. We're
    trying to teach him the concept of IF-THEN-ELSE but it's difficult.
    He will deliberately do something he knows is wrong and then stand
    there shaking his head 'no'...I guess he's telling us he knows right
    from wrong. These next few months should be interesting, to say the
    least.
    
    We had a genetic screening at UMMC yesterday. It's amazing what an 
    empirical science genetics really is. We just don't know very much
    about it. They look for clues and take educated guesses. There weren't
    any in our family history. Patrick was given an examination and nothing
    striking was found. Therefore, they conclude that is must have been
    recessive genes in both Martha and myself. Congential deafness is
    caused 50% by genes and 50% by environmental factors. The chance of
    having another deaf child are one in four, since it takes both
    recessive genes to produce the defect. The bottom line is that there is
    roughly a 10% chance of us having another congenitally deaf child.
    
    Patrick's sign vocabulary is over 60 words and he signs lots of two and
    three word sentences. If he can't tell you what he wants via sign he
    will grab your pant leg and pull you over to where it is and point.
    This is wonderful because he's using different methods of
    communication.
    
    The professionals who work with him now are questioning *when* he will
    speak, not *if*. He has started to use his hearing much more. When he
    hears a sound that is foreign to him, he'll point to his ear and nod
    his head 'yes'. The latest thing was the Dustbuster (portable vacuum).
    I came home from work one day to him running up to me showing me how he
    hears it. For the last three months we have been working with the John
    Tracy Clinic, which has a correspondence course that is oral in nature
    but not 'oralist'. They send you information every 4-6 weeks and a
    lesson plan. We use what we feel is applicable and then send comments
    and questions back to them. A Director who is handling his case
    responds back to us with answers and hints on how to do our job better.
    We do things like talk to him more directly, repeat and enunciate or
    words, and imitate his voicings, which have become much more structured
    and frequent lately. He is at the point where he tells us he wants his
    hearing aids on. He tries to imitate our sounds the best he can, and we
    are doing whatever we can to encourage this. It's starting to get
    through to him. Last night he wanted a cracker before bed and I told
    him vocally, without sign, 'no'. I purposely did this with a smile on my
    face so he wouldn't infer from expression. He shook his head 'no'. We
    don't know if he was reading my lips or responding to the sound, but
    that is irrelevent. He understood what I meant without sign.
    
    Nine months after immersing him in a Total Communication method of
    Early Intervention, I am convinced that it works. It may not be the
    best environment for all of his education but for the near term it is
    exceeding our expectations.
    
    Chris
    
    
    
    

    This is great news, Chris!

I hope you will continue to give us updates.  I find his progress fascinating.


I think 60 "words" is a lot at 18 months, no matter what language they are in.


Thanks for the update,

Pat

    
    Absolutely. It is not easy or comfortable to tell the story of your
    disabled child to the thousands who read this file. I do it because
    someone will be next, who hopefully can benefit from our experience.
    Many, many people have reached out to us to help us through this, if I
    can help anyone out I'll go out of my way to do it. Thanks for the 
    kind words both here and through email.
    
    Chris
    

Patrick had his hearing tested yesterday, using play audiometry in a soundproof
booth. His hearing loss has been upgraded from profound to severe to profound.
His unaided threshold has gone up 5dB in the middle range and 10dB in the highs.
He now hears in the voice range at 65dB unaided. Aided his threshold is 20dB in
the voice range. His high frequency response jumped 25dB. Physically, nothing
has changed, he has learned to use his residual hearing more effectively.
His aided response is squarely in the oral range. He now has the tools. We have
to provide an environment conducive to learning orally, and he has to want to
do it.

Chris

    Good luck Chris.  I wish Patrick lots of progress.
    
    Laura
    

Hooray!  Sounds great, Chris!  This is one lucky kid (to have such supportive
parents!).

   Carol

    Hi Chris,
    
    Reading about Patrick in .19 takes me back...  I think I started this
    note string back in the last rev of PARENTING, almost 2 years ago.
    
    I don't have a current audiogram here at work but I do have a copy of 
    Devons' original one.  I have just been sitting here remembering. Devon
    is currently moderate/severe in both ears, about 60-70 db.  After the
    sudden loss of almost all of his hearing, I can *really* relate to the
    feelings you feel at a 5 to 10 db increase.
    
    It can be rough and very hard at times.  But given the tools and
    resources to make use of them things happen!!!
    
    Say hi to Patrick for me.
    
    Cheers,
    Bob

    My daughter Alicia (4) recently had a hearing test at her daycare. 
    According to the test she failed the tympanometry (sp?) tests in both
    of her ears.  I was told to make an appointment with my physician to
    get more tests/info.
    
    The description of the causes of her failing this test were very vague.
    Has anyone had any experience with this test?
    
    I have an appointment scheduled for next week but would like as much
    info as possible.
    
    Thanks, Angie

There's no reason to be afraid of a tympanogram. It's a very simple test. A puff
of air is used to check the movement of the eardrum. If the ear is clear of
fluid, wax, etc, the eardrum will flex in and out with the air puff. If there
is fluid behind the eardrum, or it is occluded with wax, it will be more rigid
and will not flex. This lack of flexibility affects hearing.

The tympanogram is a prerequisite to a hearing test. The results will be
inaccurate if the tympanogram shows a lack of flexibility or fluid in the
ear.

In general it's a painless test, unless the audiologist tries to test a severely
infected ear. A good audiologist will take a look inside the ear canal before
doing the tympanogram.

Now for my question, what is a daycare doing testing a child's hearing? Do they
have a certified audiologist or pediatrician on staff?

Chris

    Hi Chris,
    
    Thanks for your quick reply.  I feel much better.
    
    The daycare I take my girls to is run by a local college and
    participates in a program called Head Start.  This program is an
    excellent program offered to low income/single parent families. I am
    not sure if it is a state or federally funded program. The daycare also 
    accepts private clients and lets them participate in the same
    activities.  I find it well worth the money.  As part of Head Start 
    the children are offered many different health screenings run by our 
    county health department.  They offer speech testing/therapy, vision 
    testing, physical fitness and so on.  Some of the other perks are
    hot breakfast, hot lunch, and a snack (all healthly, balanced meals of
    course).
    
    I have always been impressed the quality of the program.
    
    I think I will move up Alicia's appoint till this week since she might
    have an ear infection. 
    
    Thanks alot.
    
    Angie  

Wow! What a great program. You're very fortunate to have it available in your
area.

Good luck with the hearing tests,

Chris

Patrick spoke his first word last night, HOME. We have been working hard the 
last few months with his voice, signing concepts he knows well with special 
emphasis on using his voice. There are a few constructs that he will voice when
encouraged to do so in the right context, but that's not really speech. We had
just come home from the mall. Usually, as we go down the driveway, we sign 'home'
(we always speak when we sign). This time he beat us to it, signing and speaking
'home', with no prompting from us. I was so excited I could hardly sleep last 
night.

We stopped counting his sign vocabulary at 125 several months ago. He's probably
up around 175-200 by now. For all practical purposes he's fluent with sign as
his primary mode of communication. It is interesting that while we teach him
sign in English word order, he signs are ASL-like (abbreviated, not in order).
It is easier for him to sign this way, and he still gets his message across.
If he attends a total communication school, this will be corrected in English
class so that his grammar is proper. He may choose to sign ASL later in life
as well. When we go to sign class he is with a group of about 15 kids, some
hearing and some hearing impaired, and almost all of them sign. It's neat to
watch him sign with other children, communicating with his peers.

He has still had recurrent fluid buildup in both ears with mild ear infections.
We catch them early enough so that they don't turn into a full blown ear 
infection. On top of that, he has a terrible wax problem in both ears. The wax 
clogs the ear molds and effectively shuts off the hearing aid. He has the bad 
luck of having long, narrow, curved ear canals which hold the wax in. We try and
stay on top of it with Debrox but every now and then he has to have it cleaned 
out by his pediatrician. Hopefully he will grow out of this.

Through all of this, he not only tolerates wearing his hearing aids during his
waking hours, he actually asks for them and wants them on. There are times
when his ears are bothering him and he removes them, and we don't discourage
this. He will ge mad if you take them off for no reason and tell you he wants
them back on. This shows that he is processing the environmental sounds and
wants to hear them as much as possible. Still, he's deep in the throes of the
terrible twos and can be totally uncooperative at times. He knows that taking
his hearing aids off during a tantrum gets me very agitated. I wait until he's
through with his fit and then they go back in.

More and more often, he tells us he is hearing sounds by voicing and pointing to
his ear.  We were at the mall recently, and they had a marching band marching 
through the aisles, which was VERY loud. While all the other children were
covering their ears, there was Patrick up on my shoulders, smiling and pointing
to his ear. 

All in all, he's meeting or exceeding our expectations at 21 months. The sign 
language came easy for him, and he uses it well. Teaching him to speak will be
much more difficult.

Chris

re: .27

Thanks for sharing this with us.  You and Patrick are very fortunate to have 
each other.

Clay

<                       -< Patrick speaks his first word >-

Congratulations!!!!!!

<Still, he's deep in the throes of the
<terrible twos and can be totally uncooperative at times. He knows that taking
<his hearing aids off during a tantrum gets me very agitated. I wait until he's
<through with his fit and then they go back in.

Smart kid.  And smart dad.  :-)

Thanks for the update, Chris!!

      Carol

    That's GREAT!!!!! NEWS!
    
    Bob

    :-) on Patrick taking the aids out!
    
    
    Is this like the time I was about to do some serious verbal jumping up
    and down on Devon about something or other???
    
    I walked into his room to find him sitting at his desk (back to the
    door) doing homework ... with both aids turned off!  I backed out of
    the room and let him turn them back on himself before we has our
    discussion.  There is something to be said for being able to just shut
    the world out so that you can get something done.
    
    Cheers,
    Bob

My, how the time has flown since I last posted a reply in this note. Patrick
had his second birthday on February 12th, and what a difference compared to
the last one. He had a blast! Tore the place to shreds! 8^)

Patrick continues to test well in the sound booth. His low frequency hearing
has been upgraded to moderate, so the audiologist changed his hearing aids
to respond less to low frequencies and more to the speech range. We noticed
a difference in his response to environmental sounds, however it's too early 
for him to respond to speech without visual clues. Even though he's 2 years
old, he was aided at 1 year, so his hearing development is closer to a one
year old than a two year old. Still, he is ahead of everyone's expectations. 

Patrick voices while signing just about all the time his hearing aids are on.
His lipreading skills are improving, and imitates your mouth movements when
trying to voice a new word. He will speak several words now, some very well,
others just an abstract; words like home, on, off, up, down, mama, Tara (our
dog's name), hot, open, close. His Early Intervention therapy is now 
exclusively geared towards sound recognition and speech. His sign vocabulary 
is beyond 250, and he is very comfortable and self confident communicating 
with sign. I'm still convinced it was the right choice for him at this age.

We have spent the last few months attending as many seminars and conferences 
on education for the hearing impaired and special education law. The one thing
I've been made very aware of, is that we are extremely lucky to have the
professionals, as well as a strong parents group, in our area. There are
families out there that have no support at all, and are getting put over a
barrel by their town and the state. I intend to be a very strong advocate for
my child.

Starting this month, we will be visiting various programs around the state 
for Patrick's preschool education, which will begin at age three when his
Early Intervention services cease. We plan on seeing one program a month
for the next several months. We will start his IEP process at age 2 1/2.
Up to this point, it's been very easy. Everything has fallen into place.
He's getting the services he needs, and is responding beyond our expectations.
When September rolls around, the real process of defining his education
starts. It scares the hell out of me.

Chris

	Thank you for the update, Chris!

	I found your comment on lipreading interesting.  My nine month
	old daughter will always say Ba-Ba-Ba when I try to teach her
	Ma-Ma-Ma (Ok, so I'm getting tired of hearing Da da...!).  Last
	night I told my husband that it's like she's reading my lips -
	Ma-ma and Ba-ba look quite similar.

	I'm amazed at how anyone reads lips, let alone a small child.

	Karen

If she responds to Ma-ma-ma with Ba-ba-ba then she may have made the
connection. Sghe's a bit young for this, but try and cover your mouth when
reciting Ma-ma-ma and she how she responds.

Chris

          <<< WILLEE::PRODUCTS$:[NOTES$LIBRARY]HEARING_LOSS.NOTE;5 >>>
               -< Welcome to the HEARING_LOSS notes conference >-
================================================================================
Note 186.12              Sudden hearing loss in a child                 12 of 12
OTOU01::FRASER "HURRY UP!!! ... and wait ..."        37 lines  30-MAR-1993 07:59
                          -< it's happening again... >-
--------------------------------------------------------------------------------
    Hi,

    I just read through this note string again for the first time in a long
    time.  I've got tears in my eyes...

    It's starting again.

    Not the total overnight loss like last time.  What is happening is an
    over night loss at the high end on his left ear only.  And it comes
    back suddenly on its own later in the day.

    This has been going on for about a week now but we did not clue in on
    what was happening until yesterday morning.  Devon got a new aid last
    Monday.  We just thought the thing was a little intermittent.  Even
    had it check out once - nothing found wrong with it...  Yesterday
    morning Viv gave him the old aid to use in place of the new one, and
    guess what?  Same problem...

    Yesterday afternoon was back to CHEO and Dr. B.  One long hearing test
    later (everything looks "fine"), Dr. B feels we are dealing with the
    same thing that happened two and a half years ago, only a mild case of
    it (so far...).  They went digging through all of Devon's file to trace
    the history of his left ear to see if there was anything noticeable.
    Guess what.  He has been steadily loosing on the top end of his left
    ear - always within the range of error from the previous test, but still
    going down.

    So what now?  To start with, everyone is being put "on alert". i.e. the
    next time this happens, off to CHEO, jump the queue, pull in Dr. B
    (from what ever he is doing - his orders!), and then run Devon through
    the mill again...  At present no blood work, no predizone(sp?). And we
    are booked back in next week.

    and so we wait...
    b.

    
    

I met Patrick deHahn on Sunday. He is quite a boy!!

His mother is my father's godchild and my second cousin.

His grandparents and his mother were at my father's 80th birthday
party. Chris was home, sick with the flu.

Patrick was playing with his cousins, discovering things, 
asking questions, having a great time. He is truly loved 
and I believe that makes a difference in his development. 

--Phil

<       <<< Note 58.35 by OTOU01::FRASER "HURRY UP!!! ... and wait ..." >>>
<                          -< it's happening again... >-

Bob, I'm sorry.

    Carol  :-(

It's been a while since the last post so here's an update on Patrick, now
2.5 yrs. old and showing it too well 8^). We had a major setback several
months ago. The ear infections kept recurring along with fluid buildup.
We had tried every antibotic approved for young children and all were
ineffective at this point. His hearing had deteriorated significantly and 
his vocal production had been reduced to ba-ba-ba. We had no other choice
but to put in the tubes. Two weeks after they were installed we started
to notice the difference in his sound recognition and vocal production.
It took about a month for him to catch up, so we lost a few months work
but we're back on track.

Patrick now sees a speech pathologist once a week, a grad student at 
Worcester State. She does not know sign language very well, so it was
tough in the beginning. Patrick was frustrated working with her, and
not much was accomplished at first. He had slipped so much from the
fluid buildup, and now we were struggling. I now see this as a great
learning experience for him, as he must work extra hard with her to use 
all of his other modes of communication besides sign. At 2.5 he's a bit 
young for this but the audiologist is sure he's ready, and after attending 
a few sessions, so am I. The direct result of this is that Patrick now says 
several words without signing. His lipreading skills are really improving as 
well. He says 'Daddy', not perfectly, but good enough to make me very 
happy 8^).

This morning, Patrick had his hearing tested. While the ear wax problem
persists, and his eardrums were partially blocked, he tested moderately
severe to severe across the range. The tubes are doing their jobs. His sound 
recognition is much better, and his sound location is outstanding. He will 
tell us he hears a sound and from where it eminates, and if he knows what it 
is, he will tell us that, too. Communication has become a high priority in 
his young life 8^)

We decided to put off looking for schools until September, which will be
six months before he turns three and when he'll start school. He will start
school the day he turns three (or the day after...he might get his birthday 
off 8^)) because that's when Early Intervention services end and the 
responsibility turns over to the school system. We don't want any gap in
services, so he will start as soon as he's eligible. Most school systems
don't want to talk to you before six months prior. So in September, the 
process will start.

We spent last weekend at the Clarke School for the Deaf in Northampton, MA, for
Family Weekend '93. 15 families attended, three from our parents group, and
a dozen from all over the east coast; New York, Pennsylvania, Ohio, and New
Jersey. The focus was 'Your Family and Your Hearing Impaired Child'. Dr.
Dale Atkins, a psychologist who spent several years at the John Tracy Clinic
working with families of hearing impaired children, spoke on the adjustments
we've had to make having a HI child in the family, and how we can make 
everyday life easier. I found it interesting, but my wife got a lot more out
of it than I did. Children's activities were provided during the seminars, but
they were geared for ages four and up. So the three fathers (dubbed the Three
Amigos) from our group entertained our young children in the morning while our
wives attended the seminars, and they got to take a nap with the children in
the afternoon. Nice deal, eh? 8^). While I was sorry I didn't get to spend
more time in the seminars, what I lost was made up for many times over by
playing with all of the HI children. The common denominator between the
children other than ours was, that they were all orally educated. They did
not sign at all. They spoke, and spoke well. Their ages ranged from 3.5 to
12, with hearing losses from moderate to profound. There were four children
that wore cochlear implants. I thought I knew a lot about all of the 
methodologies of educating HI children, but this was a big eye opener. I
was immersed in the benefits of oral education. What was particularly
interesting was communicating with these children, by voice, in the swimming
pool, when all cochlear implants and hearing aids were not being worn. It
didn't stop them from speaking at all. Most of their speech had not 
degraded when the hearing aid/CI was not being worn. What's more, the
children *and* the parents accepted us warmly and with an open mind, without
prejudice of the choices we have made with our children. It was also the
first time I had visited the Clarke School. The campus was beautiful, the
staff incredibly gifted, and their successes are undeniable. 80% of their
graduates go on to college, 15% get doctorate degrees. Clarke was an outside
possibility for Patrick, it is now one of the schools we will be visiting in
the fall. They have a weeklong session where they evaluate Patrick for his
ability to learn orally, and we get to observe the classroom and see if it's
the right thing for us. We plan on doing this sometime after October.

I can't believe there's only one month left before I have to write the letter
to our Special Education director to tell her about Patrick and inform her
that we are starting to visit schools. I have learned so much since he was
first diagnosed, and become much stronger from it. Still, I am terrified of
the task that lies ahead. Choosing his educational methodology and the school
setting is probably the most important choice we will make in his life. 

I'll post updates as we visit each school.

Thanks for listening,

Chris
 
 

    Chris,
    
    What a wonderful, inspirational story.
    
    Please keep us posted, and let us know which route you choose to go
    with for schooling.
    
    I know I'll be rooting for all of you!
    
    Lyn

Re: 589.0 (Ear wax buildup/infections/possible hearing loss)

My advice is to take your daughter to an audiologist or ENT who works with
children. Don't mess around with a school nurse. Have her looked at and her
hearing tested. It could be as simple as a cleaning or it could be more
complicated.

Chris

Last Friday, September 24, I sent the letter to the SPED Director in our
town, requesting an assessment of Patrick for special needs and a
pre-assessment conference with the TEAM chairperson. This is so we can discuss
who will be on the assessment team, what their qualifications are, and what
they think they should be looking for. We gave permission for his EI
coordinator to release all of her records on Patrick's experiences in the
Worcester Early Intervention program.

Now the clock starts ticking. The SPED Director has five days to respond to
reciept of our letter. We have to schedule the pre-assessment conference.

We start looking at schools next month, starting with the McGrath School in
Worcester. They have a collaborative program run by a deaf Director that
uses a total communication approach. Since our town does not have a program
(at this time, at least) this is probably where they will want to send us.
We know a great deal about the program through our parents group, and 
although it is most likely not a good program for Patrick, we still have to 
look at it.

The Clarke School preschool is filled for this year, so that option is out.
We had hoped that it would be an option, even if we had to transport him
ourselves, but it is not, at least for this school year. 

We will be visiting the CAPS Collaborative in Fitchburg after McGrath. They are
also a total communication program that, from what we know about the program,
is a good TC option for Patrick.  

The final option is one I hadn't considered, but might. That would be to
mainstream him into the town preschool with as much services as we can get,
with the hope of getting him into the program we want for him for the beginning
of school next year. This option would take the most scrutiny.

We applied to the Board of Selectmen, and were granted a 'deaf child' sign
for our street. Suddenly it appears that a significant number of people in
the school system know who we are. It is more than coincidence that eleven(!)
teachers and aides from our school system will be attending our sign language 
classes starting tomorrow. I'll know more about what's up once I talk to them
before the class.

At any rate, the IEP process has started, we are under the Chapter 766 timeline,
and the ball is rolling. Hopefully we will be able to move it in the direction
we want.

As an aside, Patrick's ear problems are recurring. The tubes are doing their
job, too well. The fluid draining from the middle ear is settling between the
hearing aid ear mold and his ear canal and has caused an outer ear infection. 
The middle ear infections are gone, replaced by swimmer's ear. The result is
the same, he cannot wear his hearing aids. His ENT is now suggesting adnoid
removal surgery with no promises of this helping the problem. He also wants to
remove the tubes that were just put in. We are now seeking a second opinion.
This situation has to stop, and soon.

The good news is, Patrick's lipreading skills are really improving. He learned
several new words this month which he responds to off of the lips, without 
signing. I'm admittedly biased, but this kid's ability to adapt never ceases
to amaze me. There is hope.

Chris

    What type of tests should I ask for?
    
    I received another note from her gym teacher yesterday mentioning that
    she had concerns about Jessica no listening/following directions. I
    talked to the teacher and she said that when she tells the children to
    do something, all the children but Jessica will follow the
    instructions.  The teacher will go up and ask Jessica what she is
    supposed to do, and she can tell the teacher what the instructions are,
    but she will not do it until the teacher says, OK go do it.  So the
    teacher is not sure if she is hearing/ but not able to process and do
    right away.   The teacher says that Jessica IS NOT being defiant in not
    following directions, but just seems unsure.   So, I decided since this
    is the 2nd instance of teachers mentioning a possible problem as well
    as the fact that Jessica did have an ear infection when I took her
    back to the doctor last Thursday.   
    
    So,  I'm at a loss as to what could be wrong here?  Is she really
    having problems hearing/understanding instructions?   Is she hearing/
    understanding the instructions but just ignoring them?   What type of
    intensive tests should be done to determine if this is a hearing
    problem.                                                      
    
    FYI.  For some more background...   Jessica has had ear infections
    off/on since she was a toddler.   The doctors had expressed concerns at
    about age 4 about her speach and she has been in speech therapy since
    the last part of the school year before she started kindergarten.  She
    does appear to have problems putting complete sentences together using
    the correct words which the speach teacher is helping her on.  She will
    also have Chapter One tutoring help on reading/math this year..      

Your note doesn't id where you are. However, I'll assume you are in 
Massachusetts.

Pick up the phone and call the SPED director at the school dept. Explain
the problems and issues as you've outlined them here and ask for a CORE
evaluation. This will trigger the SPED director to put together a TEAM
and ensure that all of your child's teachers are consulted. The TEAM,
including you as parents, will then determine what type of testing
should be done. You should also consult your pediatrician. 

The information you've relayed here appears to indicate more of a social
problem than a physical one. The child may well be having some self-esteem
problems due to the services she's already receiving. She may just need
some reassurance that she isn't a whole different than anyone else. The fact 
that she can repeat the teacher's instruction and once validated proceed to
carry them out would, on the surface, rule out the type of hearing damage
or processing issue you seem to fear. My impression is that we're talking 
about a 6 year old who is a little bit behind her peers and has had some
chronic ear infections. If that's the case you need to take some steps to 
reassure yourself and your daughter but you'll likely be looking back a couple
of years from now and writing something just like this to another parent.


Mike (who did survive his two out of three with chronic ear problems)

I'll differ with Mike on this one. My first move would be to have her hearing
tested by an audiologist that deals with children. There's nothing intensive
about the test, but you can be sure it's done correctly if you have the right
professional do it.

If her hearing tests ok, then I would follow Mike's advice and have her
assessed for special needs. IMO having an assessment done first is putting the
cart before the horse.

I'm also in a quandry as to why, with a history of ear infections, was she
prescribed speech therapy without a proper hearing test.

Send mail if you like, or post here.

Chris

My point was that either way you're going to need to services from the school
dept. If the information you give them leads to hearing issues those tests
can be done as part of the CORE. The real point is get yourself some professional
help.

    Before Jessica went to the speech therapist, she had gone through some
    hearing tests, and also to an ENT specialist.   I guess I could say
    that during the test times, Jessica is not always very co-operative.
    They would tell her to raise her hand when she heard the sounds and
    sometimes she would and sometimes she wouldn't.  The technicians doing
    the testing would get frustrated and not continue, so I do not believe
    that we really have had an accurate hearing test.  The ENT at the time
    didn't think that she had a problem severe enough to warrant tubes in
    her ears, even though she had been having a series of chronic ear
    problems.  He said that he was being conservative in this and that he
    didn't want to do tubes unless things got a lot worse.  So since her
    pediatrician still had a concern about Jessicas articulation of words
    at 4.5/5 years of age, I went ahead and contacted the schools special
    education where they did do an evaluation of her speach.  From this
    evaluation it was determined that she was not articulating some words
    correctly and that she had some problems with putting words together to
    form age-appropriate sentences.  So therefore, we started speech
    therapy the spring before she was to start kindergarten.  She went to
    these classes for the rest of that year and then started with them
    again in kindergarten.   Her final evaluation at the end of her
    kindergarten year said that where her articulation of words has
    improved considerably, she still needs help in the sentence structure
    area.
    
    So, we get to this year.  Three weeks into first grade and two notes
    (one from the nurse, and from the gym teacher) expressing concerns
    about Jessica maybe having a hearing problem.   Last night at parents
    night, I got a chance to talk with her teacher and asked her if she
    felt that Jessica was having a problem with hearing.  She told me that
    she wasn't sure what was going on yet.  She wasn't sure if it was a
    hearing problem or a processing (whatever that means).   So, I have a
    call into my daughters pediatrician today to request that Jessica be
    re-examined by the ENT specialist and to have a specialist test her
    hearing more in depth. Hopefully since Jessica is a little older now,
    she will be a little more co-operative and they can get an accurate
    hearing test.  Even though the school does have the equipment to test
    the hearing, I feel the need for a specialist at this time, just for my
    peace of mind.   If hearing is not the problem, then we can look at the
    "processing" problem and see what steps need to be taken at that point.
    
    
    Thanks for everyones viewpoints.   I really appreciate it.
    
    Sarah

Sarah,

It seems like your daughter's hearing tests have been less than adequate. If
your ENT wasn't successful last time, do you think they will be this time?
I would have her tested by an audiologist, not the ENT. 

Mike,

Agreed, the testing can be done as part of the assessment. It should also be
covered by health insurance.


Chris

Arrrgh!!!!

Sorry Sarah. 

Again, assuming you're in Mass.

Look, pick up the telephone today and call the SPED director. Tell him/her
that 2 teachers have expressed a concern about your child. Explain that you
would like a TEAM convened to decide if further testing and a change to 
the IEP is necessary. Explain that you have been told the problem may be
auditory or it may be processing. Let them know that you are not comfortable
with past auditory testing by the school department and may wish them
to engage an independent evaluation. 


You have rights under chapter 766. You can convene a TEAM anytime you want.
If the school balks then send them a written request. They must begin the
process within 30 days of receipt of a written request. Also make sure
you ask them to schedule a pre-assessment conference. This is your opportunity
to have input into the re-evaluation. In your case I would insist on assessments
from the speech therapist, each teacher, and an ENT specialist. 

This is all covered by the school dept under the law. 

If you have any questions please ask.

Sorry disagreement angers you, Mike. Why so testy?

Do you see my point? Unless the school department has an audiologist on staff
(unlikely), there's nothing to guarantee that the audiologist that the school
department wants to send the child to is experienced in testing children.
Another inconclusive test helps nobody. If she sends her child to a pediatric
audiologist, paid by her insurance, the tests should be done correctly. If
she finds this kind of audiologist and the school department agrees to send
her there, great. No Problem. I would not *assume* that this is what will 
happen. I've seen it *not* happen too many times.

Chris

Chris,

	The frustration (not anger) was with the lack of action on the part 
of the schools. As a school committee member I HATE to see the **** bills for
SPED services BUT the law entitles people to it. If Sarah wants a tester who
has pediatric experience she should request that and the school pays not Sarah
or Sarah's insurance. In fact, if she identifies a particular audiologist 
AHEAD OF TIME to the schools then under the independent evaluation process
that should be covered by the school. I don't like to hear about teachers
who say things like "well I haven't figured it out yet" when it affects a
child's ability to learn. If it isn't obvious then get the experts involved.

Mike

Mike,

Thanks for the clarification. I agree with you 99.5%. 

>In fact, if she identifies a particular audiologist 
>AHEAD OF TIME to the schools then under the independent evaluation process
>that should be covered by the school.

If that's how it works in Holliston, that's great. Unfortunately, that's not
how it works in every school district in MA. If the school department is
accustomed to using a certain group of professionals for outside consultation,
and the audiologist that the parent wants is not on the list, then some
school departments can be less than cooperative in approving the use of that
professional. There may be sound financial reasons for this. However, it may
not be in the best interest of the child.

I don't know of any section of 766 or '142' that requires the school department
to use whatever professionals the parents desire. If you do, I'd appreciate if 
you'd let me know. I'm sure your knowledge of 766 is at least an order of
magnitude greater than mine.

Thanks,

Chris

Chris,
	You have the right as a parent and as a TEAM member to insist on a
medical assessment by a qualified physician. If the school insists on an
auditory specialist who has no pediatric background then you are likely going
to be able to make the argument that he/she is not qualified. 

	What many parents fail to realize is that they do not have to accept
the school departments decision. They may take any part of an IEP to mediation,
to arbitration, or even to court. The most common misconception of this process
also is that it takes too long. There are finite periods of time in which
parties have to respond and in almost every case a failure to meet the deadline
results in the favor of the child. School departments will take their time and
do what they want to do unless you let them know that you understand your rights.

	In most cases the school department crumbles when you quote the preamble
of 766 - "Maximum feasible benefit"  and threaten to take your case to the state
level. 

Mike

An additional FYI for all parents of Special Needs children in Massachusetts

The Federation for Children with Special Needs publishes a Parent Manual that
is a very comprehensive guide to parents' and children's rights under both
the federal PL94-142 and Mass. Chapter 766. They also hold workshops throughout
the state. 

FCSN has offices in Boston and Westfield.

800-331-0688 in Mass. only.

Those workshops are invaluable. It's been stated in them that when you show up
to your TEAM meeting with that manual in hand, it tends to command a bit of
respect. When I attended them, I was amazed at the stories people told. They
were really getting jerked around by their school department. Most of them did
not have any local support groups, either.

Mike, I agree with you...but the burden of proof is on the parent.

I spoke with our SPED director Friday, she seems to know a bit about deaf
education. Our pre-assessment meeting is scheduled for this Wednesday. She has
already stated that our school system does not have the professionals required
to do the assessment. I am thinking of using the Early Intervention staff, as
they know Patrick well and could get the most out of him. Mike, I'd be 
interested in your thoughts on this.

Chris

Chris,
	If you need medical professionals ask the SPED director exactly what 
skills are needed. Then ask your pediatrician to give you 3 names of 
professionals with those skills. If you can present options to the TEAM their
much more likely to pick one. If you go in demanding this doctor or that doctor
then they're more likely to be as rigid as you are. 
	Using staff who know your child well is an asset. If the Early 
Intervention staff has folks who know Patrick and you're comfortable with them
then everybody makes out. 

	One more thing I've found has helped many parents of SPED kids. Take 
someone with you to TEAM meetings. If it's another SPED parent or someone who
knows the process that's fine but it isn't as crucial as just having an 
impartial party you can talk to later about how things went and when you review
the IEP can validate that it says what was agreed upon. 


Mike

>	If you need medical professionals ask the SPED director exactly what 
>skills are needed. Then ask your pediatrician to give you 3 names of 
>professionals with those skills. If you can present options to the TEAM their
>much more likely to pick one. If you go in demanding this doctor or that doctor
>then they're more likely to be as rigid as you are. 

Rigid, me? Rigid? 8^) I just want the best for my child. Thanks for your
advice. If they don't agree with using our EI staff than that's the approach
we'll take. His pedi is extremely cooperative.

>	One more thing I've found has helped many parents of SPED kids. Take 
>someone with you to TEAM meetings. If it's another SPED parent or someone who
>knows the process that's fine but it isn't as crucial as just having an 
>impartial party you can talk to later about how things went and when you review
>the IEP can validate that it says what was agreed upon. 

I agree. It's much less imposing than a tape recorder.

Chris

Today we visited our first program, at the McGrath School in Worcester. They
have a deaf education program based loosely on total communication for grades
preschool through 6th grade.

Dr. Sinkus is a late deafened adult who is the school's principal. From the
short time we spent with her, it's clear she's a real asset to the school.
There are classroooms for non SPED kids for 1st through 6th grade. The deaf
program has a preschool, which is reverse mainstreamed with 4 non HI kids to
go along with the 2 HI kids. There is a teacher of the deaf and an aide for 
the preschool. The next two levels, intermediate and secondary, are open 
classrooms which teach grades 1-2-3 and 4-5-6 respectively. Students are
grouped by ability in each subject, so that it's possible for a kid to be in
both classrooms during the day. All classes have a teacher of the deaf and an
aide or two, depending on class size. There are two audiologists on staff as 
well as three speech pathologists. All of the teachers in the deaf program 
have a Master's degree in Deaf Education, one is also deaf herself and does 
not speak.

Instructions are done in American Sign Language. Most of the teachers we 
observed did not speak while instructing. After talking with Dr. Sinkus, we
found out that while they practice total communication, they do not practice
*simultaneous* communication unless it's written into the IEP. I believe that
this is due to the large deaf population in Worcester who would want ASL as 
the only mode of instruction.

The rooms are large and bright, but are not very well treated acoustically.
That may not matter because it doesn't fit their mode of instruction. In one
session, two groups shared the same room. This would be a problem if speech
was used.

I noticed most kids wore hearing aids, but only one child in all of the 
programs wore an FM trainer. (An FM trainer is like a private radio station
that is broadcast into the child's hearing aids. The teacher wears a microphone
and a transmitter, and the students wear a reciever which plugs into their
hearing aids). Again, it may not fir their mode of instruction.

Despite all of the lack of emphasis on speech, the children who were capable
of speech spoke extremely well.

It looks like a fantastic program for children who are to be brought up in the
deaf culture or have enough hearing to be mainstreamed out early. Patrick
doesn't fit either of those catagories, so on that basis, it's not a good
program for him.

Tomorrow we meet with our SPED director.

Chris

Today we met with our SPED Director, for over an hour. My worst fears were
eradicated after this meeting, as she's a very bright educator who's very
proud of her program and its successes.

There are currently two HI children (young adults) in our schol system, both
are fully orally mainstreamed (or included, that's today's PC buzzword) into
the regular high school, one a sophomore, the other a senior. They wear FM
systems and are pulled during study hour for speech. The sophomore is ranked
#1 in her class!

The SPED Director knows quite a bit about teaching for the deaf/HI and seems
to be quite interested in Patrick. Ten minutes into the pre-assessment 
conference, and she had agreed to having Patrick's EI staff do his assessment
and to have his pediatric audiologist do his audiological evaluation. She 
felt exactly as we do, that having the professionals that work with him
regularly do the assessments will be very advantageous to him. This was the
majority of what was keeping me up at nights lately, and all that fear and
anxiety was gone. At least, for now.

After that, I felt much more comfortable with her. We shared a lot more of
Patrick's background with her, and she shared a lot of her SPED experience
with us. She's not opposed to outplacement, and will do so if the request is
reasonable. She's also very proud of her program, and does a good PR job
promoting it. We will visit the program right before the evaluation.

We decided to push the evaluation out until sometime in December, to allow us
to view more programs, to time the evaluation with the EI staff' schedule,
and to give Patrick's ears a chance to clear up a bit more. We have to decide
very soon whether to do the tube and adnoid removal surgery, as we would want
him to be healed in time for the evaluation. There is no reason why Patrick
cannot be placed on his third birthday.

All in all, she was not the uncooperative, unwieldy person I prepared myself
for. If we continue to work well together as we did in this meeting, Patrick
and his parents are going to do just fine.

The next school visit will be the CAPS Collaborative in Fitchburg.

Thanks for listening,

Chris


 

Congrats Chris!!  Let us know how the rest of it goes.

Last Friday we visited the CAPS Collaborative at the Rheingold School in 
Fitchburg, MA.

The program is billed as Total Communication (use all means available to
communicate and grow language, including sign, speech, speechreading,
gesture, cueing, etc) and fits the definition well. The preschool class
currently has 6 children, all with severe to profound hearing loss, with one 
teacher and two aides. The teacher signs in Pidgin Signed English while 
speaking during the instruction portions of the class (simultaneous
communication, or sim-com). English, science, arithmetic, speech and
more are integrated into the lessons. The class is six hours long.

We spent the morning observing the program. The class is extremely structured.
We didn't see much play oriented learning, more learning by rote and
participation, but that might have been an exception. The preschool student's
speaking ability ranged from none to very intelligible. One aide was deaf,
spoke well, and signed ASL, which IMO is a great role model for the kids.
The classroom was small, but divided up nicely into play and class areas. They
were treated for sound absorption, and were acoustically dead, which is
preferable. The teacher wore an FM trainer and every kid wore his reciever
attached to their hearing aids. The program is available from preschool to
12th grade, so if students have to change classes, they change FM frequencies 
to match with the current teacher. FM trainers are mandatory. Speech therapy 
at the preschool level is two 1/2 hour sessions per week, one on one, out of 
the classroom.

I spent about 20 minutes observing some 9 and 10 year olds in their level three
classroom while my wife observed a speech session. The teacher was still signing
and speaking (sim-com) but the students responses were completely oral. They
all spoke extremely well. I attributed this to the exposure they've had to
hearing kids.

The staff was wonderful, the classrooms appropriate, the curriculum was designed
to maximize their potential, and the committment from the administration and
from the parents is strong. So what were the drawbacks? I found the program to
be a bit long and too structured for a three year old. This, of course, can
be modified in the student's IEP, although I wonder how acceptable this program
would be to change. I am concerned in their committment to mainstreaming (or
inclusion, or whatever buzzword is popular this month). As I mentioned the 
program is available for all grades, and their mainstreaming philosophy is 
inclusion with an ASL interpreter. No other options were available. Although
this is quite a ways away for Patrick, that philosophy is a concern of mine.

If we decide on continuing a Total Communication approach with Patrick, this
will be the school he attends. I believe we can tailor it to meet his needs.
The big decision will be to continue with his current methodology, with the
primary focus on learning and language acquisition via any means available,
or to break with this and immerse him in an oral setting, taking the risk that
he's sharp enough to learn with this totally different methodology.

At the end of this month, we will be spending three days at the Clarke School
for Oral Education in Northampton, MA. Patrick will be evaluated for his
capability to learn orally, and we will observe how well the program is 
suited for him.

Chris

This past three days were spent at the Clarke School for the Deaf, Center for
Oral Education, in Northampton, Ma.

The VIP program is one where families of HI children spend several days on
campus at Clarke. We had a suite to ourselves, with a kitchenette, playroom,
two baths and several bedrooms. We would observe the school at various levels
and Patrick would be comprehensively evaluated by their staff. The schedule was
tight but we had time for just about everything we wanted to see and have done.

The preschool is in a large, acoustically good room in the basement of the
Short Center. There are nine kids in this program, staffed by two teachers,
an aide, 2 speech/language pathologists and an audiologist. Within fifteen
minutes of their arrival, all the kids have had their hearing aids removed 
and tested and have had their FM units installed and tested. Speech therapy
is given one on one for 1/2 hour every day for every HI child in the program,
pulled from the main room. The first hour is much like a Montissori program,
with designated play and discovery areas throughout the room. The kids can
choose whatever they want to do, be it independently or in a group. There's a
nice mix of language, science, and learning discovery. One hour into the
program, four hearing children arrive and the group session starts. Learning
is more participatory and structured during this phase. If a child is speaking 
to the class, he/she wears the instructor's FM transmitter so that all the kids 
can hear what he/she has to say. The learning is not strictly by rote, although
there is some of that componenent, it's more discovery and sharing. The group
session lasts for an hour. Afterwards, all the kids go outside when possible and
play for the next 45 minutes, after which the school day is over. This program,
is exactly what we were looking for in a prechool as far as learning style is
concerned. What was striking to us was, the HI kids hearing losses range from
severe (70dB) to profound (117dB), and four of them came from strong signing
backgrounds like Patrick. However, none of them signed during the class. All
of them spoke intelligibly, some better than others, some with more vocabulary 
than others, but all used their voice as their primary mode of communication
in the class. To be fair, there was some gesturing, and a lot of facial
expression used, but no formal signs. Patrick spent a half hour with the kids,
and fit right in.

During our visit Patrick was evaluated for his language development, speech
capabilities, intellegence, learning style, and hearing. He did very well for
most of it. His language is far above age appropriate, his speech was better
than expected, his IQ scores also much better than average, and his learning
style was completely appropriate for an oral education.

But there's always a but. Patrick flunked his hearing tests with flying colors.
We couldn't get any conclusive data. Even when he was participating in the test,
he tested significantly below what he's consistently tested at. There are only
two possibilities. Either Patrick checked out for the test, and refused to
cooperate to the best of his ability, or he is losing his hearing.

Needless to say, this troubles us deeply. Both scenarios are possible. He 
worked so hard while he was being tested and performed extremely well. He may
have had enough. We retested two more times with no conclusive results.  The 
problem is that the few numbers we could call somewhat reliable were not good.

Patrick will have an ABR (brainstem) test at Mass Eye and Ear on December 13th.
This test is conclusive. We have his previous results so that we can compare
them. ABR results do not vary unless his hearing is changing.

So, it was a visit of highs and lows. The bright spots were the staff, who were
just incredibly dedicated and competent. The kids in the higher grades, who
spoke, read, and wrote so well. There was no signing in the classroom, but
plenty of signing amongst the kids when out of the classroom. Some of the
preschool parents continue to sign with their kids and it has not affected
their ability to learn orally. So, contrary to what the anti-oralists say,
you do not have to drop sign completely to be educated orally. At some point 
it may become an issue, and can be dealt with at that time.

If Patrick is losing his hearing, the choice is made, he will go to Clarke.
No school has the depth of experience of dealing with kids who are losing their
hearing. If we get lucky and his hearing is stable, I'm still leaning heavily
towards sending him there. It will mean great sacrifices but from what I've
seen it's well worth it.

It's really weird. Patrick always seems to have some kind of setback around
this time of year. It all began when his hearing loss was discovered two
years ago. This year, I'm hoping for a gift.

Chris

re: .61

Thanks for sharing this with us.

>It's really weird. Patrick always seems to have some kind of setback around
>this time of year. It all began when his hearing loss was discovered two
>years ago. This year, I'm hoping for a gift.

Just an off the wall question.  Is it possible there is some kind of stress 
induced problem, either physical, emotional, or both?  A lot of kids have 
trouble during the holidays.

Clay

Clay,

Patrick is only 2 1/2, so his knowledge of the holidays is limited to the big
guy with the beard, the reindeer with the red nose, the band that marches 
through the mall, and lots of boxes with pretty paper to tear off that have 
neat toys inside. Patrick was diagnosed at nine months so stress wasn't much 
of a factor then, either. It's just coincedence that it's always been around
the holidays that bad news about Ptrick arrives.

He responded well during the first half of the first test. The numbers were
not good, at least 30dB worse than his last test. 30dB is like night and day,
a huge difference. By the end of the first test, he wasn't responding to
anything. The second test wasn't any better. It is possible that stress
affected his responses, but both audiologists deem it unlikely that he'd 
respond so badly, since he's always tested so well. They are very concerned.
So are we. However, I refuse to get all worked up about it until the 
conclusive test is done and the results are staring me in the face. 

Chris

	Chris,

	I'll be praying for Patrick, especially on the 13th.

	I had a friend that moved to Westfield to attend the Clarke
	school, and he made dramatic progress there.  His family
	moved out of state eventually, and he ended up attending a regular
	high school.

	Karen

Thanks to everyone for your good thoughts and prayers, they paid off. Patrick's 
hearing tested within the margin of error. His hearing has not deteriorated.

Chris

 

   ALL RIGHT !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

   Happy Holidays for sure !!!!!!!!

Debbi

I'd like to wish all of you who follow this note, and have sent your good
thoughts and good wishes our way, a happy and healthy holiday. 

Chris deHahn
 

Our first TEAM meeting was held last Friday after several postponements due to
weather. After all the research, advocacy classes with the OFC, studying the
Chapter 766 regulations, and the sweat and anxiety that comes from making such
important decisions, it was quite anticlimactic.

The general education plan was agreed to verbally before the meeting took
place. Patrick was observed by the town preschool psychologist, speech path
and SPED director. His reports from the Early Intervention service providers
and the in-depth analysis we had done at the Clarke School were also taken
into account. The SPED director and the preschool psychologist spent a day at
the Clarke School, observing their program and determining if they thought 
that Patrick was a candidate. 

Patrick will start attending preschool at the Clarke School for the Deaf 
in Northampton, MA in September. This was our first choice in schools and
we were willing to relocate to make this happen. My wife will be driving him
instead of putting him on a bus. She's made the committment to do this for two
years, which should give us a pretty good idea if it's the right placement.

In this first TEAM meeting we set up the diagnostic IEP which will cover his 
needed services between now and May. These services are no longer given 
because he's three years old and too old for the Early Intervention system.
In May, we'll have a second TEAM meeting at the Clarke School where we'll
work out his education plan for the summer and his first year at Clarke. 
From now until September, his aural rehabilitation that he was getting 1x/wk
for 45 minutes will be increased to 3x/wk for 45 minutes. He will also 
attend a group speech lesson with two other children, given by our town's
preschool speech pathologist, who is working closely with our audiologist that
does his aural rehab. Patrick is the only HI child in that group of three, the
other two have communication disorders. Finally, a group of four mothers whose
HI children are Patrick's age will be forming a round robin playgroup 1x/wk
to keep up the social component.

I still have to pinch myself. I can't believe that what we wanted so badly
for our child was given to us without too much fuss. We were told over
and over again by all who were involved, that the ONLY reason we got what 
we wanted, was that we did all the work, planning, and presented a logical,
rational case for this outplacement. Our town has several children with
hearing loss in their SPED preschool resource room. They could have taken
the position that they have a program for Patrick and that there was no need 
for outplacement. We came prepared, took a cooperative stance, compromised
a bit (by using the town's speech pathologist for speech work), and were 
available whenever they needed us. I think we are very lucky to have a SPED
director that was willing to visit all three of our school choices and to 
put herself in our shoes. I really feel that our town is working with us in
the true spirit of what the TEAM should be about..the maximum feasible benefit
in the least restrictive environment. For the near future, this will be the
Clarke School, preparing Patrick in an oral educational environment for the
eventual full mainstreaming into a standard classroom. I hope we can stay in
our town so that he can attend public school here.

Thank you all for your support,

Chris  

Thanks for your update.  Your story is both inspiring and encouraging.

Don't know if you've ever mentioned this -- what school system are you 
dealing with?

Clay

The school system is Millbury, Massachusetts.

Chris

    
    I'm not sure if this is a problem, but it's definitely a concern.  
    Jonathan is 7 mos old.  To me, it seems like he doesn't hear Well.  He
    definitely hears, but I am reasonably sure he's missing ranges (in
    particular my voice, but not his dad's deeper voice, and not his
    brothers' higher voices).  He has NEVER been one to startle at much of
    anything - noises that you would expect to upset him, don't bother him
    at all.  If I speak softly to him, I don't think he hears me, in
    particular from his left side.  
    
    He's ALWAYS had problems with tons of wax in his ears, he's had ear
    infections off and on since he was 2 mos old.  He just had his 6 month
    check up, and they did a "hearing test" that was a waste of time.  The
    nurse had a bunch of rattles she shook behind him, but she shook them
    SO loud it hurt my ears, and once he realized she was behind him, he
    kept turning to see her anyway.
    
    Jonathan is never soothed by me talking to him, and his giggles from
    "conversation" could more easily be explained by the facial expressions
    you have to go through to make him laugh.  Saying the same phrase with
    no facial expression brings little or no response.  With a very
    animated look, it makes him giggle.
    
    Any toys that he likes to play with make loud noise.  He shakes his
    rattles/clack 'ems SO hard it hurts my ears - it makes him laugh.  His
    dad talks Much louder than I do and has a much deeper voice.  He almost
    always brings a response from Jonathan.  If he tries to speak quietly
    to him, he only sometimes gets a response.  I stood behind Jonathan
    this morning and talked to him and he didn't respond at all.  When he
    could catch a glimpse of me, he twisted around and he responded very 
    positively.
    
    So my question is .... what is the real age that you can begin any type
    of "real" testing?  At his last check up, he had some fluid in his ear
    still from his last infection - how much of a difference can this make?
    He also seems sensitive to "hissing" noises.  
    
    I don't want to panic, but then last night I started reading a book
    (Children of Silence) that I had bought just because it sounded
    interesting, and some of the things in the book sounded remarkably
    similar to how he behaves.  I've always been conscious of his hearing,
    and some of the little "tests" that I've been doing with him, I now
    suspect that he reacted more to a vibration or the "wind" from me
    speaking closely to him.
    
    Any help you could offer would be greatly appreciated.
    
    Thanks,
    Patty
    

    
    Here's hoping your hunch *doesn't* mean anything, but you sound pretty
    tuned in to your son.
    
    Ask your pedi for an indepth test; there should be something available. 
    And don't be swayed if s/he poo-poos the idea - YOU'RE the parent. 
    Better to feel foolish than to feel guilty you didn't listen to your
    own knowledge.
    
    Please let us know how it turns out!
    
    Jamd

    
    
    Chloe needed tubes in her ears after repeated ear infections. To test
    her hearing, the ENT specialist did an ultrasound test (I think) where
    waves were bounced off the eardrum. Painless. I don't see why they
    could not do a similar test on a 7 month old, since it does not involve
    the active participation of the patient, nor does it measure physical
    reactions from the patient (like startling or laughing). It sounds a 
    lot more effective than a nurse shaking rattles behind his back!
    
    Ask your doctor to refer you to a specialist with the right equipment.
    It seems like you have observed your son closely and that your concerns
    should be addressed properly.
    
    Good luck,
    
    Patricia.

Boy does this bring back memories. I hope that it's just the ear wax and/or 
fluid causing what you describe as mid to high frequency loss. It's very
likely that is the problem. However, a few thoughts - 

1) Seven months is old enough to be able to recognize and respond to 
   environmental sounds. There are much more conclusive methods of testing
   (ultrasound is not one of them) which can determine of your child has
   a hearing loss, what kind of loss, and what you can do about it.
   
2) While it's certainly possible that ear wax and fluid can cause this kind
   of loss, it's always best to be certain, so that if there is a loss, it can
   be dealt with as soon as possible. Get back in touch with your pedi and
   have him/her refer you to an Ear, Nose and Throat (ENT), preferably one
   that works with children with hearing loss. They usually will not test
   your child until the wax has been vacuumed out and the fluid is gone.
   At seven months, they will probably screen for environmental sounds again,
   (rattles, voices, etc). The next step is usually an ABR (Brainstem) test.
   Read through my replies in this note, one of them describes the test.
   It is conclusive in a child that age.
   
3) 'Children of Silence' is an excellent book. If it made you more aware of
   your child's percieved hearing loss, that's good, but don't let it alarm
   you. There's a very good chance that nothing permanent is wrong, but it's
   important that you verify this. So many children with hearing loss get 
   diagnosed very late in their childhood, which makes it much more difficult
   for them. Early intervention makes a profound difference.
   
4) If you have any questions, or need help finding a pediatric ENT or 
   audiologist, feel free to send me mail or give me a call.
   
Chris
who spoke at Assumption College yesterday about raising a deaf child

    
    Well I called the Dr yesterday, and they called back last night.  They
    agree that he should be retested, but don't want to do anything until
    his ears are completely clear of fluid/infections.  He has an appt the
    end of the month to check again.
    
    She also made some other interesting points;
    
    o He's a third child.  It's quite possible that he's so used to "other"
    noise that he has a strong ability to tune us out, and he may really
    just be ignoring us.
    
    o She said that "considering the amount of ear infections he's had, in
    such a short time, he did well on their initial hearing test".  Which
    doesn't necessarily sound like "good" news to me.  
    
    o She thought that the wax and fluid would affect accuity, but not
    overall noise.  Things may sound muffled, or as if you're "underwater",
    but he should still be able to hear ok.
    
    o He may have a higher tolerance to noise, which is why he doesn't
    startle easily.
    
    o He may have a temporary hearing loss because of the infections, and
    she wouldn't really be surprised if he did - "wait it out". (this
    doesn't make me feel comfortable - Chris' first eye Dr said the said
    thing about his drift - the second Dr thought we should being action as
    soon as possible - maybe I'm just being paranoid).
    
    She said there are 2 basic methods of testing.  One is the type of
    tests with the rattles or other "noise makers" to see if he responds to
    them.  She seemed to think that they could be a little more precise and
    careful with it when they retest him.
    
    She said if they don't like the results of that test, or can't get a
    good test, there is a test that measures the brain waves, and that
    would be the next step.  She is a little hesitant to do this right off
    as sometimes it requires sedating the child, and she wants to be sure
    that it's worth that before doing anything so "drastic".  I tend to
    agree, but I also don't want to be too "passive" if there is a problem.
    
    As for the book .... as I mentioned before, I've always (with all my
    kids) done little "tests" to see if they really could hear or not.  The
    other two always seemed fine, but at best, the ones I do with Jonathan
    are inconclusive.  He MIGHT have turned because of the noise, or he
    might have turned because he got a glimpse of something - or he
    might've just turned.  He might not have turned because he didn't hear,
    or didn't feel like it, or didn't hear it because he's just tuned out. 
    I guess the part that bothers me is the times that I've been reasonably
    sure that he's heard quieter noises, could be explained as something
    else, and that's the part of the book that made me more aware.
    
    I was also always under the impression that if a child couldn't hear
    (well) they wouldn't tend to make as much vocal noises.  Jonathan is
    jabbering away constantly.  I was quite surprised in the book to read
    that her second (chatty) daughter also had a hearing loss.  And reading
    about how much of a difference early intervention can make, makes me
    want to push this a little quicker than I might have wanted in the
    past.
    
    I'm probably just being over sensitive to him .... he may be fine.  I
    guess it's just always felt to me that it would be so horrible to not
    be able to hear, that it's something I want to make sure my children
    have a good range of hearing, and if there's anything I can do to help
    that along, I'm more than happy to.  I guess even if it means I've
    "panicked" myself over nothing (-:
    
    Thanks for listening, and thank you for the advice!!  Once his ears are
    clear, I intend to have him see an ENT if Mat. Thorn. will allow it.
    
    THANKS!
    Patty

    RE: .75
    
    I know that others have stated this before but...
    
    I would rather be pushy and wrong than be laid back an ultimately
    correct.  Erring on the side of caution is always best.  If testing
    shows that there is no problem, then that is good.  No harm is done. 
    If you wait and find that there was a problem, you will probably wonder
    if anything could have been done.  Push to get the testing.  You know
    your child much better than any doctor.
    
    
    Dan

    Patty,
    
    I had both my kids tested by an audiologist at 6 months, they were both
    at risk for hearing problems due to antibiotic treatment at birth.  What we
    learned from Shannon's test (actually she may have been 8 months) was 
    she could hear normal ranges, but her 3 year test warrants more testing...
    we go to Dartmouth Hitchcock in a few weeks.
    
    Courtney (aka Radar) checked out fine at 6 months.  They will see her
    again at 3, but do not anticipate problems.
    
    I believe it is better to test and put my worries to rest or seek
    proper treatment whichever the case may be, than to take the "wait and
    see" advice some peditricians give out.
    
    keep us updated,
    Beth

The ABR (brainstem) requires that the child be soundly asleep. Infants don't 
usually require sedation because they sleep so soundly, but older kids usually
need sedation. Chlorhydrate is common, they call it a 'cocktail'. It is an
extremely mild sedative that poses a miniscule risk. There's nothing about an 
ABR to be afraid of, except the usual clinic/hospital fears.

If after your child's ears have cleared up, you still have your suspicions,
push your pedi for testing. The simple tests they are able to perform are
just not conclusive. Most HMO's will not question the need for an ABR if
the request is generated by an ENT. You may have to have your pedi refer you
to a pediatric ENT.

Finally, if you're interested, read through my responses to this note and its
companion note in the older version of the file. I also have them compiled into 
a chronology. It's my own version of 'Children of Silence'.

Good luck, and listen to your gut

Chris  

    
    
    
    
    
My three and a half year old daughter was diagonosed with a hearing loss
in April.  She is scheduled to be retested next month to indicate if her
hearing continues to deteriorate.  


Her speech reception thresholds are 30 and 25 db for right and left 
respectfully.  Pure tone tests indicate borderline normal hearing in the 
left, at 250 to 1000 hz, sloping therafter to a moderate high freq 
sensorineural loss; right ear testing reveals borderline normal hearing at 
250 and 500 hz, sloping to a moderate mid and high frequency sensorineural 
loss.  

Shannon is a bright, happy, kid who fits in well in most situations.  I do 
not want to make her hearing loss an issue when we meet new friends or go
to new places, but I would like to know how other parents deal with new
situations, questions from strangers etc.  In addition, I don't force her
to wear her hearing aids (or glasses for that matter) when she doesn't want 
to.  For instance, when she gets home in the evening, she takes them off to go 
swimming and doesn't put them on again until the next morning.  The way I feel 
is she will learn what assistance they provide, and will voluntarily put them 
on more as she matures.  

I am not sure if this is the "right" thing to do.  I would like some first 
hand experience from folks who have older children (or yourselves) who wear 
aids for a similar hearing loss.  Obviously, she can hear without the aids, 
and if she asks "what" when I think she should have heard me, I tell her that 
her aids might help and offer to put them on (she usually declines the 
invitation:^()  How else should I handle it?  I don't want her to hate them, I 
would like her to grow to like them, after all, they are essential for life.
    
    
    Thanks for any help
    
    Beth
    
    cross posted in "hearing loss" notesfile

You seem to have a good handle on this. Mine is also 3.5 yrs but he has a 
severe-profound loss, and hears next to nothing without his aids. Still, I 
have the same concerns and struggle that you do, insofar as getting the child
to wear them.

I have a few questions for you.

Is she recieving some kind of speech therapy at this time? If not, is she going
to be attending preschool next month? Does she have an IEP, and does it
specify speech therapy?

IMO the one place you want to be sure your child is recieving maximum auditory
input is in school. If that means you'll have to compromise her wearing them
around the house, then so be it. I know it's tough on the parents. It's really
tough with Patrick because you have to get right in front of him for him to
acknowledge you. You can't shout across the room like you can with hearing
kids. At 3.5, I've found that compromise works wonders. If he doesn't want
to wear them, and it's quiet time anyway, then we let him take them off. 

As long as she wears them for speech and for school, then I don't think she'll
lose that much, at least not at 3.5. It hasn't been fun this summer, with the 
heat and humidity. His earmolds can get full of sweat, and itch. We usually
take them out at that time. Keeping them in risks battling with swimmer's ear,
which means no hearing aids at all for at least a week.

Sorry for the rambling. I think you're doing the right thing by not forcing
her to wear them 100% of her waking hours. I don't agree that she'll want to, 
or have to, wear them for life. She will most likely learn to compensate for
her hearing loss and get by just fine without them in most situations. She may
choose to wear them when she must have 100% comprehension, such as in the
classroom, or at a lecture, meeting, or event.

Chris

    
    Chris,
    
    Shannon is currently receiving one-on-one speech therapy two hours per
    week to correct articulation errors related to the high freq loss.  She
    substitutes sounds she can hear for those she cannot.  Her therapy
    consists of  one hour at the babysitter, one hour at home.  She will not be
    attending school in our district this year, she will continue private
    therapy.  The school offer was two half hours a week of one-on-one, 
    so I figure she will be better off with our current situation, and we
    won't have to worry how she gets to speech and back.
    
    I have however, registered her for a musical kindergarten program for
    two hours per week.  She receives plenty of school-like services from
    her babysitter who is a former early  ed teacher.

    Shannon absolutely wears her hearing aids for speech.  In fact, she
    wears them more when she is busy and out "in the world" than she does
    at home.  Her compensatory skills are superior!  Her language has
    always been at least age appropriate.


>>Sorry for the rambling. I think you're doing the right thing by not forcing
>>her to wear them 100% of her waking hours. I don't agree that she'll want to, 
>>or have to, wear them for life. She will most likely learn to compensate for
>>her hearing loss and get by just fine without them in most situations. She may
>>choose to wear them when she must have 100% comprehension, such as in the
>>classroom, or at a lecture, meeting, or event.

    Chris, that is the only optimistic view I have heard from someone who
    is informed as I know you are;^)  Shannon had a very long course in the
    hospital following her premature birth, and I still have a hard time
    forcing her to do something "for her own good".  She has to wear
    glasses along with those huge aids; she doesn't have much room behind
    her ears, she also must wear an eye patch for as long as possible each
    day.  She does all of this and remains a spirited, happy, adaptable kid
    and I don't want to be the cause of frustration to her.  She is truly
    amazing!
    
    I must also note that most kids don't notice her aids, she is not
    ashamed of them, those that do know have been very accepting.  We
    adults could learn a lot from the littlest!
    
    -beth
    

>    Shannon is currently receiving one-on-one speech therapy two hours per
>    week to correct articulation errors related to the high freq loss.  She
>    substitutes sounds she can hear for those she cannot.  Her therapy
>    consists of  one hour at the babysitter, one hour at home.  She will not be
>    attending school in our district this year, she will continue private
>    therapy.  The school offer was two half hours a week of one-on-one, 
>    so I figure she will be better off with our current situation, and we
>    won't have to worry how she gets to speech and back.
 
Excellent!! There's nothing wrong with holding her back if the situation
warrants it. Patrick needs a few orders of magnitude more work than Shannon,
and he's SO ready for school. We have to send him now.
   
>    I have however, registered her for a musical kindergarten program for
>    two hours per week.  She receives plenty of school-like services from
>    her babysitter who is a former early  ed teacher.

Again, excellent!! As long as she's immersed in spoken language and
environmental sounds, that's going to do wonders for her receptive and
expressive (spoken) language. It would be good if she had some kind of social
interaction with other kids her age (hearing or not) just so that she can get 
ready for school next year. A playgroup would do fine.

>    Shannon absolutely wears her hearing aids for speech.  In fact, she
>    wears them more when she is busy and out "in the world" than she does
>    at home.  Her compensatory skills are superior!  Her language has
>    always been at least age appropriate.

That's wonderful. Now that she's oral, you have another set of concerns for the
future. That is, making sure that her teachers don't take her for granted
(because she does so well in a hearing classroom) and let her slip. The hard
of hearing kids have a different set of problems to deal with in the
mainstream. I suggest that you think about these kind of things and use the
resources available to you to help. One of the best in MA is the Clarke School
Mainstreaming Center which assists parents and children with their problems
in the mainstream. They will consult on Shannon's IEP.

>>Sorry for the rambling. I think you're doing the right thing by not forcing
>>her to wear them 100% of her waking hours. I don't agree that she'll want to, 
>>or have to, wear them for life. She will most likely learn to compensate for
>>her hearing loss and get by just fine without them in most situations. She may
>>choose to wear them when she must have 100% comprehension, such as in the
>>classroom, or at a lecture, meeting, or event.

>    Chris, that is the only optimistic view I have heard from someone who
>    is informed as I know you are;^)  Shannon had a very long course in the
>    hospital following her premature birth, and I still have a hard time
>    forcing her to do something "for her own good".  She has to wear
>    glasses along with those huge aids; she doesn't have much room behind
>    her ears, she also must wear an eye patch for as long as possible each
>    day.  She does all of this and remains a spirited, happy, adaptable kid
>    and I don't want to be the cause of frustration to her.  She is truly
>    amazing!
 
They are amazing, aren't they? 8^) From what you've written, I can see that
you are very attuned to your child's hearing loss and are doing a FANTASTIC job.
You've brought up all of the issues and dealt with them. Keep up the good work!

You mentioned big aids...what is she fitted with? Patrick has a much more severe
loss and wears small case power aids. Or is it Mom's perception of the aids 
which prompted that statement? ;^)
   
>    I must also note that most kids don't notice her aids, she is not
>    ashamed of them, those that do know have been very accepting.  We
>    adults could learn a lot from the littlest!
 
Very true. At 3.5, they don't much care. Things change as they get older. 
Still, every kid gets teased and ridiculed for something sometime in their
lives. It happens to all of us. Still, our generation has a LOT to learn 
about 'disabilities'. Our children's generation...I'm not worried about them
at all. Case in point...I belong to a parent's group for deaf kids that does a
lot of community outreach. One of the things we do is perform songs in sign
language. We visited Cityview School in Worcester recently, and performed a
song to their whole school. They loved it. But what happened next blew me away.
They signed two songs to US!!! I can't tell you what a feeling that was, to be
the parent of a deaf child, watching 600 school kids sign a song to your
child. This generation is going to be much more accomodating to our children.

Hang in, and please keep in touch

Chris
    

    
    
    Thought it was time for an update on Shannon, we have had a busy month.
    Shannon's hearing has remained stable since it was first diagnosed. She
    was tested with and without her hearing aids and the results showed she
    is gaining quite a lot from their use.
    
    The local school district has agreed to pick up the tab for her speech
    services :^) which will remain one-on-one at her babysitter's house
    which btw, is *outside* the school district!  
    
    Shannon's language was formally evaluated last week which proved the
    observational assessments of "at least age appropriate".  This series
    of tests was done by the school speech/lang pathologist whom Shannon
    had never met.  I was pleased to hear that Shannon tested at 4 years
    6 months (she is 3 years 8 months old) for language and continue to
    wonder what her language would be like if she could hear everything.
    
    The school officials I have met with do not believe Shannon needs an
    IEP, and do not think she ever will.  Once her articulation errors are
    corrected (and they do seem to be improving), she should not be 
    educationally handicapped.  What are the pros and cons of this
    "coding"?  I have asked how a hearing impaired child could not be coded
    and got an explaination that I did not exactly understand....Maybe I'm
    the one with the educational handicap!:*)
    beth
    

    
    
    Geez ... I was looking for this string a while ago and couldn't find
    it.
    
    It's been a while since I entered in here about Jonathan and his
    hearing.  He did end up seeing an ENT, who made an interesting comment;
    'If a parent even SUSPECTS that there's a hearing loss, there usually
    is, and it's usually more severe than you suspect'.  With that in mind,
    we decided to go ahead with the tubes in his ears.  BUT then the summer
    was spent re-scheduling the surgery because there was chicken pox going
    around and around at his daycare, and they can't have been exposed to
    any 'communicable diseases'.  By the time July came around, he suddenly
    seemed to be hearing much better, startling at noises, 'passing' all
    the little hearing quizzes I was doing with him, getting grumpy if
    there was a lot of noise and the types of things you'd expect from a
    baby.  He was finally all set for his surgery, when I discussed his
    marked improvement with the Dr., who decided to check him one more
    time, before the surgery. 
    
    We went, and his ears were clear.  Almost perfectly normal.  And
    everyone was a bit surprised.  So, we decided to postpone/cancel the
    surgery.  If he got another infection w/in a few weeks, we'd do the
    surgery.  In a few months, we'd treat it and see how it goes from
    there.  Sounded good.  A month later, he got another one.  Sort of a
    gray area from what we discussed, so I took him back to the ENT anyway.
    
    Now, it's interesting to note, that during this month, and particularly
    the week or so before he got the infection, I was trying, quite
    diligently to get him off of (soy) formula, and onto whole milk (11 mos
    old).  He was drinking a lot of milk (he LOVES it!), and I had noticed
    in the past, just enough to make me wonder, that he'd also been
    drinking 'more milk than normal' shortly before his other (more recent)
    ear infections.  
    
    I brought this up to the Dr, and he advised avoiding milk (as in
    glasses of milk - milk in food is okay), and see what happens.  Well,
    when we went back for his 10-day check after the ear infection, his
    ears looked *PERFECT* - this has never EVER happened!!  He's always
    taken a long time to get over his infections to the point his ears look
    'normal' again.  We're a month past the last one, and his ears are
    still looking great, and he can hear perfectly!!  
    
    His directional acuity is right on (if the noise is to the right, he
    turns right etc), he startles at loud noises, he's sensitive to 'over'
    stimulation, can recognize voices without faces and the whole bit. 
    Interestingly enough, it seemed the better he could hear, the less he
    'talked',  He used to ALWAYS jabber, and sometimes quite loud.  Now he
    only 'talks' when he's playing or trying to call to someone - there's a
    definite purpose to his speech these days.  Part may simply be
    maturity, but I also wonder if before he was jabbering just to be able
    to hear SOME noise.
    
    So, for now, his hearing seems to be 'perfect' - or at least not
    noticeably decreased.  The ENT is thrilled with his progress, and we're
    really hoping that the milk was the answer.  He's been getting all
    these little viruses that are around, but maybe when he's truly
    'better', I may try to give him some milk anyway, just to see what
    happens. (I'm having a hard time bringing myself to do that, but we do
    need to KNOW!).
    
    The theory is that he's allergic to the milk protein, and that allergy
    brings about swelling in the membranes, causing fluid not to drain
    properly, and eventually an ear infection.  FWIW, his right ear has
    always been worse, and he always sleeps on his right side.  Hmmmmm.
    Normally when kids have the protein allergy, they tend to get very
    'nasal' as well - runny nose, head cold type symptoms - he doesn't seem
    to get that.
    
    For now then, we are using Edensoy, which is a milk-type product, made
    from soy, thus w/out the 'normal' milk proteins.  He LOVES the vanilla
    flavored, and drinks as much as I'll give him.  He's also discovered
    that he loves Juicy Juice too, so there's a bit of a battle.  
    
    And THANKS to whatever note that was in here, suggested a milk allergy,
    and the Vitasoy.  It's nice to see him acting 'normal' (if not a bit
    willful too! (-:).
    
    Thanks,
    Patty

    Patti
    
    After reading your last note, I am wondering.....
    
    Nicholas has been batteling an ear infection since July 20th!
    We have tried all types of Anti-bodice, and none seem to be doing 
    the trick.  A few weeks ago, the infection was gone, but the fluid was
    still there, we were put on a maintenance dose, and boom we got another
    infection on Saturday evening! 
    
    This roller-coaster ride is for the birds! We have an appt with the ENT
    on 10/18, and hopefully, he will be able to suggest something? 
    
    I thought about allergies, however, he is on Soy-Formula, and doesn't 
    get any milk products. hmmm..
    
    Nicholas (9mos) is always jabbering, and now I am wondering if that is
    so he can hear some noise?  I am also curious at how long he can go
    with the infection in his ear, without it causing any damage...
    
    Urgh, if only the 18th would come...
    
    Anne Marie

    Anne Marie,
    
    The danger with the fluid in the ear (as it was explained to me) is
    that if it's left there long enough, it eventually will thicken and
    harden, causing permanent damage.  This is really only seen upon
    careful examination of the ear drum - when the fluid is thickened or
    hardened, the drum appears 'stretched' - at that point they should be 
    more anxious to do the tubes.
    
    How long?  I suppose it depends on the kid.  Jonathan had fluid in his
    ears for at least 6 months, and doesn't appear to have any problems
    now, with his hearing.  He is starting to say very similar words, so
    clearly there is good distinction for him between sounds.
    
    In my experience with the antibiotics ... 
    o it almost always took 2 different types to kick the infection (which
    meant we'd switch antibiotics about 4 days into it)
    
    o The maintenance doses didn't always work - he 'broke through' several
    times.  We finally had our most success with a maintenance dose of
    Augmentin (which is a real pain, cuz it has a SHORT shelf life - ask
    the pharmacist to let you add the water to decrease the # of times you
    need to go back - then they just give you a bottle of powder and a
    bottle of water, and when you're ready for a 'new' bottle, mix the 2).
    
    o What worked for one infection didn't necessarily work for the next. 
    I don't recall that Amoxycillan ever worked for him, and bactrim only
    worked some times.  Gantrassin (sp?) worked for a little while. 
    Augmentin and Pediazole (but pediazole has erythramycin in it too)
    worked the best for us.
    
    Maybe 'something else' is going on ?  There's some references in here
    about kids being allergic to all sorts of other things that seemed to
    cause earaches.  I remember that juice was one of them.  Some other
    things that MIGHT help;
    
    Try to keep the baby 'propped up' a little more, ESPECIALLY when eating
    - don't give him a bottle laying flat - CHECK that your daycare doesn't
    do this (mine was, and I didn't know!)
    
     Jonathan's had a 'flat' pillow in his crib since he's been about 4-5
    mos old, just to help keep him propped.  If you don't like the pillow,
    you can stack some books/boards under the feet of his crib - kind of
    put it on an incline.
    
    Try a steamy bath before bed - it seemed to help 'clear things out' for
    him, and avoid stuffy noses which always led to another infection.
    
    Pray ...
    
    Some of these may simply be acts of desperation, but they did seem to
    help.  Also, interesting to note, is that they recommend *NOT* using a
    decongestant to try to dry up the ear, because it doesn't do a thorough
    job, and merely ends up thickening the fluid in the ear, potentially
    making the problem you're most trying to avoid, worse.
    
    If you're not comfortable waiting that long for the Dr., call them and
    explain what you're feeling - they can probably get you in sooner.  I
    would guess that they want some time to go by to see how he does
    himself in healing this.  Remember - the tubes will not guarantee he
    won't get an infection.  In our case, we were thinking of doing it more
    to minimize any hearing problems, than to deal with the infections.
    
    As for him making noise ..... they say that as long as there's fluid in
    the ear, they can hear about as well as 'we' hear underwater.  If
    you're concerned that he has less hearing than that, you can conduct
    some very unscientific, and inconclusive tests of your own.  FWIW - it
    took a few months of ear infections with Jonathan before I noticed he
    wasn't hearing well.  It took a few more before I was sure he CAN hear
    well.  They seem to be slow at much change - but definitely not
    something you want to totally ignore.  The ENT should ask you how well
    he hears, or if you think he hears ok, or something like that.  This is
    one of your more important questions.  If you can give him examples "He
    doesn't startle at anything", or "He doesn't seem to hear me, but hears
    his dad okay", or anything specific like that, it'll help.
    
    Two other things that have changed DRAMATICALLY in Jonathan .... when
    he couldn't hear well, I could take him to the theater, and he'd be
    fine and just watch the show - the noise never EVER bothered him.  This
    was actually why I first suspected he could hear better - took him to
    one movie, and he was clearly irritated by the noise.  The 2nd obvious
    sign with him, was when we played with his 'noisy' toys, if I banged it
    real hard, he would sort of wince.  Previously, he'd laugh.
    
    I wish you luck!  If you need the name of an ENT, I'd be happy to share
    ours - he is REALLY wonderful, and listens to mom/dad quite well, and
    places a lot of value in what we see/assess the situation.  I felt like
    he really WANTED to understand Jonathan and exactly what was going on. 
    And that he really cared and listened to what we said.  It's nice not
    to be brushed aside, as many Drs can do.
    
    

Anne Marie,

Some soy formulas still have milk!!  We found this out when we took Justin
*completely* off milk products.  Look for such things on the label as
whey and casein.  It's amazing how misleading labels can be!

    Carol

    Carol
    
    I will check that.....
    
    Patti
    
    I was suprised about the comments about decongesteants.... Nicholas's
    nose is running non-stop, I have beeng giving him a little dimetapp
    to help him out a little, but I will stop for now.
    
    As for changing medications, we have gone round and round! Last week
    it was 3 different types. We started Cefil (sp?) on Thursday, so today
    should determine weather its starting to work or not.  I did see some
    loose wax in his ears, so maybe its starting to work?  One can only
    hope!
    
    As for Juices, I never thought of him being allergic to them. He hasn't 
    had any reactions to any of his other foods...but who knows?
    
    I will keep you posted as to how we progress over the next few weeks!
    John and I have discussed this, and we have decided if the ENT thinks 
    the tubes will help in the draining, and help him NOT to develop a
    hearing problem, we will go with it. I want to do what is right,
    without making Nicholas suffer any more. (he has had an infection in 
    1 and/or both ears since the middle of JUne!)
    
    Anne Marie

    
    I hope I haven't misled you about the decongestants .... I think that
    they're ok to take for normal congestion, but I had asked if there was
    anything I could give him that would help dry up the fluid in his ears,
    such as a decongestant .... THAT's when I was told that they're not
    helpful to his ears.  I'm sure that in moderate amounts, for normal
    cold stuff, it wouldn't be a problem.
    
    As for wax .... they tell me the two are completely unrelated, though I
    have my suspicions.  Jonathan has the waxiest ears I've ever seen -
    even the Drs get kinda aggravated they have to keep picking wax out to
    check on him - but I've asked several Drs several times, and they all
    say it's got nothing to do with it.  Hmmmmmm. 
    
    About the only way I could tell if the stuff was working was when his
    mood started to improve, and his tolerance levels went 'back to
    normal'.  He's usually a little fussier/grumpier, more sensitive when
    his ears hurt.
    
    The tubes will definitely help with the draining.  They may or may not
    help with infections, so you may want to ask the ENT how successful he
    feels the operations are.  The answer we got was sort of vague, and one
    of those 'well, it helps a lot of kids, but definitely not everyone,
    and it's a lot harder and MUCH more important to keep the ears dry". 
    He didn't PUSH the surgery, mostly gave us the facts of the matter, and
    let us decide.  
    
    Other questions to ask are;
    
    What about scarring to the eardrum (any incision will leave a small
    scar), and how does he anticipate this will affect the child's hearing?
    
    When does he expect them to fall out?
    
    What if they don't fall out by themselves?
    
    In how many children does the surgery need to be repeated?  Should just
    once be enough for 'my' child?
    
    If, for some reason, we can't keep the ears dry, is there anything else
    that can be done?  What methods do you [the Dr] suggest or have to help
    me keep his ears dry?
    
    If an infection occurs w/ the tubes, ss it more/less/same important to
    get it treated?  Is there any additional complications because the
    tubes are there?
    
    Some of these I got answered from my Dr - some I never got to ask
    because our surgery was cancelled.  I think it's important to know
    where your Dr stands on things, and how much he's willing to help
    everyone through it.  It's fine for them to say "Here you go! Don't get
    him wet!", but what happens if that's too difficult to do?  If the
    tubes don't fall out, our Dr said if 1 was left, he'd do it in the
    office.  If both were left, he'd have to go back under to have them
    removed, and definitely before he was 2.  I guess it hurts, so they can
    get away w/ doing 1 of them, but the kid won't let 'em near to do the
    2nd one. (-:  
    
    The biggest struggle for us was that they couldn't say that it really
    would lessen his frequency of infections .... we were merely going to
    do it to hopefully improve his hearing.  The infections were
    necessarily our driving force - only in the sense that the whole fluid
    deal was causing a loss of hearing.
    
    There's also a procedure where they don't do the tubes, but just make
    the cut and drain the ears.  The Drs I talk to pretty much agree that
    this is not useful, and requires the same amount of discomfort for the
    child, so the tubes are preferred (they still have to put the kid under
    to just drain the ears).
    
    .....it's amazing how fast you learn about this stuff when you're
    dumped in the middle of it! (-;
    
    Good Luck!
    
    p.s. To ANYONE - I had suggested EdenSoy as a milk alternative - I take
    that back!  There's next to nothing in it that compares with the 'good'
    things in milk, except maybe the consistency.  I believe that someone
    had mentioned that VitaSoy has comparable vitamins/calcium to milk. 
    SORRY!!!  

    Our son has been diagnosed with a profound hearing loss in his left
    ear.  We have recently seen a specialist (Dr Oyer in Worcester) who did
    some tests and ordered a catscan.  After reviewing Connor's results he
    recommened us to a Dr. McKenna out of Mass Eye & Ear whom we met this
    past Friday.  We liked Dr McKenna very much (Dr Oyer too).
    
    To make a long story short, Dr McKenna feels the only chance to improve
    Connor's hearing loss is thru surgery.  I can't recall the exact
    medical term for the type of surgery.  Basically, Connor's ear canal
    did not develop, so the cut back the ear, pull it forward, locate the
    existing canal and drill to enlarge it.  He said Connor's type of
    surgery is quite unusual - done 6 times per year.  He said in about 10%
    of the cases the canal grows back over and the surgery is repeated.  Dr
    McKenna said the biggest risks are total loss of hearing and facial
    paralysis due to the number of nerves in the area in which they
    operate.  But he did say the prognosis is very good.
    
    We don't want to opt not to do this out of fear of having our son
    operated on - we feel the benefits will in fact out weigh the risks. 
    Right now Connor can not determine the direction from which noise
    comes.  (i.e., potentially dangerous in traffic situations,  having
    trouble hearing teachers, etc).  He is not quite 4 now, but Dr. McKenna
    feels it's best to have done within the next 9 months or so.  We are
    leaning towards scheduling it for the fall.  There is also a potential
    issue with his right ear, he does have diminished hearing in that ear
    as well but it is the Dr's recommendation that we repeat the catscan in
    9 months to see if there is any change in the right ear.  
    
    I guess what I'm looking for here is any comments/experiences any
    noters out there may have with similar hearing problems, with Mass Eye
    & Ear, with Dr McKenna and so on.  We are trying to learn as much as we
    can about this.  We have a list of questions already put together for
    Dr McKenna and will be talking with him more later this week.  But
    again, any information or suggestions you may have would be
    appreciated.  I also posted a note a few weeks ago in the HEARING LOSS
    notesfile when we first saw Dr Oyer but haven't had much luck with
    that.  Thanks.

	I'd ask the doctor what the statistics are on the associated
	risks, if you haven't already.

	Also, what are the risks of doing nothing?

	When my husband needed surgery, the risk of doing nothing far
	outweighed the risk of surgery.

	Karen

    As the mother of a permanently hard of hearing child, I would urge you
    to move towards the possiblity to correct the problem as soon as
    possible.  Suffering a hearing loss causes so many problems, it seems
    a new problem surfaces weekly.
    
    Any chance for improvement would be greatly appreciated, unfortunately,
    our problem will be with us forever.
    
    -beth
    
    

    Ask the doctor if you can speak to parents of other patients
    that have had this surgery.  But keep in mind that your childs
    experience my be different than theirs.
    
    Denise
    

My 4yr 3mo son has been having a difficult time hearing since prior to December
of 1995.  I have tried all the tricks and I believe he really cannot hear 
everything that I can hear.  Not only does he say "What?" a _lot_, but if I
say "What are you coloring?" he might reply with a question like, "You want me
to go change my clothes?" and a really confused look.

Strangely though, his hearing seems to be normal for about three weeks and then
diminished for about three weeks (though we are now three weeks through this
latest cycle and his hearing has not improved).  I have had him tested in the
doctor's office in December 1995 and then again last week (May 1996).  In 
between, we have probably had about 4 cycles of improved hearing and then 
diminished hearing.  The test was not in a soundproof room.  He held a earphone
to his ear and raised his hand when he heard a tone.


His December test looked like this where r=right ear and l=left ear:

			500	1000	2000	4000
	
	25 normal	r	r	r	r

	40 mild		l	l	l	l

	60 serious


He then had a normal hearing test in January.
His test results from last week looked like this:

			500	1000	2000	4000

	25 normal			r	

	40 mild		rl	rl	l	rl

	60 serious


The doctor says this is normal and is due to immature eustachian tubes in
preschool aged children.  Still, I'm not that comfortable with his answer since
it is so obvious when his hearing is diminished.  I don't witness this with
other children his age.

Now, I am noticing strange pronunciations for common words (almost like he'll
put two words together and leave out the middle) and total confusion when he
hears a word that he does not hear often.  And this from a child who _never_ 
did this a year ago.  His speach was _very_ clear all the time.

So, does anyone know what the test really means?  Does the situation seem to
indicate a need for further testing?  What do the test results really mean?
Isn't it strange that his hearing improves at seemingly regular intervals?

The doctor has scheduled another appointment for August, 1996 and doesn't seem
to think it is out of the ordinary.

    RE: .94
    
    This type of "problem" is normal for kids that have fluid in the ears. 
    My son went through this prior to having tubes inserted.  After each
    infection, the fluid would not drain properly resulting in more
    infections later on.  The tubes cleared this up.  In the meantime, his
    hearing was not the best.  He would have a hard time understanding us. 
    We also had him tested and found that the hearing level around 2000
    thru 4000 Hz was not good at all.  While it is difficult to describe,
    this is the frequency range in which all clarity for voice resides.
    
    A quick example to someone to try is to play a CD or cassette of a song
    you are familiar with and use an equalizer (if you have one...) to
    remove the sound from the range above.  The result will be what we call
    "muddy".  There will be little clarity of the vocals.  This will give
    you some idea of what a child would hear.
    
    Dan

If I were you, I'd push for a referral to a specialist.

    re: .94
    
    I should have mentioned in my note that my son has not had an ear
    infection for a long time (probably more than a year).  His ears have
    been clear of both wax and fluid.
    

I agree with .96 -- see if you can get a referral to a specialist.  
My son had not had an ear infection in >~6 months when he was 
diagnosed with a moderate hearing loss due to fluid in his ears.  
One set of drs said that the fluid had disappeared after his last
ear infection, but when they put the tubes in, that dr. said there
was at least 3 months worth of fluid built up in his ears.  Even now, 
5 months after his tubes were inserted, he is still trying to catch 
up, verbally.

Mary

Get a referral to an ENT (ear, nose, throat).  Don't ask.  Tell the doctor
you want the referral.

Please let us know what the ENT says.

     Carol

    I agree 100% with Carol.
    
    Especially since Jonathan's ENT told us (after I got done wondering to
    him if Jonathan has a hearing loss) ... if a parent so much as suspects
    a hearing problem, there almost definitely is one, and it's probably
    worse than you imagine, since the child is able to compensate in other
    ways.
    
    We had an audiologist test Jonathan, and it's a pretty extensive test
    that they're able to do, and there's no way in the world that the kid
    can "cheat" or "guess".  His findings were right in line with our
    suspicions.
    
    The longer you go with muffled hearing, the more trouble your child
    will have trying to "make up", and just trying to cope.  When he gets
    the directions "wrong" at school, they'll be less sympathetc and
    patient than you are.