Update from CI appointment

[JennyB]

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.

This is an option I believe. If I remember correctly, I know a family who's child goes to Milton from Scarborough everyday.

 

[faire_jour]

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.

I get hit from one side for supporting parents who chose oral and then the same crap for advocating for sign....what a community.

She needs to be concerned. It is a terribly serious situation with long term consequences. As a linguist I am sure you are aware of the issues associated with long term language deprivation. She still sees amplification as the answer, which if it hasn't worked for 3 years, it won't suddenly change overnight. This is a child with a language delay that is becoming so severe that it is starting to affect other areas of development. That IS an educational, neurological, and developmental emergency.

 

[JennyB]

I get hit from one side for supporting parents who chose oral and then the same crap for advocating for sign....what a community.

She needs to be concerned. It is a terribly serious situation with long term consequences. As a linguist I am sure you are aware of the issues associated with long term language deprivation. She still sees amplification as the answer, which if it hasn't worked for 3 years, it won't suddenly change overnight. This is a child with a language delay that is becoming so severe that it is starting to affect other areas of development. That IS an educational, neurological, and developmental emergency.

I am not opposed to your view. Just your approach. I agree with you.

I have met Tyler. He is INCREDIBLY auditory. He wants to speak, he wants to hear. It is obvious after only a few minutes. Amplification needs to be explored without a doubt.

I can say that Cherie also doesn't think this is the only way. We have had so many conversations about how we can get Tyler exposed to as much ASL as is possible at this time. Cherie, and her entire family, are making tremendous efforts to learn and expose Tyler to ASL.

My point is that she is scared enough as is. The information you are giving is correct, it can be given in a less terrifying way.

 

[deafdyke]

Jenny, so the educational options in Canada are basicly " solotaire" mainstreaming? That REALLY sucks! Not that I'm opposed to that. Some kids (even ASL users) can really thrive under that model. More like I'm opposed to the "One size fits all" educational model.
Wish the educational authority in Canada would realize that a continum of educational placement option would work well for all sorts of disablities/differences.
And yes, you're right the Deaf-Blind program wouldn't really offer a lot. There are a handful of high functioning students in programs like those (there were at Perkins) but most Deaf Blind students aren't "just Deaf-Blind" Especially at a School for the Blind, where most students would be multiply disabled (although most students would be mildly multiply disabled)
Good on you for being proactive in this area!!!! At least Cherie has you as a resource!

 

[ryancher]

Thanks Jenny... you are awesome!

I met a very nice woman from Deaf Access this morning. We chatted for a bit and then we picked up Tyler from preschool. She is hearing but is married to a Deaf man, has Deaf children and obviously advocates for the Deaf. She is oral and ASL. She met Tyler today and played with him in ASL. He responded so wonderfully... I was proud of Tyler! We are planning another playdate next week.

Tomorrow, we have an appointment at home with EC Drury Home Visiting Teacher who is ASL only. I'm excited for this appointment as my husband will be home to take part with Tyler and I.

And then Wednesday morning, Tyler & I are going to Sick Kids Cochlear Unit for his hearing test. And Jenny is so wonderful she is going to meet us there!

So... trust me... I am doing everything I can. I am exposing Tyler to as much ASL and speech as I can. Jenny is right, he is INCREDIBLY auditory. He tries to speak and the more signs we give him the more we are hearing him attempting speech.

 

[deafdyke]

So you feel like you're getting a lot of resources? YAY! I'm very happy for you!!!! I thought there was a Deaf community center the Bob whatever Community center? But maybe that's the wrong province. I do think that it's possible to get a lot of out of school stuff.
Is Tyler in a special needs preschool? (the kind for ALL sorts of disabilties)
Just wondering........do your boys have any other problems? (and even small ones not major "obvious red flag ones)
I do know that severe speech delays aren't completly unheard of with hoh kids.
However, it is kind of weird that he has such a severe speech delay. It MIGHT not be directly hearing related. Like he could have a really bad case of apraxia or even a syndrome.
There is a chromosome disorder called 18p-. It can be severe or mean intellectucal disablity.
BUT, the hallmark of it is a severe speech delay. There are kids who are mildly affected and just had a speech delay or a learning disabilty. Like it can mimic CP or apraxia.

 

[Miss-Delectable]

Just take it one step at a time and just use what you have such as ASL and FM then work from there.

Milton's program for early intervention and mentoring's great. I think it's neat that Jenny is there to help you a bit through this journey you and family's going on.

 

[ryancher]

Is Tyler in a special needs preschool? (the kind for ALL sorts of disabilties)
Just wondering........do your boys have any other problems? (and even small ones not major "obvious red flag ones)

Tyler's preschool is mostly mainstream - there are a few special needs. We have a resource teacher that works within the preschool and works directly with Tyler. She does signs with him.

Our older son, has mild cp. It is very mild. He wears an AFO on his right ankle to keep from toe walking. He had a severe speech delay and an auditory processing disorder (took a bit longer than normal to process). He was non-verbal until he was 3 years old... went from non-verbal, to a few words, to speaking in full 3-4 word sentences in 3/4 months. He's now 6 years old, in grade 1, and doing absolutely wonderful. Other than the AFO under his sock - no one would even notice cp.

So far Tyler has only been diagnosed with hoh. My husband has ADD... so that may be affecting Tyler also... or maybe APD???

 

[deafdyke]

Are you satisfied with Tyler's preschool? Do you think he's getting a good education? Are the other special needs kids mild (ie learning issues or ADD or other things like that?) or more classic disabilites?
Here in the States, we have Early Intervention preschools for kids with disabilites.(all kinds)
I wonder if a) Canada has those and if b) Tyler might benifit from that type of preschool.
Not nessarily a preschool for kids with severe issues, but did you know that sometimes kids with CP (normal IQ) have apraxia, so they learn Sign? I wonder if that might be something to look into? Like see if any CP organizations in your area might offer a preschool for kids who use Sign? Or was that the preschool you were talking about that doesn't use ASL? I know you're really working on trying to get Tyler a full toolbox of tools....I wonder if you could get him evaluated by what is called an augmentive and alternative communication specialist? That might be helpful. Like he wouldn't need to use those voice output switches, but I wonder if there's other options. I actually seem to recall that one of the Canadian Schools for the Deaf, is partnered with a program for kids who don't have a hearing loss, but use ASL for other issues.
I am kind of surprised that Canada wouldn't have Early Intervention preschools specificly for kids with disabilites.
So your other son pretty much caught up? Not even a learning disabilty or even social issuew? That's AWESOME!!!! And actually if you contacted the CP organizations, maybe they might offer some support for him too. I know the thinking is that kids with mild disabilties, don't really need the type of things that kids with more severe/obvious disabilites do. But on the other hand, he could meet other kids with LDs or mild CP and there are summer camps and things like that, which might be helpful for him. (and I DO think that many kids with mild disabilites can REALLY benifit from interventions and camps and things like that, which are targeted towards kids with more severe issues)
Unfortunatly my cut and paste is broken But there was an article in the paper about how they've discovered that ADD has a genetic basis. They tested kids with ADD, and a bunch of them had mild chromosome abnormalities.
I also know that it's not unusual if say a person with Asperger's marries and has kids, they often have kids with more "classic autism"
NOT saying that Tyler and your other son have Asperger's or autism. But I wonder if your husband's ADD may have been passed down, and manifested in your sons as a severe speech delay. It is actually pretty common in things like learning disabilites and other mild nereological disabilites to have a severe speech delay. I dunno.maybe it might be worth it to have your boys tested, to see if they might have a chormosome disorder that might explain why they had/have a severe speech delay.
Oh, and I gotta say as an aside, I do think that part of the autism "epidemic", may be about docs and experts forgetting that other disorders can have severe speech delays.
NOT saying that autism doesn't exist. It does.

 

[ryancher]

Yes, I am very satisfied with Tyler's preschool... they are great with him and he loves it. It actually is an Early Intervention Preschool - they have SLP's, OT's and Resource Teachers - who work with Tyler at the preschool and also at home with all of us.

I have no idea the other children's special needs - I would imagine most of them would be mild/moderate - nothing that particularly stands out.

I've looked everywhere for preschools that use ASL and there is nothing close. However they do use signs at Tyler's preschool - not ASL but signs. So even though it's not ASL - atleast it will help with Tyler's frustration and he'll recognize them through his ASL learning.

Yes, our older son, caught right up... in fact he's doing awesome. With his cp, he has low muscle tone in his right leg/ankle (which is why he wears an AFO), and he takes a bit longer to process information. However, he has an AWESOME memory - he can remember simple things from years ago. So with this memory, he is doing well in school subjects such as math, science, and such. His processing is getting much better too... and as for his speech - absolutely no delays anymore! No learning disabilities or social issues either. We're lucky it was just mild cp... it could have been much worse! He definetely does not show any signs of Asperger's, autism, or ADD.

Tyler on the other hand... I don't see autism... but there could be some ADD or learning disabilities... we're going to get a behavioural assessment to see what it shows.

Oh and I completely agree with you about the autism "epidemic" - and professionals missing other things that cause speech delays.

 

[deafdyke]

Oh so Tyler's preschool is one of those inclusion preschools? At least you have those resources. That's a lot better placement then one of those mainstream classrooms with minimal accomondations. He has a TOD who is fluent in ASL right? I wonder if you could request a full time TOD to be kind of like a paraprofessional. They would "shadow" Tyler and teach him ASL. I really wonder if his speech issues are basicly following his brother's track. It might not be directly hoh related, but rather due to familial apraxia. Did Tyler's brother have speech therapy? Tyler may need APRAXIA speech therapy, rather then dhh style speech. I know about apraxia since it's a very common co morbid with my genetic syndrome. We're hoh but we have severe apraxia. I don't remember when the spoken language explosion happens......
You know.....I just thought of something. Could you have him evaluated at one of the Deaf Schools re his speech delay? They may be more familiar with dhh kids who have significent speech delays. They might also know of resources you may be missing. I know of a parent on here who put her daughter in a res school. Then she was searching around, as she wanted dhh program based mainstreaming. She finally found one that was nearby!
Oh and again ryancher, that rocks that your other son is doing so well!!!
And actually Tyler may not have ADD per se....more like the frustrations associated with not having spoken language.

 

[deafgal001]

yep, If he have apraxia, I would think a general speech disorder therapy would be able to identify it easily, probably more so than speech therapy who work deaf children because they are used to working with people, deaf or hearing, with speech disorders. They were able what type of speech disorder my son have. and he is hearing.