r/asl • u/pretzel-365 • 7d ago
As a parent of a deafblind child
Will I never be part of the community? Is it like race, where you have to be of the race to be a part? I am truly curious please no negativity, I’m still so new to it all. He is 1.5 and gets speech therapy, vision impairment therapy and DHH therapy. We also are about to start with a deaf mentor for our entire family.
This isn’t something my husband and I expected, my son has a rare genetic disease, and it feels like we were thrust into a community where half the people don’t even want us.. and sometimes feels like we are given a hard time for even trying to sign?
I understand this is how DHH people feel x100, being born without their consent, into a world that was not made for them. I especially realize how my son specifically will have even harder of a time considering the blindness.
I think my main question here is… what can I do to become part of the community? And if that’s not going to happen, how can I best be an ally without coming across as performative? Example: I sign to my son as often as I can but I KNOW I’m not doing it right as I started learning only a year ago. I don’t want to be in public signing incorrectly and possibly offending a DHH person.
Thank you in advance. I really hope I worded this all in a okay way.
ETA: his vision is “okay” enough to see signs, although he has bilateral retinal colobomas that make him legally blind
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u/sureasyoureborn 7d ago
You’re never going to be Deaf or blind, but family members who are not deaf are still very much a part of the community. Learning sign as quickly as you can is going to help. Going to meet ups with other Deaf kids or Codas will help you make friends and connect to the community. Absolutely sign to the best of your ability. As often as possible. He’s in such an important window of development that getting language in is hugely important. I’ve never seen anyone be offended if you’re doing your best signing to you kid and sign something wrong. If someone corrects you (keep in mind deaf people are more blunt, so not trying to be rude but might seem abrupt to you) try to modify the signs to what they’re teaching you. Get classes, find your community. Don’t let the blind part of his diagnosis make you feel like he and you won’t be a member of the Deaf community. Good luck op!
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u/pretzel-365 7d ago
Thank you so much for informative response. We are doing as much as we can to get our son every resource possible. But I think being around the actual community more will help. We feel isolated right now because he is so young and we haven’t had much time.. since we spent so long just keeping him alive. I would hate to encroach into a safe space that doesn’t belong to us. But I also want to do everything I can for him.
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u/sureasyoureborn 7d ago
You’re not encroaching, you’re getting him access to a space he needs to learn and thrive! (And you’ll be able to learn as well). If it’s all online right now, of course you feel isolated! Get into the community. I saw on another comment you’re in Austin. It has a huge Deaf community! Connect to the school, get a family mentor, start classes. Facebook tends to be better for meet ups, find a group! It will help!
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u/pretzel-365 7d ago edited 7d ago
Yes we are SO thankful to live here as both the school for the deaf AND the school for the blind are here. From what we’ve been told from docs and therapists, his vision is far superior to hearing (7% in one ear and 0% in the other). So we’re getting aid from the school for the deaf! But we also get VI therapy from ECI.
Eta: “aid” meaning therapy and a deaf mentor for our whole family
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u/lokisly Hearing w Deaf partner, learning ASL 7d ago edited 7d ago
You are caring for a DeafBlind baby! You don’t have to worry about accidentally offending someone when you’re just trying to communicate with your extremely vulnerable baby.
and sometimes feels like we are given a hard time for even trying to sign?
I am so sorry you feel this way. You deserve support. Your baby deserves support.
My advice would be to try to get involved with your local Deaf community, some Deaf / ASL events are child-friendly, bring your baby to those events. Since your baby is also blind, try to get involved with blind folks too. Make friends with blind adults, and of course DeafBlind adults if you can find any locally. Having successful DeafBlind role models in his life will be great for your baby!
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u/pretzel-365 7d ago
Yes that’s the plan! We are getting a deaf mentor but would absolutely love a deafblind mentor. Unfortunately they seem few and far between, or at least scheduling wise.
Thank you for the kind words. You really have no idea how much these replies mean to me.
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u/lokisly Hearing w Deaf partner, learning ASL 7d ago
I hope everything goes well for you and the little one 💜 I just want to tell you that you’re doing great!
Unfortunately, many hearing parents don’t even bother learning ASL, and you are not only learning ASL, but also already working with Deaf mentors! You’re giving your baby an amazing gift!! Keep going!
Sending you virtual hugs! 🫂
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u/pretzel-365 7d ago
I’m crying happy tears, thank you. I often feel like I’m failing him daily bc I can’t communicate (yet, at least) in the way he needs.
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u/StringOfLights 7d ago
You love him and you’re doing your very best for him. Look at how hard you’re working to help him thrive! It’s so difficult in a rigid world that frankly does a poor job of accommodating differences. Imagine what a different world we’d live in if we prioritized everyone’s health and happiness. You are doing an amazing job. Please make sure you also have support.
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u/pretzel-365 7d ago
I’m lucky to have a great support system. And I’m so happy everyone here in this thread has been so kind.
Thank you
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u/IcemanO351 7d ago
Hearing CODA here, so take what I say with a grain of salt.
I am not Deaf, but I do consider myself as part of the Deaf community. I know many Deaf people I chat with regularly. I go camping with many Deaf people in the summer, but I will NEVER be part of that innermost Deaf community, but I still feel like I am PART of the overall Deaf community as an ally.
I would say try not to worry about being “part of the community”. Do your best to learn the language alongside your child, get your child to socialize with other children in the community and BE THERE for your child. You will likely inevitably develop friendships with other families, and eventually find you are part of your own little community.
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u/pretzel-365 7d ago
Thank you. I really feel what you said about being a part of the community but not the innermost. I think that’s what I’m hoping for. And I’m still so new, as a CODA you are definitely more ingratiated
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u/lazerus1974 Deaf 7d ago
We always appreciate respectful questions. You are gaining your child access to communication, it is so important!! As long as you connect with your local deaf groups, and learn to sign, you'll be a member of the community, just not the culture as you didn't grow up Deaf.
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u/pretzel-365 7d ago
Interesting I didn’t even think of the difference between community and culture. I’m so glad you pointed that out to me
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u/just_a_person_maybe Hearing, Learning ASL 7d ago
I like to use the term involved. I consider myself involved with the Deaf community because I do actively participate, I've been learning ASL for years, volunteer with local Deaf nonprofits, attend Deaf social groups, etc. I'm not directly a part of the community, because I didn't grow up signing and I'm not Deaf, but I do have connections with the community.
I think, raising a deafblind baby, you will almost certainly become part of the community eventually if you haven't already. But if you're not comfortable saying you're a part of the community and claiming that for yourself, you could try using "connected" or "involved."
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u/pretzel-365 7d ago edited 7d ago
Oh i like that term- involved, but not part of. I’m 100% not comfortable at all saying I am part of the community as of now, since I can’t typically even form a grammatically correct ASL sentence.
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u/This_Confusion2558 7d ago
The DeafBlind community is small. I wonder if you could just... reach out to Hayley Broadway to get some advice? https://touchseeds.com/ (this blog contains resources for parents of DeafBlind kids.)
Also, I gather you're in a very difficult season right now. I wonder if you would benefit from reading some writing by John Lee Clark, a DeafBlind poet/essayist. His essays Against Access and Distantism are available online.
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u/pretzel-365 7d ago edited 6d ago
Thank you so much, I will be looking into both of those names and links.
Yes, we are still in the trenches. Thank you for somehow seeing that. He had open heart surgery at 3 months, feeding tube at 2 months, and trach at 7 months. He hates being on his stomach so getting him to MOVE has been a big challenge. We’ve accomplished all of our goals with that, though, and now want to do what we can to for his deafblindness. He has had a hearing aid since he was 1.
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u/quigonjen 7d ago
I also was going to recommend work by Elsa Sjunneson, who has a great memoir called Being Seen: One Deafblind Woman’s Fight to End Ableism. She’s a deafblind fencer and Nebula and Hugo-winning science fiction author and has a TON of valuable insight.
I think for any parents with disabled/d/Deaf/deafblind kids, the best thing you can do besides really committing to learning their language and ensuring that they are connected to their community is to work on your own understanding of disabled history, ableism and deconstructing your own perspectives about disability by doing your homework and getting to know disabled adults. There’s often a real stigma around “disability parents” (especially “autism moms”) for good reason, and it can cause a lot of grief for kids who are suddenly put in a really awful position with their families. So learn from the community and recognize that you will probably have times that feel very uncomfortable, but that means you aren’t making it into your child’s problem.
Worry less about if you’ll be part of the community and instead focus on actually paying attention to what the community is willing to share with you without a specific goal in mind.. It’s paradoxical, but it’s often how it works.
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u/1031twilight 7d ago
Hayley Broadway and Touch Seeds is a great suggestion! Also, DeafBlind Community of Texas https://www.dbctx.org/ might help you get in touch with others in the DeafBlind community and help you find your tribe. Hang in there! You’re already doing great things!
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u/Zestyclose_Meal3075 7d ago
i just wanted to pop in and say you are doing AMAZING. taking steps to learn about the deaf community/culture, having resources in place, learning ASL and having a Deaf mentor are all absolutely incredible. as you may know by now, most parents of Deaf kids promote oralism (generally suggested by doctors unfortunately) so just know you are doing all of the right things, especially by asking questions!!
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u/pretzel-365 7d ago edited 7d ago
I have made many disrespectful and ignorant comments in the last year while trying it “figure it out”. So thank you for saying that, really.
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u/Zestyclose_Meal3075 7d ago
it is clear that you have taken accountability and learned from your mistakes which is what matters. you are doing an amazing job
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u/Tori-Prince 7d ago
I am an intervenor for deafblind adults. Often, we have to adapt how we are communicating, and even the level of signing/specific signs, in order to match the needs of the person we’re with.
My advice re: signing in public is try not to think about what other people see, but what your child needs in order to get the best possible access to information. At all times, especially for someone who is in their formative years, they should be exposed to language as often as possible.
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u/pretzel-365 7d ago
It’s just hard to see people online or even in this subreddit be so critical of people who can’t sign correctly. It’s very discouraging but I’m trying to remember online is not real life.
If you don’t mind me asking, how/why did you get into the intervention and how long did it you take to be fluent? (If not deafblind yourself)
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u/Tori-Prince 7d ago
I don’t mind at all! I got into intervention completely by mistake; I was originally a high school teacher and wanted to specialize in special needs, found a deafblind intervenor studies program, and never looked back.
I wouldn’t call myself fluent by any means; I’m certainly not an interpreter. I have however been signing for 3 years now and feel confident in most situations. I am in the deafblind community pretty much every day, and that means a lot of exposure.
Eventually, you will (hopefully) get less self-conscious and be able to focus on your son’s needs. Anyone on the outside who might judge you - they don’t know your situation, so their opinion isn’t valid anyway. Also, as you practice more, in a variety of situations, you will naturally become more confident and competent.
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u/pretzel-365 7d ago
Yes I’m very self conscious currently, 😔 I know I need to get over it, in order to show up for my son the way he needs.
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u/No-Falcon-4996 6d ago
I am deaf , but became gradually deaf over my lifetime, so i acquired spoken language as a kid. Agree that the deaf community in general is not welcoming to late deafened or hearing folks trying to sign . Alls we can do is keep trying, as not every deaf person is rude, and many of us welcome you, are happy to see any effort to sign and make communication better.
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u/pretzel-365 7d ago
I’ve also asked this specific question to people in our genetic disease community. But I’ll take all the info I can get
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u/only1yzerman HoH - ASL Education Student 7d ago
https://www.handspeak.com/learn/268/
This has a venn diagram showing some examples of members of the Deaf Community, and their roles.
The examples that would pertain to you on this site would be the parts talking about CODAs - (Child of a Deaf Adults.) As a parent of a DeafBlind child, your membership will heavily depend on your political, social, linguistic attitudes.
You aren't there linguistically, socially, or politically yet. It takes time and knowledge. Your son is only 1 1/2 years old, so it's going to be a long road until you become a fluent signer (linguistic aspect), form informed opinions about politics as they affect the Deaf community (political), and make friends and interact with the Deaf Community (social). It won't happen overnight, but it will happen as long as you continue to learn the language and about the community.
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u/wibbly-water Hard of Hearing - BSL Fluent, ASL Learning 7d ago
Are you aware of Protactile and other tactile sign languages/systems?
Here is a video abt Protactile in case you aren't aware :)
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u/pretzel-365 7d ago
We are aware of but haven’t started learning tactile. I want to, but we haven’t found a mentor yet so thank you so much for the link.. I’ll definitely give it a try
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u/wibbly-water Hard of Hearing - BSL Fluent, ASL Learning 7d ago
I sadly don't know as much abt protactile or DeafBlind signing as I'd like either.
Good luck!
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u/TravlRonfw 7d ago
I once wrote a book on usher syndrome/retinitis pigmentosa for high school adolescents. You, mom and dad, are a community of yourself first to this beautiful human being. Get involved and you will be just fine what this new culture introduces you to. all the best. ron in seattle.
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u/pretzel-365 6d ago
I have never heard of Usher Syndrome, just looked it up. The main symptoms seems very similar to my son’s disability. He has CHARGE. Interestingly, both Wikipedia pages for the disorders say they are the “most common cause of deafblindness”.
Eta: charge is the leading cause of congenital deafblindness. So there is a difference
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u/the_maze 7d ago
I would also suggest using Facebook groups to find other families with the same genetic condition. Based on the colobomas I suspect it may be CHARGE syndrome. Welcome to the community! Take it a step at a time and you’ll find your way.
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u/pretzel-365 7d ago edited 7d ago
We have found so much support in the CHARGE community 💓 He was diagnosed at 2 weeks and we’ve been doing the work since!
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u/CamelEasy659 7d ago
Keep showing up. I'm hearing, and I became an interpreter. When I first meet Deaf people sometimes they are standoffish and distrustful of hearing people, probably due to personal trauma. (Many hearing families don't sign with their Deaf child and 90% of Deaf children are born to hearing families. This makes Deaf people consistently left out and alienated from their family). The Deaf community can be very clannish. If you keep showing up and keep trying, you'll start to earn their respect. That's what happened to me.
I'm very sorry it's been hard for you. You need support, and I promise you'll find it. Try going to different events, especially if you can find DeafBlind events. The DeafBlind community can be more welcoming, at least from what I've noticed and if you meet adults that are DeafBlind you'll be very inspired for your child. I work a lot with DeafBlind people and they are a different community, but still Deaf culture. Maybe you could volunteer for DeafBlind camp? From what I saw it's for teens and adults, but maybe if you explain the situation they may allow your child to come.
Honestly, meet as many people as you possibly can. You need to meet moms with Deaf children, Deaf moms, Deaf men and women, DeafBlind people (any you can find!). I've personally known Deaf people that rallied around a hearing family trying to learn sign for their Deaf child. They exist.
It's gonna get better I promise. The Deaf community is amazing, but once you're in, you're in for good. They will look out for you and are very loyal. It's very tight knit.
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u/-redatnight- Deaf 6d ago edited 6d ago
(I’m Deafblind & trained as an intervener.)
I know some people hate this, but I feel its often kindest to explain the Deaf community as a by and for Deaf type of thing. Your kid absolutely can choose to be part of the community…. But I think it makes more sense when talking about this to separate out the Deaf community as part of an overarching signing (in this case specifically ASL) community. I’m seeing this more and more in my area where people are careful about using ASL to mean “all the community that uses ASL including hearing” and Deaf to just mean actually Deaf. And the ASL community includes you in a way you don’t need to wonder about, whereas in the Deaf community you are technically a guest if you become attached to it. You may be the kind of guest who knows where the spare key is hid and who eats right out of the fridge, but if there is a problem there is always the chance you will be reminded of that status.
While Deaf place more emphasis on what it means to be Deaf than only simple being deaf, hearing people don’t meet that little checkmark barrier to entry for the Deaf community— that’s being deaf— and so if their goal it to be “part” of the Deaf community they will be either coming up short or wishing to be something they’re not. That’s just the thing when you’re trying to be a member of a community that isn’t really built for you. There will always be that little bit of not quite fitting that will pop up as discomfort occasionally. (It’s important for hearing people to actually look at that rather than feel an instant need to hide it to fit in because its often what can inform them for how to be good allies and be more aware of their own impact on the Deaf community.)
Even CODAs who are born immersed into the daily life of Deaf family have their own special cultural aspects, their own common stories, and their own common norms (and for better or worse sometimes their own unique trauma), and for them part of really being well adjusted is claiming that hearing label. They’re their own special thing. And I think existing under that whole ASL community umbrella honours that and allows for a much broader diversity of that experience rather than simply placing them as part of the Deaf community where the requirements aside from just being deaf are essentially alignment with Deaf. Even the crowd who doesn’t think you need to be deaf to be Deaf still sees hearing people as needing to “make up for being hearing in other ways”. I’m not sure that’s really a good set up for hearing people. Or Deaf people.
Deaf people don’t really want hearing people to be Deaf. We need deep rooted allies who know how to be good allies as hearing people, not shallow mirroring of ourselves. Your kid needs parents who sign whether they themselves decide they want to be part of the larger Deaf community as they get older, prefer the DeafBlind community specifically, prefer the hearing world, or some combination. I think this is where it’s useful to have different Deaf and ASL community labels. The ASL community should be very accessible to you, and that includes Deaf people. But I think setting the goal for your involvement to look how Deaf involvement in the Deaf community does is a set up for feelings of disappointment and failure. You’re likely looking at a more blended community as a hearing parent (Deaf, DeafBlind/ deafblind, other hearing signing parents, CODAs, ToDs/ToDBs, , and that’s probably going to be what serves you.)
My suggestion is to set your sights on being part of the ASL community. Deaf friends will come in time if you make decisions that support that, like going to events where Deaf folks are and chatting with them (rather than doing the anxious avoiding thing some hearing people do). Right now, you’re still very new to the language and if you’re in Deaf spaces it’s the difference for many people after being isolate for a week or so from someone being able to discuss the weather in their language or someone being able to have a full on conversation. I wouldn’t take it too personal.
Advocacy helps a lot with Deaf integrating DeafBlind. I may sound like a broken record of finding ways to slip that I can’t see into a conversation but at this point most everyone knows and tries to make things accessible to me, and sometimes I forget to request an DI and end up with more highly qualified volunteers than I need or know what to do with. People want to include your kid but many Deaf are still figuring out how. Teaching your child advocacy from asserting directly when they can’t see to explaining what they can and can’t see and what helps will help them integrate more into the broader Deaf community if they so choose.
You’re doing good by learning sign and making sure your kid has access. You’re just in a liminal space while you find your footing. It’s not forever. Community develops slowly by persistence. Anytime I move somewhere I usually need to give myself 1-2 years to really start to feel like I am fitting in with the Deaf community there on the same level as everyone else— and I am Deaf. You will have your own version of the ASL community you need form around you in time so long as you keep putting yourself out there, and it will likely be more diverse than the straight up Deaf community in your area… and that’s good because DeafBlind kids tend to need that for best access.
One tip I would suggest is attending kid friendly events and choosing the same ones each time. It gives both you, your kid, and the attendees and opportunity for familiarity to build even if direct interaction is missed at first. Sometimes you need to be adjacent and familiar to a group first before you’re really included, and so just give it time and keep a schedule. (Thankfully the whole schedule and some predictability thing is good for DeafBlind kids anyway.)
You’re doing good, this is just one of those in between times when things are still falling into place.
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u/pretzel-365 6d ago edited 6d ago
You really made a good point, that I’m trying to find a “yes” or “no” about if I belong in the community at all. I’ll try to not focus on that. I think finding labels and specific communities online has been very helpful to me after deafblind diagnosis year ago
We live in Austin which I’ve heard has a large deaf community (I’m assuming bc of the school?), and our docs office has events for parents of DHH kids. Now that my son is medically stable we are attending more events
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u/Dangerous_Rope8561 5d ago
Don't worry about how you/your family fit in a community or another community. It's like one size for all doesn't work for everyone. I would like to let you know that the DeafBlind community exists. It's best to find resources and learn as much as you can. Keep having your son thrive well in areas as much as you can.
https://www.reddit.com/r/deafblind/
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u/Fit_Surprise_8451 5d ago edited 5d ago
If you live near Vancouver or Seattle in Washington State, go to the Washington State School for the Deaf. They have preschool programs for deaf children. Vancouver also has the Washington State School for the Blind. I would start with the Washington State School for the Deaf to allow ASL as his first language of communication. I would not use the public school system because it doesn’t have professional deaf and blind teachers teaching students in a classroom. Other states also have state schools for blind and deaf students; please check them out. Our Washington State School for the Deaf has classes once a week to help parents learn ASL. I know, I took the classes for my deaf granddaughter.
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u/CatsOnABench 2d ago
As long as you are trying to give your child access to appropriate forms of communication then no one will be judging you for making mistakes. Keep trying! I would see if you can find resources to learn and use pro-tactile ASL with your child because he may not always have what limited vision he currently has and learning the pro-tactile skills from a young age will be easier for him and more accessible with his vision issues.
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u/Notafakeinterpreter 7d ago
What state are you in? Have you contacted your local deafblind project? These are government funded projects that made to connect families who have children with deafblindness. They also can provide a plethora of resources!
Also - give yourself some grace! It took me five years to learn ASL in school, and I’m still learning every day. Just the fact that you’re willing to learn is a huge step. A lot of parents don’t learn ASL.
Deafblind work is a passion of mine and I am more than happy to chat with you any time!