Sunday, 07 September 2008
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Out and About Town with Autism
My son has always been a busy bee. In fact, he stopped at Wal-mart for some shopping and his daddy's workplace for a meet and greet on his way home from the hospital. He was attending softball games before he was 5 days old and he traveled across the Florida Panhandle for Easter with his Granny before he was even 2 weeks old. By his first birthday, he had already had 4 different addresses. No, he isn't a home body by any stretch of the imagination.
Of course, with the onset of his autistic traits, life in the community became a little more complicated. It wasn't too difficult at first because unless someone really knew what they were looking for, he seemed like any other slightly spoiled and loud two year old. Observant people without knowledge of ASD may have noticed that Junior stared into space, flaps his hands and shook his head wildly at times, and didn't talk...but most people weren't around him long enough to pick up on his eccentricities. However, as he grew older yet maintained his toddler like ways, more and more people noticed and more than a few commented, "He ain't right."
At no point in Junior's life have we thought that it would be wise to keep him at home and out of view or the way of the public. We never slowed down. We never stopped coming up with vacation ideas or local activities. After all, if you really pay attention to other people it is obvious that our communities are filled with diverse populations. There are people without Autism that are rude, crude, obnoxious, and generally unpleasant. Any avid shopper can recall at least one time when they have witnessed other non developmentally disabled adults throwing their own versions of temper tantrums at long lines, empty shelves, pricing errors, and other retail mishaps. There are other children, some the same age as my son throwing their own fits over a wanted toy or gadget when mom & dad refuse. So why should we think twice about taking Junior anywhere that families are generally welcomed?
At the same time, we do take other people into consideration. We don't set out to ruin anyone's pleasant community outing by subjecting them to one of Junior's meltdowns. At the same time, our main concern isn't the general public. Our main concern is Junior and we want him to enjoy his vacations, road trips, family visits, and community outings. Therefore, we do have some guidelines we follow.
If Junior is having an off day, we keep him at home. We don't take him out and about if he is sick, tired, or hungry so as to avoid potential melt downs and public scrutiny. Prevention is our motto. If we are out and he has an unexpected melt down, we leave. When dining out, we eat just before or well after the peak hours of restaurants. When going to movies, we pick something that we think will hold Junior's interest. We also wait until the movie is about to leave circulation so that we are usually one of only 2 or 3 other families in the whole theater. Even then, we sit as far away from everyone as possible. If/when Junior starts to get antsy or his verbal stimming gets loud, we take him for a little walk and come back when he settles down. We don't visit amusement parks during peak season. We try to shop either early in the day or later in the evening to avoid large crowds. We even ask his doctors to not double book him and to call us if they are falling more than 30 minutes behind so that Junior won't get anxious and upset and disturb other patients who are also upset with having to wait so long.
This careful dance with the community takes a lot of practice and a great deal of careful planning. Even so, we still encounter negativity on a fairly regular basis simply because our child doesn't fit the ticky tacky mold of society. The thing is...while the attitudes of others may upset us temporarily and can even bring me to tears, we never let any of it discourage us from giving our son a life outside of his home.
If you have a strong willed child or one with a developmental disability, what to do you do to make navigating the world easier for your family and the public?
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Comments (22)
My kids are neither disabled or strong willed, but I think that dance of balance is a part of every parent's life to a certain extent, although for some it is obviously a different sort of challenge.
We've always worked to teach our children that others come first, not to an unhealthy level, but it is a priority in our life. I dislike when parents seem to have no concern for those around them, and allow their children to act out of turn with no concept for others. I also dislike when people give no grace to children and don't understand that kids are kids and no matter how hard you try you can't always change that. We're all in this world together and need to realize that those around us need to be respected and sympathized with, not just judged!
When my kids are having an off day, we don't leave the house either. I've always gone to stores prepared with snacks in my bag or little things to occupy them so they aren't just being noisy and causing a scene. We rarely take our kids out to eat, just because it is honestly a lot of work to get them to sit still, and we kind of save eating out for date nights, etc. This won't always be the case, but restaurants and toddlers/infants just don't mix well!
We do a lot of the same things you do, and now thanks to you I have some new ideas. We eat out all the time, but always early. The only movies we've taken him to are the free summer kid movies, where the theater is packed with kids crying, screaming, and talking. Hubby takes X out when he starts to act up in places, and I am usually left behind to pay the check, finish shopping, make apologies, or whatever. We try not to treat him to much differently from everyone else, so we don't let him get away with pushing his limits just for the sake of pushing, but we always have snacks/toys/bribes on hand or in mind for when he is really losing it. My purse doubles as a suitcase for all the necessities of life with an autistic 5-year-old. We try to be ready for anything, and willing to change/surrender plans based on X's mood. It's a balancing act, usually involving eggshells, but we don't want to exclude X from the experiences of the world.
My daughter has Down syndrome. She is only 18 months old so being out has not been too big of an issue as yet. I do have a rather busy 3 year old with no developmental issues and I gear my outings more to his mood than that of his sister. We take many of the same precautions that you have mentioned. Off days are days best spent in close proximity to home and outings are planned around times that are more child friendly.
What is really fun is when my best friend and I take all our children, 10 between us, out and about. Her oldest daughter is autistic and add my daughter to the mix, you can imagine the looks we often receive. We just smile and move on.
One thing I have found amazing, and let me know if this holds true for you as well; the children are the most accepting of my daughter. They smile, they engage her, they ask me how old she is and so forth. It is more often the adult that seems to avoid eye contact, looking everywhere but at her. I wish those parents could learn something from their children.
Great post!
That is a rough challenge. I feel that if I had a child would autism I would operate much the same way. Still, I can understand the public's frustration as well. Once, after spending some long gruelling months with little to no free time, my husband and I finally found some time alone and decidded to go out on an actual "date." I.e. dinner and a movie. We ended up catching a movie that we'd really wanted to see but hadn't been able to, so it was one of the last weekends it was showing at the theatre. Also, we're poor so we decided to hit up an earlier afternoon showing. The theatre was still surprisingly full. The problem was, we couldn't hear the entire movie because there was a child with autism sitting at the very front of the theatre screaming and shouting at the screen the entire time. At first we thought it was just a teenager being rude but then we realized the child was literally afraid and fearing for the lives of the characters on screen, as well as startled or overcome by just about everything up there. And he was in his teens.
Anyway, we wouldn't dream of being rude or mean to that family or insulting their child (my husband actually works with kids with autism and knows how challenging it can be) but I do wish they would have removed the kid from the theatre. We paid twenty bucks to see a movie and didn't even understand it nor enjoy it. My guess is they were much more used to the child's noise and what qualified as "a disturbance" for them was different than for us. We left the theatre very frusterated; our date night was just about as stressful as our past few months had been. I can imagine people with shorter tempers might have been very rude to the family, especially those who don't understand autism or how challenging it can be.
Anyway, it sounds like your family has got a good method going.
I don't like posting much about my son in public yet. But kudos to you.
Have you ever thought about a service dog for your son. I know my dog has really helped my son a lot. In fact if I can ever get the money for the testing together, I will have her certified as a service dog for him. (You don't have to spend crazy amounts of money, you can find and train a dog yourself, and just pay for the testing.)
i actually plan my events the same way you do because i can't stand crowds very well, but my boyfriend is even less tolerant to them than i am! he gets very irritable in a crowd or some kind of large public situation, so everything we do is around peak hours of stuff. :D
I hope that you have opportunities to provide support to parents whose children are much younger than your son. Your prospective and experiences could really help them to see that life doesn't come to a screeching halt when your child has autism. Junior is lucky he is your child! (and I'm sure you're thinking....no, I'm lucky to be his mom. Well, it goes both ways!)
After witnessing many of other parents struggle in public with children that need to be changed, fed, or put down for a nap, I agree that it's a dance that everyone either learns (strong-willed, disabilities or just simply wet/hungry/tired) or puts themselves in a bad situation.
Fortunately for us, because of my fiance`'s work schedules, we're rarely out at peak times and have to avoid packed restaurants also because of Tim's Diabetes. I don't farewell in crowded stores...it seems that if you get more than 25 people in any store, their IQs all drop below functioning levels and you end up with zombies pushing shopping carts aimlessly. I don't know how or why it happens, but it does. I've come to accept it as a fact of life and simply turn around and go back to the car if things look too dire. I do plan to factor in feeding and naps when Megan is here, too. It just seems silly not to. Nobody likes stress, I don't understand why so many seem to set themselves up for it.
@yourmom - I can definitely sympathize with that. I stopped going out with a friend and her family because she refused to remove her Autistic son from situations that were both disrupting to other people trying to enjoy their nights out and causing her son's "meltdowns" to go nuclear. The icing on the cake was always when she'd complain about the looks and comments she received and how "unfair" it was... Well, let's see, you wouldn't make him hold your hand or otherwise contain him, so he just charged through a crowd of people like a bull in Pamplona, you refuse to distract him while the rest of your dining party clears the table of desert menus because we know this is a problem, so 3 minutes after being seated and having the child request "Death by Chocolate" as a entree`, you refusing, meltdown starting, sippy cup becoming airborne, sailing into the candle and lobster butter on the next table...yeah, I think it's fair to assume that you might get a few looks. On top of that, his only real outward signs of the disorder were humming and flicking his fingers infront of his face. If you don't know any better, and a lot of people don't, it looks like a spoiled brat trying to be really annoying...and suceeding admirably.
I ran across a blog of hers another a website a week or two ago, whining about how she's always stuck at home because nobody wants to go anywhere with her and her son anymore.
Yes, she is completely serious and beyond all reason. If you try to suggest something productive and you don't have children, clearly you've never had the experience of pushing something the size of a watermelon out of something the size of a lemon, so you don't know what you're talking about, it won't work, it's not even worth trying. If you do have children and they aren't Autistic, you have no clue what you're talking about either. If you do have an Autistic child, well, then you know that they're all different and what works for your child won't work for hers. Five minutes with this woman and you feel like you have a firm grasp on what an Aneurysm feels like. I've baby sat her son in the past (pre-distancing myself and mine from the toxic fumes of that "friendship") and he's not a bad kid, you just have to manage what situations you put him in....which she refuses to do.
@filtered_sunlight@xanga - It is unfortunate that your former friend has not found a way to balance her son's needs with those of the public's.
I think the thing that upsets me (and yes, it still crawls under my skin after all these years) is that even when Junior is doing his own thing and it isn't disruptive at all, like his verbal stimming or drumming with straws in a store or restraunt...and he does do these things quietly***, some people still feel a need to stare and glare like I brought in a child with Ebola. It gets so much worse if he does have one of those unexpected meltdowns. Sometimes he is just stared at and made fun of (I am sure they think they are being subtle, but they are about as subtle as skunk spray) just for being different. Now that does really tick me off. My mom was very firm in teaching her children that staring, pointing, and making fun of anyone is just rude and unacceptable..no matter what.
***Junior is pretty quiet and whispers quite a bit. I think it is because he knows that loud voices bother me. I think what people are staring at isn't his volume but just that he looks like he has schizophrenia the way he whispers to himself and plays with his straws.
@gwacemom - When Junior was younger and our friend's children were close to his age...they were definately more accepting. As they grew and Junior grew, they thought nothing of his eccentricities. However, since we moved and our new friends now have older children, just as Junior is older...they are not as accepting. They tend to ignore him, as do their parents when they come over and it does hurt our feelings enough to distance ourselves from others at this point in our life.
I think as children grow older, they start to pay more attention to the way their parents behave rather than have that naturally accepting attitude. If their parents ignore Junior, then they will ignore him. If they embrace Junior, then their children usually will as well. Unforatunately, that hasn't happened with the last several families we have spent time with.
well considering I am usually the calm one in our 6 boy outing, I am the only one to try to maintain everyones attention span for a nice 7 person household dinner. I've got everyone trying to talk all at once when the wait staff comes. At this point I am about ready to sit at someone else's table. Yes my family lacks respect for me or anyone else in the outside society. Its a bad learned habit from the spouse, once the meal is finished the bill is paid the night ends in me screaming on how rude everyone was.....I dont know why I try to correct it when we go out it ends up the same way....this time I am the one appologizing for my rude family and sometimes I wish they werent mine.
I totally get what you're dealing with. My freshman year of high school I was involved (somewhere in between relationship and close friendship) with an autistic young man. We ceased to have anything to do with one another about a year later, but not before I had learned a lot about the issues he faced, and through doing research to understand him better discovered that I'm actually close to being (but not quite officially) on the spectrum myself.
Neither of us can handle situations of the pep rally genre, like physical contact except from a trusted few, can read facial expressions, or can verbalize thoughts and feelings. In fact, the main difference between us was that he had an automatic excuse for everything he did wrong... including be abusive, which had nothing to do with his autism! (Never let your son use it as an excuse for everything. That's my advice.)I babysat an autistic girl from age 5-7ish. when we would go out, I would always bring "Chicka Chicka Boom Boom" and or other favorite books/toys of hers. It's so aggrivating when she cries or yells or acts out in public, and someone makes a comment like "Hey, control your kid." One time my sister was babysitting when she was around 20, and some mother loudly made a comment saying "These young mothers should wait until they can handle kids to even think about having one." >=[ growl.
@mamaelephant - I think the louder variety get more attention, at least in part, because of the security concerns that we face today as well. The fiance` and I had a conversation about that after an "experience" in Wal-Mart a few weeks past. Some guy in his late teens/early twenties started screaming incoherently infront of the biscuits. Tim and I both gawked. Not because we wanted to make anyone feel uncomfortable or be rude, but because someone is flipping out and my first thoughts are, "Great, I'm going to be shot by some lunatic in the middle of Wal-Mart, of all places, holding coffee creamer and pondering this box of Ho-Ho's. Not that I've given it much thought, but this is not the way I would have planned my demise. Not by a long shot." The subject came up again in idle chit-chat with my mom last week; 32 years ago (when she was my age) that wouldn't have even been a thought in her head. It's incredible how much the world is changed and that we now look at anyone doing anything outside of the "norm" as, "Are they crazy? Will they hurt me?"
True, some people are just jerks. But I'd be curious to know what people are really thinking when they see someone that has no physical "tells" of a disorder and either aren't around that person long enough to see things that would be a dead-give-away to some or don't know enough to reconize them if they do see them. Could it be, "Crazy person whispering to his straw at two o'clock... I wonder how long it is before the straw tells him it would like to be embedded into my throat... Great, I'm going to die while pondering green beans vs. french fries...probably killed with a straw no less... G-L-A-M-O-R-O-U-S, yeah..."? Do you think it's easier for parents of children that do show outward signs of a disability or do you think they get asked the ever-so-tactful, "What's wrong with your kid?" question more often?
Oh, yes, and biscuit meltdown guy? Not armed and not Autistic...just suffering heavy verbal diarrhea and too much thug attitude.
I have a son that is Autistic and two children with Asperger's Syndrome and yes dealing with the public sometimes can be tricky. Sometimes no matter what you do, you are going to get looks, stares or even comments. We don't have melt downs too often anymore, but we know the warning signs if one of our kids are getting over stimulated or stressed and if we see it, we remove them from the situation. It's the best thing for them and it is only fair to the people around them.
It is a balance and if they are having stressful days, we just stay in or hang out in our yard, playing games or what not. I do that more for them though because we know that when they are having off days, it's better not to put them through the stress of crowds, loud noises etc.
Great post though. Thanks for sharing about your son.
Your son sounds young, my brother has moderate-severe autism and is 17. Honestly, after 17 years I'm used to whatever he's going to pull in public. The rule of our house is "If Spencer's happy and not being destructive, leave him alone." So, if he wants to walk around the store and take pictures of everyone and everything and he's happy doing that and no one seems to incrediably irritated (no one's cussing yet) then we don't stop him. He also has tendency to shop for other people by putting products he wants into their carts and you just have to look at it in a humorous way. The faces people pull when Spencer puts a box of Oreos in their cart is great.
Most people make exceptions for those with visible disabiliies; a limp or being blind or something. Just because my brother looks pretty normal doesn't mean he shouldn't get those same exceptions. The people that are rude no matter what simply don't matter in my book. You can make a big deal of the stares or you can just ignore them. Or you can stare back, a personal favorite of my Dad's.
Of course we think ahead about certain things like movies and he has gotten better about being quiet during a movie. But since everything we take him to is for kids verbal interruptions are pretty regular even when Spencer is the quiet one. At this point we're really trying to help him in stressful situations rather than prevent them. Ten years ago we never would have been able to take him to the movies or to Disneyland, but with approaching those kind of situations fully prepared it's become a little easier. (And he loved all the characters at Disneyland last summer.)
One thing I know helps me is to have my headphones with me. If things get too stressful, I just put one earphone in and it helps cut down on the sensory overload. And since I have the standard white iPod earbuds, nobody really seems to notice if I have one in.
I'm wondering what all my family will have to learn to deal with with one of my cousin's children that we adopted. Hm. I think I like seeing how you guys are handling your child's uniqueness. How old is he now, if I may inquire?
May God bless you,
~*Akarui Mitsukai*~
I'm smack dab in the middle of the autism spectrum and was the central focus of kindergarten and first grade, which were miserable. I never got professional help, and my mother was determined to 'fix' me to the point of abuse. I think this is one of the more excellent blog posts I've read on handling an autistic child, and I appreciate it very much. I have very strong feelings about how people freak out about autism and how I've handled having it growing up and through my adult life, which I've made easy to find on my blog through a link button in the header called 'aspie stuff'. Thanx again for blogging this.
There is a lovely book written by an autistic child that you might be interested in. Its called How Can I Talk If My Lips Dont Move.
@akarui_mitsukai@xanga - He is 13 years old. I don't know that I want to "fix" my child but I do want him to learn how to live his life as independently as possible and how to navigate life in the community in ways that are socially acceptable...not because I am ashamed of him or don't accept him but because our society is increasingly intolerant of diversity and because it isn't safe for him should someone take offense to his behavior. We all, regardless of our neuro-development, must learn to live with each other and make compromises. My son must learn to cope with uncomfortable situations to the best of his ability, the same way I must learn that skill and the way everyone else has to learn to function in public regardless of their surroundings. He must learn an effective way to communicate should he ever be abused or neglected by his caregivers once I am gone. I don't expect less of him because he has ASD just as he doesn't expect less of me because I get exhausted, sick, or less affluent. I expect him to do his best and if he does that, then I am as proud as a mother whose child just found the cure for cancer even if my son's best is pushing a broom or washing dishes for a living.
@mamaelephant - Yes, I can imagine. :) Keep that strength and courage, girl. It sounds amazing. Know I'm praying for you today, okay? :) Can't wait to see further updates about your baby boy, and what he becomes because of how you're handling things. n_n
<3, ~*Akarui Mitsukai*~