What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Petra.
What I want you to know is that when my 6 1/2 year old is having a meltdown in the grocery store it’s because she has sensory processing disorder. Her brain thinks that the sounds and sites she is taking in are about 10x the normal…all the time. She lives in a world that is constantly overstimulating her and sometimes it’s just all too much.
What I want you to know is that my daughter being warm and friendly and open to you and taking a special interest in you even though you are a stranger isn’t to make you feel awkward. She is genuinely that warm and interested. Maybe we can all take a lesson from that.
What I want you to know is that when my daughter says “I can’t close my eyes” when you are telling her to count to play hide and seek is that she really genuinely can’t. Her body will not tell her brain to close them voluntarily. She tries. Please believe her.
What I want you to know is that she is chewing on that pen, or your child’s toy or that random piece of plastic not because she is gross and doesn’t consider the germs but because her brain still explores her world through her mouth. Think of a little baby and how they chew on things to discover them. Her brain sometimes still needs that extra input to take in all that she has around her. Try re-directing her towards some food that is crunchy or chewy. It helps.
What I want you to know is that she isn’t a messy eater on purpose. She isn’t trying to gross you out by shoving food into her mouth and half of it falling back out. She is trying so hard. But her brain wont tell her to move her tongue properly. Thanks to therapy she is able to lift it up now but still cannot move it side to side. Take a bite and chew slowly and think about that one. It’s awfully hard to eat without your tongue working properly.
What I want you to know is that just because her brain works differently doesn’t mean she doesn’t understand. She picks up on your attitude and emotions faster than most adults. So please be careful what you say around her, especially if you are voicing your frustrations with her behavior or actions. She knows you are talking about her. She can hear you. And more importantly she can understand you.
What I want you to know is that parents of children with disabilities of all varieties need support. They often feel lonely and alone and like no one understands. And you might not. But trying to…taking the time to ask questions, educate yourself and make time for that family…that is all the understanding they need. And they need it badly.
What I want you to know is that I want people to have grace for my daughter and at the same time treat her like she is a “normal” 6 year old. I don’t want her to be coddled or babied. I want her to be included. But I also want there to be grace for the behaviors she exhibits that are not ‘normal’ six year old behaviors.
What I want you to know is that I think educating your children about people who have mental disabilities/disorders/etc should be included in the ‘we are all made differently…some people have blue eyes, some people have brown skin, some people have curly hair, some people are tall, etc” conversation. Part of the negativity attached to phrases such as “special needs”, “mental retardation” (which literally means someone’s brain has developed at a slower rate than the next persons), etc…comes out other children picking on their peers for being different than themselves. Please tell your children that some people’s brains work differently than theirs. Please. My daughter deserves a chance to be known and loved and not defined by being different but celebrated for who she is.
Mostly what I want you to know is that children with disabilities are worth getting to know. My daughter may not walk well or talk clearly. She may be developmentally delayed and struggle with many day-to-day tasks. But she is is so warm and caring and loving. She is the first to encourage you, to tell you you have done well and to let you know she believes in you. Many things we do without thinking are major obstacles for her and yet she doesn’t let it affect her joyous, life-is-beautiful view of the world. Oh, if we all had a greater measure of that ability…to great each day with a smile and to believe life is worth fully-living no matter what we are facing.
What I want you to know is that my daughter being warm and friendly and open to you and taking a special interest in you even though you are a stranger isn’t to make you feel awkward. She is genuinely that warm and interested. Maybe we can all take a lesson from that.
What I want you to know is that when my daughter says “I can’t close my eyes” when you are telling her to count to play hide and seek is that she really genuinely can’t. Her body will not tell her brain to close them voluntarily. She tries. Please believe her.
What I want you to know is that she is chewing on that pen, or your child’s toy or that random piece of plastic not because she is gross and doesn’t consider the germs but because her brain still explores her world through her mouth. Think of a little baby and how they chew on things to discover them. Her brain sometimes still needs that extra input to take in all that she has around her. Try re-directing her towards some food that is crunchy or chewy. It helps.
What I want you to know is that she isn’t a messy eater on purpose. She isn’t trying to gross you out by shoving food into her mouth and half of it falling back out. She is trying so hard. But her brain wont tell her to move her tongue properly. Thanks to therapy she is able to lift it up now but still cannot move it side to side. Take a bite and chew slowly and think about that one. It’s awfully hard to eat without your tongue working properly.
What I want you to know is that just because her brain works differently doesn’t mean she doesn’t understand. She picks up on your attitude and emotions faster than most adults. So please be careful what you say around her, especially if you are voicing your frustrations with her behavior or actions. She knows you are talking about her. She can hear you. And more importantly she can understand you.
What I want you to know is that parents of children with disabilities of all varieties need support. They often feel lonely and alone and like no one understands. And you might not. But trying to…taking the time to ask questions, educate yourself and make time for that family…that is all the understanding they need. And they need it badly.
What I want you to know is that I want people to have grace for my daughter and at the same time treat her like she is a “normal” 6 year old. I don’t want her to be coddled or babied. I want her to be included. But I also want there to be grace for the behaviors she exhibits that are not ‘normal’ six year old behaviors.
What I want you to know is that I think educating your children about people who have mental disabilities/disorders/etc should be included in the ‘we are all made differently…some people have blue eyes, some people have brown skin, some people have curly hair, some people are tall, etc” conversation. Part of the negativity attached to phrases such as “special needs”, “mental retardation” (which literally means someone’s brain has developed at a slower rate than the next persons), etc…comes out other children picking on their peers for being different than themselves. Please tell your children that some people’s brains work differently than theirs. Please. My daughter deserves a chance to be known and loved and not defined by being different but celebrated for who she is.
Mostly what I want you to know is that children with disabilities are worth getting to know. My daughter may not walk well or talk clearly. She may be developmentally delayed and struggle with many day-to-day tasks. But she is is so warm and caring and loving. She is the first to encourage you, to tell you you have done well and to let you know she believes in you. Many things we do without thinking are major obstacles for her and yet she doesn’t let it affect her joyous, life-is-beautiful view of the world. Oh, if we all had a greater measure of that ability…to great each day with a smile and to believe life is worth fully-living no matter what we are facing.
