A little while back I was invited to speak at a meeting for Usher parents. What was I going to tell them? I am so new to all of this, I am not an expert. A year ago I didn’t even have a clue of what was coming at us. So I wrote down some things that I wish someone would have said to me upon getting that Usher diagnosis. I’ve added quotes from deaf-blind people who have inspired and empowered me along the way. May it be of help to any of you now.
It’s okay to cry (every now and then) When we got the diagnosis we cried for 2 days nonstop. And the tears still come every now and then, and that’s perfectly fine. Just don’t dwell on it. Look around you, there’s too much to be grateful for. If you cry all the time, you will miss out on so much beauty. The sun is gonna come up every day, and you can either run from it, or embrace the new day. I don’t want to be on the run for the rest of my life. Cry when you feel like it, there’s absolutely no shame in it. Just don’t forget to enjoy life and your beautiful child(ren).
Trust your instincts (you are doing the right thing) There are no guidelines, there’s no book. You will deal with this how you think is best. Follow your heart and you will be fine. I felt the need to create a space where I could share my stories and reach out to other people. Ushermom is my therapy, and my way of helping Jackson and other Ushers. You will find your own way, but talking about it helps, sharing helps as well, it’s good to know that you are not alone in this. Ask questions, and if you don’t understand something, ask again. If gathering information makes you feel useful, google away. If you want to take action, may the force be with you.
Stop comparing (it doesn’t get you anywhere) Don’t be bitter, don’t let it get to you. Yes, it is hard. Very hard. To see children running, playing, talking, interacting effortlessly with others and the environment they are in. Without any barriers. It hurts like hell. But be grateful for what you have, look at what your child can do. Enjoy it every step of the way. Don’t focus too hard on what you see on social media, it’s only what people want you to see. There is no picture perfect, everybody faces challenges in their life, it’s up to you how you deal with it. We’re all entitled to happiness, but you have to allow it.
Something good will come from this diagnosis (really) Having a child puts everything in perspective, the cliché is true. Having a child with Usher syndrome adds a time limit. That’s what I felt the day we got the diagnosis, and that is what I still feel. How long will we have? How long will Jackson be able to see? I try to put these uncertainties, the things that I cannot control, beside me. To not let it control our lives. Instead, we take it one day at a time. And for a control freak like me, it’s still difficult, but I also find it liberating at times. I work less, I’ve taken a step back, I might have done that anyway, but the Usher diagnosis made that decision much easier to make. I choose to spend more time with my son and husband, family comes first.
Be optimistic (set the example for your kid) I’ll admit, some people have more natural talent for this than others. But facing this diagnosis head on, with hope in your heart and power in your soul will get you so much further. You will reflect your positive attitude on your child and that is the most powerful gift you have to offer. Usher syndrome has made me look at people with disabilities in a different way, I’ve seen so much determination, perseverance and resilience. I’ve seen people, who regardless of any disability they might have, live a happy and joyful life. That’s what I want to pass on to Jackson, above anything else: you are full of potential and the world is full of opportunities.
Hi! I am a single mom (now since 1990) of an Usher Syndrome son — now 46. He still has some very limited sight but useful none the less.
He lives on his own in an apartment in NYC and works for H & M Imports. He has been with them for 10 years and has done very, very well with the duties he has been assigned. He can stock, monitor dressing rooms, and even cashier. He handles customer complaints and inventory changes with charm. I couldn’t be a prouder mom than I am. I have walked many of the paths you are on or will travel in the future. A sense of humor and hope will go a long way in making the journey memorable. I don’t know when the rest of my son’s sight will be gone, but we are enjoying every moment we have now. He has a close deaf friend, and they do all sorts of travels and socials. They have been active in deaf groups, and my son stays in touch with the Usher Coalition. Use every learning opportunity that presents itself. You are wise to reach out to other parents whose children may have Usher Syndrome. We all write different stories, but most of us are anxious to share support with one another. Glad for your blog.
Thank you for your kind words Chellis !
Great words of encouragement, thank you. I have a 22 year old son who is flat out mad at God for allowing this into his world. He feels stuck in quicksand waiting for the inevitable. While I pray for a cure he lightly mocks the possibility of one. The thought of it all just drains his battery. I always stay positive for him but at times when I am alone, it can feel overwhelming knowing I am limited in what I can do to help him through this reality he faces. I very much appreciate blogs like this. Knowing there are people out there making the best of a horrific diagnosis brings me hope, hope I share with my son everyday.
Hi Steve. Thanks you for your honest words. I have no illusions, Jackson is still so young, I know we and he have some very difficult times ahead of us. I am honored that my words bring you hope. I wish you and your son all the strength in the world to face this. You can do it, your son can do it, we can do it. Let’s #stopUSH.
As a 70 year old with Ushers, I have come to know many others with similar conditions, enough to have a few suggestions. As this is very variable for individuals, no one prescription can apply to all, but here goes:
1. Reading is key. Learn to read early, offer lots of materials, whether it be in print, large print, or Braille. This is the biggest and most relevant source of information for Deaf-Blind people.
2. Wear sunglasses when outdoors, especially in bright sun. This may help slow the progression of the RP.
3. Join schools or groups with Deaf people and learn sign language. This will form the base of communication by tactile if that becomes necessary. Also, the social interaction with other Deaf people is a rich experience and resource.
4. Technology is rapidly advancing and most Deaf and Deaf-Blind people use it extensively. Learn computer skills and programs, use peripherials, obtain the latest programs and devices.
5. Crafts, arts, making items by hand in various materials. Many of the Deaf-Blind are artisans.
Thank you so much, very useful information ! Will share with others.
All the best,