Max's mouth is typically open. It's a position that comes naturally to him; his oral-motor control is still coming along. And so, he drools a lot, something Sabrina's asked about. And gives the most wonderful big, slurpy kisses (here he is on the Disney cruise, planting one on Donald).
I'm used to the drool; other kids, not so much. It's the one thing that sets Max apart from them, aesthetically (I never was able to use those Transderm Scop patches we got for him, I'm just unwilling to put Max on any more medication). When we were at the pool over the weekend, a little boy from down the block, Finn, bounded up to Max and said an enthusiastic "Hello, Max!" Finn was with another neighborhood kid who doesn't know Max. Max was so excited to see Finn he leaned in to kiss him, mouth open wide, and drooled.
"Ewwwwww," said the other kid. "That's gross."
"Sometimes he does that," I said, simply. Then both boys bounded off into the pool.
Afterward, I wondered whether I should have also said, straight up, "You know, it's not nice to say that." This kid is about five, and unaware of the effect of his words—a good time to teach him. But here's the thing: It's going to be hard enough for Max to befriend typical kids; I don't want to further handicap him by being a preachy mom. I wondered if I should have found this kid's mother (I know who she is) and said something. Then I had the thought, as I was lying in bed last night, that I should have drooled a little myself and said, brightly, "It runs in the family!" (I often have moments of clarity like this late at night.) Now I'm sanely thinking I should set up a playdate with Finn and this other child to help them better understand Max and see what a cool kid he is, drool and all.
I'm just making this up as I go along, you know?
I don't know but I always kind of thought saying something like "thats really hard for him, he is working really hard on it" and then pointing out "YOU are really lucky you don't have to work on that" (you little snot). Ok, not that but helping kids understand issues. Maybe they can learn some compassion and realize how fortunate they are.
ReplyDeleteellen, you totally should have drooled...that would have been so classic!!!! save it for next time!
ReplyDeleteI probably would have said the same as you. We normally just get questions, not really comments...or stares and more stares. At the lovely jerks(R word one)house one time there were 3 girls probably ranging 3-10 yrs old that came up to Kennedy, tilted their heads down to look into her face as she was looking down sitting at a picnic table and completely stared forever. I typically would say something like "you can say hi" or "this is Kennedy"...but because no adults said one word and were staring themselves I got ticked and said very meanly "it isnt nice to stare"...so all this lead to was more staring everytime she did any activity that day. So I am still for the most part try to keep things positive instead of negative...as the negative I think just breeds more negativity!
ReplyDeleteThat is a tough one, having a drooler myself, it depends on the day Im having, I have totally called the kid out and said you are not being a very nice person, or I have shrugged it off and went home and cried, I wish that I had the answer, I want my kids to be around typical kids but that seems to be the hardest scenerio's for us to handle.
ReplyDeleteI think I would have said the same thing as you. It is hard sometimes on not always knowing what to say and how to say it.
ReplyDeleteAlso a parent of a drooler. I just tell kids that he has a hard time swallowing and then ask them if there are things that they have a hard time doing. We have a little conversation about what they have a hard time doing "riding a bicycle, swimming, whatever" and then I tell them that Connor has a hard time making his body work the way he wants it to, but with practice he's getting better. This usually does the trick.
ReplyDeleteThe ones that get to me are the ones that are scared of Connor because of his wheelchair, hearing aids and AFOs-- like he's some sort of monster. They'll talk with me and any other kids in the room, but if Connor tries to interact with them they'll run and hide behind their parents. Breaks my heart a little.
~Jess
milo drools ALOT...he is on rubinol to help with the quantity of it, not because we mind the drool, but because he has a very hard time swallowing liquid, and prior to the rubinol he was constantly chocking on it, and coughing and hacking...also he has super sensitive skin so he always had a moisture rash on his face and neck...the rubinol helps quite a bit, but he is still pretty drooly! we are just now getting to the point where milo is old enough and big enough that people can tell that has special needs...people stare alot, especially when he is in his wheelchair....it takes some getting used.
ReplyDeleteHow about saying, "He only drools when he smells something really stinky. Did you fart?"
ReplyDeleteJust kidding.
So far, other kids don't seem to notice Emmett's neurological issues, but the parents sure do. I feel like they think his short attention span is a result of bad parenting. As a result, I don't socialize much anymore.
I found this blog while searching for hatchback shoe sites. Wow, this is amazing that so many moms of special needs children have come together to help and uplift each other. Years ago when I was a new mom I had no way to talk to others that were going through some of the same things that I was. My son (23 yrs old) has CP. I too can feel all the feelings several of you have mentioned. We have overcome several of the same things you have discussed. I want to tell you that they do grow up and it will all be OK. My son, Casey, just graduated from College with a Journalism Degree! I remember when I wondered if he would make it through the first day of kindergarten! Many tears and years have gone by. He is the most wonderful young man, You never know whether you are raising them the right way or not. Only when they are grown will you know. I used to tell him, "You can do anything that you want to do, you just might have to find another way to acheive your goal." He has done just that. I am so proud of him! Cherish the moments and don't blink, your child will be grown before you know it! Love to all! You are in my prayers!
ReplyDeleteIt's hearening to know a lot of you would have said the same thing. Julia, you made me laugh!!! Erin, I really like your approach of engaging kids in a conversation about things that are hard for them. I am going to try that the next time a similar situation crops up. And, yeah, it breaks my heart, too, when kids don't want to hang with Max.
ReplyDeleteSharon, those are beautiful words of encouragement, just plain beautiful.
Ellen, I swear we are living mirrored lives! Faith has the same issue, but we do use the Transderm patches and they do help a good bit. I had a kid ask about it just in the last week while at the pet store. He pointed and asked what is wrong with her? I just looked at him like he was an alien and said "NOTHING" and walked off. He didn't even move. I had a bumpersticker on my old car that said "You are the reason I hate people" I wish I could find another one for my back!
ReplyDeleteI think you handled it well--Conor's mom had some lovely advice on the subject as well. Good think we have blogs--otherwise none of us would know what to do.
ReplyDeleteThere is so much sameness in our world that differences really catch our eyes, like a girl with purple hair, a really gigantic butterfly, a dog with three legs. Children, especially little ones, are seeing so many things for the first time. They are used to asking questions to find out about new stuff. Teaching in my wheelchair when I was in college, the kids asked, "Why can't you walk?" "Could you walk if you tried really hard?" "Are you going to squish me?" and "I wish I could have a wheelchair." They were not trying to be hurtful, they just wanted to know. And you know, I prefered their direct approach to the typical adult one of either fake smiling or pretending I wasn't there.
ReplyDeleteJess-
ReplyDeleteAs a teen with hearing aids I found and still find people who are afraid of them.I think it is because kids dont know what they are. I ussaly combat it with,"They are hearing aids" followed by when i was younger, "They help me hear" or now,"I have a hearing loss and they help me hear."Also I get the stares about my FM system, I say"It is a FM system.The teacher wears this part and this part goes on my hearing aids.It helps me to be able to concentrate on the teachers voice because hearings amphliy alll sounds."