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Blind and Visually Impaired Community

Full History - 2022 - 05 - 02 - ID#uh59lf
5
Making friends (self.Blind)
submitted by bayjule
My husband and I are 31. He was diagnosed with a rare eye condition (bullseye maculopathy with cone dystrophy) in his mid-20s. It’s progressed to the point that he’s legally blind and reliant on his peripheral vision. I think it might be helpful if he connected with other people around our age who are going through or have experienced what he is, and for us to meet other couples as well. Any suggestions are appreciated. (We live in San Jose, California)
NoConfidence_2192 4 points 1y ago
Have you reached out to $1 for vocational rehab yet or your local blind services organization for basic life skill or orientation and mobility training (probably $1 in your area but that is just a guess) yet? Participating in those types of classes and training can not only help us develop skills we need but also provide opportunity to start building community with those in similar situations in our area. Many of those services are starting to gear back up in California so in person classes and events may take some time yet. Going blind in the age of Covid has been more complicated than I would like. Other than having supportive family, the biggest things that have helped me are:

1. Getting the white cane, learning to at least get basic use out of it, and forcing myself to regularly get out of the house.
2. Finding this community here on Reddit. We are here to support each other...and I cannot begin to tell you the number of, "Wow, they get it," and "OMG it's not just me!" moments I've had since finding this community.

I affectionately refer to my white cane as Tap-Tap the Freedom Cane. It took me much too long to admit I needed one and even longer to get over being too self conscious to use it. It got to the point that I almost never left the house. I felt trapped and isolated. I knew I needed the cane but having some sight remaining was too worried about what real (fully) blind people would think to be willing to use it. I fortunately have family with experience in this are willing to apply some tough love when I needed it (a blind uncle, told me I was an idiot then called my almost 80 year old parents on me). Getting the cane then getting out and starting to use it, gave me back a lot of the freedom and independence I had been denying myself.

What I needed most was the cane and to start using it. What the 2 of you need may be different (may be a bad habit but I always consider the needs of one as the needs of the couple). If the cane would do you all good it's not a bad place to start. Orientation and Mobility training can be a good place to help identify and acquire the right type of cane so you'll want to get that started as soon as you can. Being California, with services just starting to ramp back up, it could take time to get started. If it looks like it's taking too long you can always go the $1 route. They are very basic and non-folding but not bad canes to learn on.

If you all find yourselves needing help getting some of those started the physician that diagnosed him should be able to provide referrals to the organizations that most commonly provide blind support services in your area.

By the way we are all here to help each other and it's not only blind and visually impaired here but some spouses and family members as well

Last advice for the night: Give your husband a big hug, tell him you love him, and have a good night...then repeat daily as desired.
TechnicalPragmatist 3 points 1y ago
Have you been to the light house for the blind in san francisco. They may hold social groups or activities that he can participate in. Also look in to Enchanted Hills and see if they have camps for the blind adults or even family, and you can go with your husband for those sessions. For the other ones he could go alone.

Also have you contacted Dor or vocation rehabilitation services they may be able to help your husband adjust and adapt. Mobility training will be excellent, learning how to use a white cane and to get around with it. Also ILS or independent living skills training, where he will learn to do every day tasks, but as a blind person.

Because he is losing his sight he should learn assistive technology, because as he becomes unable to use technology and computers or his cellphone as well as he use to there are other accessible ways and screen reading programs to use and help him accomplish the same thing he was before.

I suggest the training as soon as you can.
KillerLag 3 points 1y ago
Have you guys contacted your local rehabilitation center? The staff might know of some support groups for that, or other social groups.
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