Sarah turned 21 yesterday and we had a blast. She just graduated from college and came home to visit. We planned a huge party for her and everyone was so excited to see our girl all grown up.
This morning is different. I was talking with Sarah about when she plans on moving back home or continuing on in school. She said she didn’t want to continue school and she didn’t want to come home. She wants to stay up north because she says she feels more at home and coming home feels strange to her. As you can imagine that hurts to hear your child say they aren’t comfortable around you. It breaks my heart more than when we learned she has Usher Syndrome.
Just got the worse news I think could ever be gotten. Sarah was complaining she was having trouble seeing at night so we went to the eye doctor. He said that she is losing her Peripheral vision and night vision. The doctor is almost certain it is retinitis pigmentosa. What the hell is that? Is she losing the color in her eyes? Pigment is color. Itis is inflamed. He told me that due to her Deafness it is probably Usher’s Syndrome. Then he got to the devastating part that over the next 10-15 years it will get worse until completely blind. I don’t know anything about Usher’s so I have a lot of reading just in case. Lets hope this quack has no idea what he is talking about and all she needs is glasses. NEedless to say we are getting a second opinion.
Sarah is 14. Is a dad ever ready for this? A teenage girl and her mother under the same roof. I feel more comfortable in a mine field where I know what is coming when I step wrong. Sarah has had me wrapped up for the longest time and It’s gotten me in trouble with the wife lately. I never grew up with a curfew or groundings and I’m a huge pushover when it comes to punishment follow through.
As for school Sarah is doing great in school and is finding herself in her extracurricular activities. Her grades are good but it is a struggle to get her to enjoy writing. I can’t judge her because I never liked writing and English is my first language. Getting her to finish research papers or journal assignments is pulling teeth for both of us. I’m the main homework help because her mother is useless at math. I’m so happy that math and science aren’t a problem for her because a couple more years and I’ll have to go to night school to have the ability to help her anymore. If anyone has any advise on getting a teenager to like writing I’m all ears. I wish I could tell her to do what I did and have your girlfriends write them for you but I doubt that will go over to well with the wife or any other parent alive.
As for activities, I was raised to not sit at home and to be in a sport and have been strict about that. She tried soccer and softball and swimming but really felt alive on the tennis court. It works toward her strong and independent side she gets from her mother and her competitive side she gets from me. I love going to see every match she has and am so proud of how committed to the sport she is. We did have a few problems when the coach told her she couldn’t play doubles with one of her best friends from school. I had to intervene and tell the coach that signs can be affective during a match if not more than speaking to your partner. when I played in high school all the guys would make hand signals and gestures to communicate what the plan for that point was. Unfortunately this coach has a full cup and coaches they way he wants. After this episode I had to pick my daughter up. I don’t want her coach ruining her love for tennis. Her coach wants her to play singles because he thinks the communication barrier would make it hard for them to play. Try telling that to a 14 year old that just wants to play with her friend. I just hope she stays with it and doesn’t let the ignorance of some people tear her down.
Please accept my (and my professor’s apologies) for my simulated blog. We are hearing people preparing to be teachers of Deaf/deaf/Hard of Hearing kids. It is an intensive 1-week class and we are learning so much about being a parent of a DHH child and the challenges & joys they face. Any help and advice from the real world of Deaf/deaf community and parents of DHH is HUGELY appreciated and will make us better teachers.
Tim (student) & Kate Reynolds (UNO professor)
Decisions, decisions. Now that Sarah is moving into first grade we have to make some vary difficult decisions about where we want Sarah to go to school. I don’t want to send her to a residential school. It is probably the best place for her to be but I don’t think I could live without her at home. I know that probably sounds selfish but I can’t help feeling this way. Ideally I want her to be in an inclusion classroom because I have worked in inclusion rooms before and have seen some amazing growth from every student in the room. In my ideal world she would have a a teacher of the Deaf.
Sadly I don’t live in my ideal world. I know I will have to fight for her to get the best education she can get and I know I will have to sacrifice something. what I won’t sacrifice is having a TOD. I will do anything to have my daughter properly taught by a teacher that knows and understands how she learns. My biggest worry is learning the laws that schools follow and falling into a loop hole that allows them to not provide the services Sarah needs.
I know I have made up my mind but I am very scared that I might be a colossal idiot. I am making these decisions for my daughter and I can be completely wrong. At the School for the Deaf she would be with a community of Deaf people but not with her family. But living in Metairie, we have access to the city and I am willing to find and involve my family in as many Deaf events and allow her to embrace her culture and my new culture if I would be welcomed. I want to keep my one and only child with me.
The past three years have been a complete whirlwind of research, learning, and change. Starting back from the meetings with the audiologist finding how extensive Sarah’s hearing loss is and what our options are.
The doctor gave us all the information to be accredited with a degree in audiology. To this day my head is spinning from the sheer extent of the information and I honestly can’t say I fully understand any of it. All I know for sure is my daughter is deaf and I had to make a huge decision for her life immediately.
After taking home all the information and talking and crying and praying with my wife about what we wanted to do. We decided to embrace ASL for ourselves and raise her Deaf. This wasn’t the easiest decision to make because we had to accept that our daughter will never hear our voices, but if she can feel the love I have for her it means more to me. And I never felt comfortable with cutting my babies head open so young.
When we made this life changing decision we knew we had to jump into the deep end for our daughter. My wife and I first looked for ASL classes and private tutors to become fluent as fast as we could to minimize any delay for our daughter. We also taught grandparents ASL and we started researching schools and daycares that sign in ASL.
Today as I write this down, my family has been signing for 3 years. MY daughter is a little chatterbox and such a social butterfly. I want to believe I made the right choice for her because 5 minutes doesn’t go by without her getting into something and possibly getting hurt. It gives me comfort to know she is a normal child and I don’t have to stress about her possible causing damage to her implant. I don’t know if I’ll ever feel like we made the best decision for Sarah but I do know I’m happy with the choice we made.
I’m a dad! Doctor comes in a says we have a healthy baby girl in all ways but 1. My daughter Sarah failed her hearing screening test. This brings up so many questions for me. What does this mean for my daughter? Is she deaf? Is she hard of hearing? How will this impact her life?
What does this mean as she gets older? Will she have to go to a different school? Will she be bullied for being deaf? Will people think she isn’t intelligent because she can’t hear or speak? Do we seek options to help her hear if we can or let her be deaf?I have so many questions and I feel like I’m in quicksand. The more you question and turn to find an answer the deeper if seems to pull you in. What happens to my family? How does this change home life? The stress of a new baby is enough but add on learning to communicate with her seems to turn my brain to mush. All I can do is take this day by day and do everything in my power to help her. Whatever happens I know I will love her. She is already my world and I know I will do anything for her.