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Monday, March 31
Help with Autism!
by
Nancy Clayburn
on Mon 31 Mar 2008 09:45 AM CDT
It's now Friday morning. I still hear the wind howling through the white pines out our window. It sounds cold. Are we ready for what lies ahead? The great unknown! Not ever explored by the Clayburn Family! After lazily taking our time getting up and around as we thought the others were still sleeping, we finally made our debut only to find out all the others had been up and ate breakfast already!
Breakfast was quite hardy with homemade waffles, granola, fresh cream and fruit. We were ready to go! First off we checked out the M's location. They had a mile and a half trail surrounding their property. They had planted hundreds of white pines as they do not normally grow in these parts. It reminded me of growing up in New York state! I loved those sappy trees!
After our warm up trek, we made the final bathroom breaks and made sure all was loaded and ready to go as we were headed to a rental cabin for the next 2 nights. We would have only traveled about 16 miles to our next hiking destination, but due to the torrential rain and ensuing flood waters, the road was avalanched in with mudslides and busted off. So, we had to travel over an hour of scenic road to our destiny. Yep, it was waaaay out there! The first trail we hiked down was not even a blazed or marked trail, so I guess I can't even call it a trail. Sylvia and her boys led the way while we filed blindly on....
Through to woods, down, down, down the steep incline. We heard the roar of the falls. On we walked a bit more. I was concerned about Seth, The Puzzle Boy getting down safely. Mark and Sylvia worked him on down without a problem. Once we got down to where we could oversee the gorgeous falls, it was suggested that we go down an even steeper rocky incline right next to the falls. It was a nicer, flatter place to eat our lunch. I was a bit worried about getting Seth down there and back up again. He was so hungry, I was hoping he would have enough energy to get there. You know how when you are hungry, you can't focus as well and don't have as much strength. My mommy instincts are still steel strong! I needn't worry again. With Mark and Sylvia's strong 6'6" boys along, no problemo! These boys are used to hard work and hiking and working out! They proved that to me!
So, we all made it safely down to our resting spot. We had a wonderful lunch sitting there watching the falls roar down their well developed pathway. The sun was shining, it was warm, and you would never know it was windy and cool up on top!
After we ate, took numerous pictures, and rested a bit, us ladies wanted to trek on down the river to see another falls. The men went back up the mountain. Sylvia's one son came with us three ladies for protection. The men spent a couple hours whittling walking sticks for us and shooting the breeze while us ladies and one young man tripped over rocky outcroppings and balanced over a fallen log at least 15 feet above the swirling waters below! It was farther than we thought, but we made it. The falls were 150 feet across. A couple of kayakers were there doing their stuff. So cool to watch them fall down the falls! Their kayaks were so short and cute. Never seen them so small. Much easier to handle on the rapids.
On the way back, a poisonous snake lay curled up on the narrowest part of the trail. Excellent, we had Daniel along to push him out of the way! Now where did that ugly snake come from???? Crossing over the tall log on the way back was scarier for me. I panicked! I felt like crying. My resources were wearing down, I did not have enough water with me and all I could see was the swirling water beneath. Sylvia saw the problem and came up behind me. She put her hands on either side of my shoulders to give me a positive and secure attitude again. She said she was fine. I walked on without a hitch. Amazing what a little bit of guidance will do. A firm grip, a secure and solid landing!
Becky followed behind and just zipped on across! Bravo, ladies! I am glad that The Puzzle Boy was not along as my heart would wear thin! I was already concerned about him making it all the way back up to the top! Why???? Again, a Mother's Heart!
Climbing back up the steep slope was no easy task. It was at least a 45 degree incline. Up, up, up. The sun was beating down on us. Thirst. My liter of water was not enough. I thought the hike down and back was going to be quick and easy. We went farther than I thought, and did not bring more. The others were getting thirsty also. Water really gives you the energy to keep going. Kind of like gasoline in your car. You fatigue easier without it. I have accustomed myself to plenty of water each day without hiking, so with that, I needed more! Once at the top of this particular incline, Sylvia and Daniel remembered a creek. On and on we went. Finally, with no trail to travel on, these 2 found the creek, filled the water bottles and put in water purification. MMMMM, good as gold! Yes! We finally made our way back to the men who were just about on their way for a search!
It was much farther than I thought coming back. It is so easy coming down as you talk and visit, you forget how far it is.
Now, you are wondering why in the world do we put ourselves and our Puzzle Boy through such things!
Good question. First of all, we like adventure and exploring. Second of all, if you quit using it, you lose it! We have found that so true for our Autistic son. If we allow him to sit around, or allow ourselves to sit around, we "stove up" as they call it in these parts. You weaken, you lose your balance and now you become handicapped! I will share more on our next adventure as to WHY! There is more to come. This was just the beginning!
For now, it is evening. It has been a long day, and our hour drive to the cabin turns into two hours. It is long past dark when we arrive. The Puzzle Boy is starving and exhausted. After he eats, he immediately falls into a deep, deep slumber.....
Until Next Time, happy dreaming!
Nancy Lynne!
Wednesday, March 26
Autism Steps out of Routine!
by
Nancy Clayburn
on Wed 26 Mar 2008 11:52 AM CDT
Thursday, March 20, 2008. We woke up as usual on that morning. We ate breakfast, as usual. Mark went to work, as usual. From thereafter, it was unusual. I started packing up our duffle bags and pulling hiking boots out and filling up our Camelbak water packs.
This is when Seth decided things were not going to be normal. We don't tell him too far in advance when we are going somewhere because we don't want to stress him out. "Where are we going?" Came the inevitable question. "We are going to go hiking with our friends down in Arkansas for the weekend." I told him. "Why?" "For how long?" "Where will we sleep?" "How will we eat?" Then as we travel. - "When will we be there?"
I can imagine that in his mind, unless I showed him everything on the map and gave him exact moments when we would arrive somewhere, it is just plain nebulus to him. At home he has exact moments of time all laid out. When to eat, when to sleep, when to brush teeth, when dad is coming home....
"Soon we will be there, Seth. I know it seems like a long way." It truly did seem far. It ended up being 5 hours to our friends -friends home. They lived way, way, way far out in the boonies! And you thought I live far out! Oh, Hoooooe. Nope! These people did, though! We drove down, down down, then up, up, up over mountains that I did not know even existed in the state of AR! It was beautiful! Way, way, way back down the lanes, over the Buffalo River which was recently quite swelled by the incessant coming down of rain we recently had. We finally made it to their home after dark settled in.
The M's were quite hospitable to us all! Food was prepared and waiting for us at their generous table. I think Seth was quite relieved when he saw that the place where we were actually had food for him to eat. Now he could really settle in! We were quite tired by now as the day had droned on for quite some time. It was 10pm. The M's brought us out to their guest apartment. The V's slept downstairs and we climbed the ladder to the upstairs room. It was all quite nice. Seth conked out pronto once his teeth were brushed and his pj's were on and the bed made up.
The wind howled through the night. "OooooooOOOooooo!" it sounded through the windows and across the screens and around the cracks and in the pines! We slept well and awoke to the peace and serenity that surrounded the countryside.
What would happen today? Find out next writing!
Until Then, Find a peaceful corner, stop, pray, and Thank Your Heavenly Father for the freedoms you have and for the people that are special to you!'
Nancy Lynne!
Wednesday, March 19
How Might an Autistic Child Relate to Death
by
Nancy Clayburn
on Wed 19 Mar 2008 10:14 PM CDT
Years ago, when Seth was about 5 years old, my dad had a cat and we had a dog. My dad's cat was a beautiful calico with long hair. We had her since I was a young child. It was surely a cat with 9 lives. Tiffany, our dog, which was a poodle had been around since before we had children. Back in B.C. (before children).
One day the cat died. Seth wanted to see her get buried. All we had out in the woods was loads of rocks and boulders. So, the cat got a big rock marker. Back Seth treked after the sad deed was done. Nary a word. Then one very sad day, at 12 years of age, our beloved Tiffany died. She was a wonderful black poodle with much personality. She gave a lot to us. Actually, she was quite sick with congestive heart failure. We made an appointment to put her down. It crushed my spirits. I loved her soooo much. She followed me around the day before and just kept staring at me. The day of the vet appointment, she sat on the arm of the couch and never got up.
Seth wanted to go with dad to see this thing take place. I thought that was kind of warped but chalked it off to being a bit young to understand. When the boys arrived back home, Seth said he thought it was very neat to watch Tiffany die. However, he thought that she was going to go flat when she died. He eagerly went out to the back woods where the cat was buried and grinned all the way home. Again, "Neat!"
I was a bit disturbed by this behavior. Two weeks later Seth asked me, "Mom, when is Tiffany and the cat going to come alive again?" I replied that they would not come alive again. They died.
"Oh, that is so very sad!" He lammented. Over the ensuing weeks he kept saying how sad it was that Tiffany would not come alive again. I felt better.
This past week, my dad died at the young age of 65. It was a fast, sudden happening. It took an active, energetic man down within 2 short months. It was a very difficult thing to go through emotionally and otherwise for me. Especially since he was very far away in North Idaho. I am in the southern part of Missouri. I could only talk to him over the phone and heard him get weaker and weaker till he could hardly speak.
I told Seth that Papa was very sick. "Oh, that's so very sad." I had him write a letter to papa. "Dear Papa, I am so very sad that you are so sick. When are you going to come and see me? I think you should pack up your bags and come and see me." This is the same one-sided conversation that he has had with him for years. "Please come and see me." It has not happened in over 10 years. The letters went back and forth monthly for a long, long time.
Last Thursday I told The Puzzle Boy that his papa had died. "Oh, that's so sad." Then life just went on for him. No emotion. The night before when we told him that papa may not live, Seth had 6 seizures! We wondered what in the world was going on. He had not done that in years!
I think that perhaps it was his way of processing the emotion. He has not shown any emotion hardly at all except for happiness, of which we are greatful. Life just goes on....I find it very interesting. I can't remember the last time Seth cried. The other night when I tucked him in bed, I asked him if he was sad about anything. "No, nothing." Was his honest reply.
Until Next Time, if you have grandchildren, go and see them. Make a wonderful impact on their lives. Talk to them on the phone. If you have an autistic grandchild, keep a consistent relationship going also. Don't give up. Even if you think that it does not matter, it really does. Relationships are very, very important. Please, above all else, tell your kids, grandkids and whomever, that you are PROUD of them!
Nancy Lynne!
Monday, March 17
Autism Everywhere
by
Nancy Clayburn
on Mon 17 Mar 2008 11:25 AM CDT
Mysteries and Complications
Autism is everywhere-once again.
Separating fact from fear as the courts and Hollywood wade in.
Claudia Kalb
NEWSWEEK
You wonder what he thinks. The little boy who flaps his arms and bangs his head. Who bristles at the touch of wool and covers his ears when balloons go "pop!" The boy who doesn't respond to his name and will never say "I love you." What does he think of the world outside? The busy world of childhood vaccines, celebrity fund-raising and genetic research. The cauldron of medicine, media, politics and the law. What does he think of autism?
For that matter, what are we to think? Passions about autism are running higher than ever, and for good reason. Autism spectrum disorders affect one in 150 kids from all walks of life, according to the Centers for Disease Control and Prevention, a tenfold jump in just the past decade. As the numbers grow, public awareness increases and the fervor surrounding each new development intensifies.
Earlier this month, after the federal government said vaccines aggravated an underlying disorder that led to autism-like symptoms in 9-year-old Hannah Poling, the longstanding controversy over the role of childhood vaccines flared anew on network newscasts, the Internet and talk radio. The culture of autism is hitting prime time, too. Next week HBO will air "Autism: The Musical," a documentary about five children with autism who perform in their own show. A week later, Sundance Channel will broadcast "Autism Every Day," a film laying out the challenges faced by families. April 2 marks the first World Autism Awareness Day, a global effort voted into existence by the U.N. General
Assembly. Less than two weeks after that, Jon Stewart will host an autism fund-raiser at New York's Beacon Theater, to be aired live on Comedy Central. Among the glittery lineup: Tina Fey, Stephen Colbert and Conan O'Brien.
Despite its high profile, however, autism is one of the most complicated neurological disorders known. Some of the people on "the spectrum" attend college; others never speak an intelligible word. Its complexity, in fact, is what has fueled the ongoing vaccine debate and caused divisions within the "autism community." Unlike most conditions that attract popular and celebrity support-breast cancer, AIDS-autism is almost a complete mystery, with no known cause. The vacuum created by
this lack of knowledge has been filled with the theories, worries and frustrations of desperate parents. It's hard not to want something, or somebody, to blame. But now, as the spotlight glares again, it's time to separate fact from fear, to strive for perspective and clarity over emotion, to define the true scope of the disorder.
For decades, researchers have been trying to pinpoint a cause for autism. In the 1950s, clinicians blamed "refrigerator mothers" and their cold, uncaring parenting. More recently, the furor has swirled largely around childhood vaccines. In 1998, a controversial British study, later retracted by most of its authors, suggested a possible link between autism and the MMR vaccine, which then contained thimerosal, a mercury-based preservative. Starting in 2001, thimerosal was removed from almost every childhood inoculation (some flu shots still contain it), and the weight of scientific evidence has found no connection between autism and the preservative. Today, scientists believe that
genes (the disorder runs in families) and environmental factors, which could be anything from pesticides to antibodies in a mother's womb, both play a role. But some parents continue to believe their children were injured by modern medicine. Sen. John McCain lent his voice to their cause recently when he said "there's strong evidence" that autism is connected to "a preservative in vaccines." That, and this month's ruling in the Poling case-which was one of thousands yet to be decided by a federal "vaccine court"-have given new fodder to the debate. In a CNN
"quick vote" conducted after the news broke, 58 percent of respondents said they believe there's a connection between childhood vaccines and autism.
But the court case wasn't that simple. It turned out that Hannah had a rare mitochondrial disorder. Rather than support the thimerosal hypothesis, the decision endorses a whole other field of research into the causes of autism. It's possible, scientists say, that a challenge to the immune system-be it an infection, a vaccine or some other trigger-could stress already fragile cells and exacerbate the problem. Scientists want to know how many children with autism have mitochondrial disorders. And would it be possible to identify those who might be vulnerable to vaccines? "This case is a call to action to continue to understand this very complex disorder," says Geraldine Dawson of the
advocacy group Autism Speaks.
To appreciate the complexity of the condition, all you have to do is look at the extraordinary range of people who fall under the umbrella diagnosis of autism spectrum disorders. At one end are kids like Charlie Fisher. At 10, he's unable to read and can speak only short sentences. For two years, he head-banged several times a day, says his mother, Kristina Chew, who writes a blog called autismvox.com. Chew believes that vaccines had nothing to do with her son's condition and she worries that all the vaccine attention detracts from the more-urgent needs of people with autism, who require intensive behavioral interventions and social services-the kind of help her son has received. Today, Charlie is
doing much better, even learning to surf, but he is still "profoundly different" from other children, says Chew. "There are some things that maybe he can change and other things I hope people can come to accept."
On the other end: Ari Ne'eman, president of the Autistic Self-Advocacy Net work and a 20-year-old university student. Ne'eman was diagnosed at 12 with Asperger's syndrome, a high-functioning subgroup of the spectrum. Exceedingly articulate, Ne'eman says he has never struggled with speech, but he has always had difficulty understanding nonverbal forms of communication, like sarcasm. He also flaps his hands occasionally and he can't stand the feel of certain fabrics, especially
velvet.
With the vast range in abilities comes a striking diversity in thinking, too. Over the years, the autism community has divided into camps, often with conflicting ideas about how to view and treat the disorder. Elizabeth Horn, president of the Autism Recovery Consortium, believes vaccines may play a role. Kids "slip away after getting these shots," she says. Horn, whose daughter, Sophia, has autism, believes children on the spectrum are sick, but can recover with help. Sophia, 12, is on a
special diet, avoiding artificial colors and chemicals, and she takes supplements like magnesium and vitamin D. Ne'eman, on the other hand, believes in neurodiversity, the idea that differences in human behavior should be celebrated, not fixed. People with autism should be called "autistic people," he says, not "people with autism," the language favored by mainstream advocacy groups. "Our feeling is that the autism spectrum is an intrinsic part of our personality that cannot be separated," says Ne'eman. And he worries about research that might one day locate genes and other markers that could help doctors test for autism. Researchers say such knowledge would allow them to intervene
early, during a critical window of development in the first year of life. Ne'eman's fear? That autism will become like Down syndrome-essentially selected out of the population.
It's a provocative idea. But the ultimate goal of the researchers, and the many families who support their work, is to solve the mystery of autism. Clarity is what we need, and science is the way we'll get there.
Wednesday, March 5
Mom of Autistic 21 year old Boy Flies Apart!
by
Nancy Clayburn
on Wed 05 Mar 2008 10:42 AM CST
The Mom, (me), took a short break all by her little ole self. She went on an airplane and flew to Florida. Can you believe it??? I guess she thought she needed a change of pace and scenery and weather. She was right!
The Dad went to work as usual, but kindly took The Puzzle Boy with him. Yes, he did! The Mom (me) was only gone from friday until the following monday, but it was still an extraordinary feat for The Dad, especially since he had a birthday the day after The Mom got back!
How did the Mom (me) do? Oh, she did swell! She had 3 whole seats to herself on the airplane and it wasn't because she was of great size, just happened to be an unfilled flight. She thinks that God was pretty good to her. She got to stretch out and sleep for the 2 hours of flight. She had been pretty exhausted for many weeks. Burned out so to speak. She finished writing and getting her book "The Puzzle Boy" to her web designer. She is waiting for it to be ready for you to get and read!
Who did she go and see in Florida? Oh, that was the fun part! Her daughter, Sarah her granddaughter Hannah and her son in law, Mike were there. She had a ball playing with Hannah! Hannah is now 16 months old. A picture will be soon posted of her, so keep a looky out! You will be so surprised at how much she has grown. The Mom (me) also was treated many times. She was taken to the Botanical Gardens. She was taken to Siesta Beach. She walked the pier at Venice and got to hold a Puffer Fish in her hands. Just as Sarah, the daughter was getting ready to take a picture, the Puffer Fish deflated and The Mom screamed and dropped the poor thing. It scared her! Poor, poor fishy! He was ok, though. Everyone said I must have been very relaxed and friendly for the fish to do that because they stay puffed up when afraid or feel threatened. I should have told them that the fisy knew that I was a vegetarian!!!! haha. She saw her mother and we took a 4 generation picture. That was so nice!
The Mom (me) was also treated out to a little restaurant for breakfast called "Peaches" What a wonderful little diner that was! Such a wonderful menu. We could hardly decide what to get. It was great. The weather was great. Sarah looked great in her second pregnancy. The flight back was great. The landing was great. But.....Oh, oh, oh, the return weather was lousy! I went from 83* to 29* in 2 hours flat! Snow, ice, freezing rain for all the drive home. The next day, snow blizzard. Today, sunny and bright. I just went for a lovely walk in the snow with The Puzzle Boy (Seth). I made pretend that I was at Siesta Beach. The sand is pure white like snow.
How did The Puzzle Boy do? He did great. He survived. He ate, he slept, he went to church, he went to grandma Clayburn's house. He talked up a storm, and he gave me the biggest smile and hug when I walked in the door. He was soooo happy to see me again and soooo happy we were all together now!
How did The Dad do??? Actually, he did fine. He did not complain. He ate, he slept, he went to church and went to his mothers house for lunch. He made lunch for the 2 of them to take to work and he was just perfect when I came home. Big hugs and kisses and was soooo happy we were all together safely! March 4 was his birthday. He finally caught up to me in age! We will celebrate his birthday this weekend when a good friend of ours has kindly obliged to take on "The Puzzle Boy!" He will just stay over one night. They were our hiking buddies to Havasu Falls and will be our hiking buddies again as we persue Yosemite!
I think that This Mom (me) has come home energized and feels great. Her mind had a nice break. She feels more able to write blogs again. Moms, somehow, take a break. Dads, please help the Moms out. Usually they carry so much of the load. You will be so happy to see how happy she is after the break. You will both be soooo happy! This is a together kind of a thing. It takes at least 2 commited adults plus a grandparent or a good solid friend.
Until Next Time, hold a Puffer Fish, or at least go on the web or to a book and see what they look like.
Nancy Lynne!
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