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Welcome! Please Introduce Yourself

National Child Count

Welcome! Please Introduce Yourself

Let us know who you are, what you're interested in, and how others might help! We hope these forums will be a helpful resource for all of you. If you have any questions or need any help regarding the forum let us know!

Mark Schalock

Posted Jun 17, 2013 by Mark Schalock

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Comments (7)

Hello....stumbled on this website and happy I did. Can't wait to surf through even more! Anyway, I have an older brother, born in 1965 with CRS. He is deafblind and functions as a 3 to 5 year old. He is otherwise in okay health, just the normal things that others in this condition are seeing.

I want to meet others and bounce ideas off of them. I am the legal guardian of my brother and have been actively participating in his life in only the last couple of years (yes, shame on me). Anyway, he lives in a group home, which i must say, has pretty nice staffing, he seems to enjoy all of them. The issue comes when he has to get out in the morning to go to the ARC, he hates the cold (who can blame him) and when suggested that he get to stay home on cold days, they did not like the idea (They being the ARC).

Anyway, what i am looking for is contacts/information/what is the aging population with this disease seeing, what is best for him, what will make him the happiest.

Thanks.....i will be back!

Christine Quackenboss

Posted Nov 12, 2013 by Christine Quackenboss

Hi Katie - Thank you for sharing your story. Always having to train personnel because of new schools, teachers, etc is the bane of the low incident disabilities, and even more so for deaf-blindness. The frustration becomes compounded when personnel have difficulty understanding the unique needs of children who are deaf-blind. As our new website continues to grow, we hope it fosters and strengthens the deaf-blind network which allows all of us to contribute to the community, the resources needed to meet these challenges. We look forward to your insights.

Randy Klumph

Posted Sep 5, 2013 by Randy Klumph

Hi, I am a parent to a child with deafblindness, as well as many other things that contribute to our very complex situation. He has a rare disorder, Peroxisomal Biogenesis Disorder in the Zellweger Syndrome Spectrum (PBD), which causes him to have multiple secondary diagnoses (e.g. Cognitive & physical disabilities, adrenal insufficiency, bone loss/bone formation issues, bleeding problems, liver dysfunction, sensory defensiveness, feeding/drinking issues requiring g-tube placement, etc.).

I am very active in all aspects of his life, including all health & educational decisions. I have had many struggles with the school system & individuals working with my son having a lack of training & knowledge about deafblindness. The individuals working with my son do not appear to understand how dual sensory impairments can significantly impact a child or a child with deafblindness and additional disabilities &/or health issues. I am & have been frustrated with this for several years. I do attend conferences for the disorder that my son has, which includes sessions led by professionals about hearing impairments, vision impairments, educating children with deafblindness, etc. All children with PBD have hearing and vision impairments. I also am very active in an online support group for the disorder he has. I have decided to join a few groups here in hopes to gain even more information & knowledge for myself but also to help others be able to help my son.

Katie

Katie Sacra

Posted Sep 5, 2013 by Katie Sacra

Hello Maya. Thanks for your question. What types of resources are you looking for related to your son? There are resources related to definitive diagnosis as well as resources related to communication and education. Not all vision issues in concert with deafness are caused by Usher syndrome. Current data shows that in populations of children identified with hearing issues or deafness, 10% will have Usher syndrome. There are specific visual tests and retinal scanning that can be done to confirm if the vision issues are related to RP.
Currently there is an body of information related to scientific efforts in the area of Usher Syndrome. There are a number of screening tools available that can provide a definitive diagnosis of Usher Syndrome. The Coalition for Usher Syndrome Research has good information including very detailed articles about screening and the advances in screening. You might look thru some of their resources.
http://www.usher-syndrome.org/index.cfm/page/Learn-More-About-Usher/pid/10248
http://www.usher-syndrome.org/index.cfm/cd/NAA/cdid/11235/pid/11034

http://www.usher-syndrome.org/index.cfm/cd/NAA/cdid/11339/pid/11034

In Beijing, there are retinal specialists at the Sekwa Eye Hospital. The retinal specialists there have participated in international work funded through the Foundation Fighting Blindness, especially in the area of Usher Syndrome. They may prove to be a good resource.
http://www.sekwa.org/windows/index.htm

In the United States there are a variety of medical institutions that do Usher screening. Here are two that have extensive history with Usher Syndrome Research.
This first one is the University of Iowa.
http://www.healthcare.uiowa.edu/labs/morl/otoscope/home.html

This is the medical hospital at Harvard.
http://pcpgm.partners.org/lmm/tests/hearing-loss/usher

If you are looking for resources that address the education and communication needs for your son, you might start with our selected topics on Usher Syndrome.
http://nationaldb.org/library/list/88

The information in this list of resources is general but does describe early needs of children diagnosed with Usher Syndrome. In the US, children with Usher Syndrome are served largely in their local schools or sometimes in state schools for children who are deaf or blind, guided by a program that considers their sensory issues. If you were to come to the US, do you know where you would go and would it be for an extended period of time? How would you describe the “right” resources for your son and your family at this time?

Gail Leslie

Posted Aug 29, 2013 by Gail Leslie

Hi, I am a parent of a 4 year old kid with bilateral profound deafness. Recently, he has started to complain of vision issues in dim light. Since he started to sit and walk very late, we are concerned about Usher Syndrome. I am currently based in China, but would not mind flying to US if I could get some tips on where to find the right resources.

Maya Agarwal

Posted Aug 27, 2013 by Maya Agarwal

Thanks Lyn. We really only scratch the surface of using the child count data right now. Looking forward to new and user friendly uses in the future! Mark

Mark Schalock

Posted Jun 27, 2013 by Mark Schalock

Hi Mark:
Just wanted to let you know how much I appreciate the flexibility of the database -- so that you were able to populate the EI publication! It is very useful -- not just to look at Oregon, but also to learn more about other "like" states! So thanks!
Lyn

Lyn Ayer

Posted Jun 26, 2013 by Lyn Ayer

NCDB : The Research Institute : Western Oregon University : 345 N. Monmouth Ave. : Monmouth, OR 97361
Contact Us: 800-438-9376 | info@nationaldb.org

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