We were in the elevator, the first step in our trek to make our way back home after Parker’s doctor appointment. Â Me, the Brave Hero, and the Brave Hero’s truck, er stroller with oxygen bottle off to the side.
At the last minute a Dad and his little girl race to squish in. The Dad smiles at me and then looks down at Parker. As the elevator door closes, the Dad glances back up at me then quickly redirects his attention to what must have been a very interesting spot on the floor.
You know that funny in the tummy feeling you sometimes get when an elevator begins it’s journey?  We wait for it with great anticipation. Parker loves that funny feeling. I love Parker’s giggles and squeals of glee that announce our elevator has indeed left the launch pad.
The little girl shyly smiles at Parker and then looks up at her Dad who tries to pull her still further away from the kid in the special needs stroller.
The Father then turns his attention to a new spot, located this time at the back of our ride.
Our elevator lands and Parker blows kisses to everyone. It’s his way of expressing joy for a safe arrival.
The little girl blows her own silent kiss while I hold the button to keep the doors open and the Father grabs his daughter’s hand in a rush to make his escape.
Our paths cross and intersect as we make our way up and down the hospital corridors.
By now the little girl is offering up a small, quiet wave each time she sees Parker.
The Father still refuses to meet my eye, even after I deliberately stop to tell him how cute his little girl is.
Part of me understands not knowing what to say when first introduced to a kid with a trach, a straight line of tubing to an oxygen supply, and an obvious extra chromosome.
But another part of me, the Mama that resides deep in my heart, simply refuses, refuses to believe that the unknown and different that is part of our daily life overrides the cute little kid full of such obvious love for life and all those around him.
How hard is it make the choice to look at the smiling face, recognize the excitement; experience the joy that is also a part of our daily life?
I wanted to shake this Father. Not because he didn’t find my kid cute. Not because he was uncomfortable by all the different.
But because his daughter took her cue of how to react to Parker from him. One encouraging word from her elder and this little girl would have jumped into the opportunity of making fast friends with my kid. She wasn’t uncomfortable with all that accompanies Parker.
She was intrigued.
Curious.
Open.
Willing.
I’d like to ask a favor. The next time you find yourself in an elevator (or shopping mall, grocery store, classroom, church activity, etc.) with a kid in a wheelchair, or with an extra chromosome, or ANY kind of different for that matter; look them in the eye and smile. Maybe even say hello.
And think of Parker when you do?
Have you entered our Discount School Supply Giveaway?
Tammy, this was a great post and I think we can all learn a valuable lesson here. I try to be an example for my son and engage ALL types of people when we’re out. I love to make babies smile and try to speak a kind word or show an act of kindness to random strangers and I’m trying to teach him that one small gesture can make someone’s day.
Are you sure he was nervous about your son, or about all the expensive and clearly life-essential equipment that you had with you? I would have been trying to keep my kid as far away from the stroller as possible too, for fear of breaking something seriously expensive.
How do you want people to react to your son? Do you want him to treat them as they would any other child, even though he’s obviously NOT like most other children? This is the thing that worries me. Would it then seem like they’re just ignoring the elephant in the room? What if they talk to him like they would any other four year old kid, but then he can’t follow the conversation? What if they treat him like they would a child of his developmental age (if they somehow magically know what that is) but then they accidentally insult you or him because they’re treating your four year-old like a two year-old? What if they come off as insensitive for refusing to acknowledge that he’s different? What if they come of as patronizing for treating your child like he’s less developed than he is? I try really hard to treat people who are clearly developmentally different as I treat everyone else, by trying to figure out what they want in an interaction and giving it to them, but I’m always scared as h*** that I’m somehow making somebody angry because the truth is that most of the time I don’t KNOW what they’d want me to say. I’ve tried to figure it out by imagining what I’d want in that situation, but I’ve realized that what I’d want changes from day to day, and that what I’d want isn’t the same thing as what other people seem to want.
We have clearly defined social protocols for most people of all ages in society: coo at babies, smile at toddlers, make small-talk with preschoolers, etc, but there is no clearly defined social protocol for people with different developmental delays, and that makes it really hard for people to know how to avoid hurting somebody’s feelings, putting their foot in their mouth, or doing something completely moronic.
You share a lot about what people SHOULDN’T do, but what SHOULD they do?
Heidi,
First I’m so glad you took the time to express your thoughts and ask your questions.
Thank you.
I’m pretty sure I was on target with yesterday’s experience. Parker’s nurse was with us and when we got home we talked about it and came to the same conclusion.
Parker’s stroller is made to take abuse. There really isn’t anything breakable, it’s just a special needs type of model.
What would I like people to do?
I’d like them to understand that a kid with special needs is first and foremost a kid. They like the same kind of stuff as typical kids do. Parker loves books and balls and playing with friends.
And really, simply saying hello or sharing a smile and eye contact translates across any developmental delay.
I know that if someone makes an honest effort, even if that effort isn’t ‘perfect’, just the effort is very appreciated.
I’ve had people ask about Parker’s trach. I’ve had them ask what the tubing was for. I’ve happily answered because I remember when, before Parker, I wouldn’t have known either.
I’ve had kids ask what was ‘wrong’ with Parker. I’ve never taken offense. I just reply that there isn’t anything ‘wrong’, just different. And then explain that the trach is to help him breathe better, etc.
I’m always happy to answer a sincere question. No matter if it may have been asked in a an awkward manner. There’s a learning curve taking place on both sides here.
My goal is for the elephant in the room to take a back seat, or better yet to disappear completely.
The only way this can happen is if both sides take the steps necessary to bridge the gap created by the unknown.
And in order to do that we both have to have the courage to, make eye contact, say hello, appreciate the sincerity and NOT be offended by questions.
Because, Heidi, you are right in that it really is a two way street.
I call that “the look”, I’ve blogged about it before…it’s not the look you typically get from people, it’s the one that screams their quiet sympathies, pity, or an even curious wonder at what you must have done to make your kid a little different than their own. I hate the look, and generally address those who give me the look in a polite (yet belittling, depending on the degree of “the look”) manner
I wonder what happens to people as they mature in to adulthood that makes them see such drastic adversity in people? It’s sad, my kids don’t even notice when people are differently-abled…and I hope it stays that way
Having Brayden has given us all a huge insight in to the wonderful world of people and their ignorance!
A very powerful post that has brought out some very powerful responses. It really is sad for me to read, heartbreaking really. Because there is so much fear in this father’s behavior. I also get that, before we had Porter I wasn’t really sure how to act either. I was a checker at a grocery store there were 2 brothers who worked as bagger and they happened to have Down Syndrome. They didn’t like me much but I tried hard and it was nerve racking. I really wanted to be kind so I would smile and when I needed a bagger I’d page one of them. (Maybe that’s why they didn’t like me, I created work.) What’s frustrating to me are the people who let their fear rule them and they don’t try. They look and wonder, but never try. I need to decide how bold I’m going to be, because most of the time I just want to walk up and introduce them to my son. However, that could lead to a number of things. I am an optimist and like to think that the results would be mostly positive.
Why are we all so scared? We’re all just missing out on a bit more love in our lives. If people can’t understand that, it’s sad to me.
You’re right it’s to bad he didn’t encourage the friendly nature his daughter was showing, we need her to hold on to that!
Gosh, do I know this feeling. And it is just tantrums and speech with us. I sometimes wonder when we became so obsessed with perfection. Having kids is an amazing chance to change the way you view the world. Too bad this dad isn’t taking his cues from his daughter rather than the other way around.
Great post! We are quite familiar with that look. I think that is one reason that I so look forward to the Buddy Walk or our local Down Syndrome network meetings. It’s so great to go somewhere that Kayleigh is seen as a kid first and foremost.
Amen… kids with special needs should be treated just like any other child, especially by parents. Too bad that father didn’t recognize the opportunity his daughter was longing to embrace. He robbed her the joy of sharing in your sons enthusiasm for life. I’ve noticed that many kids with special needs have an extraordinary love and appreciation for life which they share with everyone they come in contact with… its so sad that little girl was robbed of that joy.
Tammy, what a beautiful post. Thank you for sharing your experience, and I hope the next time you see that Daddy in the elevator he’s had a chance to realize that he has other options.
There really is a dilemma here that is simply based on lack of education. The father did not know how to act and ould very likely have been worried about equipment and other intimidating gizmos. Yes, he could have taken social cues from his daughter, Parker, and even you Tammy.
But we live in a society where talking in elevators (and hallways, the grocery store….)is verboten. Because we don’t know how to talk to each other.
Educating the public already started with Parker. He smiled. He blew kisses. The girl answered back in her own way. She kept waving. She won’t forget Parker, will she.
Tammy furthered the education by opening doors to communication. Bravo to you for being so brave! (We mama bears have to bebrave, don’t we.)
Now here is where it gets hard. We have to wait. While Dad did not communicate back, I can guarantee that he did go home and talk about it, however briefly. He will think about it, if even for just a few moments. His short experience with Parker did effect him . The next time he has interaction with another child with special needs, he might just feel freer. Or the next time. Or the next. But it will happen.
Daddy and his cute little girl have been touched by Parker’s life. They will never be the same.
you were in a hospital for pete’s sake.
what a weirdo.
I’ll admit having my own special needs kid has made me more likely to make eye contact and smile, but I was not that unlikely to do it before I had her either.
Sorry you had this experience but I’ve got doctors who always seem to be studying the floor very carefully too! We have to laugh right?
Thank you for this post. It’s really helpful and honest.
I must say I absolutely loved this post!
My girls were 4 at the time. JayLyn was just starting to become very aware of the scare from her open heart surgery. We went to the beach, and she was running around playing and having a blast.
These 2 women ruined it with just one comment. One woman commented to the other about the scar and that she shouldn’t be allowed to wear a 2 piece bathing suit.
I was very upset. Her children had been playing with my kids like they had been best friends since birth. Then with her comment came her ushering her kids to a spot farther down the beach.
Part of me blew her off and explained to my kids that some people think of old people as having heart problems and not kids. The other part of me wanted to chase after her and tell her the scar is just a battle wound of life and its what made her the little princess that she is.
That was 3 years ago, and that woman’s comments still bothers Jay from time to time.
Samantha – I feel your pain. Unbelievable that someone would act so extreme over a SCAR, isn’t it? When my daughter was getting married, she was trying on a wedding dress that allowed her open-heart surgery scar to be visible. Anything she wears doesn’t have to have a very low-cut neckline in order for it to be visible, because when her surgery was done in 1987, the incision was (and still is) pretty lengthy. The woman at the bridal shop helping her was MORE WORRIED about hiding the scar, and my daughter was puzzled as to why this woman was so concerned about it, because having had it most of her life, she was kinda proud of it and, as she told me, it was “a part of her”. To her, it’s nothing more than a birthmark or any other thing on our body we just get used to because it’s always been there. (sigh) Ah, to be living in a world where there is tolerance! Can’t WAIT for the day….
I hate that look……we get it a lot and i want to say to them…just ask! it’s ok…..I love to talk about our grandson!!
Oh Tammy, I love you! This post really got to me. Every time I see a special needs child, I smile at them and who they are with. And I always think of my sweet friend Parker and how beautiful he is. The way you worded this is just spot on. The fact that that little girl looked past the differences and saw just how beautiful Parker is just goes to show how stupid adults can be!! I mean, they are the ones that make children cruel to others! That is truly how I feel. It is sad to think that father will corrupt his daughter, without even knowing it! I sincerely hope this post gets to a lot of people. You are a beautiful person Tammy. I love you Parker!! The fact that Parker smiles and giggles and is happy, despite all he has been through REALLY makes me stop and think about the stupid things I complain about. We all need a slap in the face now and then I think!
Love to all,
Amy
the father could have taken a lesson from his daughter and followed her lead.
WoW!
Those moments sneak in on me sometimes too. Most of my time and son’s development I have been seen pushing/walking with him, having a two person conversation where I’m the only one talking and I’ve had to put on ‘blinders’ from all the stares, the looks of surprise, the double takes.
But they do slip in and YES they are deeply awkward and somewhat painful… I profoundly believe that it is important to acknowledge all people – with a smile or nod – that is respectful and nurtures healthy communities. It does not matter who or what you look like…to reach out and beyond is so important.
There is another part that touched me in this and that is my isolation…I want those people to speak up or engage also because I feel soooo distanced from them. Because my child has special needs and obviously different…because my life is consumed caring for him and my energy is finite. I want people to say hello to my child and myself! Because we are humans and we need connection to live.
I welcome people being curious and asking questions….I welcome anyone engaging my child in a conversation and he face a challenge to follow it…and I as his advocate will facilitate…I welcome people asking me questions about his needs…I call kids out when they stare adn ask…what do you see? and they ask what’s that thing on his nose?(oxygen tubes) and the inevitable why??? If we adults would engage a little more honest curiosity there would be little need to worry about hurting someones feelings… Oh lord….Thank you for this post!
You are so right Tammy. When my son was in preschool, there was a boy in his class who was in a wheelchair. It was so cool to see my son walk right up to him, talk to him and ask, “What’s this for?” The boy showed him all the cool stuff about his chair and my son was quite impressed. He was another boy, pure and simple. I love that about kids. I learned a lot from him that day (among others!). I am really surprised (sad? discouraged? yes, those too) that that dad set such a poor example for his daughter. A simple hello would have been a great start. That’s all. Why is that so hard?
Tammy,
It has been since forever since I have come by dealing with the fact that the hopes our last child not being diagosed with autism fade under a horrible first assessment – ugh!! Anywho…I love what you wrote because although the my kids’ disabilities ar not physically obvious, you can tell they are different and I hate it when we et teh same situations. All they want is a smile in return, it takes such an effort for them t just try and make a connection with a complete stranger.
I will make sure that aside from thinking of my children when I see other special needs kids, I will think of Parker…
Even though I am not aroud as frequently as I would like, your family is always in my thoughts and prayers.
We do each and every time! And my kids know that we’re all different and that’s a *good* thing!!
Tammy & Parker:
OK, I’m writing this late at night while I recover from a migraine, so hope this is coherent. This blog hit a nerve and brings up past feelings of indignation of how Jessica was sometimes treated when she was a baby and had her health problems. People like this father have their own issues, and it’s unfortunate for them that they can’t feel comfortable around “different”, whatever that may be in their minds. Ignorant (and close-minded) people seem to have a hard time acknowledging those that aren’t EXACTLY LIKE THEM – whether being in the presence of someone with special needs, or someone who is not in the same class socially and dresses as such, if you know what I mean. I don’t know if you remember many years ago when we went to that little shop in downtown Provo with all the cute baby clothes when Jessica and Bailey were babies; I don’t remember the name of the shop but I DO remember the store owner commenting on how skinny Jessica was (what cheek!), and how that hurt me, because I was very much aware of her medical condition, how it affected her physically, and agonized over it every minute. I ABSOLUTELY LOVED telling her that Jessica was skinny because she had a heart condition that caused her to not gain weight. People like this Father, and that ignorant store owner, need to look inward at why they feel so uncomfortable (or superior?) around “different” and adjust their attitudes. And even if they don’t open their mouths, their ACTIONS relay the same message. People who feel uncomfortable with others that are so helpless, so full of love, and are “different” through no fault of their own, (and are BLESSED to have that trial in their lives, BTW), are pathetic indeed. If a person can’t embrace and acknowledge the sweetness and goodness of a child such as Parker, then pity these people (and shame on them), IMHO!!
Oh, Viv………..thanks so much for sharing your heart and your support for Parker.
Tammy, can you imagine if we had a world full of only little Parkers how much love and acceptance towards each other there would be? I’m sure it would be as near to “heaven” as we could experience down here….!!! I’m sure God had a purpose in sending down these little ones, not just to benefit themselves and their parents by learning from their trials, but so we could get a glimpse of what unconditional love really is….
This made me a little teary eyed. I know it all too well. I just can’t IMAGINE being a child trying to make someone smile and they won;t look at you.
I am the one in the chair and kids ALWAYS want to know why, this, that, etc.
Parents try and jerk them away and SHUSH them … but I speak up and talk to the child and answer the question mom/dad tried to dismiss or make sure I didnt hear.(more often when I DO NOT have the kids, when I do it seems different)
Priscilla – I’m naughty enough (and you may be, too, for all I know) that I would reach over and give those “shushers” a hard pinch on their behind – and then give them a little wink when they turn around in surprise and see it’s YOU – someone who, contrary to what they may have thought – is actually HUMAN with a sense of humor, just like a REAL PERSON! Wow, what a concept! Wouldn’t they be in a fix??? They can’t call the cops on someone who is in a WHEELCHAIR for harassing them, could they!!