Friday, August 15, 2008

An Autism Mom named Barbie Hines wrote this piece for us at Age of Autism. It's a laser insight into what it's like for families with a child on the autism spectrum. It's not pretty. It's not a fairy tale. It's not sweetness and light. It's reality.

Click HERE
to leave a comment for her over at Age of Autism. We have some powerful pieces up today.

VolcanoManaging 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.


Amanda said...

Isn't that just typical? Even when we try to give a no holds barred brutal honest truth account we still have humour and a bright side tone. She tried to conceal it but it just broke through. great piece.

Petra said...

I noticed that too.

Three words to explain that: "Love. Fierce Love"

Anonymous said...

it's real. it's honest. it's what we live and who we are. who we have to be. thanks for sharing, kim.

Anonymous said...

I'm sorry: has this kid been on a plane before? If not, what made her think it might be anything other than the scenario she described? The one thing I have NOT attempted with my autistic daughter, who is 9, is plane travel, for the simple reason that THERE IS NO EXIT STRATEGY. And Chicago to Hawaii is a long-ass flight! It sounds to me, frankly, like all went pretty well. Most folks on the plane were totally cool. I have had my kid urinate on me and strip in public plenty of times and, while never pleasant, I weathered it even without the reward at the end of a Hawaiian vacation. I don't know, this story didn't elicit the same sympathy from me as it did you. I think lots of us have had experiences like this, where something goes terribly awry, then we marshal our resources, and it works out, and all is not lost. True, it's never as easy for us as it is for our "typical" peers. But she got her meds, she could afford new tickets, she got herself to the Island--I'm not crying a river over this. Did very much appreciate her humor.

Anonymous said...

This story sounds like our lives. So sorry to see it happens to others just as much.
Lives of an autistic family.
Barbie is a strong mother and woman.
God be with her.

Anonymous said...

This story sounds like our lives. So sorry to see it happens to others just as much.
Lives of an autistic family.
Barbie is a strong mother and woman.
God be with her.

Amanda said...

In a cock-eyed way, anon, glad you can empathize with this family. It's not so much the exact scenario that got me but the fact she wrote it down for all to read. I have two severely autistic daughters (who have flown, once long haul but that was before we had a diagnosis so they were only wee, and since but only short haul) and I see this happening to us in all sorts of areas - actually the account made me giggle in parts!

Sustenance Scout said...

The fact she wrote this piece is indeed commendable; it would be great to see it published widely. Thanks Kim! K.

Anonymous said...

My name is Paul Harris and i would like to show you my personal experience with Valium.

I am 55 years old. Have been on Valium for 20 days now. I decided to get off of all benzos after much reading and having a friend who was abusing Xanax kill himself (may have been other issues, too). I was taking about 4 mg of Klonopin daily. I read a lot of the reseach on benzos by Dr. Heather Ashton, one of the world's leading authorities on benzos. I was shocked to see her equivalency table for Klonopin and Xanax. 1 mg of Klonopin or Xanax is equel to 20 mg of Valium. That's right, 20!! Plus, Klonopin and Xanax have nasty side effects. That did it for me. No more benzos!! Because Valium has the longest half-life of any benzo and the least side effects, I'm using it and water-titration to get off Klonopin, a method widly used in Europe. 10% reduction every 10-14 days. So far so good.

I have experienced some of these side effects -
Headache, drowsiness in the morning. Hard time getting my Dr. to prescribe and go along with treatment program. Valium supposedly is far less addicting than some other benzos, with far fewer side effects. I hope that turns-out to be true.

I hope this information will be useful to others,
Paul Harris