Someone recently asked me how I deal with people who stare at my severely disabled son in public?
Truth is, every time I venture out into public with Jake I am essentially inviting the world to see a little of God’s grace in the life of my son. I try to maintain that gospel attitude when glances become stares.
Deep inside I realize every stare is a thought, perhaps a question that needs answered or a statement that needs to be clarified. So as the parent of a child with multiple special needs, I have learned to sometimes (not all times) interpret the stares and decipher the thoughts.
I have also formulated some responses to these stares–other than the initial, internal, parental-emotional, rhetorical response of, “What are you looking at?”
Take for instance a recent trip to a crowded shopping mall where, without warning, Jake got mad and threw a box of candy (which contained about 500 or so Jelly Belly jelly beans—his favorite snack). As the box hit the tile floor of the mall, it exploded like a hand grenade, shooting sugary projectiles for 25-feet in all directions.
People froze as if they had suddenly wandered onto an unmarked mine field. Then, like spectators at the scene of a bad car wreck, every eye in the mall zoomed in on my screaming, disabled son as my wife and other children scrambled to clean up the mess.
So I’ll use this multifaceted shopping-mall-crowd to break down the stares:
1. The angry stare: “Someone needs to get that kid under control. If that were my child I would…”
Response: You would what? You’re right, someone does need to get this child under control. Do you have any ideas? Really? Enlighten us all with your parenting secrets. Tell me what you know about autism, cerebral palsy and PDD-NOS. Maybe you can come to our house, spend an afternoon in our life, and then tell us how we can correct all of this. I didn’t think so.
2. The compassionate stare: “Oh that poor child and those poor parents, they look so weary. I wish there was something I could do for them”
Response: Why don’t you start by helping my wife and kids pick up the jellybeans? We are weary. Thank you for noticing (and that is a sincere thank you). What’s more important is the source of Strength behind our weariness. Your compassion is always welcome. Pray for us, but do not pity us. There are greater things happening here than any of us realize. We are blessed beyond measure to have a child like this.
3. The curious stare: “I wonder what is wrong with that kid.”
Response: I wrote a book about it. You should buy it. All the proceeds go to a great cause. Meanwhile, come and ask. (Preferably not right in the middle of an episode or I might emotionally vomit out, “What’s wrong with him? What’s wrong with you?”) If I do something like that please forgive me. When things settle down, I’d love to share our story with you. I especially don’t mind if you are a curious child or young person.
4. The polite stare: “I think they just saw me staring. I shouldn’t stare. I’ll smile and nod my head now just to let them know I wasn’t staring rudely.”
Response: Yeah, I saw you. It’s ok. I’ve been there too, not knowing what to do. Thanks for the smile and the head nod. I know what it means. Here’s one back at you.
5. The pretend to not stare, stare: “Don’t look. Don’t look. Don’t look. Eyes forward. Just keep walking. Pretend nothing happened.”
Response: A kid just threw 500 jellybeans down on the mall floor and is now throwing a screaming fit and you didn’t notice? Are you kidding me?
6. The empathetic stare: “I wonder what it is like to live their life. I am so thankful my children are not disabled. I wonder if I could handle that role as a parent.”
Response: It is heartbreaking sometimes, but there are God-sized amazing moments too. Go home and pass ball with your kids. Squeeze them tight. Take a long walk, have a long talk, eat peacefully as a family in a restaurant, get a babysitter and go on a date with your wife, and sincerely thank God for your typical family. But don’t forget that there are others out there that might need your help too. Get involved, volunteer, provide respite, mentor, pray, educate, embrace, befriend and most importantly learn…these families have much to teach.
I’m sure there are many more stares that could be interpreted and many more responses to be communicated by families with special needs everywhere. Maybe this post will help. Or maybe we should write a tract or a pamphlet and carry a stack with us as a hand out to onlookers in times like these.
The bottom line is this: the next time you’re shopping and a Jelly Belly grenade goes off, be cool. It’s ok to look. Just stop staring, and help us pick the darn things up.
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I really enjoy reading this. My son has CP and I find it so rude how adults stare. Once I was at a park with my son as we watched my daughter play. A kid was staring at my son and I look over smile at her …I heard her say “daddy whats wrong with that kid?” Her dad turn to her and said don’t look, look away. At that moment my feels got hurt and I wanted to run with my son. I stood there and watched them walk away….after they left I realized that parent was ignorant. “Hey Mr. Ignorant…next time come up to us and say hi and get to know us. You would be surprise by what you learn.” Next time I am ready for the next ignorant!
We have a son who is ten and Spastic quad . Cerebral Palsy, among other challgenges. All I can say is thanks and this is so perfect. I wish I could so eloquently express my thoughts the way you did. Did you read my mind? God bless you and your precious family.
I can so relate to this. I am a single mother who cares for my 28 yr old son, who is severely disabled with Cerebral Palsy. When I need to go to the grocery store or anywhere for that matter, I must take my son with me. My 12 year old son pushes the grocery basket while I push the wheelchair, until we get to the check out line, then my younger son pushes his brother around to try and keep him quiet. I know it is hard on my younger son. I am used to the stares, but I know it is harder on him. Recently after a recent grocery trip he said “Mom, I can see little kids staring at us because they don’t know any better, but adults? Come on now, that’s just rude! ” God Bless you & your precious family. Reading your posts really help from feeling so alone at times.
What a beautifully informing and supporting post. keep it up please
Wow. You have such wisdom, and put into words what I have felt the past 21 years as the parent of a child with cerebral palsy. I must add, also, that it is natural for children to be curious about children and adults with special needs. So, many times they will stare, or ask questions out loud. It is not rude for them to do so! What is rude is when the parent of the curious child scolds them for asking, or pulls them away without taking the opportunity to enlighten them! This behavior from adults breeds intolerance.
To a stranger, walking up to a child with special needs is like walking up to a mirror. How we react to that child reflects what is going on inside… a true image of their heart.
Sometimes people are simply afraid… afraid of how to act, afraid they’ll say the wrong thing, afraid of not knowing how to help. Thanks for giving some examples of how people who do want to help be a blessing to a parent.
Mine is the curious stare. Thank you for writing out this discussion. I always feel pressured not to stare, and yet I believe that it is through staring that the world becomes familiar and understandable to us. I am certain that I must have stared at couches, as a young child, and now it is no longer necessary to stare because I feel like I have a concept of them. And I stared at so many different kinds of people, back when I was too young to remember specifically. But I was shocked the first time a friend whispered to me about how different someone was, when that person looked so familiar to me. (In this case it was to a person with a particular color of skin). But that is when I realized that they are familiar now because I grew up around people of that color, and many other colors as well, whereas she had never been exposed to them before. But I seldom saw special needs kids throughout my life. The ones I knew at school were my friends, but I was so little exposed. And so many people, as young children, are snapped at by their parents if they even look at someone who is different in a way that makes their parents feel uncomfortable… it passes the discomfort and lack of familiarity down from generation to generation. I think once someone (or a type of change in a person, such as red hair or a differently shaped nose) becomes familiar, the curious stare just goes away on its own because the concept is now familiar. Then it is easier to interact with the person (or couch or new piece of technology) in a normal way instead of just staring at it. Please don’t think I am belittling your child by comparing them to a couch… I only mean that all things new are unfamiliar, until we learn enough to understand. I used the example of a couch because I think it is universal enough that everyone here is now familiar with couches, and might still realize that this was not always the case.
Ps. When I am caught staring, if the situation allows, I tell them the truth: “Your child is beautiful.”
I grew up with a severely handicapped sister, who the doctors said her mental ability was about the same as a 1 year old baby. She could not communicate, she ate with her hands, she had to wear diapers and to some made disturbing noises- to us her noises were like music. Not only did my mother and dad endure the stares but the words that were whispered just loud enough for them to hear were the worse. The most hurtful was “they must have done something really bad for God to punish them with a child like that”. First of all I will never believe that God gave her to our family as a punishment for anything, He gave her to us to bless our family and help us to see others through different eyes. She lived to be 33 and the hole that is in our hearts, God has filled with His love.
Great post. I’ve experienced all the stares except the angry stare.
My 2 1/2 year old daughter has CP and we just got a wheelchair for her a couple weeks ago. I was afraid this was going to be a difficult transition for me…at her age and level of disability we could almost hide her disability (although not trying to) by having her set in high chairs at restaurants, carrying her on my hip like any other child, using a stroller…which would mean those people that don’t know us from anybody else had no reason to stare BUT here came the wheelchair and it speaks loudly to everyone no matter where we go. I prayed for strength to deal with the stares that I knew would be coming. My prayers were answered because Avery is SO HAPPY in her chair. She is not constantly trying to hold her body up or fit into something not really suited for a child with CP. As we strolled through a crowded group of people at a function we attended this weekend, the stares started and many can fit under one of your above categories. I was totally amazed at myself (God again) I all of a sudden became so proud of my daughter, I could hardly hold it in. She was smiling and waving at people and soon the stares turned into smiles. I was so proud because I remember there were many months we never thought she would ever be able to smile or wave or get excited about anything. She almost saw herself as a celebrity! I understand that this won’t always be the case, but I am finally able to stop trying to fit her into the cookie cutter life that society puts onto all of us…I allow her to be her own unique self…the child that God planned for us to all get to know. How can I mess with that??
So right on! Been there done that, but I couldn’t have said it better! I tweeted, FB’d and pinterested this post!
Greg, this is so good, you nailed it! YES!
If I find myself staring – it is a different type of stare than those you’ve listed – you see i’m thinking – yes at times it was hard, but what i wouldn’t give to be back pushing my son around our local store – including any of the “stares” you listed. I would be thinking “I wish that was me with my son” <3 I tend to smile at the family,because thinking of my son makes me smile at his memory even if a little empty and sad.
Kim,
I have you in prayer. I am asking the Lord and believing He will bless you beyond all measures. Psalm 34:18 The Lord is close to the brokenhearted and saves those who are crushed in spirit . Isn’t it wonderful how God created us to have a memory? In times like this, we realize just how blessed we are to be able to recall all those precious memories. May those memories of your precious son be the bridge to carry you over to when you meet up with him again. <3
Thanks Greg….let me add one to your list! I am the mother of a 30 year old with severe autism, so I could be thinking…..”been there….am still there…..may God give these young parents the strength that only comes from You!”
Greg, this should go VIRAL! You put so clearly in words what virtually every special needs parent wishes they could.
This post was shared on facebook and I loved it! I was recently at Macy’s and my son, age 13 with gross motor disabilities, was hesitant about getting on the down escalator. We have spent years practicing not being scared! An older gentlemen saw that my son was a bit scared and quickly offered advice to me to use the elevator. I smiled at him and said, “I don’t want to deny my son the opportunity to be brave.” Surprisingly, we both got tears in our eyes. My son did get on the down escalator by himself and was so very proud when we got to the next floor down.
It is milestones like that that seem to bless the path we are given. I too am a parent of special needs daughter. To be able to tie her shoe at age 12 was a milestone for us. I have one moment in my daugthers life that I will never forget.
The children in her class ( all special needs ) asking me during 6th grade graduation why they did not receive honors/awards during the ceremony. It was then that I wrote all teachers, principals, super intendents of the school district to let my childs voice be heard…and the voice for all those classmates of hers who could not voice their opinion. I shared how how each and every one of these students has struggled through the years. Some more than the other. Some were learning to walk, speak, or hold objects in their hands..
Special needs children need recognition. They struggle by far more than the average student. If anything, these children should have been given a standing ovation! I did not hear back from anyone of the teachers, principals nor the super intendent. That hurt more than the initial hurt of them not getting recognition! My daughters treasures are laid up in heaven, and not down here on this earth. However, it does not hurt to cheer them on as they struggle with each task they try to master. Good luck on your path with your son…treasure each day. I love testimonies!!
*Stands and claps for the children, and for you.*
Honestly, I have begun to think that some of the stares (or refusals to even look) might mean, “I miss so terribly my beloved one who, too, many times seemed like such an out-of-control ‘burden’ yet now has gone and left a large hole in our family. Oh how we miss her, but telling people to enjoy it now does NOT help those in this type of moment! So just keep walking..” I personally have lost my mother and father recently, after a time of complete dependence brought on by terminal cancers, but also have two special children, along with three others, whose trips out can invite (sometimes unwelcomed) stares. Our daughter already has out-lived her specialists’ predictions by four years, but we seem to live in “the moment” when it comes to her. It seems that losing both my parents and having a special daughter on the ‘brink’ at times means now I almost grasp how I will feel when that time does come and I happen to come across your spilled jelly beans…Just a thought.
Absolutely! I was the primary caretaker for my grandson with Autism and whatever they want to call it. There are also the Special minutes “Seeing a butterfly, that’s a flying flower.” That was his first sentence without echolalia. Wow, I was blown away.
… one more stare…. ‘the i had a child with special needs and lost that child. so i tear up and am jealous of you in some ways…’ smile……