The Sound of Many Voices
Over time I have collected comments I have heard people make about what it is like for them to be the mother or father of a child with special needs. I often find there is something very revealing in a single sentence, perhaps like a snapshot that creates a picture of a moment out of time. These are a one-shot glimpse into others' lives, with a diversity of experience, emotion and expression. I hear comments made off-hand, a few in humor, and those things said that are very well thought out and are a sum of an individual's or a family's life experience.
My collection of quotes is continually growing, I've put together a few of the ones that have made a memorable impact on me. If you are a parent, family member or friend of an individual with special needs perhaps you will relate to some of these comments. There is a depth of understanding in the words of these participants.
These statements are not in any order of importance, I randomly selected them out of my notebooks. I originally wrote them down because something about the comment struck me at the time that these were words worth considering.
Mother: "You have to become a medical expert in the disease your child has, and be willing to confront a doctor when they won't listen to you."
Father: "The hardest thing I face each day with my son is my guilt I feel for how he is, like I am responsible for his disability, when all the while there is nothing wrong with me. So how do I relate?"
Sibling: "I don't blame my brother for his disabilities, but I don't like the two different standards we live with. On my last birthday my brother threw my birthday cake on the floor. Everyone acted like it was nothing, and mom just said, 'Well, I guess we'll just have more ice cream then!' I would never have gotten by with doing something like that. Why do we have to accept bad behavior just because he has differences?"
Father: "I kind of feel like I am sharing my son with the world, we have an amazing group of friends and relatives who are actively involved in his life. I have to say that I have never once felt alone in any of this, I've really been blessed."
Father: "I feel like there is absolutely no one in the entire world that can relate to my life and how I feel."
Mother: "There are times when I feel like a single parent, even though I know I am not, but I have to do so many things alone. Doctor appointments, school meetings, therapy sessions, interviewing care givers, all of it. Sometimes I wish I could just take a break from it all but I know that will not happen."
Father: "I hate the sad looks I get from people, like I am some sort of pitiable creature. It's totally stupid."
Woman with Cerebral Palsy: "A man said to me that he was afraid of me because of my disabilities. I answered him back that I am afraid of him because I can't see his disabilities."
Child with special needs: "People talk around me and over me like I am both deaf and completely stupid. I'm right here people, and I hear and I understand every word you say."
Observer at a party of people affected by Downs Syndrome: "This is a most interesting experience. I've never seen so much love being expressed, these wonderful people have absolutely no idea of what it means not to love. I think I am the one who is handicapped."
Mother: "I meet the most interesting people, people I know I would never have even known about if my life were different. Being the mom to my son who has a rare disease has opened up to me a world I would have never known and it is incredible. There is a depth and a bond I find among people that I don't see in other places."
Father: "I lead two completely different lives. I am one man on the job and with the guys, and then I go home and I am a totally different man being dad to my son with special needs. And these two worlds in which I live never, ever cross paths."
Adult born with a disability: "When I was little the school did not know what to do with me so they put me into special ed classes. Growing up I had no idea that these kids I spent all day with weren't normal."
Single mother of adult child with disability: "I'm not a hero, I've just done what I had to do and it never occurred to me to ask myself if I was ok, or happy or not. My kid's success is my success I guess, and I've never really known anyone else whose life was like mine."
Father: "My wife and I haven't gone anywhere together for over 20 years, one of us has always had to stay behind to care for our daughter. I can't imagine what it's like any more to be married and go to places and events together."
Mother: "When I was young I prayed and asked God for an interesting life... boy did I get it."
Sibling: "I've overheard people say our family isn't normal. Really? Can you show me a family that is like totally normal? It seems to me that you can't get much more normal than we are. Just because one of us is different does not mean we are not a normal family."
Child with rare disorder: "I would like the teachers to ask me what I want, or what I like, or what I would like to do. They assume they know what I need or what is best for me. I think if they would spend more time thinking about me and not about my disability, it would be better."
Father: "When my son was born I felt like God had left me. I couldn't understand why. But now when I look back over the years the only things that seem to stand out to me are the blessings that have never stopped."
Mother of two children with a rare disease: "What it feels like is that you had to walk through a fire and survive. There are times when you are choking and can't breathe. There are times when the smoke is so thick you can't see. They are times when you are so tired you don't think you can make it. But you do make it, and along the way incredible things happen. You are stronger, you are wiser, you are better for it all, and you've conquered the pain. Then, when your second child is diagnosed, it's as if someone is saying to you, 'ok, now you've got to do it all over again."
Young woman with a disability: "When my mother was carrying me doctors advised her to abort me. I am thankful every day that my parents did not listen to those doctors."
Father: "I had to learn it's not about me and my dreams, but that it's all about the dreams that we can create together, through all the obstacles and all the struggles."
Father: "People ask me how I deal with the challenges in raising my daughter. I don't feel any challenges, I only feel privileged to be her daddy."
Mother: "My son, through all his struggles and needs keeps us laughing. He's the glue that holds us together."
Elderly neighbor to a family of a child with severe brain injury: "Your daughter comes through the gate into my yard to hug me every day. I look forward to her visits and her hugs so much, because it is love that makes us human, and she knows how to love better than anyone I've known."