Ashlee Rose: Tell us about yourself, hobbies, marriage life, anything you want to share about yourself.
Alexandra: I am currently a software designer for IBM and I am on the board of the AIGA Raleigh as the Director of Inclusive Design. I recently received my Master’s from NCSU College of Design where my thesis project focused on designs for a smart user interface for Cochlear Implants. I live in Raleigh, North Carolina with my husband and two rescue dogs. My professional website is: http://alexandradeangrossi.com/
Ashlee Rose:How old were you when you were diagnosed with a hearing loss? What causes it if known?
Alexandra:I was diagnosed as profoundly deaf at almost two years old. The doctors do not know what caused it. I had a complicated birth with a twin sister who died at 3 days old. We suffered from Twin-twin transfusion disorder and I suspect this played a part in my hearing loss.
Ashlee Rose:What approach did your parents take?
Alexandra: My parents didn’t know a single deaf person when they found out that I was profoundly deaf so they went into deep researching mode. They visited schools for the deaf, talked to teachers, speech pathologists, and many doctors. It wasn’t until they met a young orally deaf man who was enrolled at Harvard that they were inspired to put me on the same path he went. He was smart, charming and spoke with such confidence, that they realized that I could achieve anything I wanted to. From then on it was a matter of finding the right teachers and speech therapists who would help me thrive.
Ashlee Rose: When did you understand that you have a hearing loss?
Alexandra: For as long as I can remember, I understood that I had a hearing loss. I remember working on speech drills with my dad when I was about 3 years old. Being mainstreamed, I compared myself to mostly hearing kids and I realized then that I will always have to work harder than my hearing peers to communicate.
Ashlee Rose:Have you met any other deaf individuals while growing up?
Alexandra:While I started speech therapy when I was around 2 and a half years old, it wasn’t until I was in elementary school that I met deaf kids like me. There was an orally deaf program embedded in a public school, and my parents moved to this district so that I could enroll there. This is where I met my best friend Ashlee who was also in the same program. Our friendship was an important one during my childhood. I loved my hearing friends, but I found it invaluable to have a friend who was going through the same things as I was.
Ashlee Rose:What devices do you have?( What inspired you to get a second cochlear implant?)
Alexandra:I grew up wearing bilateral high powered hearing aids and using an FM system while in classes. Then when I was 16, having a cochlear implant became a possibility and I decided to switch from two hearing aids to one cochlear implant because that’s what my insurance company would cover at the time. Finally, when I was in my 30s I decided I really wanted to be able to have bilateral hearing again. I had to jump through hoops to get an insurance company to cover my second surgery, but I finally did it and I’m really glad to be a bionic woman in “stereo!”
Ashlee Rose:What do you do when you meet a hearing individual- when you go shopping, at a gathering or job interviews?
Alexandra: With hearing friends and family members I know well, I usually don’t think twice about tough hearing situations because they understand I need to read lips, and I feel comfortable asking them to repeat themselves. Large groups can be challenging, I prefer being in smaller groups or meeting people individually. With new friends, I will try to orchestrate our early get-togethers in a quiet setting until I am more comfortable with them.
Job interviews can be tricky since I am trying to show my most capable side. Usually, interviews are one-on-one in a quiet office, which is actually the perfect setting for me. However, my last job interview included a video conference call to go over my portfolio. In that case, I tried to talk through everything as clearly and thoroughly as possible to reduce the number of questions asked at the end. It was nerve-wracking, but I got the job after all!
Ashlee Rose: Do you get accommodations for your job? Any struggles?
Alexandra:As a software designer I work with designers and developers who are located all over the world, this means I have a lot of video conference calls with people who possess many different accents over often spotty internet with not great video quality. Early in my job, I was afraid of coming across as less-than-capable so I struggled for the first few months. When I couldn’t take it anymore, I asked for accommodations and I was pleasantly surprised to learn that I was not the only deaf IBMer. I was given a choice of a live captioner or an ASL translator. Since I never learned ASL, I went with the captioner and it has made my daily work life so much better.
Ashlee Rose: Tell us about what you do for work, project anything you want to share?
Alexandra: I consider myself an Inclusive Design activist, and I am passionate about giving a voice to users who are usually treated as “outliers.” I strongly believe that designing a more inclusive world benefits everybody. A project close to my heart is work that I have done on IDATA, an NSF grant-funded project that uses User-Centered Design to make astronomy and astronomy software accessible to Blind and Visually Impaired students.
At IBM I work on a product within the Hybrid Cloud called the Transformation Advisor. It adds code to old apps that allows the apps to be “modernized” and transported from physical servers to the cloud. IBM understands the importance of good design and I really appreciate their commitment to accessibility.
Ashlee Rose: Any advice you want to share with parents who have deaf/ hard of hearing children or deaf individuals?
Alexandra: To those raising or working with deaf kids: Don’t underestimate us, we are capable of achieving amazing things. However, we need your patience and your compassion — please recognize that we will always have to work harder than our hearing peers to do the same things.
Alexandra:To my D/deaf HOH brothers and sisters: Never be afraid to ask for help when you need it. You always deserve to understand what’s being said and your voice should always be heard.
I love to write.
(Scene:Two nights ago,it rained. My daughter and I was in my bedroom. I finished my shower, combed my hair and I placed my hand to close the sliding door curtains. I saw the rain. I was delayed because of my deaf ears. My daughter already knew it was raining. )
In the house, all doors are closed.
A daughter can hear the rain. Her mother cannot.
Her mother can see the rain. She cannot.
The daughter relies on her ears.
Sounds of her hearing world.
Her mother relies on her eyes.
Sights of her deaf world.
(She can see but did not see the rain under street light, I could because of several years observing with my own eyes and relying on my eyes).
This leads me to write soulfully.
I am a very passionate person. I always love helping people. I have been on a bridge between hearing and silent worlds, I know what it is like to be deaf.
I love working with children. I absolutely love being a mother to my daughter. I have been parenting since 2008. All stages, triumphs and difficulties. I know what it is like to be a parent
I write to share my experiences - deafness and parenting. Just because I sell Deaf Awareness t shirts, it is not a competitive style to other T-shirt companies. The importance of my business is Deaf awareness, knowledge, education and comfort. To give you hope. To make you feel inspired. To let you know you are not alone. Now, while continuing my personal blogs; I am announcing that I’ll be posting my blog interviews with deaf and hard of hearing individuals and parents of deaf and hard of hearing children to inspire each other and bring our community closer!
2019 is here. What does it mean? What is everyone doing? New Years Resolutions. This time frame is where everyone is setting their own personal goals to improve themselves and their lives. While I was growing up, my mother had us all write our own personal goals and we read our goals to each other. My mother would read our personal goals from the previous year to list our accomplishments. Of course, there were a few that we did not get to accomplished. And that is okay.
Throughout the year, I constantly check my goals and review them- my journals helps me to stay on track and even make some adjustments. I no longer have just my own personal goals. I also have parenting goals. I feel it is important to me to help my daughter achieve her own goals. She does not have personal goals. She has a lot of love for life, I want her to stay joyful, grow, learn, and discover new things. As a parent, it is important to help her with a routine, academics, social, health and well being. Do you have a child? You can set goals as a parent to help them and guide them along the way to finish off their school year nicely and start a new school grade. Advocate for their needs. Strengthen to work on their needs. I also have set another day of a week- on Wednesdays, we have a girls night- three generations: my mother, daughter and I to have dinner and chat. I decided to do another day of week just her and I to do something special to keep that bond strong since I am getting busy with my full time day job and running a business full time as well. I want her to be able to have extracurricular activities and more friends to come over or even a sleep over.(Fill up my cup, please? Coffee) . We will unlock our dreams and fly to discover what 2019 will bring us.
Also, I have been crazy busy being a full time teachers aide, running a business full time, full time single mother that there are not enough hours during the day. Right? Guilty moment, my daughter is an only child and can be very energetic. Recently, she asked me to do things with her. Right at that moment. We as a parent would say no most of the times right? Because we are busy cleaning, organizing and doing something at that moment. Instead, I have been saying "yes" right at that moment. Turned off the sink faucet when I was in middle of washing dishes. We danced. We did yoga. She actually did three different scavenger hunts. When she was ready, I was ready. It was actually a lot of fun. I read somewhere online last year that a mother tried this method, from "no" to "yes". I missed a lot of enjoyment because I would be too late by the time I was ready, we debated or argued and we can be stubborn of our time -I am not ready when she is or I am ready when she is not ready "Wait for 7 minutes?" "30 minutes". I am the discipline mother playing the two roles due to single motherhood. I was shocked how much a difference it was to say "yes" and our relationship, myself and my daughter's . Surprisingly, we haven't been stubborn of our time, I have asked her to do something with me and she did with an interest and a positive attitude. Of course, there are things I will say "no" to certain and inappropriate things! I am willing to drop my laundry basket of clean clothes that needs to be folded to do things with my daughter when she ask me at that moment to do something with her. Because I will not have much time with her when she will be busy with her social life growing up.
Here are lovely quotes to use for your goals throughout the year-
Set for your goal, be ambitious. Do what you dream, unlock your wishes. - Aaron David
Unlock your dreams, set them free to fly- Bernard Kelvin Clive
Yesterday is gone. Tomorrow has not yet come. We only have today- Mother Theresa
A journey of a thousand miles must begin with a single step- Chinese Proverb.
You are never too old to set another goal or to dream a new dream. -C.S. Lewis.
While driving to work, I realized advocacy is needed everyday and everywhere. It does not matter how old you are, if you are perfectly settled in a great school, there will be an unexpected event throughout your lifetime. Actually, it will continue to happen throughout your lifetime. When I was growing up, I lived in a perfect bubble. It was not a perfect bubble for my parents. Growing up in 1980s to 2000s, we did not have many resources like today, we did not have social media, no websites with current information, YouTube videos, bloggers, and other ways. Our way was rather old fashioned which was to drive to seek resources. Luckily, my senior year in high school on my IEP was advocacy knowledge. My teacher of the deaf educated me on my rights for the real world. There was a huge gap between early childhood setting to real world setting.
Honestly, it was frightening. I faced a bad experience at vocational rehabilitation services when I was 18 trying to get college financial support. “What do you want to be when you grow up?” I knew I wanted to work with deaf children and guide families. The counselor rejected the idea. I also had passion in designing, he rejected the idea. Few months of rejections. I did not get the help after all. I have faced discrimination by companies during interviews, a lady who was thrilled to see me and loved my resume, but she tossed the papers as soon as I told her I have a hearing loss. I did ballet, jazz, hip hop, gymnastics, cheerleading, basketball, flute,and volleyball. It was a beautiful ride! However, I was stopped by a referee at a intense basketball game, my skin was flushed. He stopped me because of my hearing aids. The coach and my parents fought for me.The crowd roared. I resumed playing. I was in high school, I faced some difficulties- movies with no subtitles and tests where I had to listened in regular academic classes.
I had anxiety.
My teacher of the Deaf fought for my rights and accommodations.
I have been advocating since my childhood for education and extracurricular activities in the real world. I found myself advocating as a mother. I advocate for my daughter, her needs and situations. She is at the age where I cannot fully advocate for her, but with my experiences, I guide her and tell her to grow through things instead of go through it. (My favorite quote: "Grow through what you go through".) There are boundaries. I guide her in what is appropriate and what is not- social communication , social media- I removed the apps- actually she removed them herself. I also advocate as single mother and as deaf.
It is everyday and everywhere.
Advocating is not only fighting for what you believe in, your rights, but it is also asking for proper help for your needs.
Be loyal to yourself, do not let others put you down.
Recently, I woke up from a dream where a lady did not want me to talk because of my speech and did not want me to proceed. It was weird, I have been at same job for the last six years and I call it a home. Maybe it was a sign, a friendly reminder on advocacy that I need to share with you guys.
It does not matter how old you are, how old your child is, where you are at- continue to advocate, be consistent, educate yourself along the way, teach your children not to give up and prepare them. My mother delivered me, she saw me take first breath and wept when she was told that her daughter is deaf at age ten months. She continues to guide me, remind me to use my backbone, and remind me that I am worthy.She will continue to walk besides me on advocacy until her last breath while my daughter will walk besides me on the other side to learn on advocacy while I can mentor her and remind her that she is worthy not to let others put her down and advocate for herself.
Here we go again, consistency is hard. Do you ever feel you work on a goal then it drifts off eventually? I have a lot of goals. I am very driven. I am obsessed with completing my duties such as mother, employee and owner. I love to help, I strive for the best, and I want to do more. I don’t want my deafness to limit me.
This is an image- me in mommy hair bun, work out clothes and sneakers to push myself and running around. My lists are getting too long. Obviously, we are back to school. Three to four hours of homework. Exhausting. Thank goodness, one of the mothers who was my roommate on girl scout camping gave me tips on online grocery shopping- I ended up ordering online a few times already to make my life easier. Guilty but loving it. Do you feel you have lunches to make, pack snacks, errands, laundry, and charging Processors/packing hearing aid batteries in bag to be secured- I can be guilty that I run low on my battery, but I am still old fashion gal and still love my disposable batteries. The “fish stickers” it excited me to peel them off!
Slow down. I stopped and realized I am back in not so balance cycle again. One moment, I will not lie. My daughter got frustrated that I could not come to her right away to help her to do something.To her, I was emotionally unavailable. I explained. There is only me. ME. To do everything by myself. There isn't a husband to help me to split the duties or to be there for us. I am picking up while I am explaining to her, I point to her there is no husband next to me so I do it all. My large mommy bun is tilting to left side slipping down away from the rubber band. And of course, the joy of communicating is telling her she needs to step up on doing her chores to relieve me and build her own independence skills (SLOWLY).
So, I pulled out a blank journal and decided to write my goals. I listed my goals. Yes, I am the mother here who is OCD with lists. If I am not organized, I’m slightly fragile. If I don’t complete the list, I feel like a failure. I realized they are just lists. It does not defines me. Balancing defines me. Again, I have to take care of myself before others so I can serve. I wrote down what I can do for myself, what can I do if I get stressed even as a mother “Go to my bedroom for 5 minutes and meditate”! It is also setting boundaries and setting myself up to be committed to myself to the best version I can be and find the outcome results.
I now have been writing my journal daily to hold me accountable, this is what I write-
I called my daughter's name a few times already, and she did not respond to me. I got frustrated with her. I told her she has a name and she should acknowledge whoever calls her name. It is rude if you do not, right? "Mommy, why do people have names?". I was puzzled. I explained to her so people can respectfully call other people names instead of saying "Hey you" and for identity rights like birth certificate and picture ID. Especially school enrollment papers. I dug deeper through research and found names were given between 500,000 to 50,000 years ago due to Christianity, burial, and conversational wise by using description. They spoke a name and it showed to respect.
Today, I learned it is not just names. I found people using descriptions of others instead of names. How offensive? It can be offensive if other people describes our disabilities and what we cannot do instead of our names first. "The girl with nasal accent who .." "The boy who has something on his head.."
Instead, it should be "Ashlee is.." and instead of pointing our flaws or what we cannot do, we can say,
"Ashlee, she owns a business. She sells Deaf Awareness apparel. She is also deaf"
"Ashlee loves to draw. She loves to help others and she really does love her family. Even though, she is deaf, she does not let things limit her!"
My daughter recently joined a Best Buddies Program. We reviewed paperwork and I really loved this one paper! "Remember to treat your buddy the way you like to be treated (The Golden Rule). It is important to use "People First Language" the disability does not define the child." The example was given, "She is a student with Down Syndrome" NOT "She is a Down Syndrome girl". I have been called "The deaf girl who is on the cheer squad" when I was in High school on a cheer-leading team. I just hope our children can prevent this and even for us as an adults to teach them and to advocate for themselves. I even would want my daughter to be called "Makayla" not "The girl who has a deaf mom". She has a name. She has good qualities. We all do.
My favorite quote these days is "If you have nothing nice to say, say nothing at all" and to follow the "Golden Rule"- treat others as you would like to be treated.
Take a picture of yourself with a name and post on Instagram with hashtag #LAR'snamemovement (LAR is for Love, Ashlee Rose in case you are wondering) and @loveashleerose to help the Golden Rule Movement. Be an advocate for yourself, for us, for our children, and for all..
When I meet people and some of them would say “I have never talked to a deaf person before” or “What does that mean?” while they are learning how to interact with a deaf person. It is not something you are supposed to be a professional at. It may mean taking the time to learn and to be flexible to meet a deaf person on a bridge between deaf and hearing worlds. It does take a lot of patience. We do appreciate the effort and consideration from others who are willing to do so.
It is not just you that have to learn to communicate and interact with us, we also learn to communicate with you and interact with you. It works both ways. The best example is my daughter. She was born to a deaf mother. She was not equipped with every power and knowledge right away . Over the years, she continues to learn to communicate with me, what I am capable of and not capable of, and when I cannot hear (device off, in water, in dark, and the whispers). I noticed recently she has been whispering to me in conversations knowing I can lip read and I’ll whisper back to her “Why are you whispering?”. Did you know I continue to learn to communicate with her because she keeps growing, her speech keeps changing and her teeth position keeps changing?Did you know when I get new mapping sounds in my processor or new processor, it is like learning all over again..For my daughter, she studies me grasping the sounds and it requires patience every time
My daughter is in fifth grade, lots of fast things going on that her peers are experiencing like when we were in high school. For example, gossiping, say things they do or do not mean.I educate her that all children are extraordinary not just certain ones. ALL. They all are amazing, unique in their own ways, and there is something we can learn from each individual. Even as adults! I educate her that everyone has their own journey, a few miles to a million miles of pain, struggles, strength,and trials. What if they are going through a transition such as death, divorce, income changes, moving, drugs, alcoholism, disabilities and other personal issues.
Life is not easy. It is their chapter. It’s their pace how they want to perceive it and how to grow from it. Do not judge. We do not know.I tell her to choose words carefully and think about them. Protect your words if you do not want others to know and if you do not want to hurt them. Spread the words by saying the words to change the world, to show kindness and love, to educate others and to learn from others. Protect or spread the words. Choose.
As a parent, my main focus on parenting is guiding her on choices, actions, morals and values. Share thoughts, show her outside of her painting what we see as she’s not always aware. Coping skills when she gets frustrated or boredom I guide her to express her frustrations by saying “ I am feeling anxious because I am bored or hurt” and figure out how to get through it. Stop and breathe. Slow down and learn. Time is precious. We have to learn to understand others and ourselves.
“She cannot hear. She is deaf” said my daughter.
Humidity creeps in. Rain sprinkles softly. The flowers stand still. The mountains are thick and green. The grass is definitely better on the other side of America- I am in my hometown, Vermont.
I am listening to my favorite music clip- NO ONE absolutely knows my secret power. (My secret power is I can listen to music secretly. It is a Bluetooth clip that connects to my IMusic playlist. You can make phone calls on it as well). Waves of memories rolls in. When I was twelve, my father had this old beautiful gold convertible Cadillac and at nights, he had the top down. I laid down in back seat looking at stars and played my first favorite song “Dreaming of You” by Selena. So loud blasting. I knew it would not destroy my hearing since I was already profoundly deaf! My father was running a huge carpet warehouse that was connected to our house. My brother, his friends and I blasted the music speakers and danced or played hide and seek in the dark. Every night during the summer, we played basketball for hours. I thought I heard the sounds but I did not.
While visiting my aunt, I showered every night and had my processor off for rest of the evening due to wet hair and quiet time, the town was already quiet. Except one night, I delayed my shower and sitting on my bed. The fire truck sirens were going off forever! It sounded like it was next to me. I wondered if there was a fire? I said to Makayla, “what’s going on?!” I was absolutely amazed I was able to hear it miles away! There wasn’t a fire after all, they had fire trucks driving a baseball team after a successful game.
The first week has flown by, my mother flew out to join us for another week. We packed up and went to check into the house we rented for a week. I heard this unusual sound. I ignored it. The next day, walking around the pond in the backyard, I heard this same sound I ignored before. It puzzled me. I said to Makayla, “What is that sound? It sounds like this.” While I tried to imitate the sound and pointed to the sound when it appeared again. It’s a frog! I can’t possibly imitate this croak and ribbet sounds correctly. Of course, the preschool song came in my head “Frog Went A Courting”! I teased the teacher I aide for, my mother and daughter the song and part of lyrics “M-hm. M-hm”!
My vacation reflection:
Hearing Impaired single mother and teacher aide at a hearing impaired oral preschool program. An author of "Turn The Lights On, I Cant Hear You".