Recently, I had the pleasure of interviewing a wonderful Mom of a blind child with additional disabilities who is currently a high school student at the Governor Morehead School for the Blind in Raleigh, North Carolina. The purpose of our conversation was to gain insights about the challenges and rewards of parenting a child with special needs in addition to a parent’s perspective on the educational services available to such students. Christy had incredibly wise, insightful commentary to offer on the subjects studied in this course, including the impact of her daughter Sophia’s disabilities on the family, the special educational system, and the challenges and rewards of raising a child with special needs. Though both mother and daughter experienced challenges along the way, both are in a strong place, living satisfied lives and have an exceptionally healthy view of themselves and the world.
When Christy initially learned that her baby girl was blind due to Retinopathy of Prematurity, she experienced a myriad of emotions. Primary among these were fear and anger. She was very scared for her daughter and felt helpless about how to handle the situation. As a mother, she wanted Sophia to have more opportunities than she had, not less. She worried for her future and her safety. For a time, she struggled with feeling anger about why this had happened to her child and was upset she couldn’t protect her from something like this. In the beginning, it was hard on both parents because they wanted to ensure they were doing right by their child but weren’t sure how. It was hard for them not knowing what to do and trying to navigate through the services available to families of young children with disabilities. Christy voiced that she had never been around a blind person before, and worried she wasn’t qualified to raise Sophia right. She knew she would have to rely on other people to help her through and learn to ask for and accept help. It was scary to know that she didn’t know enough on her own. I asked if Christy had ever found it socially excluding to have a child with special needs. She responded right away that it absolutely was and still is. When Sophia was younger, other children didn’t want to play because she did things differently. She desperately wanted to play with them but they avoided her. That of course was heartbreaking to watch because if they would just get to know her, they would love her. At this point, Christy said something very profound that I wrote down verbatim as it was such a powerful statement of truth. “Special needs kids are taught how to adapt to others, but others are never taught how to adapt to special needs kids. That makes me sad because they are missing out.” Many people mean well but just don’t know how to respond to people with disabilities or people who have noticeable differences from the majority. Some things ignorant people have said or done have been hurtful to Christy. She does not appreciate that others describe Sophia as “the blind child”. It shouldn’t be one of the first things they say about her, that would be like describing someone as a red-haired person when introducing them in front of others. She finds this offensive and never describes her daughter that way. Her blindness is not her identity, it’s just a characteristic like her beautiful, long shiny dark hair. She has found it is also common for new people to be nervous and overly concerned about how to talk or act around them because they are afraid of doing or saying something insensitive. Christy understands this and loves to watch Sophia put people at ease as they get to know her. However, she absolutely loathes when people look at her or her child with pity, but is trying to give folks the benefit of the doubt rather than responding in anger. A final thing she mentioned is dislike of people who tell Sophia she’s overcome so much and is so inspiring, when really, her daughter is just living her life. She never knew any different and is happy with herself the way she is. Lastly in the family impact category, I asked about support or resources that were helpful to them along their journey. Her primary source of purpose, meaning, and encouragement comes from the Word of God through the Bible and her faith in Christ Jesus and church community. Christy’s parents were also hugely supportive and constant cheerleaders in Sophia’s court. Several caring professionals provided valuable guidance including a pediatrician, physical and speech therapist, and elementary TVIs. Christy wouldn’t change anything about their journey. There were mistakes along the way but they got to a good place.
We next turned our attention to Christy’s experience with the educational system in terms of its ability to provide for her daughter’s instructional needs. Her three main points were that a) while individuals may want good things for the children, the system itself is often in opposition to families’ wishes for their children because of money, b) parents need to actively fight for the needs of their child to be met in order to have positive outcomes, and c) parents are not respected as they should be and must be personally informed about educational policies and the IEP process to be effective advocates. Ms. Christy’s responses in this area were so fantastic that I don’t want to leave any details out here. The first part of this discussion focused on her arduous battle for an appropriate school placement for Sophia. They lived in an area known for good schools, so she started Sophia out in the local public school system. During her primary years, this placement worked well. Her TVI’s were encouraging and informative resources for the family, the teachers enjoyed having Sophia in class, and the kids were mostly very friendly. As Sophia grew into the upper elementary grades, Christy could see the placement was no longer best for her. The school was far too large, with too many students. Christy could see the teachers did not treat her equally, had low expectations for her, and made decisions based on what would be easiest and least expensive for the school. Worst of all, they gave her a one-on-one aid who was to go everywhere with her. Christy was deliberate that she didn’t want her daughter to have one because it would throw a wrench in everything she was trying to help Sophia accomplish. The aid would end up doing everything for her and be a hinderance to not only her learning, but her development of independent skills, and limiting or even preventing her social interaction with other children. Christy’s placement goal was for Sophia to go to the school for the blind so that she could have constant support and supervision while still getting to interact with other children and in a place where staff had expectations for her growth towards increased independence. Governor Morehead couldn’t take her until the district released her and the public school was highly against this course of action, refusing to release her because of the money they would lose. They offered alternatives but Christy knew her own child better and knew those options would not meet her needs. That is when Christy learned she had to take charge, be fully present and active in the process, and figure out how to navigate the bureaucracy to fight for what she knew was best for her child in a system that did not respect her voice or her knowledge of her own child the way it should. It took nine months of constant persistence, three IEP meetings and countless emails and getting up in front of the “team” to led the meetings herself. But finally, she achieved her goal and Sophia was able to start at GMS the next year. Now Christy is satisfied that Sophia is in a decent place educationally. There is no such thing as a perfect school, but Sophia is happier, making more progress, and has friends and teachers who love and value her personality, strengths, and talents and push her to challenge herself in both the general and expanded curriculums. Here are Christy’s top pieces of advice for other parents:
“It all comes down to money, and if anyone ever tells you any different, they’re a liar.” Don’t be afraid to challenge the system.
“You got to know your IEP backwards and forwards, you need to be prepared before the meeting, know what you want to fight for. Prioritize your top ten things, and be glad if you get half of them. There’s no way they can give you everything you want. It comes down to money and time. It has to be a give and take so be prepared to compromise. Most of the people in the room want the best for your child, they just don’t necessarily know how to do that. If they don’t take you seriously, make yourself heard and be persistent.”
Christy emphasized that a lot about the quality of the educational experience depends on individual teachers. She stated it is very hard for both her and Sophia when good teachers move away, but she understands it is an unavoidable, natural part of life that teachers will come and go.
It is much worse as a parent having a teacher that should have retired and has lost her drive. No mother wants to leave their student with a teacher who doesn’t want to be there. Another important point from our conversation is Christy’s affirmation of the common complaint that the information teachers write in assessments and progress reports is inaccurate and does not reflect how the child is really performing. She finds it hurtful and offensive when general and special teachers alike inflame reports and distort data to make it appear that Sophia is at a higher level that she truly is. “I know my child better than anybody. I wish she could do that but I know that isn’t real.” It is harmful to see in writing that her child is doing what developmentally, she should be able to do, but the Mom and everybody else knows she’s not really there yet. It makes her feel shamed as a parent that the teacher feels they have to fake the report to make themselves look better. But Christy has discovered over the years that she can’t afford to get on a teacher’s bad side. “I’m afraid if I challenge the teacher too much, they’ll take it out on my daughter.” She holds in her anger and frustration because she doesn’t want to make the situation harder for her or Sophia. I have to refrain from declaring that she should have been taught better or that services should have been more frequent or effective. Christy finished by highlighting the reality that the kids with an actively involved parent get better quality service and more attention from teachers. “The thing that really scares me for special needs is when there’s a parent who isn’t active, that’s when the kid is in trouble. I feel so bad for the kids that don’t have a parent fighting for them.”
The final part of my interview with Christy involved her overall outlook on Sophia’s disabilities and perspective on social justice or discrimination of people with disabilities. Christy reports that her involvement has helped to minimize any discrimination that Sophia encounters. Christy has seen medical injustice. She has had to fight to get in to see all the doctors she wanted to see. Getting what you need requires being present and aware. But Sophia has a powerfully assertive Mom who always sticks up for her and ensures she gets what she needs. Her Mom puts her in lots of activities to get her involved in the community. Because she is out there, present and doing things, people get to know her, become accustomed to her, and grow to accept her. For the most part, because Sophia is pleasant looking and she comes with a powerful mother, she hasn’t got the memo that she is different or treated differently. “As a parent, I am inclined to want to protect her from all the negative. But then I realized that without the negative you can’t have joy in the good things. I used to research her diagnoses but now I’ve decided it doesn’t matter. She’s not a condition, she is a person, unique and wonderfully made, beautiful, intelligent, funny, thoughtful, tender-hearted, joyful Sophia. I only want to make sure she is happy, healthy, and doing something that gives her joy, that she gets the experience of using her talents to serve others.” Our world is so tolerant of so many things that it didn’t used to be. Christy always tries to focus on the good things that happen to Sophia, not the bad. She isn’t ignoring that injustice sometimes happens but she chooses not to emphasize it and doesn’t want her daughter to focus on it either as that would lead to her dwelling on what she lacks, which would lead to an unhealthy self-concept. “I want her to focus on what she has, because her cup is overflowing.” Sophia doesn’t know that she’s different and blind. She just knows this is her world. She’s very content being who she is and wouldn’t try to change herself. She has a way of getting to know somebody better than we do. She is an excellent listener and appearances don’t matter to her. It lets her know. people on a deeper level for who they are inside. She is blessed in so many ways and being her Mom is Christy’s greatest joy and reward. ”God never takes something without giving something. I am amazed with how fierce she is. I love to watch her adapt and am proud of her independence. Wow! There’s one amazing Mom! I think her words pretty well speak for themselves. Christy’s spirit of joyous commitment serves as an invaluable encouragement for any parent beginning the journey of raising a child with special needs.
