A conversation on the beach with two kids who were observing Max.
Kid #1: "Why doesn't he talk?"
Me: "He's not talking yet."
Kid #2: "Why don't you teach him?"
Me: "We do. He's just not fully talking yet.
Kid #1: "Even when he's a grownup, he won't talk?"
Me: "I hope he will talk."
Adult questions about Max, I can handle. But conversations with kids—especially ones who are about Max's age, as these two were—get to me. Inevitably, I start wondering what Max would have been like if he could talk, and that's not a good place to go.
Sometimes, when I'm with Max and we're around other kids who don't know him, I watch them watching him. They tend to blatantly stare, as kids do, and look perplexed. Once in a while a kid will ask "Is he a baby?" Max doesn't yet understand what they're saying about him, which is a mixed blessing.
Are kids sometimes harder to handle than adults for you, too?
Just remember Ellen, Max is HAPPY. Very happy. That is more than a lot of kids can 'say'. The smile on his face says it all!
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ReplyDeleteYes ... alot wonder why he has trouble with two handed activities. In his class its like clock work .. all the kids know what he needs help with and what he can handle ... they don't step in until needed. Most adults don't notice till I mention something etc.
ReplyDeleteThis year I have had a lot of issues with the other kids staring. I swear when we are in the hall and the other kids are with their teachers so many stare...and the teachers say nothing...Hello teachers, teach!
ReplyDeleteOne thing I say to kids about Kennedy not talking is "she cant really talk, but she loves when others talk to her".
I guess I kind of appreciate the kids' view of things. Adults are the ones that sometimes get to me because they already think they know what's going (she broke her arm/leg) on or assume certain things (physical disability = cognitive impairment). Although not so tactful, kids get right to the point and keep asking until they have a grasp on what's going on. I'm way better at simplifying an answer for a kid who asks what's with my daghter than a lengthy explanation for an adult. I guess the kids I've come across are quick to judge, but also quick to change their minds as well. All I know is I love my kiddo and she to me she is perfect. I know that we can agree on! (you have such wondeful discussions here - thank you!!!)
ReplyDeleteOh sweetie, don't let them get to you. I know easier said than done. Max is doing great and he is well loved and happy.
ReplyDeleteHeartening comments, as usual. I know, consciously, that Max is doing very, very well for himself. Exceptionally well! And, yes, he is also so happy. I just can't control my heart sometimes when it comes to the what-ifs (as in, what if he had never had a stroke). I've gotten so much better about not thinking that way over the years, but sometimes the what-ifs still sneak in there. Colleen, I also encourage other kids to talk with him. And Mel, you are so right, kids are quick to change their minds about Max (though not always, those two kids kept their distance). Max usually ends up charming them, older girls especially. Max is a ladies' man!
ReplyDeleteI tried to post a comment but it disappeared. The short version is that I like the chance to educate kids so maybe they will play with him and not just ignore him.
ReplyDeleteI guess it depends on the kid and how they approach it, too.
I have more trouble with the adults, mostly because I feel like they should just know better. I've run into my fair share of rude morons in adults. I'm so used to kids since I'm a teacher, so I just look at them as a chance to give them positive information. It's really funny to watch Noah hear other kids asking questions. At 3 he already gets annoyed, and says, "That's just Addison. Let's play!"
ReplyDeleteI did have a random burst of tears yesterday when I thought that I would like her to be able to talk, just for one day. She's only 2, but it's unusual with her trisomy to have much verbal communication, and I know that's going to get harder and harder as she gets older. :/
Where it begins...helping the young ones to grasp acceptance of the differences among us. I think you handled this well albeit the conversation made you uncomfortable.
ReplyDelete"Is he a baby?" is just evidence of the child's lack of vocabulary for what he sees.
You seem to have a good perspective on all this, and here is a great way to share your feelings and receive support from other mothers. Thanks for sharing. Barbara
Sigh. It actually makes my chest physically ache thinking about it. For me, it's always been kids. They're honest and they don't know... of course they don't, they're kids. And that's why it hurts. I know my son "kinda" gets what they're saying and it hurts me that it may hurt him. It hurts me to watch them treat him differently when all he wants to do is be happy and play.
ReplyDeleteI can take the time to carefully word myself to children to hopefully help forge positive relationships and learning, but adults, I have no patience for. Maybe it shows through. I don't feel the need to monitor my tongue or my tone with adults...no problems yet. (wink, wink).
Ellen, you probably remember a post I wrote a while back:
ReplyDeletehttp://n0thingbuteverything.wordpress.com/2008/11/02/conversations-with-a-7-year-old/
And yep, it can be darn frustrating. I also hate it when kids assume BC is a baby because he is in a pusher or can't speak much. But what really riles me is when parents don't correct them.
I get that children are often a little confused if they come across someone who is different from them but I also know it can hurt.
In a situation like yours, if a child asked 'Is he a baby?', I would throw the question directly to BC and ask him, 'So, what do you reckon, are you a baby?'. To which (I know) he will reply using a couple of signs and his (improving but still hard to understand) attempts at speech, 'I'm a big boy. I'm four'.
I'd then repeat what he said and tell the child, 'See?' he's not a baby. He just communicates a little differently is all because his muscles don't work as well as yours yet.'
I like to get BC in on the act, because I want to empower him to handle these sorts of questions well in the future and also because I really don't want him to get upset and shocked when he realises WHY we often get asked this question. Throwing the questions to him directly seems to work well so far!
I also think that holidays away are often the places where you get the most questions....lots of new faces and a totally different environment....but yet, it's the time when we are least in the mood to have to explain much at all - we just want to have fun!!!
I hope you really are enjoying the trip and I hope now these questions are done, those kids will shrug and hopefully even get to know Max a little more and see what a cool kid he really is xo
Mmmmm I walked in to a room the other day with adults, and Jude was having a seizure. I had to sit down and calmly remove him from his infant carrier. I saw his eyes fluttering, and his body writhing from the seizures. Since he is my main concern it took me a second to realize the room had grown deathly quiet and everyone was staring.......at us. It was our first realization that people are going to stare.
ReplyDeleteI can't remember whether I have introduced myself here but I'm Becky mom of Ricky, who is now 13. He has cystic fibrosis, PDD-NOS (which with him means he is really socially inappropriate and doesn't catch on to social cues), learning difficulties, and bipolar disorder.
ReplyDeleteWe've had this sort of situation with Ricky ever since he was little because he has always been, well... different. He talks to people he barely knows about inappropriately personal stuff, that kind of thing. One time when we were at Open House at the boys' school, I overheard a kid talking about Andrew (little brother), saying "Oh he's got this brother who's weird, I think he's retarded or something," and that pretty much sums up what a lot of kids seem to think about Ricky.
Of course if they bothered to get to know Ricky, they'd find out that he's a sweet kid, a great and loyal friend, full of interests and ideas and information.
So the way I approach it is by gently educating, if it looks like the person is open to it. A lot of times they have a mom with them who encourages this. I like to think that most moms, like me, have a soft spot for ALL kids and want their kids to be KIND.
I tell them a little about cystic fibrosis and about Ricky having some school difficulties and being in special ed and Ricky usually pitches in some of his information or talks about something he's interested in and I usually see a bit of light in the other kid's eyes as they start to appreciate my kid for who he is.
I know that was long-winded but I hope I offered some insight. ;)
Rebekah, I just found your comment. Thank you so much, that really was insightful.
ReplyDeleteHI! I just found your blog, and I LOVE IT! Read Max's story, and "super powers", and have you book marked, since you've written quite a bit since 2008. lol.
ReplyDeleteAnyhow, I'm Danielle, biological mother of 4, raising my youngest 2. Noah, 3, has CP, and Ayanna, 8 months old, currently has pneumonia. UGH.
Anyhow, as for your question: I have more trouble with adults wanting to treat Noah differently or do things for him.
I am active in my church, and this keeps Noah in the church's toddler program. His friends will ask me why he doesn't talk, if he will ever walk, etc. I answer them as honestly as I can, using simple explanations, and that usually seems to do the trick. I try to remind them that everyone is different, and that's what makes this world such a wonderful place. I also remind them to pray for Noah and their other friends. Kids are also quick to help Noah do a task, but then they tend to either get distracted or fascinated, and they let him try it on his own. AWESOME!
As for adults, well, that's where my problem is. Adults see Noah's AFO's, and want to make him sit in a chair instead of army-crawl around the room. Adults want to take Noah's hand with the crayon and 'help' him color. Adults want to dismiss that he is able to do anything independently and just do it for him to speed up the process. This is where I've learned that kids actually have more patients than children, because Noah's friends don't mind waiting on him to finish.
Sorry so long, just had an experience with this last night that really struck me.
I'm not the parent of a special needs child; I'm disabled myself. So my perspective is probably different. But I personally welcome children's questions. I'm a singer and have done music/disability awareness programs at schools, and whenever I would allow kids to ask questions, 50 hands would shoot up in the air...no exaggeration! The reason I feel so strongly about this subject is because of an experience I had that had a profound impact on me. A child noticed that I was blind, and when he began to ask me about my blindness, his mother immediately silenced him. I understande this mother's position; no parent wants their children to offend someone. But this kind of response by parents to their children's questions about disabilities actually does more harm than good. It instills into the children's minds that the subject of disabilities is one not to be discussed, and it reinforces the belief that people with disabilities are not normal people. This only increases the stigma surrounding people with disabilities, and children may end up shunning people with disabilities as a result, because they've been taught not to approach them. Children's questions may not always be tactful, and they may be hard to answer, but their impressionable natures often cause them to be more willing to consider a new way of thinking. It can be much harder to get adults to let go of their preconceived ideas and to evaluate their belief systems, unless they go through an experience that totally changes their perspectives. Children are our future, and if they can learn from the beginning that people with disabilities are approachable, they may ultimately end up seeing people with disabilities as normal people with thoughts, feelings, and interests the same as theirs, and as these children transition into adulthood, they may end up treatting people with disabilities much better than the previous generation. BTw, great blog!
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