Disability v. Personality

We went to an Easter Eggs Hunt today and I left in tears. My husband’s boss’s wife throws a big Easter event every year and there were inflatables, a trampoline, food, drinks, and a visit by the Easter Bunny.

Charlie doesn’t like the sounds of other children screaming so he shut his eyes the moment we got there and pretty much didn’t open them for anything. Most of the children were a bit older and were running around and screaming gleefully.

The icing on the cake came when we brought Charlie over to sit on the Easter Bunny’s lap and he began trying to squirm free, but also still wouldn’t open his eyes. Add that to his generally floppy posture and one of the mothers exclaimed “is he asleep?” At that point we were done and I took Charlie to the car while my hubby bid his boss adieu.

Charlie’s anti-social thing is hard on me. I’m not wild about mommy-events. I’m not really able to converse about designer jeans, playgroups, the best private schools. I’m more of a AFOs, therapy, best emergency room kind of gal. I’m not stand-offish, but I find mommies to be one of the cliquiest demographics. Kids parties are dull and don’t have enough alcohol or cursing, so there’s really only so much enjoyment I’m going to get out of these things. I’m going because I think Charlie is going to get something out of them and he doesn’t. He hates them. He hates sun, tons of strangers, and kids screaming.
Later we hit a concert in the park and Charlie rolled and played on the blanket, smiled, and generally had a good time.

Sometimes I forget that every piece of Charlie isn’t about his disability. His father has always hated big parties. As a kid he would go inside and watch TV. He’s fallen asleep at more keg parties then anyone I know. He doesn’t like strangers, and he really doesn’t like big crowds of them. His brother is the same way. They never went to a school dance or to the prom. They are social, but they aren’t into the massive gathering thing.

So is some of Charlie’s hatred of big parties part of his disability? I’m sure some of it is. . . his vision isn’t great and the sunshine probably doesn’t help. He uses his hearing a lot I’m sure screaming children don’t sound like a symphony. But I’m equally sure that a big chunk of it is inherent in who he is. If he’d been born completely neuro-typical I might still be forcing him to interact at these kinds of events. He’s just not a party person.
So, I’d say lesson learned, but I suspect I’ll have to get beaten over the head with it a few more times before it sinks in. But for today I’ll remind myself that Charlie doesn’t like big, outdoor parties and I shouldn’t be upset or disappointed if he reacts by shutting down. That is who he is.
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  1. therextras says:

    Yea! No more tears over him being who he is…a chip of the ol’ block!

    I saw more than a few posts last December about children not enjoying a photo-op with big man in red.

    Loved the last two photos! Thanks!

  2. blairspage says:

    Love the photos! And, if that’s his personality then let him be who he is! Don’t worry about what those other Mother’s say. We get the stares too… I just wish sometimes people would “ask” what’s going on and why my almost 1 year old looks prego… but they don’t. They just stare! Good for you for taking him anyway!

    Hugs – Tiff

  3. i think about this a lot. Drake is such a sweet, loving, mellow soul. I wonder if he had the physical ability to get into more “trouble” would he be more of a trouble-maker?

  4. Sorry you had a rough day…

    Charlie is getting so handsome! Love the last photo!

  5. don’t feel bad at all! charlie acted just like my 33 year-old hubby acts at parties! parties just aren’t charlie’s thing — but it looks like he enjoys relaxing in the sun listening to some tunes! you’ve got yourself an artist :)

  6. Oh yes. We’ve been there and done that too. We went to a children’s bday party once…I went alone with Jack, he was about 20 months old at the time and I dressed him up as cute as could be, plopped him in his stroller and entered the party. First comment “well isn’t he a lazy guy” from some older man who did not know of Jack’s disabilities. “Wow, you STILL feed him?” and BTW, I still feed Morgan “spoonables” while out in public too and she’s an NT 2 year old. From there it only got worse.

    Jack, like Charlie isn’t into big events with lots of people. He shuts down and tunes out…and more recently starts to “melt down” until we’re doing something he’d rather do — just like a walk in the park or a blanket on the grass…so yes, some of it is Jack’s personality, some of it is his disability, and I’ll be honest, a lot of it is my inability to sit and listen to a large group of neuro typical mothers…I cannot stand it!! In fact, the other day Morgan and I high tailed it out of the library because of the conversations that were starting between moms in the kids section. GRRR!!! Anyway, wow — I am sorry to ramble!!!!

    It’s a GOOD thing to pay attention to Charlie’s cues and as for the rest of the world and their loud, un-fun parties, well…who cares!!

    (((hugs))) from someone who so truly gets it. Now if only a few of us were neighbors, ya know?


  7. Charlie knows the types of people he wants to hang around. A is also the type of kid who hates loud noises and crowds and shuts down but if you put him in a quiet situation he lights up like the brightest like on a Christmas tree!

  8. Anonymous says:

    I have a ‘normal’ child too who’s 9 now…for her first birthday party she started crying the moment we started to sing happy birthday…At our first gymboree play group..same thing..as soon as the group started singing she started wailing…that’s just the way some kids are…born normal or not.

  9. jennifer_jj says:

    You need a Ya-Ya mommy group play date. Do you have one near you?.

  10. Must say that I’m very much like Charlie too! But I felt your hurt. I’ve always somehow felt at odds with most other mothers I don’t know well. One of those things…

    He really enjoyed the park, didn’t he? Lovely photos.

  11. It’s not just you–I hate mommies. I hate kids’ parties and PTA meetings and designer jeans and gym memberships and I could go on and on. Mia had panic attacks everytime we went out in public and someone just looked at her twice back when she was 2. I’m sure sometimes it’s even harder on you. Hang in there. Skip the parties for now and just go to those concerts–Charlie really likes his music, doesn’t he?

  12. Nadine Hightower says:

    I have never wanted to give you a more than right now.
    Let’s go in a different direction. Charlie doesn’t care for that sorta thing. And maybe later as he ages he will come to accept those sorta things, in the mean time, rolling happily in the sunshine with those that love him is better than sittin’ on some stranger in a bunny suit.

    I know you need to do things that you like to do with adults, solely so that you don’t lose who you are, find those friends that understand that need and hang with them to unwind. There are other moms in the same boat as you. I’ve read some of the comments of those women here…you have support.

    Hang in there.
    Big Hugs!!

  13. Nadine Hightower says:

    Give you a hug….shit! give you a hug! I’d love to blame booze but no I’m sober and just blonde!

  14. desperate housewife says:

    I’m sorry you had a rough day at the party. Lots of other people have said the same thing, but I just wanted to chime in: TONS of kids hate parties, adults dressed up in weird costumes, loud noises, etc. My daughter carries on embarassingly at most social events, truth be told. And I myself hate massive crowded events, even things like concerts and parties which seem like they should be fun. More than about twenty people and I start feeling claustrophobic.
    So: moms who make mean comments and stare are rude. But know that it’s not just you. I’ve gotten lots of the stares myself! Stares saying, “Why can’t you control that kid?!” or “Why isn’t she happy; this is a childrens’ event!”

  15. Definitely something to think about–I attribute some of Clayton’s OCD mannerisms to his CP a lot, but in reality he gets it from my side of the family! We obsess over everything and we LOVE routine. He’s definitely just like his momma in that respect!

  16. I understand how you feel. I have just now started hearing, “Oh look he is so sleepy”. Sometimes it seems better just to avoid activities or explain to people up front he has issues. I try to get Jude out though especially to his sisters softball games.
    I just recently finally had a mom ask me what happened to him. I explained he had a stroke, and it caused brain issues. She looked at me in disgust asking “what causes” that. Like I did something. After my conversation with her she had a new perspective on things.

  17. Well you can tell from the photos what type of atmosphere he likes! He's my kinda guy! I'm more of the quiet type of get togethers too! Me, Lonnie and Daniel would rather have just a couple friends over than a whole crowd of people. That might be odd coming from me who is the youngest of 12 and gosh I lost count on how many neices, nephews and grandkids. KISS Keep It Simple & Small!!!

  18. OK, I think I could have written this exact post myself.
    For one, it has always, always, always upset me when Max does not want to participate in fun events. Last year, we took him and Sabrina to the Ringling Bros. circus. Thankfully we took a babysitter with us, because I had a feeling Max wouldn’t tolerate it. Sure enough, he wouldn’t even come inside the arena. I was really bummed.

    I have realized, over the years, that this is me projecting my wants onto Max. If he is more content staying at home and playing, then so be it, it is wrong to expect him to enjoy the same stuff lots of other kids do.

    I have also learned, as you have, that not all of Max’s issues are necessarily related to his cerebral palsy. When he got a milk allergy, I remember blaming the cp!!!

    It sounds like you’re on that rollercoaster of acceptance and frustration a lot of us have been on. You know, cognitively, that you shouldn’t get upset. It’s just hard to make your heart listen.

    Charlie looks so yummy in those photos. He is coming along beautifully!

  19. blairspage says:

    Hey girl… I know they pissed me off last night about sending us home like that. When we got her EKG done we just went to the hospital (locally) and they did it. They had to send the results to AR Children’s to be read by a pediatric neurologist and that’s what we are waiting on. I just got done leaving a message for her Pediatrician because I want to know what the delay is on getting her EEG done. So, here I wait again for them to call me back.

    As long as we can keep her from running then she’s good. For some reason it only happens when she runs. Which is scary all in itself!

    Big Hugs – Tiff

  20. I’m with Charlie–I hate big crowds and screaming kids. Sometimes I want to close my eyes and not open them ’til it’s over. At least he can do it without annoying people nudging him and trying to force him to aprticipate. Give me my own sandbox any day! 😉

  21. That would be hard. I have a friend whose two-and-a-half year old daughter has severe social anxiety. Way beyond shyness. It’s hard on everyone, especially the child. Glad the day was salvaged with some family time! Love that photo of Charlie in the shade, with OVERALLS. SO CUTE.

  22. Like I mentioned, I'm in the process of catching up so I just read this post… and this made me LOL and agree:
    "Kids parties are dull and don't have enough alcohol or cursing, so there's really only so much enjoyment I'm going to get out of these things."

    W isn't big into these things either but he is very, very gradually getting more social. I don't care much about going to kid parties but I do enjoy the zoo, aquarium, IKEA… you get the idea.

    Thanks for the much needed laugh today!