Audiology, ENT, and visit to School for the Deaf

[2boyzmama]

It was a busy morning!

Connor had an ENT appt, which always means a hearing test. We did the hearing test first. His compliance was "okay", he's figured out the test by now, so sometimes he "outsmarts" the testers by throwing the ball in the bucket before the sound comes, or if it's been a while since he heard a sound, etc. They said they double checked each frequency just to be sure, and HE PASSED!?? What? He's NEVER had a normal hearing test.

Normally I would be very happy with this, but as you all know, I'm in the middle of an IEP battle about placing him in a classroom with other signing peers. So I explained this to the Audiologist, and she said that this just proves the variability of his hearing loss (which is common since his loss is pure conductive). Under perfect conditions (no background noise, no wax, open tubes, no fluid, no congestion, etc) he is capable of hearing. But because of how tiny his ear canals and ear drums are, the littlest obstruction and his hearing drops immediately to mild-moderate conductive loss across the low frequencies.

So she wrote on the report that he had normal hearing today, but has a history of fluctuating mild -moderate conductive hearing loss.

So then we went to the ENT. Both tubes are still in (shockingly! It's been over 2 years!) and appear to be working. His ear canals are 1/2 the size of normal on the left, 2/3 the size of normal on the right. I talked to the ENT about schooling considerations, and he said that he fully supports a placement where Connor has signing peers. He said "now that we know he has Apraxia, we need to be looking much further into his schooling vs just his preschool/kindergarten years. He won't be catching up anytime soon."

I know this, yet it still kind of stung.

Anyway, the ENT is going to be writing a letter to the IEP team. He recommended that we continue to push ASL for the whole family and said he'll write that in the letter too.

Then we went off to visit a School for the Deaf. They have a program there called "Sign and Say" which is specifically for kids with Apraxia, with and without hearing loss. It is Montessori-based (which I think I'm okay with for Connor, not for Ian at all, his learning style is much different). Everything in the classroom is signed AND spoken by everybody. It's the perfect environment for Connor.

BUT...it's over an hour away. And if I'm having issues already with our local school not agreeing to an out-of-district placement, I have no idea how I"m going to get them to agree to this!

However, there already is a child from our district attending the school. AND, Connor didn't have the diagnosis of Apraxia when the IEP team last met. AND, I didn't have the actual words of "fluctuating hearing loss" on his audiograms. SO...maybe I'll have more to fight with?

And, in the two weeks that Connor has been in the fully-verbal classroom he's in now, his verbal attempts have increased, but his signs have decreased. That's NOT good. It's not good because his verbal attempts sound nothing like words! I don't understand him! It's a lot of "ma ba da" strung together. When he combines his verbal attempts with his signs, we all understand him and there is zero frustration. I took him to a Deaf Community Resource Center event over the weekend and all of his signs came back, and it was so nice to see! He's confused in the fully-verbal classroom. He doesn't know what to do, how to talk, what's expected of him.

I've got to get him moved to another school. Sigh.

[AndVeeGeeMakes3]

Lotsa stuff to process there, huh?

I hate it when I get that "not going to catch up very soon" thing. I'm so sorry. I also, on the flipside, hate it when she "overscores" on something that I know she can't do in a REAL situation, mostly because it feels like they think I'm making stuff up. It's such a fine line to walk, isn't it? You definitely would like for Connor's hearing to be "normal," but you know that it's not -- most of the time.

We had the same experience with signing, which is why we were encouraged to/did stop. But we've actually been talking lately about resuming it (ugh, I don't want to learn anything else new . . . please make it stop!) because it's clear that the apraxia is really reducing the possibility of intelligible language. Sure, she knows the spoken word, but she can't achieve the spoken word. I'm sorry that y'all are dealing with this too. It feels like a no-win situation.

I didn't know y'all were seriously considering the school (it looks really cool, by the way). That's neat (particularly since the district seems to already have allowed it for another kiddo).

Well, as always, lots of hugs and no "answers." Are there answers?

[Linda on the move]

Originally Posted by 2boyzmama

It He said "now that we know he has Apraxia, we need to be looking much further into his schooling vs just his preschool/kindergarten years. He won't be catching up anytime soon."

I know this, yet it still kind of stung.

BUT...it's over an hour away. And if I'm having issues already with our local school not agreeing to an out-of-district placement, I have no idea how I"m going to get them to agree to this!

Is hiring an educational advocate an option? Here, they charge by the hour and can estimate how much the total will be. You might ask the school that you want if they've had other parents hire an advocate and how it worked out.

[2boyzmama]

Originally Posted by AndVeeGeeMakes3

Lotsa stuff to process there, huh?

I hate it when I get that "not going to catch up very soon" thing. I'm so sorry. I also, on the flipside, hate it when she "overscores" on something that I know she can't do in a REAL situation, mostly because it feels like they think I'm making stuff up. It's such a fine line to walk, isn't it? You definitely would like for Connor's hearing to be "normal," but you know that it's not -- most of the time.

We had the same experience with signing, which is why we were encouraged to/did stop. But we've actually been talking lately about resuming it (ugh, I don't want to learn anything else new . . . please make it stop!) because it's clear that the apraxia is really reducing the possibility of intelligible language. Sure, she knows the spoken word, but she can't achieve the spoken word. I'm sorry that y'all are dealing with this too. It feels like a no-win situation.

I didn't know y'all were seriously considering the school (it looks really cool, by the way). That's neat (particularly since the district seems to already have allowed it for another kiddo).

Well, as always, lots of hugs and no "answers." Are there answers?

Yep, you've got it, exactly.

Except that no one is encouraging us to stop signing, and frankly we WOULDN'T ever stop signing. It's done *wonders* for Connor. He'll naturally drop the signs if/when he starts acquiring intelligible speech, but for now he knows that he isn't understood unless he signs. Which is wonderful, absolutely what we were going for when we started using signs with him. So to see him confused now, it's SO frustrating!!! We've worked so hard for over two years to teach him the signs he knows, and now he goes to school and he doesn't understand what is expected of him. He doesn't know whether he should be trying to talk (which no one understands) or if he should be signing (which only one person understands, his interpreter). He doesn't see anyone else signing!

So yeah, we're semi-seriously considering St Rita's. I just don't know...can I really put him on a bus at 6:30 in the morning, and have him be gone all day long? I *know* that it's what's probably best for him, but at the same time it just feels so...wrong.

Sigh.

[2boyzmama]

Originally Posted by Linda on the move

Is hiring an educational advocate an option? Here, they charge by the hour and can estimate how much the total will be. You might ask the school that you want if they've had other parents hire an advocate and how it worked out.

Yes, we have some advocates working with us. And I did ask the school, they gave me the name of an advocate that works specifically with their school.

[khaoskat]

I would double check, but if I am not mistaken, the school is required to assist the parents in the choosen method of communication.

His lack of use of signs I think is to do with the fact that I think the school is not providing adequate sign interpreter, and that you should do a "spot" check and observe one day to make sure that they are actually following through.

His lack of signing could mean that they are not requiring him to sign and speak in class, but to only attempt to verbalize.

Under your conditions and circumstances, you are going to have to do these random checks all the time to make sure his needs are being met. It could be as much as a stop by the school and observe through the door/window into the classroom. But the key is to do it unannounced, so they are not ensuring that everything is being followed.

I would also address the issue that his use of signs is decreasing and as such, you are going back to not being able to understand him.

[2boyzmama]

Originally Posted by khaoskat

I would double check, but if I am not mistaken, the school is required to assist the parents in the choosen method of communication.

His lack of use of signs I think is to do with the fact that I think the school is not providing adequate sign interpreter, and that you should do a "spot" check and observe one day to make sure that they are actually following through.

His lack of signing could mean that they are not requiring him to sign and speak in class, but to only attempt to verbalize.

Under your conditions and circumstances, you are going to have to do these random checks all the time to make sure his needs are being met. It could be as much as a stop by the school and observe through the door/window into the classroom. But the key is to do it unannounced, so they are not ensuring that everything is being followed.

I would also address the issue that his use of signs is decreasing and as such, you are going back to not being able to understand him.

Only if the child is hearing impaired. Deafness is the only disability under IDEA that allows the family to choose the mode of communication. I realize now that's why they're arguing his label of hearing impaired. If he just had Apraxia, they wouldn't be required to follow through on the signs. But I have the letter from the audiologist and one coming from the ENT, so hopefully I'll win that fight.

[isign]

And, in the two weeks that Connor has been in the fully-verbal classroom he's in now, his verbal attempts have increased, but his signs have decreased. That's NOT good. It's not good because his verbal attempts sound nothing like words! I don't understand him! It's a lot of "ma ba da" strung together. When he combines his verbal attempts with his signs, we all understand him and there is zero frustration. I took him to a Deaf Community Resource Center event over the weekend and all of his signs came back, and it was so nice to see! He's confused in the fully-verbal classroom. He doesn't know what to do, how to talk, what's expected of him.

This is normal. In my former career (before I became a mom) I was a sign language interpreter in a public school, with very little experience with deaf students. One student, who was 4 when I got her, and starting kindergarten, was profoundly deaf. Her sisters deaf, as well as her mother. Her mother's best friend, the deaf ed teacher, was deaf, and until she came to our school, she was in a deaf day school.

When in the hearing classroom, she started trying to talk because that's how her peers communicated. She would ask me if she was saying it right. She wanted to talk because her friends talked, and it separated her from them.
Once she was back with her family or one on one with me, she stopped talking. I saw this with several students.

I don't know your story, but I applaud you for seeking out the deaf school. Too many parents, in my experience, want their kids to be 'normal' thus putting them in a school where no one can communicate with them except the interpreter.

[Lindsay1234]

We did Audio and ENT on the same day you did too!


I know this might be WAY too much (and Im sure youve already thought about it), but have you considered moving closer to the school? It sounds like a REALLY awesome school and the things youve been dealing with from your district seems so...crappy. (sorry, I couldnt find a grown up word!)

[2boyzmama]

Originally Posted by isign

This is normal. In my former career (before I became a mom) I was a sign language interpreter in a public school, with very little experience with deaf students. One student, who was 4 when I got her, and starting kindergarten, was profoundly deaf. Her sisters deaf, as well as her mother. Her mother's best friend, the deaf ed teacher, was deaf, and until she came to our school, she was in a deaf day school.

When in the hearing classroom, she started trying to talk because that's how her peers communicated. She would ask me if she was saying it right. She wanted to talk because her friends talked, and it separated her from them.
Once she was back with her family or one on one with me, she stopped talking. I saw this with several students.

I don't know your story, but I applaud you for seeking out the deaf school. Too many parents, in my experience, want their kids to be 'normal' thus putting them in a school where no one can communicate with them except the interpreter.

See...if we thought that verbal immersion was all he needed to be successful in speaking, then we'd enroll him in the auditory/verbal classroom in our area (no signs are allowed, it's the program that most parents of cochlear implant kids send their kids to). But in his case, with his structural issues and his apraxia, no amount of verbal immersion is going to bring on speech. Intensive speech therapy might, but it will take years. Which is why we push the ASL so much, and why I'm frustrated to see him dropping signs.

We've worked SO HARD to give him a language (ASL), I don't want to see that effort go to waste. If his verbal attempts were more clear, then I'd be all for it. In fact we don't ever allow him to "silent sign", we make him "sign speak" even if it's just grunts. But we need the signs to understand him!!

Originally Posted by Lindsay1234

We did Audio and ENT on the same day you did too!


I know this might be WAY too much (and Im sure youve already thought about it), but have you considered moving closer to the school? It sounds like a REALLY awesome school and the things youve been dealing with from your district seems so...crappy. (sorry, I couldnt find a grown up word!)

How did your appts go?

We are considering moving...there's lots of details to that, of course...we've owned our current home for 3 years and as you know the market isn't that great. I'm the sole-income provider in the family. And Connor's medical needs plus a surprise third baby have led to us racking up a bit of debt. So moving isn't easy (is it ever?) I did contact my realtor, though, and she is helping us evaluate alternatives.

[Lindsay1234]

Really good thanks. Her new molds are fitting WAY better and no more squeaking from the aids! lol The negative pressure in her right ear drum is gone! The ENT says her ears look the best that shes ever seen them. (finally a great ENT appt)

I know how hard it is moving. I would have never suggested something so drastic but the school just sounds so dang good!

A pp on here (or that other thread on this discussion I JUST found) said that 40 min isnt that long on a bus and i agree, partly. Its not that big of a deal for my healthy 8 year old to spend 40 min on a bus but by the time she gets off, shes so tired of the ride, the stopping (makes it hard to read), the bad kids in the back, the bus driver yelling, etc. I think 40 min would be TOO long for a kid that has ANY sort of issues and I think not being that verbal WOULD be a huge issue for him and the driver.


BTW, how many signs does he know? Hes 3, right? Sophia is almost 1 and we are JUST now pushing signing. (milk, mom, dad, cat, eat)

[2boyzmama]

Originally Posted by Lindsay1234

Really good thanks. Her new molds are fitting WAY better and no more squeaking from the aids! lol The negative pressure in her right ear drum is gone! The ENT says her ears look the best that shes ever seen them. (finally a great ENT appt)

I know how hard it is moving. I would have never suggested something so drastic but the school just sounds so dang good!

A pp on here (or that other thread on this discussion I JUST found) said that 40 min isnt that long on a bus and i agree, partly. Its not that big of a deal for my healthy 8 year old to spend 40 min on a bus but by the time she gets off, shes so tired of the ride, the stopping (makes it hard to read), the bad kids in the back, the bus driver yelling, etc. I think 40 min would be TOO long for a kid that has ANY sort of issues and I think not being that verbal WOULD be a huge issue for him and the driver.


BTW, how many signs does he know? Hes 3, right? Sophia is almost 1 and we are JUST now pushing signing. (milk, mom, dad, cat, eat)

Yay for a good appt!!!

We didn't start signing with him until just before his first birthday, and we didn't get serious about it until 18+ months. Really, once he started reciprocating, we started getting serious. And then around age 2 when we realized how delayed his speech was going to be, we really started focussing. So you're exactly where we were!

He has 160 that he uses correctly and consistently, and another 30-40 "emerging" signs (like his letters, his numbers, etc) His signing vocabulary is in the 36-40 month range, and he turned 3 two weeks ago, so he's right where he should be!!!!

My baby is 5.5 months old, and I'm just now starting to sign specifically to him, I wonder if he'll pick them up quickly...I imagine he will!

[momtoalexsarah]

Looks like it must be the month for great hearing tests - Megan was to the ENT and had a test done last week and it was great - near normal. The only area that she flunked was when they added background noise to spoken word - she did not do well on that.

I relise that you may disagree with my thoughts on this topic, this is comming from our experience with Megan so take it FWIW.

I would take a little longer in the class he is in - yes the amount of signing is dropping - but the spoken is increasing. To overcome the apraxia repeated repitition seems to be what is working with Megan - and that means that there is a level of frustruation with understanding. The more she talks, the more we assist her in adding in the correct sounds- and get practice - even if the attempts are not perfect - we are making progress.
Connor is a year younger then Megan, developmentaly she wasn't ready for this active corection untill just the last 3-4 months BUT they needed good verbal responce (even if it was garbled) in order to correct it.
He may not be completly comfortable in the spoken environment - so all support to prevent sensory overload issues should be monitored and changes made to minimize the stress it is causeing.
Don't take this the wrong way but the push to keep him using sign at home - is that also so that you/DH don't have to try and interpret the spoken word with out the sign. It is hard - I know first hand, but we made WAY more verbal progress when I started ignoring Megans gestures (signs) it forced her to work harder or try again to make me understand - trying different sounds, different words ect.

[2boyzmama]

I know we've had debates about this before

Originally Posted by momtoalexsarah

Looks like it must be the month for great hearing tests - Megan was to the ENT and had a test done last week and it was great - near normal. The only area that she flunked was when they added background noise to spoken word - she did not do well on that.
Yes, I suspect Connor has difficulty with this too. He is too young for this kind of test though. Out of curiousity, what do they suggest for something like this? Is it an actual hearing problem, or an auditory processing problem? Do they aid something like this? Is there a specific kind of listening therapy for this?
I relise that you may disagree with my thoughts on this topic, this is comming from our experience with Megan so take it FWIW.

I would take a little longer in the class he is in - yes the amount of signing is dropping - but the spoken is increasing. To overcome the apraxia repeated repitition seems to be what is working with Megan - and that means that there is a level of frustruation with understanding. The more she talks, the more we assist her in adding in the correct sounds- and get practice - even if the attempts are not perfect - we are making progress.
Connor is a year younger then Megan, developmentaly she wasn't ready for this active corection untill just the last 3-4 months BUT they needed good verbal responce (even if it was garbled) in order to correct it.
He may not be completly comfortable in the spoken environment - so all support to prevent sensory overload issues should be monitored and changes made to minimize the stress it is causeing.
Don't take this the wrong way but the push to keep him using sign at home - is that also so that you/DH don't have to try and interpret the spoken word with out the sign. It is hard - I know first hand, but we made WAY more verbal progress when I started ignoring Megans gestures (signs) it forced her to work harder or try again to make me understand - trying different sounds, different words ect.

Maybe it's the difference in our location (Canada vs US), but the practices behind treating Apraxia seem to be different than what you're describing. The SLP said that she approaches it from a very basic beginning, getting Connor to repeat basic single syllable sounds over and over, with different combinations of consonants and vowels. So he can say "ba" and he tries to say "bee" but he can't combine them to say "ba-bee" (he ends up compensating a "dee" in the second syllable). So in therapy he is coached on how to say each individual syllable, then slowly we work on combining them.

**In the meantime, because this process takes so long (years), we are being encouraged--moreso than before even--to give him a means of communicating.** Whether that be his own made-up gestures, formal sign language, or assistive communication devices. In our case, because we have already implemented sign language and he's responding so well to it, it makes sense to continue with it.

There is a misconception that sign language delays verbal attempts. Research about using signs with "normal" kids shows that it actually brings on verbalizations sooner rather than later. Kids don't use signs as a crutch because they are in a verbal world. In most environments, it is easier to speak than to sign (example the SLP used was if a child is holding a toy they aren't going to put the toy down to sign, they risk another child taking the toy! So they will try to use their voice).

BUT...until we can train Connor's brain to form the right connections to his mouth to make the right sounds, he can't be left with no communication.

We don't allow "silent signing", we require him to verbalize with his signs. And if he tries to say a word and says it wrong, we correct it. He is around good verbal models (and would be in the Deaf school, too, there are "normal" kids that attend the school, they do that purposefully to give these kids good language models). But I'm not going to take away his language! If I take away his signs, he will make a HUGE regression in his ability to have expressive communication. His verbal expressive is around 18 months, and that's not counting his articulation errors.

We don't see any of the common behavior issues in 22q kids (we see toddler obstinance, but nothing like what Ian was like!) and I wonder if it's because he has age-appropriate expressive communication (which is nearly unheard of in 22q kids, since speech delay is so so so common). I don't know for sure, it's possible that he's just not effected by the behavioral aspects of the syndrome (just like he's not effected by any cardiac aspects), but I do wonder if the signing has something to do with it. I'm not going to play with fire by taking his signs away.

He's in a verbal household, he's in a verbal culture (except when at DCRC events), he's in two speech therapies a week...I do not believe that we are in any way slowing down his verbal progression. But I do fear that if he isn't allowed to continue his sign progression, we will see increase in frustrations, which doesn't benefit anyone.

And I'm trying to look a few years down the line, too...severe learning disabilities are very common in 22q. His school years might be very frustrating for all of us, him especially. So I really want these first few years in preschool to be a positive experience so he learns to LIKE school. I don't want him to be frustrated with his inability to communicate, only to be frustrated by his learning disabilities later.