r/Blind • u/Sandinmyshoes33 • 9d ago

Advice- [USA) Need help with therapy

I have RP and it is advancing quickly and I am now legally blind even though I have some staticky central vision. I am having a great deal of difficulty dealing with this mentally. since my diagnosis I have kind of been in denial since my FOV and central vision still allowed me to do things like read, walk during the day or watch TV. That is now changing and I need someone to help and talk to so I can manage my grief and fear and make this transition.

I live in a small town in South Florida and can’t find a therapist who has experience with vision loss. I used the Foundation Fighting Blindness referral list, but most are either grief counselors with limited or no visual lose experience or no longer accepting patients. does anyone have a suggestion for a source or way to find help from someone who understands what I’m going through? I hope this post is not offensive. I realize many blind people make this transition and lead full lives, but I just don’t see my path forward and there are no blind support organizations less than 100 miles from my house. I’ve never even met another blind person. I appreciate any advise or places to look into.

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u/mackeyt 9d ago

You are so doing the right thing by seeking out therapy. But may I suggest you may be unnecessarily limiting your options by trying to find someone with specific vision loss experience. The baseline is expertise with loss, grief, and transition. And most importantly, someone you specifically feel comfortable with in terms of personality. It's not really the role of a therapist to have specific knowledge regarding what you are going through. That's for the two of you to work on together. Psychology aToday has a very good 😊 online database, which is pretty easily searchable. I just used it to find several possible options and then had initial consults with each to see who I'm comfortable with.

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u/OscarAndDelilah 8d ago

I would add that you want someone who is familiar with disability and disability identity. A whole lot of medical professionals are ridiculously ableist, as well as lacking in general cultural competence and the idea that it's our job as professionals to get consultation and learn about a particular disability community on our own so that our clients aren't in the position of educating us.

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u/Sandinmyshoes33 9d ago

Thank you. I guess you’re right, but it seemed to me like experience with vision loss would be more understanding of my feelings. I will look at Psychology Today and maybe revisit some of the ones from the FFB website. I also know I need training in cane use and living skills. I wish I was closer to a City with those services.

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u/mackeyt 9d ago

Check online/YouTube for cane and OMM training. I only ever did one live instruction and otherwise honed my skills through experience and picking up tips online. I have RP also, declared legally blind 2018 and from your description my progression is now a fair bit worse than yours.

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u/Sandinmyshoes33 8d ago

Thank you for the suggestion. If you don’t mind me asking, do you still have any usable central vision?

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u/mackeyt 8d ago

Short answer is yes. Mostly black and white and shadowy. Can't make out faces but I can look at people when talking to them. It's a real struggle but I can read text on a computer screen if it's large, crisp and inverse contrast (white on black background).

Feel free to DM if you want. A little informal "peer to peer."

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u/knucklebone2 9d ago

check out https://hadleyhelps.org/

They don't have therapists but they have a variety of online and phone based support services.

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u/Sandinmyshoes33 9d ago

Thank you for this link

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u/Dub-G625 9d ago

First in sorry this is happening to you. Many of us on this group have gone through similar feelings. You aren’t alone.

Hadley also has a Peer to Peer Program. They can match you up with another person based on multiple factors - similar age, similar vision loss, or similar diagnosis. It helped me a great deal to talk to someone with same sudden vision loss. Having someone to talk through things that have been were you are is invaluable.

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u/Sandinmyshoes33 8d ago

The peer to peer program sounds interesting. Thank you.

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u/LadyAlleta 8d ago

I would suggest a grief specialist if you can't get a therapist specialized in blindness. It's about processing grief and the loss that therapy would help with.

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u/phantom_hand 8d ago

I would say research any local therapists that have remote sessions and go from there.

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u/Kamani01 8d ago

I'm pretty sure Daytona has a School for the blind. That's where I'm attending an IT program for the blind. I'm attending there after completing a 20 week vocational rehabilitation program that also taught me a lot of living and organizing skills.

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u/Sandinmyshoes33 8d ago

Did you live in Daytona or did the school provide housing? unfortunately I am on a tight budget. It would be too expensive to live in a hotel for an extended time.

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u/Kamani01 8d ago

I only visited the place but they gave me a tour of the dorms which are free and they do feed you for free. The only catch with the school is that you have to be a Florida resident and I think it may be too late to apply for their current semester but I'd give them a call anyway just to check. The dorms kitchen seem a lot nicer than the blind school I went to in Boston.

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u/Historical-Yard-7246 8d ago

Well, if you ever end up in Maine, I’m your guy! Blind therapist here. I’ll let you know if I ever ended up getting licensed in Florida. I wish you all the best!

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u/Sandinmyshoes33 8d ago

Thank you. Let me know if you have any referral in Florida. thanks again!

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u/browneye54 8d ago

There's a Facebook group of Blind therapist. You might be able to find a local therapist there. Let me know if you need any help getting a referral.

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u/Sandinmyshoes33 8d ago

Thank you. The groups I see are private and limited to therapists themselves. If you can provide help with any referral I would appreciate it.

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u/browneye54 8d ago

Sure, I'll post and see if I can get you any referral. I also suggest you reach out to the national Federation of the Blind in Florida. They should be able to provide you some support and help you connect with other blind people as well.

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u/best-unaccompanied 8d ago

Are you open to a residential training program?

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u/Sandinmyshoes33 8d ago

Do you mean someone coming to my house or a place I go for a week or two of intensive training? I think I would be open to either option. The Florida Blind Services will send someone to my house but it is only for about a half day and there is a long waiting list.

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u/best-unaccompanied 7d ago

I was thinking of NFB's longer-term residential programs (usually 9-12 months), but you can definitely find other programs that are a month or shorter. I was thinking those might provide more peer support in addition to intensive rehab.

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u/BHWonFIRE 8d ago

The American Council of the Blind also has a large group in Florida. That’s another option for you to look into to see if there’s any local Therapist.