Hi! My name is Ginny Paja-Nyholm and I have Usher Syndrome (US) Type 1. With my sighted Deaf spouse Ward, I have a 5-year-old KODA son named Davon. I am looking for MORE parents who have US in spite of the fact that I personally met or knew some mothers or fathers who have US and are married to sighted Hearing or Deaf spouses. With this very first blog, this would eventually open up a discourse on communication and raising children among this US population. Lately, I have seen many successful US folks such as Christine R., who pursues Deaf blindness up to par and Kevin F from Canada who is an US speed-skater (both are from the neighboring Canada!) with a deep passion in their professions! I am pretty certain that there are MANY successful American US folks out there and I could come up with a lot of names such as Bruce Visser, Jellica Nuccio, Arthur Roehrig, Jeffrey Bohrman, Harry Anderson and so on! Yet, there are a LOT of these folks whom I look up to from the walks of life!
But my favorite group is the PARENTS because I have an affinity with them at this point with the given boost of technology! This is why I have "heard" and 'seen" the anecdotal stories -- sometimes scary for US parents, including myself, who can't find their kids beyond the tunnel vision -- and need to raise this sensitive topic to the next level especially on the Deafblogsophere -- yup, with a real passion because I have it and live with it!
Is there any US parent or spouse out there to share their life experiences with US? I am working on a vlog project for US parents and be on a lookout for this very soon!
Regards,
Ginny Paja-Nyholm
8 comments:
Yes, that's neat. I knew a few who has Usher Syndrome. Welcome to the DeafRead.com Blogs/Vlogs. Look forward to your next vlog soon.
Hi! My husband has US and I am Deaf. We have 5 yrs old KODA boy, Harry. I can relate to your story. I am wondering about other US spouses who have children too. Hopes to see your next vlog.
Jana and Suzanne!
Thanks for your words of encouragement for me to blog/vlog on the rarely-used words of Usher Syndrome!
Sometimes some people in general think that Usher Syndrome is "contagious" and they tend to avoid this issue or be around the US folks. I think otherwise because the US folks beat the odds in an unique way and i see them as UNIQUE!
Bravo, bravo!!
I am THRILLED beyond imagination to find another blog by an Usher's... so tough to find out there. I admire you for coming out and wanting to connect with parents who have Usher's... what a way to share resources and information!
I know one sassy hot mama with Usher's in Texas - Kim Power-Smith! She gave a workshop at AADB conference the past summer about Parents with Usher's and I watched it and cried a lot. Very inspiring and positive.
I am not sure of her email address but you could email aadb.org and put in a request to contact Kim.
Look forward to reading more.. and do post stories - funny, sad, frustrating, happy... about ur experiences as a parent with Usher's.
I'll mention your blog on my blog - if that's ok???
Tactile luv, Ginny!
Christine
Hello other US parents..
A friend of mine e mailed me this morning and shared this blog. It's a great beginning to form some kind of resources for parent(s) who have US and children.
Count me in! My name is Suzi McGeath from Indianapolis, IN. I have US, married to a Deaf man who is sighted, and have two children (girl, 10 and boy, 5 KODA and sighted).
I plan to spread this information to more than a few close friends of mine, who also have US, are married, and children around the same ages as mine (more or less).
I'm thrilled you opened a GREAT "can of worms".
Thank you!
Regards, Suzi McGeath
Hi Ginny - this is cool! I'm glad to see more and more DB bloggers out there.
A couple DB parents come to mind:
My sister, Deb. She lives in Yakima, WA which is about 2.5 hours from Seattle.
John Lee Clark of Minn. His website is www.thetactilemind.com
Julie Dunn Somers of Chicago (I believe). I don't have her contact info. I'm pretty sure Suzi McGeath may have it.
My friend send me e-mail that led me to this blog. I'm not surprised that somebody has came forth and trying to connect to other US parents. I'm happy and am all up for it!
My name is Renee Ingalsbe, and I have Ushers Syndrome Type I. I am married to hard of hearing man with our two beautiful children, 5 at school and 23 months old at home. I'm not sure what Sighted and KODA mean? It is obviously that I am way behind on US culture than everybody else! I hope somebody can help explaining what those are. :)
I am looking forward to read those blogs of yours in the near future! Will I be contacted via e-mail when there's new blog posted or do I need to check this back again?
Thanks!
Renee
Welcome, Suzi!!! Once again, thanks so much for the ongoing encouragement and support towards the blog/vlog on Usher Syndrome!
Christine! Sure, you can mention my blog on your blog! Oh, yeah -- Kim Power-Smith, I have seen a few articles on her!!! A fabulous and lovely lady!
Bruce! A big hello to you in a long time since our Gally freshman period!! Give my regards to your wife Christine!!! Thanks for these names you just brought up -- it gives me MORE motivation to sit back and reminisce about what we, the US parents, had or have gone through with our kids!!!
Renee-- that is all right! Welcome to the Deaf Culture! In the Deaf community, KODA stands for kid of deaf adults ...can be deaf or hearing. Sighted means can see normally while the US person cannot see beyond the tunnel vision. Get it?
We also welcome US folks and Sighted significant others --unmarried or married! For those US folks who are single, please do JOIN!!!
Please pass this blog to your friends, family and anyone associated with US!
Thank you so much!
Ginny Paja-Nyholm
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