Trust Issues

Yesterday we took Charlie to our old college campus–it was Homecoming weekend. When your football team is in the top ten, Homecoming is almost a non-event. People show up for the big rivalries and Homecoming is pretty quiet by comparison. So we walked around campus, checking out the decorations, investigating new construction, visiting old friends, and other fun stuff.

One of Hubby’s colleagues came along. He’s from another country and so the antics of a large state college Homecoming celebration were something he wanted to see. He brought his wife and son who is about Charlie’s age.

Boy in an LSU t-shirt

My husband works with some really fantastic people. It’s a small, start-up company and the kind of place where people willingly work overtime and even hang out with each other when it’s not required. They have been wonderful with Charlie since day one and that includes uncomfortable discussions about health insurance.

But I’ve noticed lately, that I’m not real good at handling their pro-Charlie behavior. Not just the people from the office either–basically, anyone who I haven’t known for the last five million years gets the same bizarro response from my limbic system.  They lean in, they greet Charlie with wide smiles and me? Well, first my stomach starts to churn. I observe and hope that Charlie “does OK.” I brace myself for his usual M.O.–drooling, looking away, or flopping over–the kinds of things that signal “not normal” like a police siren for the disabled. I worry about the food on his shirt and whether or not he’s got his cute shoes on.Boy in an LSU t-shirt smiling big

I don’t know why I do this. When you show up with your kid in a wheelchair, I’m pretty sure the expectation of normalcy goes out the window. Was it our years of living in the disability closet that has my mind all confused? Am I still worried we won’t be accepted? That somehow we’ll be judged as lacking?Man holding boy both wearing purple

I should be celebrating these people. If the shoe were on the other foot, I’m not sure I’d have their grace. Is that the problem? Do I just not not “get it?”

I’m protective of Charlie–I have been since the very beginning. I want him to feel loved and accepted. I want him to have a place in the world. How on Earth will this every happen if people can’t look at him without me freaking out? It can’t. I’ve got to handle this. I’ve got to get better. I’ve got to stop worrying about being rejected–sometimes you get rejected–that’s no reason to stop going after what you want.

Now to figure out how. I swear, I had all the answers before I had this kid.

Boy on Dad's shoulder smiling

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  1. He’s a beautiful, precious child. What people choose to see or not see rests on their shoulders – all the good and all the bad. The smile of a child, whether he’s in a wheelchair or on a tree limb, is the smile of a child. It’s infectious and charming! Nothing but love there, that’s for sure.

  2. Being mom always entails these feelings to a certain extent, and yours are magnified largely because of the way the world looks at anyone with a disability. You see Charlie and, despite all the physical stuff, you love him and know him deeply…and it’s tough knowing what will and won’t set you off. Since your husband IS in a great situation with great people, maybe you can use those events with them to expand a little more and let your taut trust line out a little. Opportunity, not ordeal. Hang in there.

  3. It’s hard to let go of what we think of people and their judgment (or what we think their judgment will be) and I struggle with this all the time about my kids who are different out in the world. I *try* to trust that everyone’s actions are pure until I know otherwise. It’s not always easy I admit, but it does get better with time. For my kids, their disabilities are hidden until you are around them for a bit and I always feel like I have to “out” them. Sigh.

    • So much truth to this–you spend your whole life worrying about what other people think and then you have a child and you don’t want them to do that. Complete paradigm shift.

  4. Being a mom gives you that gene of wariness. Let these people love Charlie the way that you do. It really does take a village to have good sources of strength and support. You are an outgoing person and look at Charlie, he is so adorable! How can people not be smitten with him? Go with it and see where you heart and your gut go is always a funny, quirky thing..

  5. Ha! That’s right! We all had all the answers before we walk in the shoes we walk in now!

  6. While I have not experienced your exact situation I can relate to letting the fear of something ruin the present. The funny thing is that once the bad thing finally happens I can relax and let it go. I hope this will be one of those things where you don’t have to experience the rejection but simply realize one day you don’t worry about what other people are really thinking. Just dance with that baby and enjoy!

    • You’re right of course–I’m just waiting for the other shoe to drop. If it went ahead and dropped, I’d deal with it, so I don’t know why I worry so much.

  7. Meeting new people with Charlie is most definitely hardest for you, but I’m trying to imagine how I act, or would act, for the first time around Charlie or a child like him–and his parents–and know that I would have no intention of “acting fake”–but I would want so much to convey to you and to Charlie (or another friend) that I love and respect him and accept him exactly how he is, and would do anything to accomodate him and make both of you comfortable with me–but how do you do that in a first meeting? If I was unsure of how to act at first, it would be for those reasons. And then I would walk away worrying for the rest of the day if I said and did the right things, if you thought I was full of bs, etc. I hope that whole paragraph made sense. I know it was just one big long run on sentence.

    • Toni–I totally get this. I have a similar experience when I’m around people who are gay. I want to give off a “I accept you the way you are vibe,” but instead I act like a complete bozo. It’s bad. My attempt to “be cool” are so not cool it’s not even funny.

  8. Erin Margolin says:


    You are a special, incredible mom. I know Charlie is so lucky to have you. While I know you do your fair share of worrying, I wish you could take some of that weight off your shoulders. If you/Charlie get rejected, it’s not you, it’s THEM. THEY are the ones w/ the problem. I myself would probably be nervous upon first meeting CHarlie just because I wouldn’t want to do/say the wrong thing. And if my girls were with me, well I would be petrified they would ask a question that would offend you (though I talk to them a lot about differences and wheelchairs and people who have diabilities, etc.). But Charlie is so cute and I am so excited to hopefully one day (SOON) meet both of you…..and I pray that you will forgive me my nervousness and just TEACH me. Tell me everything. SHOW me. I want to know what your days and his are like. I’d love my girls to meet Charlie and for you to talk to them about him. Even though as almost 5 yr olds, they would have lots of questions and be very curious….and I’d be embarrassed about them and if they stared a bit (we have also talked about this)……

    I hope this comment in and of itself isn’t offensive….??? I adore you, Katy. Your blog is amazing, you FLOOR me with your thoughts and intelligence and willingness to share all of this.

    Thank you, Katy.

    • Erin: I really do adore children and have been known to shout at my radio that questions are better than avoidance. Really. I might still be figuring out how to answer them appropriately, but I really am a teacher at heart and adore kids and teaching them. Please don’t ever be petrified about your children saying the wrong thing–even if they said something that wouldn’t be OK for an adult, it’s a teaching moment.

      And you? Well, ask away. I think I handle questions pretty well-apparently it’s just general friendliness that leaves me not knowing what to do–should I explain more? Don’t worry about it? Gah! Maybe that’s the issue–I’m not sure the correct way to behave in these situations.

  9. You are being a little freaky about it.

    I’m sure you’ll get a handle on it. You always do.

    Has The Hub lost weight?

    • Nadine: YES! He has lost so much weight–I told him he looked like a bobble head in that picture.

  10. Man, do I know what you mean about this! Truth be told, I have trust issues in general, but I do get a little weary when meeting new people and how they will react to Emily’s quirks. I think I care far too much what people think and really don’t want to pass that on to her, but so far, that is exactly what I am doing. UGH!

    Recently I took Emily to a children’s hospital for an appointment. I have only been home with Emily since August so I have been sheltered from a lot of her appointments and stuff. Mostly I have seen Emily around typically developing children. I still don’t have good answers to all of their questions, but I am working on that. But anyway, what threw me off about this trip to the children’s hospital was that there were quite a few kids in wheelchairs and with various disabilities. And I found myself not really knowing how to act around them. How crazy is that? My child is in a wheelchair! How could I not know how to act? Even though Emily is 3, I feel like I am just learning about this stuff and it frustrates me. Shouldn’t I have a better handle on this by now?

    • Ahhh. . . you’re too hard on yourself. I’m not sure how I would handle other disabled children were it not for our ABR trips where everybody is moderately to severely disabled. I just learned to smile a lot and talk directly to the kids–even if they don’t answer. I might be terrible at the whole thing, but I am comfortable and I’m sure you will be with time and exposure.

  11. This is a great post. I think so many of us walk on eggshells around people, uncertain how they’ll judge us and our kids. Even with people who tell me that they want to be around us whether Little Bird is having a good day or a bad day, I wonder… It’s really MY issue, not theirs, isn’t it?

    • That’s what I think about myself. There are situations where we just don’t bring Charlie. Everyone else would probably be fine, but we hate to risk it.

  12. Beautiful post, thanks for your honesty. Try not to look at it as rejection of him or you, if people freak out or clam up it’s them not knowing how to handle a new situation. I’ve handled situations like these, meeting someone disabled, very well before and totally clammed up at other times. It was me caught off guard and choosing to smile rather than say something “wrong”. I try to make an effort to do th right thing…but the right thing could be different for every family. Good luck on your quest! I’d love to see a post about what a good reaction is, because a lot of us just don’t know what to do. I’ve only recently learned how to be normal because my friend has a child with severe mental handicap. My time with thm has been such a blessing to me, to see God’s goodness in all His creations and the gift every lie can bring.

    • Well, thanks for suggesting a post topic! I think that you are completely right–being around ONE disabled person really changes things–it gets easier. Lord knows, I used to look away quickly and now I smile and make eye contact. Our experiences change us.

  13. *life* not lie :)

  14. Moo saves his dribble and incomprehensible screeches for people I want to impress.

    Katie, the key is to keep with what you are doing and treating him like any other child. Cause as people watch you treat him with respect and equality, they in turn will treat Charlie the same. And one day, he will come out with a gem which will make a stranger stop and consider their perception.

    They don’t need to see what you see, they just need to know that you see something spectacular.

  15. First off you are great! But its not you its always in some way fear what others may say think or even reject us on. Sometimes I take my kiddies (cousins) with me somewhere and they may say something that makes me cringe in fear because I don’t feel its proper. It’s just the nature. I think over time you will become more comfortable and just know some will understand and other’s won’t but you can’t control either, just keep moving.

    • You’re right–I do think that we all feel this in some way–I just equate it with disability, but you’re right–I embarrassed my parents plenty when I was a kid!

  16. You know this about me by now; when Owen was a baby, obviously disabled, floppy, bright hearing aids and hooked up to a feeding tube 23/7… I had a ‘F*** ‘Em’ attitude about anyone’s reaction to him. If anyone dared make an idiotic comment, I’d make sure they walked away feeling like an idiot. It is one of my few talents.

  17. Hi Katy,

    I am a preschool special education teacher and I can tell you lots of my parents have the same worry and while I am not a parent myself, I spend plenty of time hanging out with kiddos with special needs outside of school to give their parents a break, so I get that same feeling when we out and about. On the flip side, I also tend to be one of those uncontrollably zealous people that wants to see kiddos with special needs having fun so I can’t say I haven’t approached and scared a parent or two. I guess I would just say, a lot of people will walk right by, but give the people that approach a chance. Most of us have a good heart, and who knows who you might meet? :) By the way, this is my first visit to your blog and Charlie is ADORABLE!

  18. “Moo saves his dribble and incomprehensible screeches for people I want to impress.”

    This comment from Jacqui really made me laugh! This happens to us too…except for us it gagging on her food or being totally zoned out. Eden gets really spacey in situations where there is a lot going on…like school for example…and doesn’t talk or interact as much as she normally does. I worry a lot that this impacts her teachers’ and other peoples’ perceptions of her. I often wish they could see her at home so they would know what she is capable of and would raise their expectations. I have sometimes found myself encouraging her to “show off”…like reading for people or something…so they won’t sell her short, but I know this is the wrong thing to do because she is who she is and she really shouldn’t have to prove herself to anyone.

    It’s a journey and we all figure things out as we go along. We’ll get there!

  19. I get that same queasy feeling . . . I’m learning to squelch it.