THE HORSE BOY

This looks like a great movie called The Horse Boy:


How far would you travel to heal someone you love? An intensely personal yet epic spiritual journey, The Horse Boy follows one Texas couple and their autistic son as they trek on horseback through Outer Mongolia in a desperate attempt to treat his condition with shamanic healing. When two-year-old Rowan was diagnosed with autism, Rupert Isaacson and his wife Kristin Neff sought the best possible medical care for their son—but traditional therapies had little effect. Then they discovered that Rowan has a profound affinity for animals—particularly horses—and the family set off on a quest for a possible cure….The Horse Boy is part travel adventure, part insight into shamanic tradition and part intimate look at the autistic mind. In telling one family’s extraordinary story, the film gives voice to the thousands who display amazing courage and creativity everyday in the battle against this mysterious and heartbreaking epidemic and insight into how, in life’s darkest moments, one can find the gateway to joy and wonder.

THE OLD ALBION NORMAL SCHOOL-PRESENT DAY

For the Myers Family Reunion this year we went to a supposed "haunted" college, which used to be Albion Normal School back in 1901--a college that taught students to be teachers. It has been closed and boarded up since the 1960's. The town of Albion, Idaho has a population now of less than 200, so it is very strange to see these ominous buildings in the middle of nowhere. A family recently bought the place and they are now renovating it. The first building to be renovated is called Miller Hall. This used to be the men's dormitory. This building is available to rent out for family reunions. As a family, we saved up for a year to afford it--but we have a fairly small family (25 people). Plan to book it a year in advance!

Here is a link to their sight: http://albioncampusgrove.com/index.html

We had a lot of fun and we all walked away feeling like we needed more time to enjoy it because there is so much to do there. We stayed for two days (barely) and two nights.

Here are some photos:

THROUGH MY EYES

Take a look at this: Through My Eyes by Thanh Bui

A poignant song about autism.

GO LYTELY

Here is a catch-up blog. Last month, the boys had to be cleaned out up at the hospital. Their bellies were very full of fecal matter. Mason was worse, and had never been cleaned out before. Hunter was cleaned out about five years ago. It really helps. I am so sick of Mirilax and Ex-Lax and everything in between. We've tried behavior interventions, too, but I'm 90% sure their is a physiological problem.

Their dad just had a colonoscopy...forgot the follow up appt today though-- (Asperger's ) but we do know something is up with his bowels, too. Doc says the nerve endings don't look right... that would explain many things.

If we ever build a house, I would definitely install four toilets in the same room for all of the guys to do their thing. Let sweet freedom ring!!!

**By the way, the name of the medicine that is dripping into their tummies is called "Go Lytely". Anything but. Somebody was trying to be funny when they came up with that title.

I

STRUCTURE

WE NEED STRUCTURE AROUND HERE!

Can't wait for school to start!

DAMAGED GOODS?

I finally received Mason's recent psych eval results and unfortunately he still has PDD-NOS. I was REALLY hoping he had grown out of it with all of the therapy and stuff. His IQ has decreased, his attention is undiagnosed ADHD, (dr didn't want to diagnose him--although he said he's sure he has it) and tics and a major phobia have developed in the past year.

There isn't a day that goes by

when I don't ask why.

Sometimes I feel like I'm hitting my head against the wall over and over in the same spot and all of these therapies are pointless.

I really believe that the higher-functioning ones have a harder time with it all. Because they are so close to being neurotypical. If people didn't know, like my hubby's situation growing up, they would be labeled as "lazy", "stupid", "indifferent", "isolating", etc., etc.

I forget that the P in PDD-NOS stands for "Pervasive" . The definition of pervasive is: "to spread throughout". So, where Mason is age 9 (next month) but his social skills are that of a 4 year old, and his adaptive living skills are that of a 5yr 10 month old, I need to parent him accordingly. I need to remember not to expect him to clean his room the way other boys do at his age. I need to remember that he is like a four year old when he plays with other kids. This makes sense because all of his friends are younger than him. It's hard to raise a kid when you don't even know how old they are in all of the catagories.

So what happens when they get older and can't keep up with their peers? Or will they be able to keep up with tons of therapy and teaching?? So many unanswered questions. Sometimes I just want to have a break from the worry and wonder of it all. I guess that's a parent's job, though.

For those who would like to know, the following is taken from the Encyclopedia of Mental Disorders. (I would not catagorize PDD-NOS as a "mental" disorder, however)

PDD-NOS

Definition: Pervasive developmental disorders are a group of conditions originating in childhood that involve serious impairment in several areas, including physical, behavioral, cognitive, social, and language development.

Description
Pervasive developmental disorders (PDDs) are thought to be genetically based. The most serious PDD is autism , a condition characterized by severely impaired social interaction, communication, and abstract thought, and often manifested by stereotyped and repetitive behavior patterns. Many children who are diagnosed with PDDs today would have been labeled psychotic or schizophrenic in the past.

So in the past, I would have had three psychotic kids and one psychotic husband? Wow. Glad I live in this day and age. That is a tender mercy.

I still search for the answers why. I think it is just human nature. How do you NOT grieve everyday for what could have been? I need to get to that point somehow.

Sorry if this post is a bit of a downer. Yes, I'm still on my meds. :)

It all started this morning with the sounds of Ryder moaning in the front room at 6:30am. I went to him and realized he had puked out both ends (if you know what I mean) and that was the beginning of my day. It's all good though. I did manage to find a La-Z-Boy recliner at a garage sale for only ten bucks. And, no, it was not damaged by secretions like my father-in-law put it.

ADAM

Check out this trailer for a new movie being released next month about a guy with Asperger's. Looks like a great one! It's called Adam.

CRAZY BUSY DAZE

My blog has taken a seat on the back of the bus lately. I've been so busy this summer, having kids home, starting up developmental therapy for two of the kids, and being the secretary of the Idaho Autism Community, that I haven't had time for much else. And I really like my little blog. :) Hopefully when school starts up again I will have a little free time to do this.



Mercedes just got back from Girl's Camp. It's nice to see her mature and do better at camp...previous years have been hard for her. I still can't believe she'll be in high school in one short month! That is messed up.



Hunter is maturing too. He hates the fact that he NEEDS to wear deodorant and I remind him all of the time. His hair on his arms is getting long and he's freaking out because he does NOT want to be hairy like his part-Italian dad. (Actually, Hunter's hair on his arms is due to his developmental challenges...at least that is what the dr said... I guess kids with dev.delay often have abnormal hair growth...) Hunter uses my cordless shaver to shave it off.

He is constantly wanting to get on the computer to look up maps and then he draws them. Over and over and over and over.



Mason is getting so big. His feet are now bigger than mine, and he is 8 years old!! He is five feet tall. He and Hunter go to their special needs gym class, and he is like one of those giants in fairy tales that can barely move. The picture above is Mason coming off conquerer.


Ryder continues to have gut pain. We cannot afford to take him to Thoughtful House yet, but saving up. Medicaid won't pay for his blood work and labs that need to be done before we can go, so that is a real barrier for us. He is a fun guy except for when he is in pain. Then we all feel it.

PHOBIAS: JOIN THE CLUB

Mason, age 8, is the newest member of the anxiety/phobia club in the family. I noticed about 9 months ago that he seemed awfully jumpy around insects. Especially the flying kind. I was hoping it wouldn't develp into anything, but after this past week, I will seriously consider medicating this child if we ever go outside again.

A week ago Mason was outside playing and got stung by a bee. He screamed, flailed, and had a total freak-out experience. We got him situated and bandaged up, etc. The day after, his bee sting had spread out around the bite and was swollen, hot, and tight. I drew with a Sharpie on it to make sure it wouldn't spread anymore, and then I called the pediatrician. He had a bit of a delayed reaction he said. The dr also said it would be ok if he went on the first-ever camping trip that was planned for the next day with his dad, brother and grandpa.

I know... you can see what's coming can't you?

Well, long story short...They made it for several days and decided to come home early because of Mason. Mason was horrified because of a bee that flew in through the car window. He screamed, jumped out of the seatbelt, and lunged for cover behind Hunter, and in this process he got his legs tangled up in the seatbelt. More flailing ensued, I was told.

By the time he arrived home he had a rash all over his body--which Bill thought were insect bites, but it was clearly a rash. (Maybe from anxiety??) Mason was very jumpy and kept turning his head real fast as if he was looking for a bumble bee. He kept swatting himself. He asked me why he keeps hearing a buzzing sound in his ears when there were no bees around. This was very concerning to me.

Mercedes has a phobia of spiders which started around eight years old. Therapy and a small bit of Prozac has really helped her. Bill has a phobia of grasshoppers. If I let myself, I can freak out with mice. But I'm usually in check. :) Hunter has anxiety with just about everything loud and intense, especially movies. Also, dead birds. Whats up with the animal kingdom?

I was hoping just one kid of ours would not have to take anti-anxiety meds. Mason was my best bet. I need to talk to the psych dr, and as luck would have it, Mason actually has an appt with him tomorrow. Deep Sigh.

Anyone else have any phobias??

THE LATEST

We've been trying to adjust to this summer schedule and it has done a number on us. Hopefully the kids will get into the sync of things soon.

I haven't had much time to post things of a personal nature--but here is the latest:

I am the secretary of the recently formed Idaho Autism Community in our area. That keeps me busy. We have some events planned and we hope lots of people show up.

I've been fighting with the doctor to order some labs for Ryder so we can get him to Thoughtful House, but it's a no-go for now. In the meantime, we save money and I come up with a different approach. We see him in a couple of days...

Ryder has been having some bad days lately, and I know he's been finding gluten. I caught him with a chocolate Zinger all over him. The following day he whacked a package of animal crackers open and gobbled them up. It's been hard having the kids home because they will leave food out and Ryder will have free reign. We're trying--again--to teach them to "be aware".

To our amazement, we discovered Ryder can turn the bathtub faucet on when he decides to take a bath. Unfortunately, he does not discriminate between hot and cold, and now he has first degree burns on his lower half.

Mercedes is on the swim team this summer, so she swims for three hours a day, Monday-Saturdays. She thinks we've sent her to swimming boot camp.

Hunter has been very quiet lately. He's been in his own world now that summer is here. He just fixates on maps, telephone books, MapQuest, GPS's, and drawing his own maps.

Mason is obsessed with video games, so I've had to LIMIT him A LOT. I've had to limit his father, too! What a bunch of amoebas when they're together!

Picture: ***Ryder fell asleep with a cup in his mouth. **:)