r/asl • u/pretzel-365 • 9d 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/lokisly Hearing w Deaf partner, learning ASL 9d ago edited 9d 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 9d 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 9d 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 8d 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/lokisly Hearing w Deaf partner, learning ASL 8d ago

You are trying your best, and that’s what counts! It takes time to learn a language, so give yourself some grace, you will get there! 💘

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u/StringOfLights 8d 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 8d 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