Update from CI appointment

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ryancher

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Okay... I want to start out by stating I don't want any negative comments.

We went to Sick Kids yesterday and we met with the SLP & Social Worker. Unfortunately, Tyler was his usual "out in public/professional" self. He acted like a complete monkey and didn't really show his "real/comfortable" side.

We have to return on Wednesday for a hearing test but I'm debating about whether or not going. I may just decline for now.

I know they all think there are "other" issues going on with Tyler. As for what... who knows... autism/ADD/APD... I don't know.

I have a gut feeling they won't implant him - they seem stuck on these "other" issues. It upsets me that they didn't get to see Tyler at his "normal".

Anyways... just thought I'd update everything.

We're going to continue with the new aids & FM system - and then obviously ASL - but I'm debating whether or not it's worth it to go all the way back down there to be turned away. I have a really hard accepting everything emotionally and I know this will just upset me again. I persued it with the hopes of better results.
 
Why don't you make a video of him at home when he is acting normally and then show it at your next appointment so they can understand?
 
ryancher, do you have the option of going to a really good hospital for an evalutation?
Like the kind of place where they'd have experiance in seeing weird cases?
Also, have you mentioned that his sibling had a severe speech delay? Perhaps its familial and not related to hearing issues.
It is possible that your son can hear at hoh levels, BUT he just has a severe speech delay. It's unusual to see a hoh kid with , "like deaf speech delays however, "sometimes unilateral loss kids will have significent speech issues
 
deafdyke said:
ryancher, do you have the option of going to a really good hospital for an evalutation?
Like the kind of place where they'd have experiance in seeing weird cases?
Also, have you mentioned that his sibling had a severe speech delay? Perhaps its familial and not related to hearing issues.
It is possible that your son can hear at hoh levels, BUT he just has a severe speech delay. It's unusual to see a hoh kid with , "like deaf speech delays however, "sometimes unilateral loss kids will have significent speech issues
Click to expand...

We went to the Cochlear Unit within Sick Kids Hospital - it's the best of the best children's hospital.

Yes, I told the SLP that our oldest son had a severe delay and APD and that he didn't start speaking until 3 years old (he went from 0 words, to a few words, to speaking in full 3-4 word sentences in a matter of a few months).

My guess is they are thinking Tyler is autistic - although I STRONGLY disagree. I may agree with APD or ADD... but definetely not autism. I can see his desire to communicate with us... he just doesn't know how.

Tyler is not unilateral... he has a moderate/severe loss in his left ear and a severe loss in his right ear.
 
I do know that early on significent non nereotypical behavoirs can mimic each other. By that I mean that kids with a learning disabllity can face a lot of the same issues that kids with a lower IQ do......and it is VERY hard to differentate between them.
And believe it or not it's actually kind of common for "just LD" kids to have spoken language issues. Are there any specialists at Sick Kids who might be experianced in evaluating dhh kids who aren't exactly NT?
(LD, cerebal palsy etc)
From what you've said it doesn't sound like he's autistic. The only bullet point criertia he meets is severe spoken language delay right? Not a doc, BUT that doesn't mean he's autistic.
 
deafdyke said:
I do know that early on significent non nereotypical behavoirs can mimic each other. By that I mean that kids with a learning disabllity can face a lot of the same issues that kids with a lower IQ do......and it is VERY hard to differentate between them.
And believe it or not it's actually kind of common for "just LD" kids to have spoken language issues. Are there any specialists at Sick Kids who might be experianced in evaluating dhh kids who aren't exactly NT?
(LD, cerebal palsy etc)
From what you've said it doesn't sound like he's autistic. The only bullet point criertia he meets is severe spoken language delay right? Not a doc, BUT that doesn't mean he's autistic.
Click to expand...

Exactly... his language delay is a huge issue and probably a huge red flag for autism... but he makes good eye contact, joint attention, he wants to communicate - he's even gone as far as to grab our hands to help him learn the sign for a word. To me, that is not autistic.

There is no doubt in my mind that he has obvious attention issues - he jumps quickly from one task to another and frustrates easily.

Like I said, I wouldn't be surprised to hear APD or ADD... but autism no way!

Did I mention, as of 2 weeks ago, he is potty trained... yahooo!!!! No pull ups and no accidents for over 10 days.

Anyways... I am going to contact the Social Worker at Sick Kids again and see if there are any specialists at Sick Kids who might be experienced in dhh with "possible other issues". I WANT someone who understands dhh children though. That's my next mission!
 
I would say that since it looks like he may not get a CI for awhile (maybe not ever) you MUST give him sign language and fast! He needs full, real, fluent language, and he isn't accessing spoken language. I would INSIST that he get into a program that uses sign NOW. He can't handle using spoken language, that is why his behavior is an issue. Also, when he has language, people will see that it isn't autism, because he will have more appropriate behavior, and have language and communication.
 
faire_jour said:
I would say that since it looks like he may not get a CI for awhile (maybe not ever) you MUST give him sign language and fast! He needs full, real, fluent language, and he isn't accessing spoken language. I would INSIST that he get into a program that uses sign NOW. He can't handle using spoken language, that is why his behavior is an issue. Also, when he has language, people will see that it isn't autism, because he will have more appropriate behavior, and have language and communication.
Click to expand...

Unfortunately there are not a lot of programs around here... but I am working on it. His Deaf teacher is introducing ASL to him.
 
ryancher said:
Unfortunately there are not a lot of programs around here... but I am working on it. His Deaf teacher is introducing ASL to him.
Click to expand...

Honestly, that isn't good enough. He needs to be in a school that uses sign as the mode of communication. He needs to be around people communicating in sign fluently, so he can learn it. You should ask his teacher of the deaf if there are day programs at local schools that he could attend for preschool. His current situation is going to become more frustrating if he is unable to learn spoken language and his behavior is going to get worse and worse. And, as his behavior gets worse, people are going to start to label things that are CLEARLY caused by his hearing loss as other disorders (ADD, autism, etc). His behavior and language issues are related to his hearing loss. Why does he have trouble paying attention? BECAUSE HE CAN'T HEAR WHAT PEOPLE ARE SAYING!!! Why does he seem distracted? BECAUSE HE CAN'T HEAR WHAT PEOPLE ARE SAYING!!! Why is his language delayed? BECAUSE HE CAN'T HEAR WHAT PEOPLE ARE SAYING!!! Why is he having processing issues? BECUASE HE CAN'T HEAR WHAT PEOPLE ARE SAYING!!!
 
Trust me... I have looked into day programs... there are nothing around here! There is only 1 preschool in our area... and they do signs - but not ASL unfortuantely.

Unfortunately, Tyler was not born in a city with a residental school program. And short of picking up and moving to another city (and losing our jobs) we have no other options. Like I've said before, we are doing the best we can.

I have accessed some Deaf groups and am working on attending workshops and playgroups atleast on a weekly basis. We are now in contact with some Deaf people or Deaf children... a lot more than before.
 
I forgot to say , go to your Wednesday appointment even if you feel discouraged. You are building a record of his hearing that way and it may help you later.
 
Bottesini said:
I forgot to say , go to your Wednesday appointment even if you feel discouraged. You are building a record of his hearing that way and it may help you later.
Click to expand...

Very true... the more input we have the better. Thanks! :ty:
 
Just some links that I found that might help you on your journey:

Read to Your Baby | deafchildren.bc.ca (Not near you but a good resource for signing, nice videos)

Welcome to the Ontario Association of the Deaf

Do you live near any of these schools? I know exactly ZERO about Canada!

Belleville
Sir James Whitney School for the Deaf
350 Dundas Street West
Belleville, ON K8P 1B2

Sagonaska Demonstration School
350 Dundas Street West
Belleville, ON K8P 1B2

Brantford
W. Ross Macdonald School for the Blind
350 Brant Avenue
Brantford, ON N3T 3J9

London
The Robarts School for the Deaf
1090 Highbury Avenue
London, ON N5Y 4V9

Amethyst Demonstration School
1090 Highbury Avenue
London, ON N5Y 4V9

Milton
Ernest C. Drury School for the Deaf
255 Ontario Street South
Milton, ON L9T 2M5

Trillium Demonstration School
347 Ontario Street South
Milton, ON L9T 3X9

Ottawa
Centre Jules-Léger
281 Avenue Lanark
Ottawa, ON K1Z 6R8
 
faire_jour said:
Do you live near any of these schools? I know exactly ZERO about Canada!

Belleville
Sir James Whitney School for the Deaf
350 Dundas Street West
Belleville, ON K8P 1B2

London
The Robarts School for the Deaf
1090 Highbury Avenue
London, ON N5Y 4V9

Milton
Ernest C. Drury School for the Deaf
255 Ontario Street South
Milton, ON L9T 2M5

Ottawa
Centre Jules-Léger
281 Avenue Lanark
Ottawa, ON K1Z 6R8
Click to expand...

Thanks for the links... I've got lots of good resources - books, videos, but I can also use more. I'm trying to give Tyler lots. He is fascinated with "Signing Time" right now.

As for the schools -
Belleville - is approx. 2 1/2 hrs away
London - is approx. 3hrs away
Ottawa - is approx. 4hrs away
Milton - is the closest (maybe an hour) but with Toronto traffic Mon-Fri it may be an 1 1/2 hr drive more or less.

So as you can see... a once a week trip would be possible but it would be VERY difficult to travel 5 days a week back and forth - not to mention my older son at a local school, and dh & I's work schedule.
The only thing we can see working in the future when Tyler starts kindergarten, is for Tyler & myself to move to Milton or Belleville and come home on weekends... but then we're going to miss my older son and husband... not to mention it's going to be very costly with rent, and stuff.

So much to think about...
 
ryancher said:
Thanks for the links... I've got lots of good resources - books, videos, but I can also use more. I'm trying to give Tyler lots. He is fascinated with "Signing Time" right now.

As for the schools -
Belleville - is approx. 2 1/2 hrs away
London - is approx. 3hrs away
Ottawa - is approx. 4hrs away
Milton - is the closest (maybe an hour) but with Toronto traffic Mon-Fri it may be an 1 1/2 hr drive more or less.

So as you can see... a once a week trip would be possible but it would be VERY difficult to travel 5 days a week back and forth - not to mention my older son at a local school, and dh & I's work schedule.
The only thing we can see working in the future when Tyler starts kindergarten, is for Tyler & myself to move to Milton or Belleville and come home on weekends... but then we're going to miss my older son and husband... not to mention it's going to be very costly with rent, and stuff.

So much to think about...
Click to expand...

I know it is a crappy situation to be in, but honestly, you might want to think about just sending him on the bus once he is three and can go to preschool. I know it is a long drive but language deprivation is very serious. If he doesn't get a fluent language BEFORE age 5, it can have permanent impact on his ability to think, learn to read and write, and ever learn a language. I know it is a scary thought, but it really is do or die time for him. You still have 2 years, so he can do it, but the longer he is without language, the worse the impact will be and the farther behind he will get, and the more work he will have to do to catch up. Think about the things that a typical 3 year old know, they know all their ABC's, numbers, colors, shapes. He doesn't have the simple language to be able to learn those things. He needs intensive, language make up, and that can't happen in the situation he is in right now. Being a parent of a deaf child is full of really hard decisions, and I think this is one that you might have to make....
 
I thought there were regional programs for dhh kids where you were? I would totally opt for sending him on the bus, to the Milton program. Yes, it's a long bus ride...BUT he would be getting the benifit of a good Deaf School.
Are there any relatives that live closer to any of the schools or programs? How about you and the boy moving to a halfway point (eg staying in a cheap motel or something) between your home and the school/program?
It's good that you've hooked up with other ASL users. What do they say? Any suggestions?
 
ryancher said:
Thanks for the links... I've got lots of good resources - books, videos, but I can also use more. I'm trying to give Tyler lots. He is fascinated with "Signing Time" right now.

As for the schools -
Belleville - is approx. 2 1/2 hrs away
London - is approx. 3hrs away
Ottawa - is approx. 4hrs away
Milton - is the closest (maybe an hour) but with Toronto traffic Mon-Fri it may be an 1 1/2 hr drive more or less.

So as you can see... a once a week trip would be possible but it would be VERY difficult to travel 5 days a week back and forth - not to mention my older son at a local school, and dh & I's work schedule.
The only thing we can see working in the future when Tyler starts kindergarten, is for Tyler & myself to move to Milton or Belleville and come home on weekends... but then we're going to miss my older son and husband... not to mention it's going to be very costly with rent, and stuff.

So much to think about...
Click to expand...

Hi Ryancher, I know it's a brutal trip, and may not be possible in your situation, but my daughter's school is an hour and a half (2 in heavy traffic) trip each way, similar to your Milton option. And it's been amazingly valuable! For her first year of PreK, I drove her in each morning and then continued on to work, my husband raced her bus home in the late afternoon and then brought her back to his work with him. Starting partway through last year and into PreK2 this year, she takes a contracted van both ways, traveling with 5 local deaf kids to the school and back -- and she LOVES these school friends, the crazy commute, we adore her driver, they have a blast (or they get in a good nap in the early morning or late afternoon). I could never afford 4 hours of cab service a day, but our local school districts provide this transportation as part of her placement as described in the IEP. You may have this same option available, which would mean your child gets a wonderful education, interaction with other deaf children, immersion in ASL that you can't provide at home, and you can continue working in your home town, rather than setting up in a motel or temporary housing.
 
Yes, Grendal, the early childhood programs at Deaf Schools or programs specificly for dhh kids are SO worth the commute! The quality of those types of early educational programs is like NOTHING else you'll find in the public school system. It is a tough choice yes....but at least you don't have to send him away to a residental school at three. I wonder....do you know if you could opt for a split placement? Like a couple of days at his current placement (is he in a program specificly for special needs kids?) and then a couple of days when he goes to the Deaf program?
 
faire_jour said:
Just some links that I found that might help you on your journey:

Read to Your Baby | deafchildren.bc.ca (Not near you but a good resource for signing, nice videos)

Welcome to the Ontario Association of the Deaf

Do you live near any of these schools? I know exactly ZERO about Canada!

Belleville
Sir James Whitney School for the Deaf
350 Dundas Street West
Belleville, ON K8P 1B2

Sagonaska Demonstration School
350 Dundas Street West
Belleville, ON K8P 1B2

Brantford
W. Ross Macdonald School for the Blind
350 Brant Avenue
Brantford, ON N3T 3J9

London
The Robarts School for the Deaf
1090 Highbury Avenue
London, ON N5Y 4V9

Amethyst Demonstration School
1090 Highbury Avenue
London, ON N5Y 4V9

Milton
Ernest C. Drury School for the Deaf
255 Ontario Street South
Milton, ON L9T 2M5

Trillium Demonstration School
347 Ontario Street South
Milton, ON L9T 3X9

Ottawa
Centre Jules-Léger
281 Avenue Lanark
Ottawa, ON K1Z 6R8
Click to expand...

The Demonstration schools are not a place for Tyler. Neither is the Brantford school as they only deal with blind and DeafBlind students. The ottawa school is french/LSQ. Milton has probably the best rep of our provincial schools for the Deaf.

As far as regional programs Deafdyke - we don't even really have one left in Toronto. We used to have 3 Deaf high school classes and now we are down to 1 - excluding a Deaf with disabilities program. Our Deaf elementary school program is set to close. I believe Robarts in London Ontario is closing too. Bringing us down to 2 ASL using bibi schools in Ontario. Deaf education is lacking here.

Cherie and I have be in contact and there are more services that the family is accessing. Faire, you need to stop scaring Cherie and the other parents here. Yes - language is vital. Yes there is urgency. She knows this. The culture in Canada is quite different from the US, especially depending on your state. You also need to take family income into consideration. In Ontario especially we have lots of smaller more isolated communities. There isn't a wealth of resources in this families area and they are tapping into all that there are. I am throwing all that I can at them too.

We are doing what we can. Instilling more fear is not going to help. Cherie is scared enough.
 
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