This is Autism. In Case of Emergency, Your Seat Cushion...
Managing Editor's Note: Thank you to Barbie for this post. It's gutsy. So often parents of children with autism (and other disabilities) paste on a brave face and tell the world, "Everything is fine." Guess what? In an autism household, everything is not fine. There are ups and downs and all arounds that families not facing autism can't fathom. This isn't a reflection on our children, whom we love dearly, but on the harsh reality that is autism for many, most of all, for the kids.
By Barbie Hines
Bon Voyage
My husband and I recently planned a vacation for our family. We were very much in need after a particularly difficult year for our son, Jimmy, who is severely afflicted. As afflicted as my son is, he is a wonderful traveler.
In the weeks prior to our departure, we had a ‘lesson’ on Hawaii. We used a ukulele during music time. We practiced the hula dance (well, I did…Jimmy just laughed). We watched a video of surfers. We even made a vacation book, with pictures of things we would do. We showed Jimmy online photos of the house we would be renting. We bought a pop-up book about airports.
As we were watching Jimmy ride the escalator ‘just one more time’ before heading to our gate, I said to my husband, “We have lost so much to vaccine injury. We have lost money, health, happiness, friends and family, the desire to have more children and faith. But, we have not lost our family vacations – thank goodness!”
Jimmy was wonderful. The idyllic six-year-old boy, heading off on an exciting adventure. He was literally squealing with excitement as he pulled his Thomas the Tank Engine backpack on wheels through the airport. I was beaming. I sent a text to my mother and sisters, “Jimmy doin gr8!” And then we boarded the plane.
As soon as we entered the cabin, Jimmy panicked.
He jumped into my arms. He started grabbing seats, trying to push us out of the cabin. I struggled into our seats. It took every ounce of strength I had to keep Jimmy on my lap. Jimmy is 48 inches tall. I am 58 inches short. He wanted out of that cabin. He fought with all his might.
I pulled out all the tricks. I was singing his favorite songs in his ear. I tried stimming on his ‘stim’ toy. My husband ran over with the portable DVD player (my husband and daughter, Reagan, were on the other side of the plane). I tried the back rub the chiropractor taught me. I tried foot rubs, which always work during stressful times. I sprayed ‘rescue remedy’ in his mouth. I pulled out the emergency candy stash – food coloring, preservatives, the works! His anxiety only increased. After about thirty minutes, I could barely hold him. A woman sitting behind me offered to switch seats with my husband, who was standing up in his seat, watching us, with a panic-stricken look on his face. I thanked her, and my husband and daughter quickly moved behind us.
Sweat was dripping down my face. If I released my grip on Jimmy, he would get away. My arms were quivering (why did I quit working out?). My poor boy had a facial expression I had never seen on him before. He looked scared to death. His breathing was now sounding different. He wasn’t screaming anymore, just sort of gasping. My daughter stuck her chubby, little 3 year old face between the seats and scolded, “Jimbo, sshhhhh! Me playin’ Leapster!”
A flight attendant came over and said, “You will need to tell us if there is anything we can do to help. We cannot take off like this.” I replied, “I understand. Can you give us some more time?” Shortly thereafter, the pilot announced our flight would be delayed by approximately thirty minutes, and he apologized for the delay. Great, we are now “the delay”. Something new for us. My nephew may have graduated in the top 2 percent of his class this year, but could he ground a plane of 350 passengers?
After fifteen more minutes of this, I said to my husband, “I have to get off. This is not right. He is not capable of doing this today.” My husband replied, “Then we will all get off.” I sternly replied, “Oh no we won’t. I will not lose anymore. I will not. I will get a sedative from the doctor, and Jimmy and I will join you in a couple days.” With that, Jimmy broke free. He took off down the aisle. My husband took off after him. I stood in the aisle dumbfounded. I needed to run after him. I knew he would find a way off the plane. But I looked at my 3-year-old. Could I leave her sitting there alone?
A sweet, young college boy stood up. “Ma’am, go ahead. I will sit with her.” Reagan replied, “Oh, hi friend! Wanna play Leapster?” I thanked him and ran. As I ran off the plane, a flight attendant called behind me, “Hey, you cannot just exit the plane like that.” This at least brought a slight grimace to my face. Watch me!
Ahead of me I saw my husband running. Ahead of him I saw my son being held by a grandfatherly looking gentleman. Jimmy was crying on his shoulder. I yelled to my husband, “I’ll get Jimmy. Get back to Reagan.” He turned around and started to run back to the plane. I was almost at Jimmy and I heard my husband yell, “Barbie!” I turned around. He hurled a set of car keys at me.
Jimmy and I slowly started the return to our car. He was sobbing, not tantruming. He continued with this very pathetic, heartfelt sobbing. His head was in my lap on the tram ride. As I strapped him into his carseat he signed, “Sad.” “I know, Buddy. Don’t worry. I’m going to call the doctor. He will help us. You will get your vacation. I promise.”
For the next nine hours, my husband was on a plane with our daughter. We obviously didn’t plan for this separation. He was on a plane not knowing which car rental agency had our reservation or how to get to our rental house. I had all the travel documents. I had his cell phone. His wife and son were upset and away from him. He could not fix this for his family, and he hates that.
I was on my way home. Trying to drive, drink a diet coke (which I so badly wish had Jack Daniel’s in it), and see through tear filled eyes. Somehow, I managed to send another text, “Jim n Rea goin 2 Hawaii. Jimmy n I goin home. Dont call. 2 upset.” I didn’t know if I had house keys. All of Jimmy’s supplements were on their way to Hawaii. I own 7 pairs of underwear. Six were on their way to Hawaii. My mother ignored my text request and called. “Can I come over?” I replied, “Fine. But I will be on a chaise lounge drinking a manhattan and smoking. Don’t say a word about it.”
Two days later, we returned to the airport, liquid Valium in my purse. Before we left the parking lot, I gave the first dose to Jimmy. As suggested, thirty minutes later I gave another dose of Valium. Ten minutes later, Jimmy was literally staggering. He was staring at his hand and laughing.
I told the flight attendant that we needed to board first, before any other passengers. I quickly explained what happened two days prior. She said, “You can board immediately after the Premium passengers.” I looked over at the Premium peeps in their Armani suits. I told the flight attendant, “They look pretty healthy to me.” She didn’t reply. I decided to keep staring at the Premium peeps. Come on folks. Get it. Catch on. He needed to get on first. Perhaps if I stared them down, they would get it. I knew they heard my explanation. And, if my method didn’t work, the first guy was hot. Not a total waste of staring, regardless of the outcome.
The flight attendant/charm school graduate asked the Hot Guy for his boarding pass. He looked at me and said, “You first.” A hot guy with brains. Gotta love it!
We boarded the plane. Jimmy was nervous again. However, this time he was stoned, so it worked. We took off! Life was great for about 4 hours. Jimmy had been sleeping since take off.
Jimmy woke up and all hell broke loose. He didn’t know where he was, he was still stoned and he needed to use a bathroom badly. I ran to the bathroom with him where five people were in line. We stood there struggling for a few minutes, and I finally asked, “Can we please move to the front of the line?” A woman, whom I now call Einstein, asked, “Why?” I replied, “Because my son is scared, stoned and autistic. I don’t think I can hold him much longer, and if he wets his pants he’ll really get mad and everyone on this plane will suffer.” While I was contemplating smacking Einstein, a surfer dude came out of the other bathroom. “Ma’am, you can use this bathroom.” “Thank you!” Just then, Jimmy urinated all over me. I grabbed Surfer Dude’s arm as he walked past me. “Please, please help me. I am in seat 28A. There is an orange NorthFace backpack there. Please bring it to me.” He replied, “No problem, Dude.” Jimmy had now stripped. He doesn’t like having accidents. He insists on changing all of his clothes when it happens. Surfer Dude brought me our backpack. I dressed Jimmy, shoved a dumdum sucker in his mouth, and we made it back to our seats.
We continued to struggle a bit. I was wondering if I could give Benadryl with Valium? I decided against it. Surfer Dude walked over and asked, “Can I get you anything?” I told him to reach in my purse and grab my wallet. “PLEASE go buy me a diet coke and Jack Daniel’s. While you’re at it, buy yourself a drink.” “Wow, thanks, Dude!” From his excited response, I’m fairly certain I bought a minor a cocktail.
Surfer Dude returned with my drink (there is a God!) and handed me the change. I begged him, “Please keep the change. Buy yourself some condoms in Maui.” Laughter filled the plane and continued for several minutes.
P.S. Reagan had a wonderful vacation. She learned how to hula and loved the beach. My Jimmy learned how to ride the waves and kayak. He loved kayaking! And I confirmed with our speech therapist, kayaking would facilitate crossing midline…yippee! The flight home was perfect. Jimmy loved it as he always has in the past.
Barbie Hines is the proud mother of a 5 year old boy, Jimmy, who is afflicted with autism. Along with Reagan (Jimmy's sister) and Jimmy's adoring father, they live in a suburb of Chicago, Illinois.
I just read this and I was crying out of the understanding of this situation and laughing at the outcome and the goodness of hot guys and surfer dudes :) Thank you for sharing this and helping me and my son on our journey with autism.
Posted by: Beth | February 01, 2010 at 02:43 AM
Any suggestions on how to take my four year old autistic child who happens to be a "runner" camping? Some people in my support group have suggested me buying a harness but I don't think I'm comfortable with that. Don't want him to spend his trip on a leash.
Posted by: eedulin | June 24, 2009 at 02:11 AM
Lovely heartwarming post.
Makes me more thankful to the surfer dudes & hot guys in armani suits - they have big hearts toO!
Posted by: Ann | December 11, 2008 at 07:06 AM
I do believe you could have presented 'another side of things' without judging...and yes, your comments were judgmental. Again, you judge:
"Your “screw you” attitude does not surprise me in the least."
You do not even know me! But this time I am laughing...so my response will be kinder. I sort of feel sorry for you now...
"Let’s hear your version of how it was for your 3 year old daughter to watch you run off the plane. Or how she handled suddenly being in Hawaii with dad until you and Jimmy got there."
Reagan was great. In fact, she responded, "Oh hi friend. Wanna play Leapster?" to the gentleman who helped us. She's three...in that glorious 'it's all about me' phase of life. She loved being in Hawaii with her Dad. They are very, very close. We explained to her that Jimmy was not feeling well on the plane. Mom was taking him to the doctor, and then they would join she and Daddy in Hawaii...which is exactly what happened. Reagan's life will be different than a child who does not have a sibling affected by autism. Different...but not ruined. If Reagan needed extra help, she would also get it. Both of our children had a wonderful time in Hawaii...memories of a happy family on vacation. We are willing to take many extra steps in order to provide our children with these experiences. Giving up would be easy...but not the best for our kids or our family. I suppose a typical sibling could end up feeling frustrated that their affected sibling needed so much extra care. However, a typical sibling could also end up being grateful that they had parents who would go to such great lengths to bring happiness to the family in which they were raised. No one has a 'perfect' life. I would never want either of my kids to grow up feeling they deserve only a perfect setting...that's just not how life works. My guess is Reagan will grow up having the same wonderful experiences that many other children have...while learning how to make accomodations for others who are not as fortunate as she is...and perhaps appreciating 'family fun' and dedicated parents more than those without special needs in their family. Not a bad way to grow up. I would never want her to pass up on opportunities simply because they are hard to come by...and I would always want her to help those less fortunate then herself.
Jimmy loved our vacation. Reagan loved our vacation. My husband and I loved our vacation. We did the right thing for our family, as different as our family may be...
You stated you have a son with high functioning autism...because of this, I say we call a truce here...we are both parents of children with special needs...we are both acutely aware of how difficult that can make family life at times...support is what we need to offer others in our positions...let's go forward with that...
Posted by: Barbie Hines | August 25, 2008 at 01:43 AM
P.S. to my prior comment...
What I loved about this article is that it is simply an expression of Barbie and her family's experience. We hear quite a lot about what is the recommended best way to do things. There is value in that, but there is also value in just sharing our experiences -- the good, the bad, and the ugly.
I'm sure it was a wrenching moment when Barbie had to decide between staying with her young daughter on the plane or chasing after her son. This is a moment that many of us have experienced, to varying degrees and in various ways, when we go out into the world with a child who has a severe level of impairment along with a young sibling. It is very stressful. Yet if we just stay home we miss out on so much. Barbie wrote about this not in a preaching way, but in a way that expressed what it feels like to be in this situation.
There has been a lot of debate on the issue of whether it is inconsiderate to bring kids out to public places when they may tantrum etc. In my youth I used to see things more in terms of absolutes, but now I tend to see things more in terms of spectrums and balancing competing priorities.
For example, I think it would be wrong to bring to an expensive classical music concert a child who cannot be quiet and sit still. That is not fair to the other concertgoers. Perhaps the same might be said for an expensive restaurant. Is it just the money that is an issue? Well, no. But there is give and take. We do bring our son to the classical and jazz music concerts at our highschool. We used to sit in back so that in case he got very restless we could leave unobtrusively. These days he is better able to sit quietly, with just a few comments, and we actually did bring him to a classical concert at a concert hall. He loves music, so he was mesmerized.
There are other sorts of occasions and places where noise is more acceptable. One of my vivid memories of my son's childhood is taking him trick-or-treating. He went through a phase where he was totally fascinated with other people's houses. And, he loved blowing out candles in jack-o-lanterns. So at every house I had to carry him away shrieking because he so wanted to go into every house & explore it, and blow out every jack-o-lantern. Although it may have seemed like he wasn't enjoying himself, he loved trick-or-treating. At the end he would cry because it was over. Would it have been a more relaxing experience for my daughters if we just left him at home with Dad or sitter? I suppose so, but this was outweighed by the pluses of bringing him, and amidst the commotion of Halloween his shrieks kind of fit in.
I definitely believe that society needs to give and tolerate and learn about our kids. I agree with those who say that our kids who have paid the price for "herd immunity" have a right to acceptance and a place out in the world.
Where to draw the line? I don't think it is clear. We will all have different opinions. But to tell parents to just keep their kids at home until they can behave is all wrong (which is not what anyone on this post said -- but this has been said at other times and places). To never take the risk of meltdowns would be very unfortunate.
I guess I'm rambling on without saying much of anything except that there is no absolute answer. But Barbie's article is an affirmation of the value of wading through the marsh even when we are not totally sure of what is on the other side, and persisting in overcoming obstacles even without perfect solutions.
(My prior comment was written as "Ms. Manners" -- not to be anonymous, just making fun of myself.)
Posted by: Twyla | August 24, 2008 at 04:07 PM
Mom/SpEd teacher -
I think your comment would have been more well received if you did not say things like "I am suggesting that this trip was not the best idea". This is judgemental, and you had no idea what went into choosing and planning this trip. You do not know Barbie's family, her children, her family dynamics, their vacation/travel history, etc.
As Barbie said in her subsequent comment below, her family has traveled quite a bit, and her son loves going to Hawaii. But one thing about kids with autism is that sometimes it is impossible to predict what situation will cause an overload. In this particular instance, it seems to me that the risk of traveling resulted in a wonderful vacation after the initial crisis, but that is not my point.
It would have been better if you had phrased your good advice more along the lines of, "While I don't know anything about Barbie's family, and certainly there is no sure way to prevent all meltdowns, based on my experience with my own son and my students, here are some practices that we have found helpful: Start with a short trip. Go to the airport for a 'dry run'. Show the child the seating area and the long hallway... "
Don't be surprised by the emotional response you received, as your comment was a total put-down and pulled hard at a mom's guilt strings.
Posted by: Ms. Manners | August 24, 2008 at 01:10 PM
Allison, consider us "fed." And thank you. Emotions run hot when we talk about our kids. Barbie's post has started many important conversations and we're grateful to her for her honest, raw approach. It's not easy to put yourself out there for the world to see, trust me. We appreciate the dialog - even when heated.
Best,
KIM
Posted by: Managing Editor | August 24, 2008 at 10:14 AM
Your “screw you” attitude does not surprise me in the least. It makes me sad, but it does not surprise me. I did let a typo slip by. That’s because I was responding from my heart and not from the angry, defensive and anal part of me that you apparently chose to listen to in the middle of the night. I do teach spelling, and I love every minute of it. That’s because I am working directly with children who are pure and sweet. I am composing this response in Word, so I can run Spell Check, in case I overlook a mistake (which I readily admit I made). I’m more interested in getting my point across. You sound like a very involved mom who tries very hard. It is obvious that you love your children. I just want to hear/read a story written by a parent of a special needs child from the perspective of the typical sibling. Talk about interpreting your child’s feelings. Let’s hear your version of how it was for your 3 year old daughter to watch you run off the plane. Or how she handled suddenly being in Hawaii with dad until you and Jimmy got there. I can hear your angry response already. I just want to provide food for thought. I’m sure it feels like I am pointing a finger at you. I don’t mean it that way. I want the readers to think about the other side of things.
Posted by: Allison Ford | August 24, 2008 at 10:08 AM
"Again, I'm not suggesting that she didn't do a lot to prepare for this trip, I am suggesting that this trip was not the best idea. There are a number of tropical, exotic places to vacation that are a lot easier to get to than Hawaii. I'm sure that many of you will know what I mean when I say - go to Holland, even though you wanted Italy. My comments will probably come across as judgemental to those who choose to read them that way. I'm not judging. Just observing."
First of all, screw you. If I could use stronger words and get them printed here, I would. I'm not certain how you see two sides...one as a parent and one as a special educator...this is quite simply a story of the common struggles that families dealing with autism face on a daily basis. We have traveled with Jimmy at least twice a year without any issues for him. Jimmy has been to the airport in excess of a dozen times in his six years of life. Jimmy loves our family vacations. You have no idea what our history is...and you have no idea what Jimmy wants...only we do. High functioning autism is apparently very different from what we live. That being said, Jimmy's feelings are as typical and as valid as yours. Jimmy wants vacations more than anyone else in our family. The fact that he had a hard time bothered him the most...far more than it bothered any of us. It would be easy for us to change our vacation plans...make them closer...make them less typical. That is not what Jimmy wants. I don't need a tropical vacation. I need my son to be satisfied. Since the day Jimmy lost his language, my goal is to not only interpret Jimmy's feelings...but to accomodate his feelings when I can. I do not prioritize our outings by 'what would be easier for us'...rather, I would prefer to please Jimmy and meet his desires...as I know how frustrating his life is since he was injured. He comes first. Once again, I am stunned and disappointed by yet another special education professional. I think you should get to know your child better. Take that as a judgmental comment...it is. By the way, judgmental is spelled incorrectly in your post...hoping you don't teach spelling...once again, I'm judging.
Posted by: Barbie Hines | August 24, 2008 at 01:02 AM
I am a parent and a Special Educator, so I see both sides. My son has high-functioning autism. He sounds to be like Lisa's son. Several of my students are like Jimmy seems to be. I can tell you from experience that while bad situations do arise, the children with autism who do best are the ones who have parents who keep exposing their children to new, well chosen situations. Not randomly, not on a whim, and not dropped because of a bad time. New experiences should be chosen not for the convenience or preference of the rest of the family. I am sure that several people will read this and just get mad at me. I absolutely know that the families have to make allowances every day for the child with autism. However, if you want your whole family to have a good time and a great trip together, don't choose such a huge undertaking. A very long plane trip it probably going to be rough. Fly a short distance. Go to the airport for a "dry run". Show the child the seating area and the long hallway. It's not easy and it's not pretty, but it does work. I think that Barbie did a great job under the circumstances. Her sense of humor is a gift. I don't want to bum people out, I just see so much of people who, while they deserve a life like everyone else has, want things to go well without laying the proper groundwork. Again, I'm not suggesting that she didn't do a lot to prepare for this trip, I am suggesting that this trip was not the best idea. There are a number of tropical, exotic places to vacation that are a lot easier to get to than Hawaii. I'm sure that many of you will know what I mean when I say - go to Holland, even though you wanted Italy. My comments will probably come across as judgemental to those who choose to read them that way. I'm not judging. Just observing.
Posted by: Mom/SpEd teacher | August 23, 2008 at 11:03 AM
I love the blog story and can relate very well. Robin's feelings (below) are also shared by my family, I think we should have a "take your autistic child out in the public once a week," and let the general public see what their vaccine herd mentality has done to our children. The truth is slowly coming out and the American public is going to pay dearly financially and socially because of greedy selfish people. The same ones that tell us to keep our kids home - I DON"T THINK SO! ....
"There isn’t any polite way that I can express what I think about that idea so I’ll say it the only way I can. “Screw that. Screw that, and screw them.”
We have the larger society that has subjected these children to the crap in these vaccines, and the rationale was that society had to do whatever it took to protect SOCIETY, for the greater good. But now that it’s becoming obvious that so many children have been so horrifically harmed by the vaccines that SOCIETY insisted they receive (and no, I don’t believe that it’s a genetic ‘defect’. I believe that all people respond differently to their environment based upon their genetic makeup, but that to try to determine which particular genes make a person more susceptible to a KNOWN NEUROTOXIN is the height of asinine, stupid, and evil.) society has suddenly decided that they don’t want to deal with it.
Oh no. It’s too much to expect of society. A polite parent is expected to deal with this all on their own, alone, at home. Away from everyone else so that everyone else doesn’t have to be inconvenienced."
....very well stated Robin!!
Posted by: MAC | August 21, 2008 at 09:11 AM
I like these kinds of posts on Age of Autism. This is real and relatable, and it has generated an interesting discussion about how to deal with and expose our dark feelings as parents. However I wish there weren't so many posts about vaccines, some that don't even pertain to the autism discussion.
Posted by: Leila | August 18, 2008 at 07:11 PM
What an intense, well-written article; thanks for posting it. Barbie, my hat is off to you and your family. You've got guts and smarts.
My family just returned from a 3-day trip, during which every suggested activity was met with "No, I don't want to" from my ASD son, age 10. We managed the aquarium, arcade
and swimming pool, with him enjoying it all immensely.
Re: Lisa Jo Rudy, why must she miss the point and preach? I can't quite fathom the level of self-absorption necessary for someone to read a parent's heartfelt autism story but instead of sympathizing would use it as an excuse to patronize the editor. Sheesh.
Posted by: nhokkanen@comcast | August 17, 2008 at 09:44 PM
Wow, what a story. Our son just turned 18 and is severely affected. This past april we flew to Fla. Thankfully, other than many trips to the BR (we were able to pick our seats and sat in the very last row just for that reason)our flight went pretty well. He waited to get on just fine but kept trying to push me to get off when we landed. That was a little tense but we made it thru and had a nice vacation. Since then I've heard all the horror stories about people getting put off the plane, etc and I must admit, it has me thinking about whether I want to chance it again or not. But our family deserves a break too. We certainly aren't getting any younger - how long can we wait to live our lives??
I am curious and have a question for "samaxtics" who said she had a teenager who recovered, if I read her post correctly. How, what did you do, please, where can I find out some details??!! I just want my son to talk to me.........
Posted by: VHMC | August 17, 2008 at 09:22 PM
Thank you for sharing such a great story to which I am sure we can all relate. Well, except for Lisa Jo Rudy who seems to do nothing but troll around advertising herself. You really are pathetic Lisa Jo.
Posted by: Sami | August 17, 2008 at 09:33 AM
I need a drink after just reading that!
What can I say! Thanks for sharing. It's oddly comforting to read stories that make my own travling circus seem more normal.
I just returned from a trip from an amusment/water park, where I got the brilliant idea that I would be fine with my NT 3 y/o and my ASD 11 y/o --by myself. Now I had friends there with their kids, to be fair, but it's still not the same as having family along to help with your own kid.
Gavin had a seizure the first night, and some the next day. The 3 y/o hates water in his face, Gavin loves water rides (he can't swim). Gavin doesn't understand he was too big for some rides, etc.
And as usual I was cast as the Ring Master.
I need a vacation now that I am back from our vacation!!
Posted by: Jenny W | August 17, 2008 at 09:23 AM
Barbie, that was really one of the most unreal stories I have EVER read on AofA. Thank you ever so much for sharing it with us.
And Lisa Rudy - honestly - shame on you. Did your mother not teach you any friggin manners or what? Just read the story for what it is and get off your high horse already!
Posted by: Molly | August 17, 2008 at 01:19 AM
Barbie,
As I sat in our hbot chamber reading your post, tears were streaming down my face. I can commisserate with your experience as many of us can - we have been there too. Your sense of humor during this whole ordeal is truly inspiring. Telling the surfer dude to keep the change for condoms is something I would say. I just love it. Thank you for sharing your story!
Posted by: Michelle | August 16, 2008 at 09:12 PM
Barbie,
I live AoA every day. There are just a few times I've said to my wife Elise, "Honey, you've got to read this." This was one of those. As so many have said below, we've been there too! No one else understands that just getting to a vacation in Hawaii can be an heroic act, but in this case it was. Thanks for taking the time to bring this story to life. That's why we're all here.
Mark and Elise
Posted by: Mark and Elise Blaxill | August 16, 2008 at 08:33 PM
Barbie,
What an inspiration you are. I appreciate you sharing your story - I am so glad you and your family had a well deserved happy ending. Best of luck to you and your family and thanks for making us feel that we aren't alone! Surfer Dudes rule, Einsteins suck!
Posted by: Sterks | August 16, 2008 at 08:04 PM
Kim here - I'm stopping the comments about another person's life. Feel free to continue the dialog over at Alex's site.
Thank you.
Kim
Posted by: Managing Editor Ending PlanetTalk | August 16, 2008 at 02:33 PM
A tip for autistic parents, one which , in fact came in handy for me in another airline situation! I had read about a research in the field of psychology in which the researcher discovered that you could usually get people to do what you wanted if you employed the word "because". So there I was in the Seattle airport in a gigantic line- the worst I had ever seen, and along came a small philipino lady with 4 kids, the eldest about 9. Im not so great with babies, but nevertheless I ended up holding the tiny baby and standing there with the other 3 while she went to find a luggage cart. The eldest boy told me that they had to run away because of "the ash" of Mt. Pinatubo. Finally mom returned with the cart and we faced the challenge of her now being very late for her connecting flight to Florida. she needed to move up in the line, and thats when I recalled the "because" research. Im actually a bit shy, which I now attribute to 4-6 gammaglobulin injections (must have contained mercury), which I had as a young child, but I screwed up my courage told the grim faced people of that long line that "This lady needs to go ahead because...." And it worked!
Posted by: Cherrymam | August 16, 2008 at 02:16 PM
Barbie,
I LOVE your witty sense of humor!!! And to be able to keep it in such a stressful situation??? AWESOME!
I'm so happy your vacation turned out so well. We just got back from our trip to the beach, and I have to say, I think there is magic in the ocean.
Everyone here, we all have such unique experiences, but at the heart of it is the love we have for our affected children. You're story portrays that so well.
Before my son was diagnosed I hid in my house. Everyone I loved told me he was spoiled and babied, but I knew something just wasn't right. His sensory issues were really severe, but we had the unbelievable blessing of starting biomedical interventions when he was 2 1/2...and now I can do a lot of things I couldn't do with him before.
Thank you for sharing YOUR experience with Autism. I am thankful for your bravery.
Posted by: Meg Naughton | August 16, 2008 at 10:27 AM
Barbie,
I can relate to this story in so many ways. We have not actually had to leave an airplane but I certainly have been through the valium, bathroom isses and spent a flight being pinched and bitten. This summer for the first time we decided to forego our annual flight to the east coast beach house. Maybe next year we will try again....
thanks for posting ( I forwarded to my family so they know I am not the only one!)
Posted by: Cindy | August 16, 2008 at 08:28 AM
I waited to read Barbie’s post this morning while on the treadmill. Reading and exercising are one of the few things I can multitask at. What I can’t understand is why Lisa Rudy feels it necessary to explain to most every who reads AOA everyday that every child on the autism spectrum is different. As a father of a son with autism I can tell ya, I get it. Speaking for me AOA posts stories representing every side of autism. As I read stories like Barbie’s, (this is difficult to communicate through a blog) my guess is the autism parent delivers herself/himself some much needed “personal therapy” in addition to the reason his/her story was posted. On that note let me just say, real men are not afraid to cry.
Posted by: Kubatwork | August 16, 2008 at 07:18 AM
Thank you for sharing your adventure with us -- I can relate to much of it, though on a smaller, less intense scale. My son, Jacob, who will be 5 in September, is moderate to high functioning, but we still have issues similar to what you wrote about. We had that "fear of death" experience 2.5 years ago when we first really knew something was wrong. But what I can really relate to is that feeling of nobody else really ever "getting it." Sadly there are far too many "Einsteins" in this world and not enough "Surfer Dudes." Bravo on your ingenuity and determination!
Posted by: Matthew Gilbert | August 16, 2008 at 06:19 AM
Just a fantastic, relatable post. I'm so happy for your happy ending.
Posted by: Autismville | August 15, 2008 at 10:48 PM
Alex wrote:
"I don't think she'd characterize her autism as a "harsh reality." In fact, she mentioned multiple times that she's glad she's autistic, regardless of the troubles she faced on the plane."
Dear Alex, the day my son can tell ME that he's glad he has autism/NLD/SPD/CAPD/severe anxiety/bipolar tendencies, etc etc, will be the day that I consider my job done.
But until such time, and while just the potential for misplaced luggage while traveling triggers such severe anxiety that he looses his abiiity to speak except for hurling profanities and repetitively talking about *blowing things up*, I don't think I'll be hearing the words "mom, I'm glad that I have [fill in blanks]' coming out of his mouth anytime soon.
For those ADULTS that are high functioning enough that they can get through life in one piece and who can express why they are happy being *autistic* etc etc, all power to them. And I wish them a long and happy and fulfilled life.
But do not DARE to use examples like that to tell me that my son (or several other affected kids that I've gotten to know quite well) is happy *being XYZ, or dealing with XYZ'. Or that his reality, during one of the cycles that he goes into a deep dark place where I can barely reach him, is NOT a harsh one. He is only 10 years old. And he's dealt (and is dealing) with enough sh#t (sometimes literally) to last SEVERAL life times. And there is NOTHING that's *okay* about that.
And let's not forget the stuff that my little 5 year old boy gets exposed to during one of his big brother's dark cycles. And there is NOTHING that's *okay* about that either...
Posted by: Petra | August 15, 2008 at 08:58 PM
Thank you Barbie for sharing this story. As Heidi and many others have stated, Lisa Jo and other parents who want to minimize what our children and our families go through daily have no right to tell us how to FEEL. It often feels like the twilight zone but thank goodness that it is 2008 and we are leaps and bounds ahead of where we were just 2-3 years ago in our understanding of how autism can affect the "whole body".
I also have a nonverbal teen. Her autism is the kind where she may have pain, in her head (brain, Lisa Jo), bones, muscles, and gut. Your statement--
"But his autism doesn't stop him, for example, from boarding a plane; going on a whale watch; enjoying the art museum; or eating at a restaurant. His autism hasn't destroyed his life or ours - though it has changed all of our lives enormously."
Great for you but why is it that you have this pattern of doing an infomercial on the *okayness* of autism? In doing so, do you realize that you are attempting to deny others and their very real children who have very real pain and a very diminished quality of life an opportunity to be heard and the reality of this autism epidemic to be understood? Or is that your purpose here?
Teresa Conrick
Posted by: Teresa | August 15, 2008 at 08:01 PM
Barbie: Thank you so much for this. It made me cry. I have scratch marks all over my neck and chin and cheek that are now scabbed over from my 3 1/2 year old and our flying adventure this past weekend. It was only a quick trip from DC to Chicago, and he was fine for the first 1/2 hour or 45 minutes or so. And then he just got totally freaked out. "Mom, let's GO!" He wanted off that plane so badly but obviously we couldn't get off. He screamed. He yelled. He cried. He kicked the seat in front of him. I held him on my lap and tried to calm him down. People looked at me. Stewardesses told me to put him in his own seat. When I smiled and said he was fine on my lap, one of them said (so that I could hear), "Okay, fine if she doesn't care about his safety..." I looked out the window and cried. My son hugged my arm and kissed me then hit me. Then hugged me that grabbed at my cheek and drew blood. He was terrified and needed to take it out on me. That's okay. I'm glad I can be there to get him through, even though I now look like my husband beats me and co-workers pretend not to notice my wounds.
My sweet boy is not a good traveler, I have come to learn, and I'm not sure what to do from here and with future family vacations we want to take. The liquid valium sounds like an option.
Oh, by the way, my son does not have autism, or so everybody tells me - "just" SPD (Sensory Processing Disorder). But after this weekend I am not so sure and am going to seek out a GOOD evaluation for him - not the 20 minutes I got with the developmental pediatrician last year while my son screamed and she said he's not autistic because he looked at her once.
(sigh)
Thank you for this post. You are braver than me, and you are awesome.
Tori
http://lend4health.blogspot.com
Posted by: Tori | August 15, 2008 at 07:39 PM
Hands down the one thing I absolutely love about our community is our ability to find humor in just about every situation!
Barbie: Hot Guy and Surfer Dude -- I was rolling.
Petra: "May we all cross paths with Surfer Dudes now and again..." or Pool Boys. Either will do in my book.
Randy: "The Underwater Car" and "You're the Man" videos -- two of the best. Oh and by the way, I recognize the I'll-drive-5,000-miles-just-to-avoid-holding-a-purse story.
Bottom Line: All of you Rock. Laughter is the best medicine and in my book, AoA is the best place to find it.
Posted by: Kelli Ann Davis | August 15, 2008 at 07:11 PM
Lisa: You clearly are not a member of this club. The stories most of us can tell are all like the one that Barb has written above. I can tell you the one about the 12 year old autistic boy who was trapped in the old style trunk in the 90 degree attic for an hour till his mom finally found him, the father chased across the street by his adult son with autism who proceeded to bite the father's finger tip off, the 5 year old with autism missing for an hour while the parents searched the unfamiliar area where they were visiting and prayed that the child was not near the train tracks nearby while they heard the train whistles passing, the 7 year old boy with autism running out of the house thru a kicked out window screen (the door was bolted shut) down the road and into the nearby lake without knowing how to swim and the mom running after him (thru the same window in order not to waste time unlocking the door)in her underwear and trying to bring the kid back to shore, the 14 year old who tantrummed wildly in the kitchen and broke out the oven glass with his bare feet, the 15 year old who grabbed his mom so violently from the back seat of the car she swerved off the road and barely missed a tree, the list goes on and on. Unfortunately there are more kids with this kind of autism than the kind you are used to. I salute Barb and all the other parents who live this surrealistic Autism life everyday!
Posted by: Heidi | August 15, 2008 at 07:10 PM
"Just a mention that, while autism is difficult for everyone, it is not a monolithic disorder."
Those few people who have children affected by Autism and do not have horror stories to tell must be few and far between. I have never met such a family.
I would call being unable to make friends a monolithic problem, Academic Failure also a monolithic problem, never being able to take care of himself, a monolothic problem, not only for our son but for our older 2 children who will be charged with their brothers care when my husband and I are gone. Like it or not we are in this boat together. We need to listen and have understanding for all families no matter how they are affected by this epidemic.
Bless the lucky few who are only slightly affected.
Posted by: K Fuller Yuba City | August 15, 2008 at 05:14 PM
I drove - 5600 km round trip - more than once - to get my son to a clinic where I figured he could get the best shot at some real help. Not super dad - actually a chicken sh$t in a way - (certainly not as tough as Barbie) - 'cause getting my son on a plane (especially the commuter planes) I'd have to drug him to near death (not knocking the parents who sedate their kids - you gotta do what you gotta do). And driving to Hawaii I suppose you'd need one of these
http://www.youtube.com/watch?v=SR2sb1wchXQ
He loves the drive no matter how long and therefore I also love the drive :-). Kinda crazy but what isn't these days...?
Posted by: Randy | August 15, 2008 at 04:56 PM
Thanks for sharing your story Barbie. My family rarely flies, with 3 kids, one PDD-NOS/ADHD, one ADD/IBS and one NT. The last time we flew, going to AZ was smooth sailing, but coming home was a nightmare.
It took 9 hours longer than planned. Our airport closed due to weather and we were bused to another airport (getting lost along the way). Then with all the kids and luggage (now soaking wet), we ended up at the end of the line to recheck it. After waiting for 1 1/2 hours in line, the airport employees started yelling at the remaining of us in line that we needed to hurry up because our plane was leaving in 15 minutes with or without us. Thank God other passengers let us cut in front of them in that line and cut in front of the in security, we ran with all the kids, bags (I thought I was going to fall over because I don’t run) and barely made in on the plane in time, many passengers were clapping when we got on. My son with ASD did well enough even without his supplements, but my son with ADD/IBS, needed extra Xanax (flying is the only time he uses it). I also found the airline employees are very rude and other passengers kind and helpful, especially if you ask.
Glad your vaycay was good!!
Posted by: Heather O | August 15, 2008 at 04:24 PM
One of the best things I've ever read to give people a feel for our lives. Barbie, keep on fighting.
JB
Posted by: JB Handley | August 15, 2008 at 03:58 PM
We just had our FIRST ever, typical-kid-initiated playdate at our house this morning for my 8 year old son. Mom came, too, we had never met, and she was a sweetie, just like her daughter who loves my son to death. But Mom told the story of her latest summer trip with her 3 children (9, 7 and 3, all typical) and how she cried on the airplane from the stress. How ironic. She would never understand who she was talking to and what I read about this morning (this story from Barbie), and that I have never even put my child on a plane because it would be a complete nightmare. What different lives we lead. The others will never understand our lives. I want to hate them, but I know if it hadn't happened to me, I'd be just like them. Blissfully unaware and resistant to learning, crying from the stress of what I would THINK was a rough life. (In my own defense, I was always the first in line to volunteer for a charity, but that's different.) Thank you Barbie for sharing this. I cried my eyes out from the thoughts of all we have all lost. All I know is that if it doesn't end soon, I might crack. My heart breaks constantly for those who will fall into our abyss today.
Posted by: kim | August 15, 2008 at 02:35 PM
Craig:
Thanks for understanding, thanks for what you wrote.
Yes indeed, autism (or whatever you want to call it) is NOT cuddly. Especially not in an, always rather volatile but now very hormonal, 10 year old boy who has packed on almost 30 pounds in 10 or so months, has grown a full inch, and is now developing muscles in his upper body that would do Arnold Schwarzennegger proud with the football tackle to match. Up until now I've been able to *constrain* him when he goes into a rage, but that won't be the case much longer. If he keeps growing the way he has been, he'll be flattening me in another two or three months. Literally.
Knowing this, and knowing that unless I get his raging back under control, I may have to look into medication after all, doesn't mean I love the person I know he is any less (but I'll be honest, I ain't lovin' the raging Mr. Hyde behaviors). Nor does it mean that I will ever give up on him, on trying to help him be the best he can be, and, yes, on taking him out of the house as much as I can to *socialize* him and teach him what is and is not socially acceptable behavior until my very last breath.
Is it easy? Nope. Is it fun? Nope. Do the looks and comments hurt? Hell, yes.
But the world needs to see what is happening to our kids (regardless of what each of us believe contributed to our kids' challenges). And the world needs to understand that, in addition to the cute and cuddly autism, there is the not-so-cute-and-cuddly variant as well...
(and if that offends the sensibilities of a few parents with *cute and cuddly* affected kids, so be it..)
Posted by: Petra | August 15, 2008 at 02:26 PM
Barbie, thank-you for writing the truth. My 6 year old is also autistic. I feel I can truely say "I know how you feel." We have had the week from hell. And no we were not on a vacation we were just at home. And to Lisa, I say bless your heart. And yes I'm from the south. I just wish my autism experiences could be more like yours.
Posted by: Lisa | August 15, 2008 at 02:26 PM
Barbie, Twyla, Karen and Petra summed it up well, I think. Too often, we see these kids on the news and in movies like Autism: The Musical (which was a great movie, but not indicative of the majority of autistic kids), and we get people who are thinking to themselves "Oh, it doesn't seem that bad. Why are they complaining?" I don't mean to sound harsh, but Autism isn't cute; Autism isn't cuddly, and as Petra so eloquently put it, Autism isn't always vanilla flavored.
No, they need to see the whole picture. They need to see what happens when one of our kids has a meltdown in public. They need to hear the high pitched, ear-piercing shrieks. They need to smell it when one of our kids pulls down his pants in public before we can stop him and wipes his feces on the walls. They need to see this so they know what to look for when one of their kids starts doing the same, or when they wonder why there are no more neurotypical kids in a few years. They need to know this and wonder how it happened.
My autistic son is no where near sugar-coated or vanilla flavored. People NEED to understand that.
Posted by: Craig Willoughby | August 15, 2008 at 01:32 PM
Ditto to the posts about crying, emotions pent up, big brass ones, the fraternity we are in, puking near ailine personnel (for us it was on the 5 hour flight), some days are bad but the good days are good...Barbie, this was a great story. I don't know if I would be able to go back a few days later to fly again--you are wonderful!
Best of everything Cathy Jameson
Posted by: Cathy Jameson | August 15, 2008 at 01:28 PM
Everytime I enter an airport now, with family or alone, I suffer from PTSD (posttraumatic stress disorder which I don't need to spell out for autism parents, but I just did). We lost my oldest son in a Hong Kong airport for 15 minutes, we spent a trip from Singapore to Bali in screaming misery, we spent an hour of living hell in a long security line in Houston (why wouldn't someone tell us to go to the front of the line? why didn't I ask?), I've had my son removed, sleeping from a stroller to go through security and be pulled aside and "wanded", and the worst was he and I alone for what seemed to me the worst tantrumming episode in airport history in front of hundreds of passengers and a gate agent who did NOT want to let us on the plane. I explained that was why "we" were having the tantrum, he wanted to get on the plane. The person sitting next to me said he dreaded being beside us after seeing my son, but he had said a prayer for me. My son was perfect on that flight, because he just wanted on that plane.
It has, for the time being, gotten much better and much easier, but it's hard to say what the future holds with puberty, etc. which happens whether we want it or not.
Thanks for sharing your story.
One more thing, this confirms what I believe, that we have more hope with our young adults like surfer dude being inclusive and understanding, than for constipated old ladies who think we just don't spank often enough.
Posted by: Leslie Phillips | August 15, 2008 at 12:57 PM
Barbie, I can so realte to your story. People have NO IDEA the stress, the heroics, the strength of parents with disabled children. My own son was very traumatized recently on a flight. He was actually having a panic attack during the landing. He upset himself so much that he passed out. I was by myself and handed my ten month old over to a stranger sitting next to me so I could take care of my three year old. There it is; no more traveling for a while. There is such a lack of freedom when you have a child on the spectrum. Everything must be thought out in advance. Right now, there are no vacations for our family. Like Tanner's dad said, we are a fraternity. We know there are good days and bad days. Thanks for sharing. You are not alone. Some days, autism sucks.
Posted by: Nicole Raimann | August 15, 2008 at 12:42 PM
Barbie-
Thanks for sharing this. I can relate to what you have written here. Wishing for a drink, having a drink (or more), and drugging my kid- so he would be stoned enough to tolerate an intolerable experience for him.
I have one of those severe kids and I certainly don't need anyone telling me how much better they and their kid have it then me and my kid. We get it...it's obvious to all of us- some kids aren't this high maintenance....
You're awesome Barbie. Please continue to share your stories and experiences.
And glad the kids had a blast in Hawaii and the trip home was uneventful.
Posted by: Andrea | August 15, 2008 at 12:31 PM
Awesome post. I'm sorry for your trauma and yes, I've never been through exactly the same thing, but I'm sure I have some doozies too. But thanks for sharing - your sense of humor serves you well. I would perish without mine. My son is also a great traveler - never a problem. So if he reacted like this before take off....oh my. Talk about unprepared. I'm glad you have a happy ending to that story and enjoyed vacation.
Posted by: Cathy R. | August 15, 2008 at 12:29 PM
Lisa:
I am truly thrilled to hear that things in your home do not reach this level...I do not wish this level of anguish on anyone. I do not feel autism has destroyed my life. Autism has certainly changed my family's life. It is definitely beyond 'not what I signed up for'. I am intensely aware that my son, daughter and husband are the best things that have ever happened to me. Perhaps not the easiest, but definitely the best. I do believe that autism COULD destroy my son's life, if I do not find a way 'out of this' before my passing, and I believe that is the case for most...regardless of the level of severity. This piece was taken from my journal...my therapeutic dumping ground. I do not expect everyone to feel comfortable sharing their dark thoughts and experiences from their journals. I do suspect that if everyone dealing with autism did share, EVERYONE, regardless of severity, would have at least a few truly dark stories to share.
Posted by: Barbie Hines | August 15, 2008 at 12:12 PM
And before I forget, many blessings to Surfer Dude. I hope he got lucky (again? after the cocktail Barbie bought him.. LOL) in Maui.
May we all cross paths with Surfer Dudes now and again...
Posted by: Petra | August 15, 2008 at 12:10 PM
While conveniently linking to HER site... not YOUR site.
Posted by: Oh Give Me A Break! | August 15, 2008 at 11:59 AM
Lisa Rudy is fishing for hits to her site. The more you visit, the better off she is (remember, the more hits she gets, the more money she makes). What better way for her to boost her traffic then by coming over to AoA every month or so and stirring up something, while conveniently linking to your site?
Sorry to sound so paranoid, but how many times are we going to let people like Lisa Rudy, Orac (AKA Dr. David Gorski), AutismNewsBeat, HeraldBlog, and ANB (the latter 3 AKA Ken Reibel), waste our precious time and energy?
I say, ignore them... maybe we'll get lucky and they'll go away.
Posted by: Oh Give Me A Break! | August 15, 2008 at 11:42 AM
Wow! Good for you for keeping your sense of humor through this. Without a sense of humor (and an occasional drink!) I don't think I could get through this. You are an amazing mom and have an amazing family!
Posted by: KB | August 15, 2008 at 11:32 AM
What a wonderful, wonderful story. Thank you so much for sharing it.
Lisa Rudy, I don't understand the point of your comment. Nobody suggested that autism is monolithic. This story tells about one person's experience. Many of us relate to it. None of us claimed that this is everyone's experience, or that all people with autism behave the same way.
Kim S. said, "In an autism household, everything is not fine." You said, "When I say everything is 'all right' at our house, I don't mean 'Tom is no longer autistic.' No, he doesn't make friends - at all. No, he can't manage a typical classroom (he's homeschooled)." If your son cannot make friends or go to school, it doesn't sound like everything is fine at your house either. I am sure there is much that is wonderful, but I don't think you can say that everything is o.k.
Nobody claimed that this story is representative of everyone's experience. Why you would respond the way you did is mystifying, and seems defensive.
Posted by: Twyla | August 15, 2008 at 11:30 AM
It is so amazing that after all you went through trying to fly out the first time you had the strength to get on that plane again!
So many memories are brought back to the front of my heart from when our son was younger. We would hold him tight at games so that our older 2 could play baseball and basketball like normal kids. I could feel my arms ache with your description of holding him on that plane.
Know that it does get better, our son is 15 now and with a million hours of intervention we have very few meltdowns now.Keep up the good work because our kids are worth it.
Posted by: K Fuller Yuba City | August 15, 2008 at 11:20 AM
Lisa Rudy,
It does come across as a little defensive that you should feel compelled to point out that not everyone has the same experience; especially in light of this being an autism blog where the majority if not all people here have daily exposure to autism. If you could get beyond the defensiveness you might see that this story is more than just about a meltdown; to me it is also about the journey (physically and spiritually) of a family, the kindness of strangers, and quite frankly the stupid airline policy that puts (once again) people with money before people with needs.
Anyhow,
We recently flew to Toronto from our home in western Canada. When I called WestJet to make the reservations I told them that my 11 year old son has autism. I told them that he has flown many times before with no problems but just in case he did have a problem, I wanted to give them advance warning. She was very understanding and asked me if there was anything they could do to help make it a more positive experience. Now I would have asked to be able to board first so he could get organized but in Canada there is pre-boarding for families with small children, anyone who needs extra time AND first class passengers.
Thank you Barbie for sharing your story.
Posted by: samaxtics | August 15, 2008 at 11:10 AM
Lisa Rudy:
Our family has lived both sides of the Autism street.
Our son was a severe non-verbal runner with massive sensory issues. It was no blessing.
Life was HARD! Every trip out was a fiasco.
I had days were as they say in the South
"I'd like to have died."
Going to the grocery story required carbo loading.
I remember once having the (stupid) idea to take him along on my daughter's field trip to Brave's stadium. We spent the entire time chasing him up and down 5000 stairs.
Every trip out was a panic as he would run, climb out of carts, strollers and dart into traffic unaware of danger.
Barbie is a hero for trying.
Autism isn't pretty sometimes.
Deal with it. Sometimes I think we should all have a Rosa Park's style "dine out".
This is your unchecked vaccine schedule at work people!
Most parents I know with difficult sensory issues sequester themselves at home.
For 5 years during our son's breathtaking recovery I categorically refused to isolate.
Today we go places with ease and a few modifications. Now Autism doesn't hold us back now from anything.
If that is where you are,
thank God in heaven you *can't* relate to the plane story Lisa.
You are one of the lucky few.
Posted by: KarenAtlanta | August 15, 2008 at 11:09 AM
So fine, "afraid" was a poor choice of words. It's been a very trying 3 to 4 weeks out here and I am tired.
Let me try again. Why this need whenever once of us posts about our *vomit flavored, where's the Jack Daniel's, it's a miracle I'm not a full fledged alcoholic yet* experience of autism, to immediately counter with *but autism is really vanilla flavored*.
Yes, some days autism is vanilla flavored, maybe even *rocky road* (or whatever favorite flavor you may have). TG my son is now to a point that we have many many many vanilla flavored days. But then there are days (right now weeks) that are decidedly *vomit flavored, where's the Jack Daniel's, it's a miracle I'm not a full fledged alcoholic yet" times. And when we write about those days/weeks/months, those experiences should be allowed to stand on their own, without others feeling to need to coat our experiences in vanilla sauce. Trust me, most of us in 'vomit flavor' land get the 'let's smother things in vanilla' enough from our (well meaning?) environment.
Right now, my affected son's life sucks, his little brother's life sucks, and because of that my life ain't too grand. And I really don't care whether the reason(s) are his ASD, bipolar, anxieties, sensory overload, hormonal moodswings as we are entering an early puberty, the full moon, high tide, whatever.
I know it'll pass again, it always does. It's possible that a few hours from now we're back in vanilla land. But right now I am knee deep in vomit flavor, and I see absolutely no reason to sugar coat it.
(and for the record, yes, my son is considered very high functioning. And on vanilla days I am very grateful for that. But on vomit days I think that even *high functioning* is a curse, not a blessing).
Posted by: Petra | August 15, 2008 at 11:07 AM
Barbie, you are an amazing mom. Thank you for sharing your story. Beautifully written, it had me crying and laughing. May all the blessings and light of the universe shine on your family.
Posted by: Beth | August 15, 2008 at 10:56 AM
AWESOME MOM! JUST AWESOME.
Kudos to the pilot and stewards who didn't throw you off the plane.
Thanking God there are surfer dudes out there making the world a better place.
Posted by: Karenatlanta | August 15, 2008 at 10:43 AM
Barbie, your story made me laugh and made me cry. I would not have had the courage to get back on that plane again. Jimmy is a lucky little boy to have you as his mom!!! You rock!
Posted by: Suzanne | August 15, 2008 at 10:16 AM
OMG... you just had me crying like a baby and then laughing out loud about the condoms comment. Good one :)
While not quite as dramatic as your story... I've had that same feeling of helplessness with my daughter who was diagnosed with type 1 diabetes (at 11 months - thanks no doubt to our overzealous vaccine policies). It was just recently - my daughter is 8. We were enjoying our day at the Children's museum (me and my 3 kids) when my daughter gets that "pale, I'm going to die look" ... "Mom, I feel low". "Oh crap"... I look in my bag ... I had forgotten to transfer her juice boxes and glucose tabs (quick sources of sugar) to treat a low blood sugar into my backpack. This is enough to send a mom of a child with type 1 diabetes into a serious full blown panic attack. We start walking/running to the food pavilion area. My daughter keeps stumbling along ... (not a good sign... once the legs stop working you know you are moments away from a full-blown seizure). I pick her up ... So now, I'm walking/running through the museum with my 8 year old in my arms and literally dragging my 4 1/2 year old by the hand (he wanted to be picked up too). My 6 year old decides he needs to stop to look at the big dinosaur kit display at the gift shop. I notice he's not keeping up with us and yell at him to "Get your ass over here now and keep up... your sister is very low" (Yes, I did say 'ass' in front of my kids and some other museum patrons, get over it).
Eventually, I spied some orange juice and essentially cut the line and starting dumping it down my daughters throat. About 20 minutes, my daughter has recovered but I hadn't... That night I started sobbing to my husband... "What if I wasn't there?" (He reminds me that if he was there he wouldn't have forgotten her sugar source to begin with...jerk). "Well, what if she was on a field trip and the nurse wasn't by her side?"... "Well, what if she was an adult and passed out like that alone"? "Well, what if.... etc, etc...".
So many sick kids...
Posted by: Sue M. | August 15, 2008 at 10:12 AM
"Why are you and others with similar 'well, not all kids with autism are like that' so afraid to have us put our *not so fun, sometimes dealing with my child's autism/bipolar/overwhelming anxieties/SPD/CAPD/OCD/aggression etc just plain old sucks* stories out there? "
My post was not about fear of hearing your story or Barbie's - not sure why you would associate fear with my post. It was simply to note that there are a range of people out there with autism, and that we have a range of experiences.
I'm certainly not interested in censoring anyone - merely in providing a broader perspective.
Lisa
www.autism.about.com
Posted by: Lisa Rudy | August 15, 2008 at 10:09 AM
Lisa Rudy wrote:
"Kim writes: "So often parents of children with autism (and other disabilities) paste on a brave face and tell the world, "Everything is fine." Guess what? In an autism household, everything is not fine."
Just a mention that, while autism is difficult for everyone, it is not a monolithic disorder. While Barbie's experience is heartrending - as are many stories of living with autism - it isn't representative of all children (or adults) on the spectrum.
Many kids on the spectrum have all the social and communication issues listed in the diagnostic criteria - but do not have the overwhelming anxieties and/or sensory issues that Barbie's son has."
Lisa, do you *get* what Kim and Barbie were trying to communicate? While you may feel that Barbie's story is not representative of all children (and adults) on the spectrum and while you may feel that we all should be saying *everything is fine*, Barbie's reality is/has been on many occasions MY reality. And the reality of many of my friends with kids on the spectrum.
Why are you and others with similar 'well, not all kids with autism are like that' so afraid to have us put our *not so fun, sometimes dealing with my child's autism/bipolar/overwhelming anxieties/SPD/CAPD/OCD/aggression etc just plain old sucks* stories out there?
Posted by: Petra | August 15, 2008 at 09:36 AM
Barbie: Your story made me cry (a lot) and made me laugh (out loud sitting in my office -- I loved the part about providing alcohol to a minor, Dude!) You are obviously an amazing mom and both your kids are so fortunate to have you! I am so glad that once you made it to Hawaii the trip was great and it sounds like a huge success. The kindness and understanding shown by many of your fellow passengers' during a difficult situation was so refreshing. Too often, people are not understanding -- and obviously you encountered many of those too -- which just makes everything more difficult for everyone...Thank you so much for sharing your story so honestly with all of us.
Posted by: Kim | August 15, 2008 at 09:26 AM
What an intensely stressful vacation that was for you and everyone else in your family, but especially for you and your son. You are one fabulously tough woman, and it takes nothing less to deal with autism. I remember the times that made me cry quite vividly - like my kids and I getting kicked out of the public library for story time because my children wanted to walk around the room, rather than sit, and were too much of a distraction for the librarian, and when the kids, my husband and I were "clapped" and "yayed" and "good riddanced" out of a bagel restaurant when we left with our misbehaving and crying children. Apparently you can never leave an establishment or public place fast enough for the "typical." These experiences either help you see the beauty in others (if they are understanding and helpful) or their extreme ugliness (when they show no compassion or kindness, but nastiness). May there be more Surfer Dudes and Hot Guys in your life going forward. Bless you, Barbie.
Posted by: Gayle | August 15, 2008 at 09:19 AM
Kim writes: "So often parents of children with autism (and other disabilities) paste on a brave face and tell the world, "Everything is fine." Guess what? In an autism household, everything is not fine."
Just a mention that, while autism is difficult for everyone, it is not a monolithic disorder. While Barbie's experience is heartrending - as are many stories of living with autism - it isn't representative of all children (or adults) on the spectrum.
Many kids on the spectrum have all the social and communication issues listed in the diagnostic criteria - but do not have the overwhelming anxieties and/or sensory issues that Barbie's son has.
When I say everything is "all right" at our house, I don't mean "Tom is no longer autistic." No, he doesn't make friends - at all. No, he can't manage a typical classroom (he's homeschooled). But his autism doesn't stop him, for example, from boarding a plane; going on a whale watch; enjoying the art museum; or eating at a restaurant. His autism hasn't destroyed his life or ours - though it has changed all of our lives enormously.
Lisa
Posted by: Lisa Rudy | August 15, 2008 at 09:08 AM
I was sobbing reading your story. Congratulations on the successful outcome. It's such a difficult journey that we lead, with our autistic kids. You are doing an amazing job. Some days I think I can not go on, dealing with the difficulties with my daughter, but every day I get up and take on the challenge.
Posted by: anonymous | August 15, 2008 at 08:57 AM
Airlines. Arrrgh! I’m glad that your fellow passengers weren’t as clueless as the airline personnel.
I remember the first and last time I flew with my children. We’d been waiting in line at the airport for about the third time that morning. It was another LONG line. We’d been there for almost an hour and there was a line behind us stretching off into the distance and we were almost through the line, when my youngest son looked up at me and said “I think I’m going to throw up.” I found an airline employee nearby and went and told her the situation. Because if we’d left the line, there was a good chance we would’ve missed our flight. I don’t know what I expected from her—a plastic bag maybe?—but all that happened was her jaw dropped, and she just stood there looking down at me and at him and shaking her head, and then she finally said to me “no….”. That was all. And I stood there looking at her for a moment or two, wondering what I was supposed to say next and I think I finally said “um… YES”. And right after that was when he threw up all over the floor.
Served em right. The airline personnel, not the people behind us in line.
So many people have suggested that these children who are so disruptive should be kept home, out of the way of the public. That it’s unfair to burden the general public with having to deal with them. I’ve often wondered if parents of children with severe autism have felt disinclined to take their children out in public. (And if this is so, I SO wish you would stop that—would stop feeling that way. I know that it must be difficult to be out and about with the WHOLE family but please, don’t let just the reactions of those who don’t have to deal with it every single day influence what you do or don’t do). But now people seem to be hearing it expressed openly, and so often. Maybe not so much by the actual public as by the media. “Keep those kids at home or at least out of our way. It’s not right to bother everyone with all of that.”
There isn’t any polite way that I can express what I think about that idea so I’ll say it the only way I can. “Screw that. Screw that, and screw them.”
We have the larger society that has subjected these children to the crap in these vaccines, and the rationale was that society had to do whatever it took to protect SOCIETY, for the greater good. But now that it’s becoming obvious that so many children have been so horrifically harmed by the vaccines that SOCIETY insisted they receive (and no, I don’t believe that it’s a genetic ‘defect’. I believe that all people respond differently to their environment based upon their genetic makeup, but that to try to determine which particular genes make a person more susceptible to a KNOWN NEUROTOXIN is the height of asinine, stupid, and evil.) society has suddenly decided that they don’t want to deal with it.
Oh no. It’s too much to expect of society. A polite parent is expected to deal with this all on their own, alone, at home. Away from everyone else so that everyone else doesn’t have to be inconvenienced.
Well screw that. The whole notion makes me want to puke.
Posted by: Robin Nemeth | August 15, 2008 at 08:14 AM
OMG, OMG, OMG. I am crying so hard I can barely see...
Barbie, dearest sister *in the hood*, you have a big set of brass ones!!!!
And while there will undoubtedly be people who feel you portray *autism* in a negative light, I for one am standing up and applauding you for writing what you did. What you experienced is *autism* too, and this version goes far beyond the *it's just another way of being*. And it's a side that needs to be shown too.
And the most amazing part of this story? That while you were going through all of this it is do d#mn clear that you love Jimmy to pieces and that you'll continue to travel to the bowels of hell and back for as long as it takes and as many times as it takes to give Jimmy a shot at a decent life. And that too takes a set of big brass ones.
Keep the faith, my dear, keep the faith. And thanks for giving me the courage to keep writing honestly about what can be going on in MY house; the good, the not-so-good and the downright (f)ugly.
[I linked to your story from my blog, and will probaby email the link to a few people who are convinced that, when a situation like you described happens over here, I am *imaging things*]
Posted by: Petra | August 15, 2008 at 08:13 AM
We have a weird Fraternity. We are all truely bonded body, mind, heart, and soul. Meltdown, tantrums, poop stories, laughter, tears, and love. The purple heart goes out to all the mothers. I am doing all I can as a father but you are right sometimes we just sit there and struggle because we men just do not know how to fix things. It seems that many days go by and I take steps backwards instead of forwards. Thank you Brabie for such an honest and visual picture of your (our) lives. How society, gov, Pharma, medicine, church, insurance, education, and Talk show hosts can be so mean to us... instead of help is beyone comprehension.
Posted by: Tanners Dad | August 15, 2008 at 07:59 AM
Barbie,
I felt like I was with you on that journey. I cried for you. Autism does take so much from so many. People can be so ignorant and some so kind. You found it all on that plane. And to think autism could have been prevented in many of the cases ... that's what I think when my son is out of control.
Posted by: Kathy | August 15, 2008 at 07:21 AM
Well, I think just released every pent-up emotion I've been stuffing for the past few weeks. Nothing like an early morning cry.
Posted by: Jeanne | August 15, 2008 at 07:15 AM