CI blog for my daughter

dragon_image18

dragon_image18

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Hi,

I am a new user here. I have created a diary in the form of a blog for my 1yr old daughter who is about to have a cochlear implant done in the next few weeks. It pretty much takes the process from birth and I will continue it until she is old enough to take over.

If you are interested please feel free to look.

I am looking for comments on how I can make it better or if I make any mistakes that I need to correct.

Kairi's Blog
 
Wonderful. I will add it to my list. Good luck to her!
 
Best of luck to Kairi (and your entire family). Drew also has the Connexion-26 mutation, perhaps his blog will help you in some way.
 
Nice blog and you have a lovely baby girl. It was interesting to read your explanation of why she is using hearing aids even though she cannot hear very much with them.
 
What about a post going into more detail about the kind of early intervention she's getting?
Just a word of advice........I'm not too sure how good the EI in Washington is,(from what I understood from the blog, you just have a case manager) but if I were you, I'd contact the Washington School for the Deaf, Oral Schools/programs, as well as local Deaf Ed programs, just to see if they have anything good in terms of Early Intervention. The risk with general EI programs, is that a lot of times the therapists are mostly used to working with kids with general developmental issues. Also, since your daughter's not responding too well with HAs, go with a full toolbox approach, and see which tools are useful for her. That way, if the CI can't get her up into hoh functioning levels, she won't be behind on language.
 
dragon_image18 said:
Hi,

I am a new user here. I have created a diary in the form of a blog for my 1yr old daughter who is about to have a cochlear implant done in the next few weeks. It pretty much takes the process from birth and I will continue it until she is old enough to take over.

If you are interested please feel free to look.

I am looking for comments on how I can make it better or if I make any mistakes that I need to correct.

Kairi's Blog
Click to expand...

Welcome and best of luck to Kairi and you. She is about to start a wonderous journey. I am the parent of a 21 year old who got her first ci in 1989 when she was 2 1/2 and the best advice that I can give you is to talk, talk, talk and then talk some more to Kairi!

As for your blog, the best ones are the ones from the heart. Keep it current and write about the lows, not just the highs.

Wishing little Kairi all the best.
Rick
 
deafdyke said:
What about a post going into more detail about the kind of early intervention she's getting?
Click to expand...

Thanks for the advice. I have kinda always wondered the purpose of our EI adviser, since it didn't seem like she did much other than monitor my daughter's developmental progress. I will definitely be looking into some other programs that may be available in my area.
 
Thanks for everyone's support. This sure has been a long and stressful process for us. We are looking forward to our daughter's success
 
Welcome to AllDeaf,

Great idea to keep make the Blog. Wish I had started earlier with it.... (Have a look... link at the bottom of the post... "my daughter")

It's a great journey and the more you put into it, the more you get out of it - with interest..
Stay around and tell us more about your journey.
 
You're in Oregon? Check out the Oregon School for the Deaf........Are you near there? Is there a regional program for the deaf anywhere around?
 
Hello! I was born and raised in Oregon, you're actually in wonderful place with plenty of support for people with hearing loss. First thing first, contact NWRESD I'm not sure what it stand for I think NorthWest Regional Eduaction S? District try look that into yellow page you should find them. They're located in hillsboro.
They have audiology office, IEP (individual education program) many people there will support you and help you what to do.
There's deaf pre-school in Groner Elementary School look it up in yellow book as well, its in hillsboro too. The teacher uses sign but IEP will provide any therapy your child need like speech therapy during school hours. There's Oregon school for the Deaf in Salem. But I went there in middle school I only lasted 3 months because I didn't like how all teachers, staff and volunteers acts in there they're totally unprofessional and the education in that school is very low and basics most kids have 4th grade reading level and its rare for kids to graduate there with high school diploma they would give them specialized diploma. I highly suggested you to send kiari to mainstream with special deaf programs school they have it in Groner's its great there. If you have any more questions, you can email me, I have email address on my profile information :)
Best of Luck!
 
Forgot to add something. I know she's still baby, so I remmeber when my mom found out that I was deaf at 1 and half year old so what she did was bringing me to sort of class with couple other deaf babies and their mothers (or dad whoever have time to bring baby to class) they would do whatever to help you, for example, signing, speech therapy, listening therapy, hearing aid or CI support, anything. And teacher would let ur baby play with other babies while educating parents about hearing loss. It was nice and sometimes babies happened to go to same school and grew up together! (That happened to me I grew up with 5 other girls since we were baby till middle of high school I moved to Seaside and now Eastern coast haha)
 
I found out that NW Regional has already planned a lot of learning events for my daughter after she gets her CI. At minimum she will be attending a weekly class to help her with her hearing and speech development. I will definitely be looking into additional ways to help.

Skullchick, I will probably be in touch with you. You seem to know my area pretty well and I can probably learn a lot from you. Thanks
 
here's Oregon school for the Deaf in Salem. But I went there in middle school I only lasted 3 months because I didn't like how all teachers, staff and volunteers acts in there they're totally unprofessional and the education in that school is very low
Click to expand...
On the other hand, the Early Intervention programs (eg preschool and kindergarten) at Deaf Schools tend to be REALLY good.
I'm not a professional, but if I were you, I'd ask for the whole hog in services. (eg hearing and speech, Sign, maybe even some auditory verbal therapy)
Early intervention is KEY!!!!!!!!!!!!!!!!!!!!
 
SkullChick said:
Hello! I was born and raised in Oregon, you're actually in wonderful place with plenty of support for people with hearing loss. First thing first, contact NWRESD I'm not sure what it stand for I think NorthWest Regional Eduaction S? District try look that into yellow page you should find them. They're located in hillsboro.
They have audiology office, IEP (individual education program) many people there will support you and help you what to do.
There's deaf pre-school in Groner Elementary School look it up in yellow book as well, its in hillsboro too. The teacher uses sign but IEP will provide any therapy your child need like speech therapy during school hours. There's Oregon school for the Deaf in Salem. But I went there in middle school I only lasted 3 months because I didn't like how all teachers, staff and volunteers acts in there they're totally unprofessional and the education in that school is very low and basics most kids have 4th grade reading level and its rare for kids to graduate there with high school diploma they would give them specialized diploma. I highly suggested you to send kiari to mainstream with special deaf programs school they have it in Groner's its great there. If you have any more questions, you can email me, I have email address on my profile information :)
Best of Luck!
Click to expand...

Pls...the deaf schools are not entirely to blame for everything. There are much much deeper issues within the children and their families to why these children arent on academic level. Just a FYI ..thank u.
 
dragon_image18 said:
Thanks for the advice. I have kinda always wondered the purpose of our EI adviser, since it didn't seem like she did much other than monitor my daughter's developmental progress. I will definitely be looking into some other programs that may be available in my area.
Click to expand...

Hmm, you have a case manager and she hasn't contacted the local school district to get them to send out a teacher for the deaf/hoh?

In my experience my daughter ST who was from the local school (small school around 500 kids K-12) saw my daughter weekly during the school year for speech, she came out at the same time as the EI teacher, which if your getting EI services you should have a teacher who comes out for 'play therapy'. When Mary who has down syndrome plus a moderate hearing loss was around 2 we started to use sign lanugage, since this ST had taken a class in SEE we used words from that to help convey what she wanted. Within a year this therapist had contacted the local education district to get services from a teacher for the deaf/hoh.

At the very least you should be having some contact with a teacher of the deaf/hoh even in EI. The education district that our teacher for the deaf/hoh came from was formed by small and medium sized schools in a 2 or 3 county area I think. They provided not only tod/hoh but an audiologist and even a behavior specialist among other things. even a lawyer who would tell the schools representative that yes they did have to provide ____ (fill in the blank)

Please if you havn't had contact with a teacher of the deaf/hoh contact your case manager and request one. If just phoning doesn't work or you begin to get the excuses write a letter making the request. Learn now that you need to write letters at times to get what your child is entitled to.

Check out education law sites like Wrightslaw Special Education Law and Advocacy , such places can show you how to write request letters and things like that. Many times the services put into the ISFP can come down to your knowledge of the law and your being able make those requests in ways that the district will be out of compliance if they don't come up with a really good reason they refuse something. Just because they don't/havent ever provided something is not a valid reason.

Ok Ok I'll stop. (can you tell I've learned at the school of hard knocks? LOL)
 
dragon_image18 said:
I found out that NW Regional has already planned a lot of learning events for my daughter after she gets her CI. At minimum she will be attending a weekly class to help her with her hearing and speech development. I will definitely be looking into additional ways to help.

Skullchick, I will probably be in touch with you. You seem to know my area pretty well and I can probably learn a lot from you. Thanks
Click to expand...


I jsut finished reading hte blog. She is a sweety. :)

I was just wondering why they are waiting to do intervention until after she has her CI? She should have been or be attending whatever they offer for 'classes' now to. EI doesn't start after the child receives a CI or HA once referred they should be getting intervention, not monitoring.

I wish the little soon to be cyborg the best. I'm sure it will be an awesome journey for her and for you. :)
 
Thanks for all the info Jag. Seems like we have to have a long talk with our EI adviser on Tuesday when she comes to visit again. We were not aware that our daughter should be attending the classes prior to CI, we thought it was only for her benefit after she got the implant. I guess it seems that we are already behind in the process. Wish I would have found this place sooner.

Right now we are just waiting for the surgeon's office to call back with the appointment for the surgery. We have already ordered the CI.

I appreciate everyones help here. This is by far the best forum I have ever visited in my life.
 
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