A couple of months ago, I bought a few yards of purple fabric and purple terrycloth so I could get some bibs made for Max. The drooling situation has not improved. It's because he has a lot of tension in his jaw; the drool pools and flows. (That sounds like it's straight out of a Dr. Seuss book.) One of Max's speech therapists recently showed me how to apply pressure to his mouth, pulling downward above his lips and upward below his bottom lip, so he'll become more aware of the fact that he needs to relax those muscles.
I am perfectly fine with being Max's official drool wiper but at eight, it's high time he took care of it himself. "Max, buddy, wipe your drool!" I'll say, and he'll flash me a grin and use his sleeve or, if he's wearing one, a terrycloth wristband. He doesn't really care that he does it, doesn't yet have the awareness that this is something that sets him apart from the other kids and makes them stare, and I'm glad for that. But the wet shirts are a pain. "He lacked something cool to mop up the drool!" says Dr. Seuss.
So I got this purple fabric and headed over with Max to visit a seamstress in our neighborhood who once made me a few seat cushions. I wanted him to be part of the process and request his own bandanas.
"I'm ur-ul AX!" is how Max introduced himself to her when she opened the door. When we went inside, sat down on her couch and I pulled out the fabric to show her, she wasn't at all surprised by the purple-osity.
"And what color bibs would you like? Tell Jaye!" I said to Max.
"Ur-ul!" Max said.
"And how many?" I asked.
"EN!" said Max. ("TEN!")
Within a few weeks she'd made us a trial bandana, which sagged within a couple of hours from wetness. I brought it back to her. "This is why I don't make clothing!" she said, but she was game to tighten up the neckline and sew a bunch more.
She emailed last week to say they were ready, eight of them, as much as the fabric would allow. "Don't worry about the bill—no charge. Hope Max likes them!" she wrote.
Oh. Wow. I knew they weren't that big of a deal to make, but still, they took time and labor.
"PLEASE, let me know what I can pay you!!! Seriously, these took work," I emailed back. No response.
While we were out on Sunday, I got an email from her: "My husband just left them for you and Max. Enjoy them!" And when we got home, sure enough, there was a bag o' bandanas on our front porch.
Max was ecstatic. Me, I was touched. And grateful. And also, if I'm being honest, a little uneasy. Because it reminded me that I have a child who people feel bad for. And I don't want people to feel bad for him, because it's isolating. Pity only sets my son apart from other kids and other people. I want him to be treated like any 8-year-old, as much as possible. I also don't want people feeling bad for me, either.
If I would have brought Sabrina over because she wanted, say, scarves made (or, more likely, shirts that looked like boy shirts with no style whatsoever, as that has been her preferred mode of dressing for the past year), I am sure I would have been charged. This woman sews for a living, not for charity. I wonder, too, if she really knew Max—a kid who plays with toy cars, rides a bike, watches YouTube videos and acts obnoxiously to his sister like any other kid his age—would she have made the bandanas for free? What she saw, though, was a kid who has issues with speech and who needs bandanas because of an issue with drool.
That's what nagged at me...even though I appreciated the kindness and her handiwork.
Today, I gave her a big shout out on a local mom e-loop I'm part of, and I'm going to figure out other business I can give her in the upcoming months of the non-purple kind.
Have you ever felt the same about kind gestures like these?
When my daughter was in the hospital for months with a heart problem (and for a bit afterwards as well), we received many gifts from people - some of whom we barely knew (acquaintances from work, friends of friends, etc.) and I did feel a little awkward at times. But, mostly, I think its a gesture for themselves as much as it is for us (but for the grace of God, there goes I kind of thing I guess). And I don't think its necessarily pity - I like to think of it as compassion and love...and a bit of respect. After all, you are not doing the job of "just a mom" but you have some extraordinary mom duties to attend to because of Max's needs - and I think people recognize that extraordinariness and want to reward you for the job you are doing in some small way. At least that is how I think of it...
ReplyDeleteI agree -- I don't think it's feeling bad for someone, so much as "here's something I can do to make a difference". I don't know if that makes you feel better about it or not, but I think it gives people joy to feel like they're doing a good thing.
ReplyDeleteAt times, I definitely can be oversensitive about this sort of thing. I like your perspective, 2ndheartmom, although I don't want people to think of me as some sort of extraordinary person for being Max's mom. I do the best that I can, as I do with Sabrina. I don't feel I deserve any particular perks for being a mom. Although if someone named Dave would like to reward me with a day at a spa, I would not turn it down.
ReplyDeleteJust a normalizing (I hope) thought Ellen: My oldest daughter has extraordinary eyes, even more so when she was younger. We could not go anywhere without the gas station guy giving her a sucker, the waitress bring her a free desert, shop owners giving her trinkets and on and on. It made me batty, I did not want her growing up thinking that random people would buy and give her things just because she was pretty. That just wouldn’t be good at all. The older she got, the less it happened. I finely came to look at it like 2ndhartmom, sometimes people like to do something nice for others, it makes them feel good. Whether they are inspired by big blue eyes with insane black eyelashes or a good manners and a knock out smile, someone once told me refusing a kindness was denying the giver their joy in giving.
ReplyDeletehi ellen
ReplyDeletei hope u do not take this the wrong way but maybe the lady was being nice to you because of your dad and not max.
i totally understand where u are comeing from though if she did not know about your dad,
ps there is a surgury that could help with the droll
pps if u are mad at me let me know
az
As a crafter I am occasionally solicited to make things. If it's a larger, time consuming project I feel fine about being paid. Though admittedly I feel rather uncomfortable when people hand me cash, even when it's for a job well done, and find I generally prefer consignment in a local shop where I never have to be involved in the dreaded money part. If it's a small and quick project from someone I am even remotely fond of I am inclined to gift them the labor and supplies when I am able.
ReplyDeleteAnd the only pity I feel is that the gift-ee doesn't have the time or skill to make the items they desire. This thought usually comes up after a mom says something like, "Oh if only I had time to learn to crochet.. *heavy sigh*"
I sincerely hope that all gifts you receive are from kindness and not pity, but I can't speak for every crafter.
Love your blog, by the way.
Maybe she did it because of those big brown eyes! He really is adorable, you know. I can see why you'd feel uncomfortable, but I say just smile and accept--and try to boost her business, just like you're doing. My non-special needs kids inspire kindness that makes me feel awkward sometimes, too. I suspect it's because they look like their mother doesn't wash their faces very often (because she doesn't), and people feel sorry for them. ;0)
ReplyDeleteThank you so much for your blog! My daughter recently spent a long time in ICU with pneumonia and almost didn't make it. People were doing things for me and thats not how I live. Usually I am the little red hen shouting I will do it myself! As my daughter improved a friend made her hospital gowns that had cupcakes (shes obsessed with pinkalicious and her cupcakes) all over them for her and her baby doll so when they got to stroll through the hospital they got to do it in style! She wouldn't let me pay her and I am grateful for what she did but hate knowing that people look at my child and feel bad for her.
ReplyDeleteYes, I feel that way frequently...particularly when things are given to him at school, for example stuffed animals donated by companies...I don't feel that he is "needy" just handicapped...if things weren't provided for my other kids, why would they be provided for my handicapped child? I can pay for him just as the others...save it for a truly underprivileged child...
ReplyDeleteIt doesn't bother me anymore (which tells you it used to, once upon a time). Who am I to thwart the desire of another to fulfill a mitzvah? It makes them feel good, you see--that's why they do it. The harder task is being on the receiving end...particularly if you're the type who is used to doing everything yourself, a grade-A "fixer" and problem solver, and unused to asking for/getting help from others.
ReplyDeleteWear that sense of obligation you feel like a crown--isn't it nice to know that not all people are a-holes? Believe me, there are more than plenty of THOSE in the world--how great that you have a friend who cares enogh to do you a "small kindness" that is truly useful.
My pop always says "Pay no attention to what people SAY. Look at what they DO." That bandanna-maker is a friend to you and Max. That's a good thing.
This is slightly off-topic, but here's a suggestion about the bandannas themselves (apart from their freebie status): Instead of cotton, which absorbs moisture and then stays soggy and heavy, how about making bibs from the new synthetic moisture-wicking fabrics that are commonly used for athletic clothing? They attract moisture and then dry almost immediately, and are also soft and lightweight. And, one of the popular brands is actually called CoolMax! The fashion/sports company Sahalie makes colorful loops of cloth (Buffs, they call them) intended for headbands, neckerchiefs, whatever--take a look at www.sahalie.com/jump.jsp?itemType=PRODUCT&itemID=11441
ReplyDelete(I have no connection with Sahalie or any of these products--just sharing my experience as an avid biker/hiker who's given up cotton.)
I've been feeling the same way the past week as meals have been pouring in since Collins surgery and then the complications that followed. But I also understand those peoples desire to help, because that's how I am when I'm on the outside of a situation. And I just look at it as an opportunity to later pay it forward!! However, the hardest thing I've now had to deal with is the fact that strangers are bringing me meals and helping out, yet a couple of my "closest" friends haven't even called to see how he's doing. Some people are difficult to figure out, and some people have been given the gift of caring for others. Appreciate those people, there are too few of them!! I'd love to give your neighbor some business, those are cool bandanas!!!!
ReplyDeleteI've learned to just be gracious and thank people and then pay it forward; someone does something kind for us and I do something kind for others. Kindness makes the world go 'round Ellen :) Been thinking of you a lot lately-praying that good memories of your dad will help you through the dark days that are sure to come ♥
ReplyDeleteI have a neighbor who loves to run over little snacks whenever she sees me out with the kids. It has made me sort of uncomfortable. I guess was I thinking she feels just sorry for me because I am a single mom and she knows I have a kid with special needs.
ReplyDeleteBut in a world where so many people see my son and just give me looks because they don't know why he is acting like that, it's nice to see some actual human kindness.
"So shines a good deed in a weary world."
Hi all
ReplyDeleteI don't know if this is any help but that is my intent! I was a drooler I loved those terrycloth wrist bands! I grew out of drooling - yes I actually have grown out of it on days like today it still happens because my jaw is super stupid tight today but its usually just one wipe of it and I am good for the rest of the day and first thing in the morning is the worst
I don't necessarily think it's pity. I agree with other commenters -- sometimes people are just awesome. It makes them feel good, too -- it isn't entirely about you, or Max.
ReplyDeleteWhen I was pregnant with my oldest, I wanted to use the vintage bassinette that had been mine and before that my dad's when he was a baby. No modern bumper or pad fit it, and it was wicker and I worried about it scratching an errant flung little hand. I bought a regular sized crib bumper to my corner dry-cleaner/tailor and he cut it to fit, hemmed it and added ties, and then wouldn't take any money. "It's a baby gift!" he kept saying. So this isn't a special needs story, just one of human kindness and generosity.
Also, she's pretty much cemented who you'll go to next time you or anyone in your family needs seat cushions! Smart businesspeople know that being a mensch can be good for the bottom line.
Which doesn't lessen the loveliness, of course.
I had a problem with this for a while. I couldnt accept the smallest kindness, even from family. I have come to the place where I know it is not pity but compassion that moves thier hand, hearts, and sometimes pocketbooks. I accept now with a grateful heart and try to do the same for others when I can. As for feeling sorry for max... does max know they were free? no. would it matter to him? Would it still feel like pity if she had charged you for the bandanas but given you a gift certificate for a massage for yourself? I think she was showing you a kindess as much or more than she was Max. I see you as a great mom doing all you can do for your family. I see her as someone helping you. Anyway you look at it, the kindness of others is a great problem to have.
ReplyDeleteSomebody offered me ice cream yesterday and I knew that they were just doing it because I have cp and a wheelchair. And I do make my own money to buy stuff, yes I appreciate gifts and I love them. But when you just do it for that sake it's kind of a pain.
ReplyDelete(This is the blog I wanted you to add me on Ellen, I'm sorry it didn't work, I don't know why but see if you can check out: www.accessibilityinCanada.blogspot.com and let me know what you think at tooner01@hotmail.ca...)
Thank you!
First - I am not the mother of a child - so my perspective may or may not be one to consider.
ReplyDeleteAs someone who has worked with individuals with different developmental disabilities and as someone who encourages random, or not-so-random, acts of kindness in the community this is my thought:
If the act of kindness does not take away from Max, then accept it.
If the act someone takes away from Max, then kindly explain why it isn't a good idea. Example - strangers used to buy us food when I was out with an individual with visible developmental disabilities. If the individual was working on managing money, or knowing that food required payment, or any other such life skill, then we would decline the offer by simply saying this is an important lesson to learn and by paying for us it is actually a hinderance to gaining these skills that are required for an increase in independence.
However, if I was with an individual that was not working on these skills we would say thank you, flash big smiles, and tell them how nice they were.
While it may be true that if the seamstress had seen Max play toys and do all the other things without seeing the drool and speech issues, that she may not have offered, it is the idea that Max gave her a gift - the gift of getting in touch with her heart and her ability to give love back to her community. Sometimes people need to see someone with a visible difference to remind them that we are all different and that we all need love. Is this Max's job? No. But I see it as a perk to the community more than a perk for you and Max.
oh and PS. I don't work with individuals with developmental disabilities because I pity them.
ReplyDeleteMy job is one of the most fun jobs in the world! While it has its difficulties and bad days, there are other days I can't believe I'm getting paid for all the fun we are having together.
Thank you so much; your words and stories have given me much-needed perspective...and reality checks. I actually hadn't considered how I feel when I do kind things for people. Not because I feel sorry for them, but because it's just a nice thing to do and because, yeah, it makes me feel good.
ReplyDeletePhoenix, Stephanie, Marjorie, Cindy, Rosie, Chrissi: Absolutely awesome advice.
AZ: I think you rock! The woman did not know about my dad, she doesn't read this blog.
Laura: It is heartening to know the drooling decreased for you. Maybe it will someday for Max. I know there is surgery, I just don't want to go that route.
And Anon #2, I wish I would have thought about that moisture-wicking fabric. Our next round of bibs will be made of CoolMax (and worn by Cool Max)! Meanwhile, I think I will try one of those Sahalie bandanas. THANK YOU.
Hi, perhaps she just wanted to be able to do something. It is so hard sometimes when we can't do anything to help that when an opportunity arises we take it.
ReplyDeleteI hope that was the case. It can also be as hard to receive as it is to give sometimes. Perhaps you can pay it forward in some way.
Lynn
I agree with 2ndheartmom, Ellen, my first thought while reading this was that the seamstress was doing it more or less for you, as a mom.
ReplyDeleteThen secondly, a mom who has it quite a bit more challenging life than the average parent. Then, thirdly, she must adore Max, who can blame her?
I can totally see where this woman is coming from, I'm the same way, if it were me I would have done the same, not charged a penny.
That said, I've had people do things and give us stuff that was above and beyond the call of "friendship" or just being kind.
Not long after the boys were born I had someone, a sort of friend of a close friend, give us a large amount of money. I was really uncomfortable and very upset I didn't know how to handle it. The friend who was the liaison between us and this philanthropist was to make sure I accepted it and explain in a way that made me feel ...well, a little bit ok with it. It was a whole big thing.
I just used the money on some big items I needed for the boys. I wrote a big, long thank you letter and told him what I bought and how the boys are enjoying it. But now there are times when I'm at events and this person is there, I find myself avoiding that event because I still feel embarrassed many years later.
btw, great idea having someone make the bibs. So hard to find a large size that isn't offensive to my eyes.
xo
Kerry
Yes. I am getting a free massage on Monday from one of Olivia's friends' mom and it's totally b/c she feels sorry for me. But I don't care...I do need it so I'm going with a big smile on my face and giving her a gift card or something in return!!
ReplyDeletehi,
ReplyDeletei am a pediatric PT - no child of my own with special needs, but hundreds ( no lie!) of friends. i agree that pity is a terrible thing. i refer to it as a 'four-letter word'.
what if, that was not what she was feeling? what if, she felt the first one she made was a failure and was not confident that the others would work either? or, what if she saw a really sweet, cute little boy and wanted to use her talents to do something nice for him?
with your sweet comments about her, you are 'paying it forward'. i think that is the right thing to do. just a thought!
Hi! My son Tyler drools a lot too but we are unsure of the reason. He has been checked for many things but they just think it's due to low muscle control. He has dev delays and was just diagnosed with ADHD. So many teachers have given us stuff like gloves, boots, toys, and other stuff. It does make me feel awkward at times but I make sure to let them know I really appreciate their kindness. People used to give me things when I was young and still do. Maybe I look needy but don't really know. I like to do things for people because it makes me feel good inside. I was just raised that way. If they lady that helped you is doing it out of the kindness of her heart , I see nothing wrong with it.
ReplyDeleteMy son uses bandanas at school so if you find any good ideas or websites to help please post them.
Thanks ,
April
It's twist on what's already been said, but without any receivers there can't be any givers... both sides have to participate!
ReplyDeleteMaybe think of it this way... we are all being given opportunities to practice gracious acceptance (without adding any guilt or shame) as a way to fulfill our end of the give and take symbiosis:)
I agree with phoenix- when we became moms we agreed to be pack-mules,entertainers,nurses, shrinks, snot-rag holders, and finder of lost things- and as a mom- I could not put one more thing!! on my to do list-so if this nice person related to you as a mom who could not put one more thing on the to do list-it was a sisterhood of mothers thing-pay it forward when you can.
ReplyDeletei did NOT go the surgery route!!!!!!!!!!!!!!!!!!!!!!!
ReplyDeleteI so need to stay up to date on reading this. as for the 'acts of charity' I am not a parent but I am graderating in a month from the Developmental Services Worjker Program so i will be working with individuals with disabilities and am already. I can understand the frusteration in accepting it but your idea to find more work for her is a good one because you can pay her by accepting service from her.
ReplyDeleteI wanted to comment on the bibs as well. I did voulonteer work in a class room for the multiple sever disabilites and they made their own bibs out of a bandana, a washcloth and they either tied the ends or put snaps on the ends what the did is they seewed the washcloth in the middle of the bandana, folded the bandana into a triangle and put the combo around the child's neck. i am thinking you did similar but just wanted to let you know that for them this technique really worked
Terry wristbands are a great idea! My daughter is 2.5 and drools a lot. It's not something that she'll outgrow soon. I could teach her to use the wristbands. Cool! Thanks for the inadvertent idea. :)
ReplyDelete