*Please*help fire me up (needed for this afternoon!)!!

[Guest guest]

I've been lurking on this list for about 6 months, but rarely get a chance

to post. Late this afternoon, my son Sam (2) has an appt with his ENT, and

my husband and I are determined that we will not walk out of that office

until he agrees to do something for our son.

It's really a long story, but in many ways, I feel like we are still stuck

at the beginning of this journey.

Way back in October 2002, our son had an ABR which showed a profound loss

in the left ear, but what the audiologists called " essentially normal "

hearing in the right. Well, that was a 25db threshold, and from- my

research- that seems questionable as good enough for the only ear a child

learning to speak is hearing from!

Since then, we've seen several ENTS, and audiologists, and we have just

been given the runaround. Sam has had 5 tympanograms since then, and all

but one time, they were completely flatline. Both ENTS say his ears look

beautiful though, no fluid, and " some kids just always have flat tymps,

doesn't mean it effects their hearing. Sam's had 4 ear infections in the

last year, but they are telling us that's fine, too. I don't know...none

of it sounds right to me.

Since October 2002, we've also tried testing in a booth on four different

occasions. Twice we had to cancel because Sam was so sick (croup, then ear

infection). When we finally got in, they tried testing him the " baby way "

with the light up stuffed animals, and though he was fairly cooperative,

the two audiologists weren't sure if he was bored or not hearing some

things. The head audiologist said that she thought it looked like he had

a moderate high frequency loss in the right (the left ear is very bad). We

rescheduled for play audiometry, and Sam was just really uncooperative that

day, so we didn't learn much.

Is it always so frustrating? The audiologist would like to put a hearing

aid in his right ear, but she also wants an ENT to do something about the

flat tymps.

I literally feel the difficulty my son is having. He's really struggling

to learn to speak (he is in speech therapy 2x per week, a nd works with our

Regional Infant Hearing Program weekly and is learing some ASL, which is

cutting down on his frustrations). He definitely can hear noise...a

<boom> gets his attention, but it seems that he can't detect the nuances of

speech. I see frequent " mistakes " where he can't tell the difference

between mouth/mouse, feet/teeth, baby/maybe, etc. Also, at home with us

where it's quiet he's this engaged " vocal " child. In a large, noisy crowd,

he shuts down, disconnects, avoids eye contact. Does this sound normal for

a child with this level of hearing loss? My sister actually called me

earlier in the week, and said she thought there was something not quite

" right " about my son. When I pressed, she said he seemed mildly mentally

retarded to her. I spent the entire night crying over that. I do not

believe my son is retarded - At two he has impressive fine and gross motor

skills, problem solving ability (ball rolls under the car; get the bat, and

get on your belly to get the ball out), and self help skills (brushes his

hair, teeth, tries to put on shoes, uses potty at least 2x per day). I

think he disconnects with others because of his hearing difficulties.

Temperment wise, he is shy; so he's not the type of child to " perform " in

public anyway.

I'm sure I'm completely rambling at this point, but I feel like we haven't

gotten far in the last 6 months. Any words of wisdom? Encouragement?

Does my son's behavior sound normal for a two year old with his possible

level of loss? Any tips on how to push this ENT?

Thank you!