Seven years into having a child with special needs, I am still amazed by the kindness of strangers—those little courtesies and sweet gestures people extend to Max when they realize he is disabled.
It took time for me to reach a point of gratitude. Back in the early years with Max, I'd get unnerved when people did nice things for us. This mostly had to do with the fact that I hadn't yet accepted that I had a kid with challenges, and so it was always a shock to the system when other people noticed:
Oh. I have a child who looks like he needs help.
Oh. I have a child who really does need help.
Oh. I am a mom of a kid with special needs. How did this happen?
But all last week, during our vacation at the beach, I was deeply grateful for the kindness of strangers.
Grateful to the head of the day camp who took extra-special care of Max.
Grateful to the woman on the boardwalk operating the car ride who let Max go around again and again (and again and again).
Grateful to the woman at the zoo operating the popular kiddie train ride who let Max go around twice.
Grateful to the woman at Six Flags Great Adventure who was manning a bus ride. Max was too afraid to get on it; all he wanted to do was help open and shut the doors after people had gotten inside. And she let him, thanking him profusely for helping.
Grateful to the waitress at the restaurant who pureed meatballs for Max and then twice took back his milkshake to thicken it up so he'd have an easier time drinking it.
Grateful to the woman at the miniature golf course who let Max play for free.
Grateful to the maintenance guy at the resort where we were staying who was walking through the lobby carrying a box of pizza; Max ran up to him and gestured at the box. And damn if the guy didn't open it up and hand Max a slice on a plate (and then Sabrina, too, after she charmingly wailed "I WAAAAAAAANT SOME!!!!").
Grateful to the security guy at the resort who let Dave drive Max around in his golf cart in the underground garage (I think Max is experiencing severe ride withdrawal this week).
Sometimes, these gestures give me pause. I don't want Max to feel spoiled or entitled, and I don't want other kids to resent him. There was another little boy riding that train at the zoo who wanted to stay on it as well, only his mother made him get off. He glared at Max, though Max didn't notice.
Still, at this point in Max's life, I am OK with letting him get the kid-glove treatment (within reason). These gestures make Max happier. They improve the quality of his life and make mine easier as well. They also make me feel supported in this tremendous responsibility I have of raising a child with special needs. Whereas before the recognition from strangers was bittersweet, I have grown to appreciate it. I feel less alone.
It doesn't take a village to raise a child with special needs—it takes a world.
See, none of that good stuff happens for us...maybe we need to get out into the real world more often. Take us in your next vacation please. ;)
ReplyDeleteIt is nice when those in a position of power get it and help out. However, I'm still really irritated by the average person jumping in to "help" as if I'm incapable. Anyone else?
ReplyDeleteYes, if I am processing and no, if I am severely physically injured (or at least appear to be so). There is a difference between genuine acts of kindness and assuming incompetence
DeleteI think cool things happen to all kids like my sister getting to go on stage during a trip to vegas
ReplyDeleteI sure don't have to be Blanche Dubois to have always depended on the kindness of strangers!
ReplyDeleteI lost the shoulder chip about four years ago--really, it was too much work keeping it balanced and in place, and it just wasn't helping me! I work from the assumption that most people mean well, even if they don't know how to help or express themselves; after all, none of us are perfect in that regard, now, are we? When I encounter the odd individual who is simply a gawker, meanspirited or clueless, I make it a teachable moment and regard the opportunity as a part-time job.
For the most part, though, people are reasonably kind, and some people are VERY kind. Good thing. I try to pay it forward when I can.
Aside from us making Hailey stay in line at Disney like all the other excited kiddos to have her take a photo with her favorite character. I think it is a good idea to embrace the kindness of strangers. We say everyday that OUR children amazingly teach us, why not let them teach others to be kind, patient, and giving. Just like Felicia says if we pay it forward, the combination of the two will make this world a better place. Oh, and I just love the last line of this post. Thanks Ellen.
ReplyDeleteI had to laugh when I read the part about Max getting free pizza. Going out with him sounds like going out with a celebrity - except he's much cuter and more charming than, say, Lindsay Lohan.
ReplyDeleteIn all seriousness, I feel the same way regarding people giving Monkey special treatment. It used to rub me the wrong way, but now I appreciate it - within reason. If a waitress brings him a little toy or a glass of chocolate milk, I'm going to be very appreciative. However, if someone treats him with pity ("Aww, poor little thing! You get an extra balloon), it's going to make me bristle. I know people mean well, but as you said, I don't want Monkey to grow up feeling "special" or entitled because of his disability.
I can rely on the kindness of strangers with knowledge of his disability - but in the realm of Asperger Syndrome - I find I spend more time educating strangers (and those family members that should be more accepting)
ReplyDeleteBecause there is no visible disorder - we have dealt with people pushing him to the point of meltdown because they think his anxiety is him being a baby, I have been told to stop babying him, that he needs more discipline, and when we get a meltdown in a public place - We obviously are doing something wrong as parents.
Having walked this path - I now think twice when I see a child meltdown.
The flip side of that is that when people do know something about AS - they can be wonderful in smoothing the way like his first airline flight. The attendants were fabulous.
This post is so encouraging, Ellen. Thank you. Barbara
ReplyDeletePhew - that made we well up with tears! I always say that people in general want to be nice, they just don't always know how. they want to do the right thing, but are stumped sometimes on how to do it. Obviously, you and Max give off the good vibes that are brought back to you! I live by that (putting out good vibes to the world) - sometimes it works, sometimes not, but my life and the life of my kids (one of them being quite disabled) is better because of it. wonderful post!
ReplyDeleteKristen
This is an interesting post - proves that acts of kindness go a long way!
ReplyDeleteBeautiful post :)
ReplyDeleteEmmett's disabilities aren't physically obvious. His sensory integration issues, problems processing, when he can't answer direct questions...it looks like bad parenting on our part. When he's having a bad day out in public, I feel very lonely.
ReplyDeleteYour post, however, was beautiful and brought tears to my eyes. There are an awful lot of good people in this world.
I *get* this post. And I am grateful that I do.
ReplyDeleteThe smile on a stranger's face as she tells me what a blessing Isaiah is can erase the frustration of 5 rude stares.
It's great to hear of so many people helping, Ellen. Like that, at first I didn't want special treatment for me and my kids, but with two now diagnosed, I appreciate every little gesture :)
ReplyDeleteI've always wondered how I would react to situations like these. Romy is small for her age and still looks like a baby so I haven't had many people notice that things are different but I know that day will come. Great insight. Thanks.
ReplyDeleteSpeaking of paying it forward, I just voted for you using that black button at the top of your blog (different from the last red round button!). You're in SECTION 8, which isn't low-income housing in this instance, it's BLOGS THAT INSPIRE, and that is what you most certainly do!
ReplyDeleteThe people who vote for you need to be sure to plug in the confirmation code for the vote to count (you vote, they send the code to your email, you plug the code in and they say thank you). Anyway, hope you win! Everyone, vote for Ellen each and every day! I will keep doing it as long as I can!
Thanks so much for this post, I so needed it this week! I am relatively new to the special needs world (my son is 19 months old) & for me, the kindness of well-meaning strangers sometimes really hurts me. Yesterday I took my son to a music class for the first time. It was a class full of typical kids, with my son being the only "special" child with DS. This was the first time we had ever been in this situation, aside from a gathering of family or friends, & it was a kind of reality check for me. My son did very well in the class. He was very attentive, playing with instruments, just like the other children, & he seemed to have a great time. I should have been thrilled, but I couldn't but help notice the other moms "noticing us". Moms were encouraging their children to bring toys to my son, even though he was more than capable of getting them himself. Afterwards, a couple of the moms made a point to tell me that my son "did really well in the class" & that he "seemed really bright". I know that they meant well, but their words brought me to tears. It was then that I realized, "Oh. They know that my son has DS. They know that he is different & they're being nice because of that fact." Don't get me wrong, I am thrilled that no one was rude to my son, but at the end of the day, I wish that everyone could see what I see. A beautiful little boy who just wants to laugh, play, & be treated like everyone else.
ReplyDeleteSweet!
ReplyDeleteIt is amazing when our kids bring out the best in others!
Go Max!
Now that the oppressive heat is upon us, we've spent a lot of time in the water, which means NO HEARING AIDS... I've been LOVING other parents' reactions to Graham: explaining to their kids, asking questions about sign language, encouraging their kids to interact with him... It's been awesome.
ReplyDeleteHanging out with our Max is like being a celebrity groupie. Not only does everyone say hello to him and smile - even people in the nursing home where my mother lives who don't seem to be smiling at any other time. We have been given free gifts, special seating, toys, balloons, and even a tour of the Baltimore Aquarium after they closed it for visitors. I often say that Max is like a "Goody Bag" since you never know what you are going to get. I struggle with it in the same ways as you do because it means that others see him as different. I try to teach some humility in the experience but sometimes I like to think of the kind gestures as a way of balancing out the universe a bit...
ReplyDeleteJanis, I would love to vacation with you guys. And, yes, I think it would be an excellent idea to get out more. :)
ReplyDeleteMarcy, I know what you mean, but we haven't had to deal with that so much. When Max, say, trips and falls at a playground, I have no problem with another parent picking him up if they get to him first.
AZ: That sounds awesome for your sis, although being on stage in Vegas would be my personal idea of a nightmare. I would be a very lousy showgirl.
Felicia: Have I told you lately that I love you?
Janet: We should have made Max stand in line with the other kiddos at Disney, but we chickened out. He gets whiny.
Everyone else: Thx for sharing your stories/thoughts. I love how we all inspire each other.
Beautiful post. We have dealt with some really rude people over the years but have also run into some amazingly kind and compassionate folks.
ReplyDeleteI can so relate with Drea, my son's struggles and handicaps are not visible to the naked eye. And to be honest, sometimes I wish I were. I hope that doesn't make me an awful mom. His Apraxia, autism and sensory orders, would only be recognizable to another parent of a child with the same or...this is the bad point, when someone has pushed him. Last experience it was a new hairdresser. I had dropped my purse, being a klutz runs in the family, lol, and in the 1 minute it took me to gather it up, while telling the hairdresser to please NOT pick him up to put him in the chair, all He_ _ broke lose, he lost it and the hairdressed, jumped back, saying I was only trying to help, what's wrong with him? I stated I was trying to tell you to stop but you didn't listen...and unfortunately that 1 minute of extra pushing, blew the entire day. Not just a few minutes to re-coup, but the entire day. I can see people smirk and roll their eyes out of the corner of my eye, when his actions appear over the top and some days it makes me feel so very alone. I will never look at another child acting out or having a "temper tantrum" the same every again. Because I silently wonder if there is more to meets the eye, same as there is with my "normal" looking child.
ReplyDeletetesnjen at aol dot com
I always have the same reaction...but end up getting over myself and letting the kindness of strangers take over!! Great post!! We are going to Washington DC and Disney next week...here's hoping for LOTS of kindness from strangers! ;)
ReplyDeleteThank you for sharing this post! My eyes just welled up with tears as I read both the article and the comments. As a mother of a son with high-functioning autism we have been on the receiving end of both kindness and rudeness from strangers. Both situations can teach me something. It's also GREAT that I have a son who practices random acts of kindness on anyone with whom he sees fit, as well. He loves to give away toys, tell people he loves them, help others, etc.
ReplyDeleteGood luck and best wishes!
You write with such elegance and get right too it you know...it does indeed take a world to raise a child with special needs. What you forget is that a child with special needs is special for US ALL...and all those people who show you and Max those kindnesses are showing that to be true.x
ReplyDeleteSometimes I call our son with special needs "the golden ticket", since he opens doors that I never expect to be opened. I've had people help us with little things, like doors (I still am not a pro with his wheelchair), but also coming out from behind a counter to take care of us (and very quickly, before he melts down!). I am grateful that other families have also encountered such kindness.
ReplyDeleteNow if only my neighbor would learn that being tired after her tennis lesson does not mean that she should park in handicapped parking...
You know, this week Sebastian had his first hippotherapy lesson and I just felt so happy and emotional because he could do something that was fun with his body. There are so many things he cannot do right now and being on that horse and lauging as the horse went a little bit faster made up for all those things, like running and playing independently, that he can't do right now. And I think of that when you write about the special things Max got to do and how other kids might not understand that. But they get to do other things without even thinking about it that many of our kids can't do. Warmed my heart to read about all the fun things and interactions Max had on your holiday.
ReplyDeleteThank goodness for the kindness of strangers. I like to believe that most people are intrinsically good, and children with special needs can bring that goodness out of them.
ReplyDeleteMy son is 14, and can be physically awkward at times. His balance isn't that good and when we're on a moving bus, he would sometimes stagger. About a month ago, we got on a bus which did not have an empty seat. As we were moving to the middle of the bus (close to the exit), the bus jerked a little, and we both stumbled a bit and immediately grabbed the seat handles. An older man (in his 60s) who was seated near the exit, got up and asked (no, insisted) Lucas to take his seat. I was so touched by his kindness and couldn't thank him enough.
We need more genuinely kind people in the world.
ReplyDelete