HANG ON

School is out tomorrow. The kids can hardly contain themselves.

I wish I was as giddy as they are. I'm mentally preparing for a messier house, a bare pantry, and "I'm bored" vocalizations.

Mercedes will be on the Pocatello Swim Team just for the Summer; Mason starts flag football this week, and Hunter graduates from 2 years of PSR and weekly counseling. The boys will be taking more Speech and Occupational therapy, and to Ryder we add physical therapy and developmental therapy with those. We will manage to stay busy, I'm sure.

Bill works weekends now and goes to school full time. Who knows what's going on with him. I've just got to hang in there until mid-July, and then he can help out more when the Summer semester is over.

Hang on for the ride, I tell myself.

Husky Pants

Mason received 2nd place in a patriotism essay that he wrote (with help). When I picked him up from school he climbed into the van and said, “I won 2nd place on the 'A' 'S'. I asked him what was an ‘A’ ‘S’ because in my mind AS means Asperger's Syndrome or Autism Syndrome. Finally we figured out he meant "essay" (SA). That is an example of how his brain works. I guess it's like dyslexia. He does say the funniest things sometimes. For instance, the town Lava Hot Springs, he calls it "Hava Lot Springs". This is all related to his Verbal Learning Disorder.

Recently we had him tested for Auditory Processing problems. He did well except he bombed on the part where you hear different pitches and tones. I wonder if he is tone deaf. He also couldn't finish a part of the test where there is extranious noise with two sentences spoken at the same time. He couldn't even complete the test and just shut down.

He's a funny kid, though. I see how he uses humor to cover up his mistakes. He loves watching old movies like Abbot and Costello, Martin and Lewis, and the Three Stooges. He copies their humor. He particularly likes what he calls "husky" guys. Which reminds me, his pants are husky pants (*say with emphasis*) and he thinks that's cool. It's the only way I can tell Hunter and Mason's pants apart. That's why I think they're cool.

BEING NoRmAL

My ability to recognize what is "normal" or "neurotypical" is diminishing. I used to do alot of babysitting when I was growing up and being the oldest of five kids-- alot of babysitting jobs came my way in the community. I've taken child development classes and taught children's classes in church and art, so I think I have a pretty good idea. Or at least I thought I did. The longer I'm around my kids and hubby I think I'm getting used to weird behavior. But then again, maybe no one is really "normal". We all have little idiosyncratic behaviors that we do, but we know how to hide them well from our peers. For instance--when I'm folding towels, I like to have the tag on the inside. I also don't like people touching the palms of my hands. A handshake is ok, just nothing else. (Tell that to my sisters who like to annoy me by trying to hold my hand). As a kid I tried not to step on the cracks in a sidewalk. But haven't we all tried that as kids?

Last night Hunter had some seizure activity. He has had two complex partial seizures so far this month. They always manifest as severe headaches in one spot on his forehead. Sometimes he'll have nausea with them. Tylenol didn't help. Ibuprofin makes him hyper, so I can't use that. I did some Quantum Touch on his head and rubbed peppermint essential oil on it and after an hour he was back to normal. His normal. And here we are again, talking about what exactly is considered "normal".

Here is the definition of the word normal:

Conforming to an accepted, usual, or typical form, model, or pattern.
Free from disease, disorder, or malformation; specif., average in intelligence or development
mentally sound

CALL ME HOPE

A change in the schedule is fast approaching. School is out on May 30th for the older three, and Ryder's last day is May 22nd. This is such a busy time trying to wrap things up with school programs, activities, etc. Every May I want to enjoy the Spring weather before the heat sets in but we are always so busy. I have yet to make it to the park to walk along the track. I was about to today, but Hunter woke up with a sore throat, headache, and chills so he's home with me.

Bill started his Summer semester today. He's not quite finished with a couple of assignments from Spring semester because he requires so much extra help from the tutor, other students, or his instructor. There's nothing worse than having that constant anxiety looming over you--'Is he going to make it this time?' His instructors know of his Asperger's and other struggles, and so far they are being really patient. Bill is always hopeful and optimistic, I have to give him credit there. In all honesty, I don't see him finding a job as a computer programmer. He would need too much supervision. I do hope I am proven wrong.

It seems as if the only thing I am hanging on to is hope. I remember when our pediatrician told me when Ryder was just 18 months old, (and after repeated attempts to get him to diagnose Ryder with autism) "Don't expect Ryder to be as bright as your other kids." Where did that come from? I was so infuriated. How dare he take away my hope like that. I lost some respect for him that day. We can always hang on to hope. The definition of hope according to Wikipedia is:

***Hope is a belief in a positive outcome related to events and circumstances in one's life. Hope implies a certain amount of despair, wanting, wishing, suffering or perseverence — i.e., believing that a better or positive outcome is possible even when there is some evidence to the contrary.

I think hope is a good thing.

A NEW VISIT, AN OLD VISIT

The big day that I've been waiting for finally arrived. Our appointment with the DAN! doctor was a success. After looking through all of Ryder's medical records, labs and tests he told us that Ryder definitely has an underlying mitochondrial disorder. He showed us which labs were abnormal and told us what to do and where to start. He's starting on Vitamin C, Folate, Carnitine, Zinc, Magnesium, Calcium, etc. He wrote a script for a UA, stomach x-ray, and bloodwork. Then, based on those results we'll go from there. He may want to do a muscle biopsy and colonoscopy in Texas at Thoughtful House. He says they are one of the best in the country.

So now I've been brushing up on my biochemical knowledge which is very sparse. It never made much sense to me in school, but I did enjoy drawing the mitochondria and cell diagrams. That was the highlight. With much dismay, I will be revisiting Mr. Jacobson's 10th grade biology class--where Mr Jacobson, in all of his glory, waited 2 years for a turtle egg to hatch.

And now for your entertainment, below we have Hunter and Mason showing off their dancing skills.

GOOD NEWS

The kids are getting the jump on summer. This was taken two weeks ago when the weather was still trying to figure out what to do. Notice how red their bodies are. Part of that is because of the temperature, friction, & allergy. I can't believe they put the sprinkler on underneath. (Hunter's fixation is with sprinklers). Look how pudgy their bellies are in the lower quadrant. This all has to do with the autism and GI issues. They are constantly packed plum full of stool--no matter what I try.

Good news today: The grant that I applied for 6 weeks ago was approved and not only for Ryder, but they had a generous donation and there were monies available for Hunter and Mason too. Yippee!!! Many thanks to the National Autism Association. $1500 per child! Now we can get them in to see the DAN! Dr in Utah. Hopefully their guts will get cleaned up. Conventional medicine has failed their little (or big) tummies.

Tactics (or Tictics?)

Ok. Call me weird. I really like watching Ghosthunters and A Haunting. I guess I like feeling a bit scared and on edge. Of course I have to put on a cartoon or watch the news afterwards so I'm not too freaked out. :0)

Before Hunter was on his anti-anxiety meds he would freak out if you happened to say the word "ghost" or "haunted house" or "scary story". He would scramble up on top of you and start doing his vocal tics--like continuously clearing his throat. Sister did this too, except with the word "spider" and cow mooing sounds. She doesn't freak nearly as much as she used to since Prozac and finishing The Coping Cat workbook.

What is it in the mind that makes us like being scared? Is it a rush of adrenaline? And if so, does the adrenaline make Hunter's tics worse?

Sometimes I'll go for a walk in the cemetery and I know the boys will stay with me on the walkway because, according to Mason, "Dead bodies live in the ground." With this new knowledge they are bound to stay on the path and keep up. No problem. I use what I can.