Our Week at Family Camp

Our Week Day at Family Camp

Last summer when my autistic son refused to stay at scout camp because he had to sleep in a tent and eat food made in their dining hall, I did some research and found they had a family camp with cabins we could sign up for. I was excited because then we could just bring Galen (our autistic son) to his troop everyday so he could join them in earning merit badges and doing all other fun camp things while still being able to sleep indoors and eat mom’s cooking.

So six months after we made family camp registration, our family packed up the van and spent 3 weeks in a national park-hoping camping trip (mostly in Utah and Arizona). We even got Galen into a tent (that took 3 nights) and hiking on trails. And two weeks after that we again threw our camping supplies in the back of the van and headed off to Family Camp.

We drove the 2 hours to the middle of nowhere, dropped our 12 and 14 year old scouts off to join their troops and continued down the road for the Family Camp. It took 25 minutes to get to the Family Camp from where the troops were staying, down a long and winding road. Then we met the director, handed our health forms over, all of which are supposed to be signed by a doctor. Did I mention that meant 6 Camp Physicals just for Family Camp?, Yeah, we are a family of 9.

Then we were directed to our cabin and told our cabin councilor would come along and share all the rules with us, and they handed us the paper wristbands that we were supposed to wear all week so that the Family Camp would know we belong there. Of course these wristbands are the kind used in water parks and fairgrounds to show you paid for entrance that day. We went to the fair on Saturday, and had wristbands just like this. My toddler chewed hers off in ½ hour.

We emptied our van into the cabin and I let my husband park the van and hike the ½ mile back into the cabins. By then I had already had to pull the knife that is part of the cabin’s supplies out of my toddler’s grip and turn off the stove. The stove’s controls were on the front, right at toddler level. Our cabin counselor came and ran down a list of things that makes camp more fun (an interesting euphemism for nicely requested rules. Of course our 9-year-old with a mood disorder saw right through that.)

Interesting things about the family camp cabins, they have a kitchen sink with hot and cold water, a couch that pulls out into a double bed and 4 bunk beds, but no toilet or showers or baths. The nearest facilities was an out-house down a little trail. When we were on our national park trip, our 4 year old, who we are currently trying to potty train, did a really good job keeping dry. We also managed to be close to restrooms with flush toilets and running water for each of our campsites, which he was constantly running off to, but whenever our bathroom stop included an outhouse or pit toilets, then he refused to use them and would rather go in his pants. Of course some of those out-houses looked like they would be happy to eat anybody under 8 , sucking them in in one swallow, to go swimming forever in the lake of urine and poo. So I could see why he would refuse.

It wasn’t a large surprize that the toddler’s diaper was nasty and leaked all over. I bathed her in the kitchen sink and started a dirty diaper bag (that we set outside the cabin for odiferous reasons).

After we settled into our cabin we hiked off to the lakefront and spent 25 minutes in an orientation of the rules, buddy system, buddy boards and boat cabin before we even set foot in the water. By that time, our 9 year old (with a Mood Disorder, and a learning disorder) was already throwing a fit because there were too many rules for him to remember. We had to keep on top of Clay (our 9- year-old) because he began throwing sand and rocks. But he eventually calmed down and went in the water, where he became unhappy because it was too shallow in the area he was allowed without passing any sort of swim test. His main complaint at this point was that he couldn’t even remember what he was supposed to do for his swim test. So he and the 4 year old, 2 year old and 7 year old all played in the shallow water.

I decided that because we could only take out any boats with someone who classifed as a swimmer, that the week would be more fun if I took a swim test, so I went and got my suit on. Upon my return I requested a swim test for both me and Clay. After jumping in the water and being shocked with the cold, I started the 6 laps that were required, but because I need to wear my glasses to see anything, I usually have to swim with my head out of the water. After 4 laps of the side stroke, surprised at how out of breath I was, I stopped to catch my breath. When I didn’t feel caught up in my breath after a short break, I gave up wondering if I played too hard this weekend  (if dragging kids to a parade and a fair and then packing for a camping trip is playing).  or was just out of shape. Clay didn’t pass his swim test either. He touched bottom too many times in his required 2 laps, he wasn’t very happy about that, but did try again, which he also failed. We cheered him for trying, and trying again, because that is a big accomplishment for Clay.

When the toddler begin to get shivery, we pulled the kids out of the water to head back to the cabin. One of the staff felt he had to tell us that Clay had been throwing sand and rocks, so we apologized, recognizing that they had no comprehension that not engaging the anger issues is often the best approach to defuse the bomb that Clay was becoming.  At no time did Clay pose a threat to himself or others, but he did pick on his siblings a little (we were on top of that too).

I checked the activity board, that afternoon they would be making postcards and offering swimming lessons for those who would want it. Tomorrow they would offer sailing lessons, (for those with swimming qualifications), an unspecified fitness class and another craft project. On Wednesday they would be doing more swimming and crafts and so on the rest of the week. So the scouts were doing archery, wood carving, riffle shooting, high ropes courses, video game design and the Family Camp does crafts and swimming, all with many rules to follow. Yikes. I started to miss the hikes and activities at the national park, that were parent led, and available whenever we wanted them, I also felt jealous of my scout boys.

We hung around the cabin through dinner time, made a nice spaghetti. But I bumped the stove when I reached grab and glass and it turned on and melted the  plastic bag that was on it. After dinner we decided to go for a walk and find the shower house, with laundry and flush toilets! About a block down from us and behind the row of cabins sat 2 shower houses and a brick storm shelter that doubled as a game room. My kids had fun playing fussball while I perused the bookshelf looking for interesting games and books. Finding nothing too interesting, I wandered over to the shower house and used the flush toilet in a little closet and looked that the layout of laundry facilities; 1 washer and 1 dryer in each bath house, and a laundry sink. The showers were tucked into the toilet closets, I am not sure if there was enough room to actually get in and out of the shower, I never had to try and find out for myself. We all used the flush toilets, but Reuben (potty training 4 year-old) refused to.

Before we made it to the lodge  Reuben was smelling stinky and and obviously wet himself, but I had neglected to bring the diaper bag on the walk, so we let him live with it until we got back. Down at the lodge the councillors were singing (yes, literally they sing activity announcements) about the religious meeting that was going to happen down at the group fire pit. We had just found a box labeled “yard toys” with badminton rackets and birdies with a net already set up.

Badminton was the most fun, teaching the kids how to serve, attempting to volley the birdie, even though the net was set up under trees and powerlines (and the birdie kept getting stuck in the tree, and knocked off its course by the power lines.) After badminton and time watching fish on the dock we wandered back to our cabin, and I had finally figured out how to get Reuben clean, because I felt they would frown upon us dumping a poopy bottomed boy into the lake (and they allow no access to the lake when the beach is closed). I realize we could wash him in the laundry tub, like we have often done at home, when he was smaller. So I got all the stuff to bath Reuben and we went back to the bath house (14th block of the day with toddlers in tow for those of you counting), and that is when I found out it only had cold water in the laundry tubs. So I double checked all the shower stalls to see if there was any chance of an actual bathtub, and ended up scrubbing the poo off the butt and legs of a 4 year old boy in a laundry tub, who was screaming, because the water was nearly freezing.

Some of the kids begged to go home, nothing new, we survived the last trip, and I didn’t let my optimism for it die no matter how hard they begged (and they learned to enjoy most of it too), but I had to admit to Mike, that maybe this wouldn’t work out, but we would sleep on it and see if we couldn’t get Galen to join his scout troop for some activities tomorrow (and maybe even for us to find something interesting to do). As the day finally waned we did our scripture study and family prayer and tucked the kids into their beds. Then we went to the kitchen/ living room, pushed the table to the counter and had just enough room to lay down our king sized air mattress that was so awesome on our last trip. The mattress set up with not even an inch to spare between the table, that was pushed up to the counter, and the couch.  We didn’t use the pull out of the couch because a double is just too small for the 3 of us.

I held off until the last rays of sun were shining before setting off on the hopefully last trip to the outhouse before morning. Then brushed my teeth and snuggled in for a well deserved good-night’s sleep.

Clay did come out of his bed several times to stand at the foot of our mattress, finally I woke up enough to ask what he needed, he said he couldn’t sleep. My bladder had awoken me, and I had already started dressing to go to the out-house again, and asked him if he needed to go too. He said yes, so we went. At this point the out-house that is snuggled off a short trail in the woods, might as well have been up a 50 foot climbing wall as far as accessibility was concerned,and there are no lights inside of it, so you better hope you have a flashlight. or you will be groping around in the spider infested outhouse in the dark. And there was quite some nice specimens of wolf and daddy long legs hanging around (literally) in there. That must have worked for Clay because slept the rest of the night.

Naturally, our toddler, who is still nursing refused to take to her crib and insisted she stay physically attached to me all night. And then the air mattress must have sprung a leak (at a seam most likely) because it kept deflating in the night, and it turns out that I wake up when my hips or shoulders press against a hard floor at night, of course moving off the air mattress to deflate it requires waking the toddler/baby, but the husband was already awake.  We re-inflated it 3 times. Then the toddler/baby and I moved up to the couch to sleep. The couch is only 4 feet long. At first the cushioning felt good, but then the crick in the neck and the cramping of the legs get you. I was up and dressed before 6 am. I had given up on sleep and also on this trip. We were not going to managed this trip if I couldn’t sleep.

So I made muffins, and packed up, and as the children got up they were mostly happy to hear that we were going home. By 8:30 we were finishing cleaning up and headed up to the lodge to let the staff know we would be going. They were just getting done with a morning meeting and made check out painless, handed us back the health forms, the ones that were supposed to have doctor’s signatures, and did a quick cabin check.

We then called our boys and troop leader to let them know we were not staying. Luckily, both the 12 and 14 year old scouts were having a great time.

After the 2 hour ride home, I put away the food and slept for 4 hours. All the kids crashed before 10:30 tonight, I look forward to more sleep. I don’t like to give up, I don’t do it easily, but while lying in my own bed, all that ran through my mind before I fell asleep was “There is no place like home, there is no place like home, there is no place like home.” And I clicked my heels together 3 times.

Toddling Through Demolition Zones

"I've been to Jr High, and you can never pay enough to go back."

I have heard that quote or ones like it several times in my life. Today was a day like it.
"I have been to hell, parenting young, over active and extra destructive children, and never wish to go back."

But today, just like when one has a minor heart attack, walking back through the halls of the Jr High they went to, I tasted it again.

My first child has autism, and was extra tall for his age. The second child was very happy to follow his lead for the first 4 years of his life. I lived in a demolition zone for the first 12 years of their lives. Every day they would find new and more creative ways to wreak havoc and permanent harm upon our domicile and all things in and around where ever they were.

As parents of the destructive whirlwinds, we were always trying to out maneuver their abilities, putting locks on doors (the one blocking the kitchen off was a key to sanity), building shelves 10 feet off the floor and giving up the concepts of ever having an intact door, dry wall with no holes, an un-ripped book, or un -shattered glass wear. This got so bad, that when we finally had a house built for us, we had drains put in every floor and wood boards put behind all the dry walls.

It wasn't until about 2 years ago, when the addition was built, that we actually decided the extra expense of the boards behind the drywall would not be necessary. It is really nice when your F5 tornadoes of children become teenage ready leaders, and are starting collage classes before they are out of high-school.

So, I still have youngsters, preschoolers, toddlers, babies. They have all been calm and happy compared to the first 2/3. ... However, my sister and mother somehow maneuvered so we would have her 3 young children today.

Hello Hell, I have to say, I haven't missed you.

We got a kiddie pool and sprinkler to help keep them busy. So they were running in and out of the house with buckets of hot water to help warm the pool. Not bad idea if you enjoy having a trail of wet sand through your house, from the side door, through the entry, the living room and the laundry room.

Then they got tired of it and wanted to play upstairs, so I some how found clothes for them all to wear (it turns out all their clothes, except their swimsuits were in grandpa's car).  And they went upstairs to play. A little while later one of the kids comes down and says he needs to go outside to see the results of the water experiment they were doing upstairs.

Which meant I had to go see what they were doing upstairs. They had ripped a hole in the bedroom screen and tossed things through it to the roof below them, and then commenced pouring water through the window, which in our house, allows the water to possibly be caught in the insulation under the window.

So I sent them all outside again and locked the doors. Of course they couldn't stay out of the kiddie pool. so soon they are playing mostly naked outside, having taking off the sets of, now wet, clothes I put on them. Then they decided to come inside and empty everything in search of the swimsuits they had on only and hour ago.

After they left the former contents of our sandbox in my bath tub, and the floor full of sopping towels, Grandma called. She was done with her meeting.

Even though I did laundry all day. I think the pile ended up bigger than it started.

Amy, I love you, and I love your children, But I have decided I prefer kid over kids, and I am really starting to like teenagers. Whenever there is enough of them to gang up on you..... you should at least be allowed to use a tazor, or tear gas (only I couldn't handle any more crying!). When I left the bathroom to grab them a towel I literally overheard Kira and Shannon plotting against me.

WOW, now I remember why whenever I tried to clean the house that the house would end up dirtier then when I started. I think I will keep my teens.

Make new plans, and think twice about the old?

When you make  new friends you can keep the old.

Hotel reservations are not always the same way, even though we may feel attached to them like an old friend.

This week Mike and I made plans to head the Autism Conference of MN. AUSM has and awesome conference, dealing with a lot of timely issues for us. Like starting Galen's transition into adulthood and some behavior/emotional things we are dealing with with Clayton.

We have also just spent 2 weeks at the Mayo with Clay and Ian. Clay was ran through a series of Psyc tests and Ian just had his normal button change and yearly update visit.

Our family is also moving forward on a extended (like lots of family) family trip to Disney World this fall.

And naturally , not only do our financial budgets not allow us to do it all, but our emotional and personal energy budgets not allow us to do it all.

It is kind of a bummer though, as I have given up a plan for a trip that feels a lot like and old friend. In December we decided to go to Nauvoo, ILL (a very nice church historical site) and hang around there for several days after we saw the Mormon Tabernacle Choir in the Twin Cities.  The plan seemed to work and was very affordable.

I love Nauvoo, I spend a whole semester there studying church history in college and have always wanted to take my children back there. I have yet to see that Temple, that I just knew would be rebuilt, and thought it would mesh real nice with the study of Church History and and Doctrine and Covenants this year.

But, alas, one can not do everything at once. Not only will I be about 35 weeks pregnant, but I will also have just finished school semester and a lot of traveling (for me) this spring. Then of course, we will have the baby this summer and then 6 weeks later head off to Florida.  There is just not time and energy (or money) for everything.

Like wise, during the time frame of the trip to FL, there was an opening in a midwifery class that I have been interested in. My SIL (also an aspiring midwife) is planning on going and asked me if I was too, but the new baby puts a fairly big crimp on educational plans, which is one reason why we are going to FL this year rather then next year. Next year, I plan to be taking lab classes again, because my aspiration to midwife will continue.... (I plan to become a Dr Midwife (hold a Doctorate in midwifery).... and someday I will go to the Farm and take their course, because I believe they hold lots of good information that med school does not offer, that I can then use in my work settings.

Yup, we can't do everything at once. The most important question for us is what is the most important thing to be doing now? (and then do as many of them as you can do well with your time and energy and budget constraints).

And for me, that is still Mother and Wifehood.... followed by my educational path.

I have learned that nothing brings as much happiness as my babies to me. Even when they start to grow up on you (le sigh). So I would rather have this baby now and love her up right. Life will provide time for me to do everything else it has in store for me.

Just and average day around here

Shanny got picked up by the police, before anybody here even knew she was missing. She went to see Grandma, while I was in Brainerd to buy more medicine for Ian, because she had poured all of Ian's meds down the drain and Ian's belly was growing larger, more distended that is, with out his meds to help him poo. I had Roo with me in Brainerd, which means that....

Getting away from home unnoticed was a pretty good feat for a toddler in a house where there are more adults then children.

That is because all the adults were focused on trying to get Galen through his schooling before the year ends. After lots and lots of detailed coaching he did finally get his math test finished. Yeah!

On to his science project!

Its a good thing we are putting up a fence.

Neuro-typical syndrom

Happy Mothers Day!

And today I thank my kids for curing me of neuro-typical syndrome quite thoroughly.

Neuro- typical (think normal brained) people have strong imitation synapses. That means when they see somebody do something they typically want to imitate them. This is advantageous in learning how to hunt or what nuts and berries to eat, but so often this imitation often morphs into us wanting to have what others have and be just like everyone else. Of course none of us are just like everybody else, so we start pretending we are something we are not and make a facade of perfection. This "Facade of perfection" is neuro-typical syndrome.

As you may or may not know, in the autistic brain theses imitation synapses are very weak, these children don't just naturally pick all those unwritten rules of social engagement and usually are fairly clueless of what other people think of them. Of course these challenges reflect in the family functioning and pretty soon as a parent you have to give up and trying to be like everybody else- it just ain't going to happen.

Then we see that modern society is built upon an unsustainable systems and realize there are more then mental health reasons to exit the rat race.

Autistics are more likely to start a trend then to follow one.

contrasts and realizations

Sometimes I wonder how much Galen understands about anything. In many ways he like a 7 year old in maturity, a 14 year old in understanding math, and in a body undergoing puberty and growing nearly 2” per month.

At church today we (bishop and parents) decided that he was not ready yet for the priesthood or his patriarchal blessing. In some ways it was a relief- to realize that there is a real lack of understanding and readiness for this developmental phase yet. It helped me to understand that he truly doesn’t understand many things that others his age and size do.

It was truly interesting to contrast this with Ian’s baptismal interview today. Ian gave clear and precise answers and had questions. Even though he started out rubbing his eyes and playing with his shirt he soon matched the bishop’s physical positions and actions.

Where as Galen refused to say a word and never once made eye contact. I think this is where is uphill battle is going to be in the coming months with schools and courts is to help them to understand that in that big body and active brain lays a little child- who is probably only accountable as a little child- but yet has the body and hormones of a teenager and needs that he can not voice that somehow going to school violates.

In some ways he is very much a cross between Calvin (from Calvin and Hobbes) and Mo- the third grader who shaves.

Dear Elementary School Principal,

It was so nice of you to send us a certified letter reminding us that it is our job to try to keep our autistic 12 year old going to school everyday.

Apparently you have not talked with his teachers, para or advisers yet as to the efforts we have gone through in dragging him to school kicking and screaming, or to the joy we have at home when we can't even get him through the door and then he spends all day screaming while hiding underneath the kitchen table.

As we do tend to the parental duties of feeding and caring for our 12 year old, he is now officially bigger then most adults, weighing in at 175 pounds and is 5'8" in height, and because we have no desire of becoming physically incapacitated, we have therefore given up the tactic that we have used for years to get him into your school of picking him up and carrying him while he is throwing his tantrum.

We have, of course, tried the traditional bribing of our son with toys, gifts, cash or video game time to get him to be willing to attend school. When we find something that peaks his interest enough he does consent to go until it is time for him to leave then house. At that point he takes on the same look as a deer in the headlights and clings to anything he can so that he can not be made to vacate our premises.

Yes, we would be thrilled to work with you and your school team to get him out of our house everyday. My ears, toddler and puppy would be ever so grateful. In that regard I have been requesting appointent times with the school psychologist, and autism specialist, along with his normal team of teachers, and specialists.

You are more then welcome to join our meetings and look forward to any constructive advice you may have.

Have a Merry Christmas and a happy holiday season. As to us here we will focus on getting through the changes in schedules with as few tantrums as possible.

Sincerely,
Tired Mom

oxytocin and autism

Does this remind you of Galen?

"From the perspective of the newborn, babies also more often seem to have problems making close contact with their mothers after an oxytocin-assisted delivery, -which can lead to problems during nursing. Disproportionately, such babies coming in to my practice displayed behavioural signs of trauma. They were more likely to display the moro reflex and this over a longer period of time, and they were often very easily startled. Such infants are often known as "screaming children�, and may only be calmed when on someone's arm. Usually, an infantile colic is diagnosed in such cases and a therapy is then arranged to address this "disorder'. Affected infants also tended to show a change in skin complexion, and to sweat. They were usually restless and only able to focus after a while. They were sometimes hypotonic or hypertonic and often had problems controlling head movements.

Even if these criteria are not seen as oxytocin-specific, but rather as general criteria for a traumatised baby, I first became aware of a correlation with the use of a labour promoter, because these same children were also the children who were not able to be comforted immediately after birth, even by their own mothers. While in cases of non-assisted births (even those completed only after many days of labour-related strain), once the newborns had overcome the stressful experience of birth, these children were subsequently able to be calmed through bodily contact. Could the missing of oxytocin at the bonding sites be a possible mechanism for the persistent restlessness of these children? "

read paper here http://www.hugthemonkey.com/the-perinatal-application-of-oxytocin-and-its-potential-influence-on-the-human-psyche.html

intersting article

Erasing Autism
Scientists are closing in on the genes linked to autism. So why is
Ari Ne'eman so worried?
Claudia Kalb
NEWSWEEK

From the magazine issue dated May 25, 2009

It's spring in Washington, and Ari Ne'e-man, with his navy suit and leather brief-case on wheels,is in between his usual flurry of meetings. Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this
about Ne'eman—he'd mentioned it when we first started talking more than a year ago—but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne'eman crazy to sit in it. "I'd wince because I'd think about how it would feel to get that under your fingernails," he says. I think I see him shudder at the memory.

Ari Ne'eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne'eman's velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn't want anybody to mess with or, God forbid, cure his Asperger's. It's who he is, who he's always been. It's why he's had ob-sessive interests since toddlerhood. At 2½, he saw a dinosaur skeleton at New York's American Museum of Natural History and announced, "That's a pterodactyl." From there he fixated on baseball, reciting players' names and stats ad nauseam, whether or not anyone was listening—a behavior experts call perseveration. Later it was constitutional law. His friend Ben DeMarzo remembers driving with Ne'eman and two other classmates one high-school weekend. DeMarzo and the others wanted to listen to music—the Beatles were a favorite—but Ne'eman had other plans. "Ari made us listen to Supreme Court oral arguments. It was brutal," DeMarzo tells me. He was outnumbered—how'd he win? I ask. DeMarzo laughs. "Ari always wins," he says. He certainly puts up a fight. Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a
medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.

Ne'eman's network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir un-rest.
very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective." Ne'eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today.

Last year he helped stop an edgy "ransom notes" ad campaign created by New York University's Child Study Center to raise awareness about autism. One said, "We have your son" and are "driving him into a life of complete isolation." It was signed "Asperger Syndrome." Ne'eman was appalled. "There's a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place," he says. "That's not true."

The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can't tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes. I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific
genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist.

When I press Ne'eman on genetic research—doesn't it have some merit?—he says he doesn't oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington's, then choosing to implant only the healthy ones. And who can blame them? But autism isn't a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? "That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."

The prospect of no more Ari Ne'emans—whether you agree with him or not—is haunting.
Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would
have been better off not born. And who can blame them?

Ne'eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. "People who see Ari today have no idea where he's been," she says. As a young child, Ne'eman was verbally precocious but socially challenged. "I didn't understand the people around me, and they didn't understand me," he says. He was bullied and ostracized—back then he didn't look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as
leisure reading. "I think the word 'freak' may have come up," he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne'eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he's learned to play along. Still, none of it is easy. "You come out of a meeting and you've put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases," he says. "Even if you learn to do it in a very seamless sort of way, you're still putting on an act. It's a very exhausting act."

He remembers being taught in social-skills training that when people are happy they smile with all their teeth, and when they're sad they wear exaggerated frowns. "I was always wondering, 'Why is everybody around me neither happy or sad? They don't have emotions'," he says. When you're autistic, social interaction can be like a foreign language: no matter how fluent you become, you're never a native speaker. Katie Miller, a fellow activist, jokes that "Ari is the only autistic we know whose special interest and talent lies in networking." But, she says, "it didn't come naturally. He's learned it the way every-body else learns algebra." Ne'eman has a way of taming the stress he feels: he wears a tie because it puts a soothing pressure on his neck. "It's a good way of calming my anxiety," he says.
One of Ne'eman's latest efforts is a new public-service announcement called "No Myths," which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne'eman appears in red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. "Our futures have not been stolen," Ne'eman says. "Our lives are not tragedies." The message is clear: We stand before you. Don't make us go away.

Routines, Routines, Routines, Routines

Mike and I are learning just how important it is to stick the the routines with Galen. One would think that after 10 years we would have sort of a clue. But guess not.

Neither of us comes from a back ground were we had strict routines for anything- our families were pretty laid back- that approach does not seem to work with my Galen. One can blame it on autism, or on him just being a kid.

But the fact remains that anything unusual will give us payback the first time we want him to wake up for something. And this weekend that was today.

He fights like a wild cat to wake up and get on the bus if he had a broken routine during the weekend. That means that the movie and ice cream was too much for him yesterday. Probably added on top of being at his cousin's house all day on Saturday. It got a little much for him to a point were he wanted to run home around noonish on Saturday. I don't think he is used to being picked on by girls near his age nor was used to sleeping in the basement because the toddlers were throwing up.

And then Sunday I brought them to their grandma's to play- and we stayed up a wee bit passed their bed times- I thought it would be ok- as there was no school the next day- but I guess not.

So here we are again, trying to figure just what percentage we can deviate from our routines and be safe for Galen. The percentage is looking smaller all the time.

As it is we already start our bedtime routine after school. They come home, have to play out side and do their chores. Then they are allowed 1/2 - 1 hour computer time. Then it is dinner time. They have to do their chores. We have snack and scripture study. Then the boys have to gather their school stuff, and it's story time until they all hopefully zonk out cold by 9 pm. If it's a weekend the routine starts with dinner time- and might include a bath.

We don't have much of a morning routine yet- we keep it pretty short- like get the kids up, dressed and on to the bus. This lasts for about 20 minutes.

Oh well, if I am stuck with routines I might as well make the most of them and add good habbits for myself and house. Like what to pick up, clean, change and prepare after the kids are on the bus. (usually the kitchen, the laundry and start dinner)
and at night- getting myself studying time.

Enough rambling. Have a good day.

Infinite patience

When I was growing up, I would often change out of the clothes Mom wanted me in. This occurred most often with pants. There was something about the fit and texture of many pairs of pants that made life uncomfortable.

These last few months I have realized that that is a sensory issue. I am very sensitive to what is touching my skin. That is why I end up wearing lots of soft shapeless things and many more skirts then pants.

But often, I remembered how I couldn't stand the pants Mom wanted me to wear as a child and this has helped me with Galen. Galen has sensory issues, and often it worse on some days then others, other times it is the same sensory issue all the time. For Galen the biggies are how his socks and shoes fit. The last few days the T shirts I dressed him in were not soft enough.

But Because I remember this was a real thing with me, I have nearly infinite patience with him when he complains that something is itchy or otherwise uncomfortable for him. This infinite patience saves lots of time. As soon as he expresses a problem we can quickly deal with it and get on our way. If I argued with him on weather this was a real problem or what he wanted to wear he would melt down and throw a fit and not be ready in time for the bus.

So maybe my Dad is right. Infinite patience brings immediate results.

Autism Bites

or at least yells, tantrums and kicks. luckily our biting is very limited around here. But I can't say the same things for tantrums, or meltdowns, as we call them.

We should have taken the early meltdowns, at the end of mini golfing, as a warning. We almost did, but then my sister pulled the "I bought cake for everyone" card and we were forced to play, and our hand looked all right against the bet of Rafferty's pizza, but as soon as it was time to go. Galen folded.

For 20 minutes he screamed and kicked and tried to get out of the car while it was moving. It was so bad that I sat back there with him to keep the damage minimal.

But he was calm by the time we got home and then the real work began. Getting 3 kids ready for school is not the easiest task, and when you add Ian's and Galen's issues on top of that, it becomes a much more time intensive task.

and other notes of this week: We spent our Saturday date night in the ER with Clay. He nearly cut the top of his ring finger off. Expect for the fact that I forgot my purse and cell phone, it was almost like a date. We only had 2 kids with us for a night out. But because I forgot my purse we didn't have means to call anybody or pay for anything that doesn't accept Discover card (the card Mike carries). But we ended up with take home to bake pizza and yet one more medical bill.

our washer is still broken. The part should be on order, but everyone who can install it must be on vacation- I plan to annoy them tomorrow.

Shannon is the light of every group of women. They all love to hold her and watch her smile and wiggle with glee. Someday I will post more picture,.... i just haven't even had time to pick up my office, none the less take picture lately.

I am hoping things calm down a bit when the kids are back in school. TOMORROW!!!!
The sun will come out tomorrow.

Right now everything that needs to be done is labeled "tomorrow." that however, doesn't count my shower and teeth brushing.

perfecto

I am sorry. I have taken no pictures of Shannon today, even though she wore a very cute little pink bubble with a turtle attached to it. I spent all day driving my kids crazy. You see, turn about is fair play.

I brought my oldest boys to Italian Camp today. After a nice little 2.5 hour trip. They got to show off their passportos and choose a namo Italiano. Galen at this point was looking downwards and muttering that he wanted everyone to speak English. But with enough coaching he ended up with the namo of Galileo and Ewan choose Vittorio. Rochester, who also is at camp with them instantly picked up on the non-verbal cues and choose Italo for himself.

Then we had to go through all the signing in including nurse's check, painting namo tags and customs- looking for anything in English.

Grandpa Nathan helped Galen settle into his bunk and make his bed. By the time we were ready to leave Galen and Ewan felt comfortable enough to kiss me good bye and then run off to play.

I can't wait to hear more about camp. I hope it is a shear and utter blast for all involved.

rant

Hi,
I really need you all to get on over to my website and prove to me that there are ecologically minded people in this world.

Because when people write a post like this http://autismbitestheblog.blogspot.com/
I just want to barf. Apparently they haven't read this http://cbs11tv.com/health/autism.coal.power.2.712702.html

and put two and two together- which in their case equals 6 autistic children. Of course the need to have something now, obviously must outweigh the need to protect our future generations from the same, or worse, things then we are suffering through.

Of course if gas were to drop down to $1/ gallon again I would probably give up hope that there would be future generations- at least of anything other then cockroaches and a few very adaptable weeds. But hey, the need for me to drive a lot in a big SUV outweighs those considerations. But of course, we all know that if we destroy this planet, the Lord is sure to give us a new one. (please notice this line IS dripping with sarcasm)

And while we are on that topic I have come to understand that all the nasty stuff talked about in revelations- all the end times wars, famines, plagues and what not- that we have/ are bringing those on ourselves. The Lord is not sending them. He was just warning us. It is our actions as citizens of this planet that have/are making those happen. Can I say that again? It is our actions as citizens of this planet that have/are making those happen.

That means that we have the power to change it. But first we got to change ourselves.

Ready for the World

Today was Shannon's first outing. Of course we had to dress her brother's up too.

Everywhere we went Shannon was cooed at and people used descriptive terms like "Pretty face" and "Long fingers".

Grandma Lynn was happy to get her baby fix today. Shannon made sure she paid for it too. Her diaper leaked on Grandma's lap.

Galen and Ewan's invention day camp was finished today and we arrived later then we desired to see their showcase. It took us quiet a while to put the car seat back together after cleaning it- and then try to get it installed in the car.

Galen made a water balloon launcher that would have launched the balloons across the parking lot. The camp staff made him reduce his design to fit with in the class room settings. (too bad, go Galen!)

And he also made a robot the looks like the one in the new Wall E movie. Only he misspelled it and it was "Will E". But it so had the character of the one from the ads.

Ewan enjoyed camp too. Luckily Ryan was there for Ethan- and my kids until we arrived. He understood the "Car seat fiasco" issues.

But now both car seats are installed and can be used with much more ease.

more baby pics

We tired all the boys out today.
Here is Ewan asleep on our bed while we await for Galen to calm down from an autistic fit.

Another rainy day

It is another rainy day. The boys are playing- they always play something.. and I gave up and bought them each a new indoor activity toy. We also got Galen's new glasses today (with a duplicate pair).

Baby is still wiggly as ever and has a strong heartbeat. Mommy on the other hand is feeling tired and ornery.

I woke up and went back to bed several times this morning and even after I got dressed I went back to bed. I figure I must be sleeping hard now for a reason.

My house still smells of the wonderful pancakes I made for breakfast around 2pm.

good laugh

I just had a really good laugh followed by a really good contraction.
We are watching Gilligan's Island, and Galen asked about it... Dad said it was an old show, older then him.
And Galen asked "You mean 100 million trillion years?"

Galen Unveiled!

I just got a very revealing phone call this morning. Galen happily announced to Mike, while waiting for his last school bus of the year that he had orange pop at school on Thursday or so of last week.

That explains many things pertaining to this weekend.

And it explains this incident too: "We found some new frames for Galen's glasses, which is useful, because in an autistic fit this afternoon he threw his current ones out the car window, which were immediately ran over. (that was after he threw his shoes in the garbage and tried to walk to grandmas (ie run away)."

I really wish people would open their eyes to the studies on artificial colors and flavors and see what they are doing to kids each time they share/give candy or junk food. See study story here.
It is not just Mike and I and Galen's behavior anymore, there is scientific evidence for it.
Maybe the children need a sign "DO NOT FEED ME GARBAGE."

Sunday Night and All is Well.

not perfect, but well enough.

It was another beautiful day outside, with all the trees in blossom. The breeze was just enough to offset the early summer sun, and We, well at least Ewan and I, went to church. We picked up grandma on the way to save some gas.

By the time we got home from church It was nap time. Grandpa picked up Ewan to play with Ethan and Galen got all upset and tried to walk to grandpa's his old para found him (again, the second time in 3 days)... and sent her sister to the door to alert us. Mike was on the case.

Then he successfully kept Galen busy with some computer games. By dinner time, it was becoming fairly clear that Galen had walked through a wood tick nest or two. So we told him that the best course would be to cut his mop and then have a bath. That way it would be much easier to spot all the ticks, and indeed, we found 4 more just while he undressed.

But he now has a face... with out glasses. :)

And My fingers could use another round of soap to reduce the smell left from Ian's medical procedures tonight. The only kids that are still up are Galen, he wants a story and Ian, who fell asleep during his enema.