*Update* post 43 How to Help Family with Deaf Infant

[mama2tommy]

DS1 is deaf. Your BIL & SIL are probably grieving, and tell them that's okay. I was an emotional wreck when we found out DS1 was deaf at 4 months, and let myself be that way for about a week...then I decided it was time to look forward.

We knew early on that DS was a Cochlear Implant candidate (his cochleas were well formed, no damage on his hearing nerve - all confirmed with an MRI at 6 months), so we DID NOT teach sign. Our implant center (UNC) made it very clear that they prefer children who are deaf/HOH and learning to hear that they should be made to HAVE to rely on this "foreign" sense until they own it...it's actually much easier for a deaf/HOH child to rely on manual language (sign) than to use sound and form words - we see this now with some of the children in DS's class who are behind where they should be.

Also be sure that they ask a LOT of questions - about resources, options, therapies, devices, etc., even if those options are not "conveniently located." Example - we were NEVER told about oral-deaf schools (even though there is one ADJACENT to our implant center, which was 3.5 hours from our home). I had to do my own research, and stumbled upon where they are, and how they work. We moved our family from NC to PA a little over 18 months ago so that we could send our 4.5 year old to Clarke School - he has made TREMENDOUS progress in just 1.5 years, and will be ready to mainstream next year, with little or no additional help.

There is also a yahoo support group if they want to learn more about implants (cicircle).

Good luck to them! They'll have lots of decisions ahead of them, and none of them will be wrong.

Oh, and remind them that they DO have a say so in their caregivers...if they don't like their audiologist, go to another one. If they don't like their ST, ask for another one...

[mibarra]

Originally Posted by lehcar_27 we are in STL as well....there is Central Institute for the Deaf as well as Moog but they are both oral schools only, no ASL, they are both private and extremely expensive....St. louis does not have a Deaf school, that is in Fulton MO.....Special School District of St. Louis county services Deaf children who use ASL, cued speech, CI, hearing aides, oral, etc etc and is free

Good info! Our private Moog school offers scholarships and their policy is to never turn a family away because of inability to pay. Every student at ours is on scholarship, though they are a private school.

[jen_batten]

Thanks for all the info ladies! They are actually not in st. Louis or Springfield. They are about an hour from Springfield and 3-4 from St. Louis. Here's another question to add to my list...do deaf children typically start school at the same age as their peers? Or do they go for language or something before that?

They have filed for an evaluation with EI. What kind of services will they provide?

It's gettin closer to the next appointment...I can't imagine how nervous they must be because I'm nervous for them!

[mama2tommy]

Originally Posted by jen_batten Thanks for all the info ladies! They are actually not in st. Louis or Springfield. They are about an hour from Springfield and 3-4 from St. Louis. Here's another question to add to my list...do deaf children typically start school at the same age as their peers? Or do they go for language or something before that? They have filed for an evaluation with EI. What kind of services will they provide? It's gettin closer to the next appointment...I can't imagine how nervous they must be because I'm nervous for them!

A lot depends on what route they want to take, and how they want to teach him to communicate.

For us, we knew we wanted DS to be an oral child. So our EI consisted of a teacher of the deaf coming to the house weekly from about 4 months until he aged out of EI at 3. Around 2, we added a Speech Therapist to the mix.

At three, they age out of EI and become the responsibility of the local school system. We moved so that he could attend an Oral Deaf preschool, where he goes from 9-1:30, M-F. His teacher is a teacher of the deaf, and he receives 1:1 ST for 30 minutes daily, plus 30 minutes a week of group ST. His whole school-day is centered around listening and speaking. And we supplement with at-home ST each afternoon based off of what his Speech Therapist sends home. We will send him to one extra year of PS, and in that last year, he'll be learning the standard kindergarden cirriculum...then when he's mainstreamed, his first year won't center around academics so much, rather his goal will be to learn to interact with hearing peers without all of the assistance he receives now. He'll be 6 when he enters mainstream kindergarden. His current school is expensive (when I first started looking in early 2011, I found tuition to be around $32K/year), but his school is an "Approved Private School," which means we receive state and county funding - it costs us nothing. The school system is required by law to provide a Free and Appropriate Public Education, so don't let them think about costs right now...NOTHING is off the table.

Also, not sure about your state, but in PA DS qualifies as a disabled child solely because of his hearing loss, meaning he qualifies for PA Medicaid - it's NOT income based, as most Medicaid is, and it's a huge help for things like batteries, his FM system, etc., and many use it to cover what private insurance doesn't when it comes to hearing aids and/or Cochlear Implants, including replacement costs. So something to ask about...

[faithfulorangekids]

Originally Posted by thtr4me Can you recommend a resource for learning this? My 2yo is almost totally non-verbal right now. I would love to look into this as a way to help our communication. We are doing ASL via Signing Time, but he has a really hard time signing clearly enough for us to understand him. Thanks!

Sure! I'll link some websites when I'm not mobile!

Where do you live? I can refer you to a Cued Speech instructor in your area.

[erin_c_odonnell]

Originally Posted by jen_batten Thanks for all the info ladies! They are actually not in st. Louis or Springfield. They are about an hour from Springfield and 3-4 from St. Louis. Here's another question to add to my list...do deaf children typically start school at the same age as their peers? Or do they go for language or something before that? They have filed for an evaluation with EI. What kind of services will they provide? It's gettin closer to the next appointment...I can't imagine how nervous they must be because I'm nervous for them!

Like another poster stated the EI depends on what method they (parents) chose. We do ASL no aids and so instead of learning to "listen/ speak" the EI teacher did language (signs) vocab. They come to you (general) and teach through play till 3 yrs old. We homeschool so we did drive-in services for a while but I hated the public school system and despise speech path so we stopped. Oldest dd is 6 and in 1st grade but I might hold her back a year to make sure (homeschooling makes individalizing her education to fit her easy IMO). I'm sure we're not typical though.

[jen_batten]

We homeschool too. SIL and BIL were thinking about homeschooling their kids as well...I'm interested to see if this pushes them closer to homeschooling or if it turns them away from it if they want him to go to a specialized school.

I *think* deafness qualifies as a disability in MO but I'm not quite sure so I'll look that up. It's good to know about the school funding though, that way they don't have to limit themselves due to funding.

[mama2tommy]

Originally Posted by jen_batten We homeschool too. SIL and BIL were thinking about homeschooling their kids as well...I'm interested to see if this pushes them closer to homeschooling or if it turns them away from it if they want him to go to a specialized school. I *think* deafness qualifies as a disability in MO but I'm not quite sure so I'll look that up. It's good to know about the school funding though, that way they don't have to limit themselves due to funding.

The problem we ran into with homeschool or private school is that we wouldn't get assistance from the public school system for therapies, equipment or accommodations. So we were sure to move into an excellent school district. The school system basically accepts state & county funding to pay for private preschool (since there is no better option within the school system), & they pay for transportation. Then we will mainstream into the public school system at kindy. If he proves that he doesn't need much, then we'll have more options...but if he does, at least he will be provided for without putting us into the poor house!

[jen_batten]

Originally Posted by mama2tommy The problem we ran into with homeschool or private school is that we wouldn't get assistance from the public school system for therapies, equipment or accommodations. So we were sure to move into an excellent school district. The school system basically accepts state & county funding to pay for private preschool (since there is no better option within the school system), & they pay for transportation. Then we will mainstream into the public school system at kindy. If he proves that he doesn't need much, then we'll have more options...but if he does, at least he will be provided for without putting us into the poor house!

With homeschooling the public school system is still required to provide services such as therapy to any qualified child in the school district. So if they chose to homeschool they could still get speech therapy or whatever at the local school. Although he is on Medicare so he could get services through the local clinic as well.

[erin_c_odonnell]

Jen- exactly. The Medicaid will cover any aids, speech path, batteries too. Deafness is considered a "disability" based on federal law.