I was sitting in a Tim Horton’s enjoying a sandwich and a coffee the first time it happened. My then seven year old son sat across the table from me, smiling and flirting with the ladies as per usual. One of his new admirers (he has many) asked him from an adjacent table if he wanted one of her crackers. She must have felt sorry for him – there I was eating and he had nothing, not a drink nor food. Since he’s Deaf, I answered for him.
“He doesn’t eat,” I said with a smile.
It was all I could do not to laugh at her incredulous glare. I’m sure she wanted to ask me if I was nuts. She went back to her soup and completely ignored him for the rest of the time we were there, despite the fact that he was smiling and waving at her, trying to get her attention back.
My son Alex, up to that point had never eaten or drank a thing in his life. You see the tube in his nose in the picture?
He now has one implanted permanently in his belly. Why didn’t I just give the woman in the Tim Hortons that little bit of information? Let me tell you a story.
When he was about six months old I took him for a couple of hours out of the hospital that he called home for the first eight months of his life. I decided to take him to the mall since I wouldn’t have made it home and back before he had to feed again. I couldn’t leave the hospital, however, without equipment. Attached to his tiny body was a heart monitor. I went into the lady’s washroom to change him and a woman came up behind me to see him. She saw the monitor and asked what it was. When I told her I was graced with an expression of absolute terror and, no word of a lie, she ran from the washroom. THAT is precisely why I don’t tell people about his feeding tube.
Fast forward to when he was eight. I took him, my boyfriend at the time and a friend out of town in the car. I was driving and the friend, who knew sign language was sitting in the back seat with Alex. They were chatting and also sharing an orange – that is to say she was eating the orange and he was sucking on the rinds. For some reason he found them more appealing. (No, I’m not apologizing for that. HA!)
Anyway, we decided to stop at a KFC on the highway. As usual, we all got our food except for Alex. Two things you need to know at this point: Alex loves to suck on chicken bones, just so he can pretend he’s actually eating something and he is a clean freak, which means he HAS to be the one to throw everything in the garbage. So there the three of us sat, happily watching Alex flirt with a restaurant absolutely packed with people, suck on bare chicken bones and clean up after us. It was the general consensus that we should have brought the orange peels in for our little slave, for good measure.
The moral of this story is, if you see a kid in a restaurant not eating but seemingly having a good time, it’s probably best not to try to interfere.

April 7, 2016 at 12:28 pm
I’ll admit, that I can fully understand why people would raise their eyebrows in such a situation. But, what I love about this lesson, is that no matter how something looks from the outside, we have no right whatsoever to judge, because the *outside* is all we see. I can’t imagine what kind of strength you must have had in order to keep your mouth sealed.
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April 7, 2016 at 12:30 pm
Haha! It comes with practice. 😉
It’s taught me just that in spades. You really never know what motivates anyone to act the way they do. Some of the nicest people in the world have the worst situations to live, yet some days are more terrible for them… it’s why I always try to be kind no matter what.
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April 7, 2016 at 12:38 pm
That’s exactly right. I always try to do the same. We don’t know why people sometimes behave the way they do or not do what we’d expect someone to…but that’s exactly the point – we don’t know why. It’s important to show compassion and give people the benefit of the doubt, just as we would like them to do with us.
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February 28, 2014 at 8:31 pm
As a special needs parent of a child with extreme feeding difficulties – this post touches my heart in ways I can’t describe. So I’ve nominated you for an award. Click the link for acceptance details 🙂
http://advocacyautismspecialneeds.wordpress.com/2014/02/28/dreaming-of-flowers/
Love, Julie and Stephen
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February 28, 2014 at 8:33 pm
Thank you so much! I’ll come and check it out. 😀
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May 10, 2013 at 2:14 pm
Hi there visiting from the Joy of Motherhood link up. I don’t know why people don’t practice basic etiquette, there was no reason for that lady’s response. Love that your son entertains the people at restaurants though. I sense he has an awesome personality! Happy Mother’s Day!
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May 10, 2013 at 2:54 pm
I find it amazing the way people react to special needs kids. It’s like when I tell people my son is Deaf and they whisper ‘Oh, I’m sorry.’ … I never know how to respond to that!
Thanks for the visit and Happy Mother’s Day to you too! 😀
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May 9, 2013 at 11:32 pm
Sounds to me like some good examples of why we all need to work on being less judgmental and just let everyone take care of themselves a little more. Great stories thanks for sharing them!
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May 10, 2013 at 6:06 am
Thank you for reading 🙂
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May 9, 2013 at 10:57 pm
What an incredible story! Your son sounds like a great kid! Unbelievable that the woman ran. To each their own, I guess. But I have a hard time understanding it.
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May 9, 2013 at 11:00 pm
I always guessed she ran for the same reason some people avoid hospitals like the plague… they’re afraid of anything medical. At the time though I was like, ‘What the hell?’ 😛
Thanks for commenting. 🙂
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May 3, 2013 at 6:02 pm
Hello missus, I’m just nominated you for the Super Sweet Blogger award http://sistasertraline.wordpress.com/2013/05/03/oh-sweetie-darling/ for being so very wicked 😉 enjoy x
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May 3, 2013 at 6:40 pm
Thank you so very much! I will come and have a look on your site 😀
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May 2, 2013 at 5:13 pm
That is such a great story. I had never heard of such a thing. I will never question a mom. And I certainly wouldn’t run from the room. What a wuss. But then, I shouldn’t judge her either. We don’t know her background. Shame on me!
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May 2, 2013 at 5:19 pm
Takes all kinds, right? 🙂 Thanks for the comment!
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May 2, 2013 at 3:54 pm
And I thought I had it rough explaining that my 4-year old learned to read before school because his older brother kept mis-reading the clues on the xBox games and he knew he was being jacked with….
I applaud you and your humour in the face of judgement and ignorance – I want to learn how to be you when I grow up…
🙂
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May 2, 2013 at 4:05 pm
Haha! It’s a choice – smile or cry. Until it actually hurts someone I’ll keep smiling. 😛
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May 2, 2013 at 4:07 pm
True – but still often give in to my inner “fight instead of flight/smile” nature…
🙂
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May 2, 2013 at 9:14 am
I’m a benefit of the doubt person, which sometimes translates to me in rose-colored glasses.The image of him sucking chicken bones while strangers stared amused me a great deal. I would’ve found it funny, and not alarming. As for the lady in the washroom? I don’t understand her.
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May 2, 2013 at 9:37 am
I always figure that people like that woman in the washroom have had really bad experiences in hospitals and can’t stand the sight of the equipment.
It’s great that you give people the benefit of the doubt. I wish more people did! 🙂
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May 1, 2013 at 9:08 pm
Your son is blessed to have such a great mom. My oldest son had a strawberry hemangioma on his face when he was little. It has since disappeared but for 4 years it was very visible and prominent on his face. In the grand scheme of things it was a minor imperfection and certainly not life threatening. However, I was amazed at how rude people could be. I was asked regularly, with disgust in their voice, what’s that on his face?! People would point at it, whisper about it, and talk about it in front of him as if he wasn’t there. It was a very eye opening experience. It definitely made me think of what it might be like to have a child with a serious illness or disability and what their parents must go through with strangers. You and your son are in my prayers.
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May 1, 2013 at 9:36 pm
Thank you so much 🙂 After a while you just ignore other people’s reactions. They’re not going to stand around for a lesson in manners, so I figure what’s the point? Eventually they are going to come across someone who has or loves someone with a severe disability (there are so many, unfortunately) and then they will learn and perhaps be kinder next time.
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May 1, 2013 at 10:45 pm
My husband and I have a somewhat sick sense of humor. Once we were hanging out a hotel pool with our son when he about 8 months old. His strawberry hemangioma was very large and noticeable. We could see people on the other side of the pool pointing and discussing our son’s strawberry hemangioma. We couldn’t help but laugh and say out loud “I am not an animal!” It made us laugh at the situation and our son wasn’t old enough to understand so I knew we weren’t offending him.
After awhile I forgot about his strawberry hemangioma. When people would stare it would take me a minute to figure out what they were discussing because I just didn’t see it anymore. It became pretty easy just to ignore other people. I didn’t let their ignorance stop us from living our lives.
You’re right – why try to educate folks who really aren’t interested. Keep on living and smiling.
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May 2, 2013 at 10:33 am
Worrying about it just drives you crazy, and then you don’t want to go out any more. Been down that road too. There was a time when my autistic son (then 9, now 17 years old) thought it was funny to touch people’s bums in malls. Now THAT was embarrassing. 😛
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May 1, 2013 at 6:11 pm
Ha! I’d have love to have seen their faces in KFC! Not being a fan of junk food I’d have gone for the bones too…. 😉
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May 1, 2013 at 6:18 pm
Oh he was all happy, waving at people, showing great interest in these bones that seemed to be his greatest treasure in the world, cleaning off the table while we sat back and digested our food… People were waving at him, then looking at us, waving at him…
It was pretty priceless.
Thanks for commenting 🙂
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May 1, 2013 at 6:20 pm
Ah…people are wankers aren’t they….
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May 1, 2013 at 6:23 pm
That pretty much says it all
🙂
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May 1, 2013 at 4:19 pm
It’s interesting how our perception of people change when we encounter a child with special needs. I have a step-son that can hear but cannot speak. He’s a teenager now and we always get stares when we are out and at restaurants. He is a perfectly capable young man, he just cannot feel his mouth to eat and speak. Eating can be a titch messy sometimes and he has been very inventive in communicating with others. Dealing with a special needs child/person allows you to be more open minded toward others. Thank you for educating others with this post.
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May 1, 2013 at 4:47 pm
I think people are naturally afraid of what they don’t understand, so they tend to avoid it at all costs. Like the first woman – okay he’s obviously different. Before she knew that, she was quite happy to make friends with him. After she found out she wanted nothing to do with him.
I just wish more people realized that people with special needs ARE people. With feelings and everything.
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May 1, 2013 at 5:24 pm
I completely agree with you. It breaks my heart every time I see someone not give my step-son a chance. Kudos to you for being a great parent to a special needs child! Sometimes it’s hard but the rewards are great.
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May 1, 2013 at 5:29 pm
Thank you 🙂 And all the best to you and your step-son!
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May 1, 2013 at 4:05 pm
Your telling of this story is like a breath of fresh air…love your sense of humour. And the pic of little Alex is adorable. Thank you for sharing.
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May 1, 2013 at 4:11 pm
Thank YOU! 🙂
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May 1, 2013 at 3:14 pm
Huge respect for your utter commitment to your son! I have no experience with such medical things, and my heart would weep for your baby, and swell for you and for the relationship of love between both of you. Glad I came for a visit, and I am bookmarking to come read more.
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May 1, 2013 at 3:17 pm
Thank you very much! I’ll take a look at your blog as well 🙂
And btw, I was just trying to get something other than a 🙂 out of OM :p
😉
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May 1, 2013 at 3:03 pm
I absolutely love your sense of humor that went with this story. It sounds like the feeding schedule can be kind of grueling for you. And I can’t believe that woman ran out of the restroom… I wonder what was going through the woman’s mind in the restaurant? lol Your son sounds absolutely precious, Linda 🙂
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May 1, 2013 at 3:08 pm
Thank you thank you 🙂
Yeah, I don’t get much sleep. But he’s actually starting to drink now, so maybe one day we’ll get off the pump.
I’m sure people look at me as a horrible mother who doesn’t feed her child quite often. He loves restaurants!
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May 1, 2013 at 3:39 pm
That would be awesome if he could get off the pump 🙂 this is just another example of why we should never judge other people!!! Little do they know how much work you go through to make sure your son gets plenty of food!!
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May 1, 2013 at 4:10 pm
It’s ironic. When in fact he probably gets more out of his formula in a day than most people do – and no junk food – all people see this poor undernourished kid. What they don’t see through his cheerful exterior are the multiple surgeries, the frequent hospitalizations and the frustration in not being able to communicate with most of the population. You really do never know.
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May 1, 2013 at 5:59 pm
People can be so clueless sometimes 🙂 He is blessed to have a mom like you, Linda
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May 1, 2013 at 6:04 pm
So nice of you to say, thank you 🙂
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May 1, 2013 at 2:08 pm
I really don’t understand why the heart monitor would send that woman running in horror. Maybe I’m not the right kind of mental for that path of logic.
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May 1, 2013 at 2:17 pm
You’d be amazed at how some people react to medical equipment. One of my kids’ father’s brothers (their uncle) can’t handle the concept of the feeding tube. He equates the tubing to that of an IV – which tempted me to hang it in the kitchen where I rinse it out with red wine in it… but I decided in the end not to waste the wine. hehe
I’m slightly evil that way. 🙂
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May 1, 2013 at 2:20 pm
Very evil and that would have been a waste of wine. I did wonder if it worked like an IV. I don’t know much (i.e. anything) about medical equipment.
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May 1, 2013 at 2:23 pm
The pumps are very similar and so is the tubing. The only real difference is that I don’t have to open a vein every time I feed him. There’s a little fixture in his belly to attach it to.
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May 1, 2013 at 2:28 pm
Got it. Doesn’t sound that complicated in that way.
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May 1, 2013 at 2:31 pm
Nah, I’ve been feeding him this way for almost 13 years now. It’s just the hours it takes to feed him that’s the hard part. I’m up at 5:30 to feed him (while he sleeps) so that he can catch the school bus at 8am.
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May 1, 2013 at 2:39 pm
That sounds rough. I find it interesting that he can eat while sleeping and not wake up.
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May 1, 2013 at 2:43 pm
It doesn’t take any effort on his part. It’s just being pumped in. One of the benefits is that I never have a problem giving him medicine, no matter how bad it tastes! 🙂
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May 1, 2013 at 2:46 pm
That’s lucky. Getting my son to take medicine requires various wrestling holds after a chase.
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May 1, 2013 at 2:47 pm
I hear ya. My other two were the same.
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May 1, 2013 at 5:05 pm
🙂
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