Questions answered

This is for S.L with tactile love.

Please feel free to ask any questions.

What is an SSP?

An "SSP", or Support Service Provider, is a professional trained to assist deafblind adults with activities of daily living such as grocery shopping, reading mail and paying bills. SSPs also assist the deafblind individual to access the community and attend events by providing visual, auditory and environmental information. source

What is an intervenor?

An Intervenor mediates between the person who is deafblind and his or her environment to enable him or her to communicate effectively with and receive non-distorted information from the world around them. An Intervenor acts as the eyes and ears of the person with deafblindness. source

What is tactile?

In general, Tactile American Sign language (TSL) is American Sign Language (ASL) that is signed into the receiver’s hands. source


What is Deafblindness?

Deafblindness is a unique and complex disability that involves a substantial loss of both hearing and sight. Those who have congenital or early adventitious deafblindness have lost their sense of sight and hearing either prenatally or shortly after birth.

Someone who is deafblind is not necessarily completely deaf or completely blind. Rather, there is not enough of either sense to gather reliable information about their surrounding environment . source


What is the difference between an SSP and an Intervenor?
An SSP provides support and assistance to a deafblind adult to be as independent and active as possible in their home and community. They do not make decisions for the deafblind adult but take direction from their client. They provide information that is lacking due to the combined vision and hearing loss so that he/she can function as independently as possible and make their own decisions. SSPs are strictly a support service. There are no specific goals they must follow.

They do not perform personal or medical cares, housekeeping or moving of the deafblind person's possessions. They are essentially the "eyes and ears" for the deafblind client. The deafblind consumer directs the service provision as needed within the role of the SSP.

An Intervenor works with children and youth through age 21, assisting the young person with developing life skills and awareness of the community around him/her. They usually follow a goal plan developed by the child's parents, case worker and other professionals involved. Intervenors may be found in both the educational system as well as home and community. The Intervenor is involved in the child's life and family and is an integral part of the child's home or educational teams.
Intervenors also work with the families, assisting them in understanding their child's deafblindness, developing expectations of what is age-appropriate for a deafblind child, and may teach communication skills, including sign language, to the families. This improves communication with and involvement of the deafblind child in his/her family. source

An interpreter signs to me what the hearing person says as well as relay to the hearing person what I signed. However I am more apt to go with an tactile interpreter that can tactile with me rather than just sign because I do miss out on a good number of signs. I'd end up asking the interpreter to sit so much closer to me so I am able to catch what he/she says. It's either that or I squint my eyes. I just got a new pair of stronger prescription glasses late yesterday afternoon and it seems to be helping with reading but not for the long distance perception.

When I MSN with my sunshine, I go on Messenger to chat with my sunshine which happens to be my youngest sister. MSN is easier for my eyes as I can ask others to increase the font size hence easier reading.

My youngest sister and I chat daily, we are three years apart in age however I feel we are oftentimes twins because we start and end our sentences. We share same thinking. My oldest sister, bless her heart, she is like my youngest mother even though we're only a year apart. I'm blessed to have close sisters in my life.

Dear S.L, I hope I answered your questions and please feel free to drop in the comments box to ask away more.

Tactile smile with love,
Patty oxox

The Ophthalmologist's visit

The Ophthalmologist
and his office called. They booked an appointment for Feb 13th at the Ivey Institute of Ophthalmology in London, ON. I'm very excited, scared, nervous and overwhelmed all in one.

I don't know what to expect or how to respond. When I learned at the University of Waterloo Ocular Health Dept that I had RP, I was calm and asked questions. However internally, I was screaming and fighting with my emotions. Just so fortunate that I had my DH with me. If DH wasn't there, I would've just bolted from the appointment walking blindly around because my pupils were expanded from the eyedrops.

This time around, DH will be there as my DH. I'm putting in a request for a SSP or intervenor. No more depending on DH to tactile for me because I want emotional support, DH to hold my hand.

Bless DH's heart, he tactiles for me and he provides emotional support. I'm so blessed to have him in my heart.

I'll be honest, I'm MSNing with my sunshine at the same time I do this blog. I simply must have daily dose of sunshine every day otherwise this world would be so dark and dreary. Sunshine knows who she is.

Tactile smile with love,
Patty oxox

Introducing myself...

I'm going to start off this blog introducing myself to you all.

First and foremost of all, I'm a human being.

I am Deaf and slowly going blind. My deafness is genetic however my blindness is not. Deafness, in my family, is embraced because it is what makes us unique. Deafness has been passed on for six generations. We embrace our deafness as it is our identity. In sociology we learn of id, ego and superego. We don't need to know that deafness defines me. I wear it with pride. I sign with pride.

My blindness creeped up to me slowly. At night, I couldn't see well. I brushed it off. Family members would wave at me at the sides and couldn't get a response from me until they stamped the floor. They'd accuse me of being lazy or tired to reply. Of course, when accused, one defends back. It's second nature. I had a few bad spills the past few years. Going on a trip to see a very close personal friend of mine, I had a bad spill that made me realise the severity of my "eyesight" problem.

I started depending on my husband, telling family members not to move furniture around unless I was present to remember which furniture was where and so on. I'd bump into things and I'd get bruised really easily.

My husband really urged me to see a retinal specialist and this was how they determined the severity of my blindness. They found out I had retinitis pigmentosa. Of course, at first, I was glad to find out the answer to all my concerns and later on, I was overwhelmed with emotions.

"What ifs, what happens, what to dos," and so on.

I can't depend on my husband, he is my husband. He's neither my SSP nor my intervenor. Bless his heart, he tactiles with me.

I've got to meet this person from the CNIB in the New Year come Jan and hope things goes well.

Next post, I'll be typing a lot more.

Tactile smile!
Patty ox