COUNTING BLESSINGS AND DAYS

It's been nice not to have any appointments or therapies lately. I feel like I am on vacation. Our Christmas was very nice; very quick and fast. There wasn't much time between Thanksgiving and Christmas, so maybe that's why it felt like a whirlwind.

We had not one, not two, not three, but FOUR turkey Christmas dinners delivered to our house. I wonder what kind of list we got ourselves on. :) They didn't all arrive at the same time, just random times by random people. A neighbor, and the rest were strangers. People can be very thoughtful and kind. I only wish we could be on the giving side of things more often. We just don't have a lot to give. I did make some fudge and gave it to our neighbors. One neighbor uses his snowblower and does our driveway, which is such a help because of Bill's bad back. Sometimes we'll send the boys out there to shovel, but they really have a hard time staying on task and remembering what they are supposed to be doing out there in the snow. You know, snow is for playing in, not working in...

Ryder's stomach is a little better right now. He has been VERY loving and wanted me to pick him up a lot today. He gave me a pat on the back and said, "Mammmaa". I just want to bottle up these precious times when he is more tractable--and save it for one of his crappy days.

Hunter has his first real playdate planned with two of his new-found friends (who have similar issues) on New Year's Day. These boys met through a "friendship skills class" offered by the school counselor. He is really excited. I think we need an advent calendar to count the days down! They will be sledding down our hill and having hot chocolate. The exciting part is that the boys' moms are coming and it will be so much fun getting to know other mom's going through similar challenges. Maybe it is I that needs a count-down calendar!

AUTISM NIGHT BEFORE CHRISTMAS

by Cindy Waeltermann

Twas the Night Before Christmas

And all through the house

The creatures were stirring

Yes, even the mouse

We tried melatonin

And gave a hot bath

But the holiday jitters

They always distract

The children were finally

All nestled in bed

When nightmares of terror

Ran through my OWN head

Did I get the right gift

The right colorAnd style

Would there be a tantrum

Or even, maybe, a smile?

Our relatives come

But they don't understand

The pleasure he gets

Just from flapping his hands.

"He needs discipline," they say

"Just a well-needed smack,

You must learn to parent..."

And on goes the attack

We smile and nod

Because we know deep inside

The argument is moot

Let them all take a side

We know what it's like

To live with the spectrum

The struggles and triumphs

Achievements, regressions...

But what they don't know

And what they don't see

Is the joy that we feel

Over simplicity

He said "hello"

He ate something green!

He told his first lie!

He did not cause a scene!

He peed on the potty

Who cares if he's ten,

He stopped saying the same thing

Again and again!

Others don't realize

Just how we can cope

How we bravely hang on

At the end of our rope

But what they don't see

Is the joy we can't hide

When our children with autism

Make the tiniest stride

We may look at others

Without the problems we face

With jealousy, hatred

Or even distaste,

But what they don't know

Nor sometimes do we

Is that children with autism

Bring simplicity.

We don't get excited

Over expensive things

We jump for joy

With the progress work brings

Children with autism

Try hard every day

That they make us proud

More than words can say.

They work even harder

Than you or I

To achieve something small

To reach a star in the sky

So to those who don't get it

Or can't get a clue

Take a walk in my shoes

And I'll assure you

That even 10 minutes

Into the walk

You'll look at me

With respect, even shock.

You will realize

What it is I go through

And the next time you judge

I can assure you

That you won't say a thing

You'll be quiet and learn,

Like the years that I did

When the tables were turned.......

Since everyone I know is struggling with maintaining some sort of economic cash flow, I thought I'd do my part and throw this idea out there for those that are looking for an easy, frugal gift for the person that has everything.

Here are some centerpieces that I made for some members of our family for Christmas. I don't think they ever view my blog, so I felt it was safe to post. :) I found everything at the dollar store, or in my own house. You can switch it up by changing plates (these are the heavy ceramic kind), candles, and the decor inside the goblets (goblets are upside down). I figured it would be good to use throughout the year with different holidays and themes.

END-OF-THE-YEAR VALIDATIONS

I thought I'd give an update on how each of the kids are doing lately. This may be boring for ya'll!

Mercedes: She continues to have Juvenile Rheumatoid Arthritis (the dr's aren't totally sure because the labs came back negative, but everything else points to it). She has to go down to Salt Lake again in 6 weeks for a checkup. She is hating jr high and the boys that go with it. She is a fun girl who likes to laugh and giggle. One thing we are working on with her is 'How to take a 3 minute shower' vs. her 30 minute shower. With her ADD she forgets what she is doing in a square cubicle with water spraying on her, apparently. :)

Hunter: He is in 4th grade, with casual friends. He has never had a close friend--and he's never had a friend over to play. I guess for him, he enjoys being by himself and not having that added pressure of being social. He was recently told by Dr Darold Treffert, an expert in Savant Syndrome, and a consultant for the movie Rainman, that he is an Artistic Autistic Savant. I hope that he will be able to provide for himself with this talent as he matures. There are too many starving artists out there. Hunter has recently taken up playing the ukulele. Don't ask me why. :)

Mason: He is doing great in 2nd grade. He was retained this year (an August birthday) and I'm glad we decided to do it. His self esteem is better being the oldest and biggest in his class. He is reading above grade level now--a super improvement from just a year ago! His IEP was the other day, and they are thinking he won't qualify for Speech and OT by May. He and Hunter take a special needs gymnastic class on Tuesdays, too. The instructors want the boys to learn a gym routine and participate in Special Olympics. Both boys are active in the Scouting program, too.

Ryder: He continues with gut issues. His school calls me often to come pick him up if he is having a bad day--usually it's because of severe gas pains. I wish we could get to the bottom of it...literally. He loves to give squeezes and pats on the back and is very loving, even though he has autism. That tells you that kids with autism aren't all the same. Some really are loving. He likes to be sneaky and at times will escape from the house and, of course, this creates a lot of drama in the family! I pray every day that angels will watch over him, because I can't be everywhere at once.

With the hubby, after several years of filing for disability, he was finally approved. It took an attorney to push it through. I feel validated now. This probably isn't something that people talk about in general, but I don't care. We have fought a long and hard battle which justifies a little celebration.

As for me, I recently started exercising in, yet again, another attempt to lose weight. With the new year approaching I will be taking a refresher course to get my LPN license current. And then we'll see where that leads. Bill and I might be doing a "role reversal". Me, the bread winner, and he the house-husband.

All in all, it's been a good year with some successes along the way. We still have a ways to go. My babies are getting older and bigger--if I had a super power I would squeeze them back down to when they were babies--oh, but for a moment!

INDESCRIBABLE PAIN

Ryder's pre-school picture (I forgot it was picture day, hence the shirt)

I am confused. The night before Thanksgiving, Ryder only slept for 2-3 hours. No fever. No cold. Ears are fine. He began screaming and crying earlier that day and was very inconsolable. The day turned to night, and he couldn't sleep. He was very agitated. I massaged his tummy, listened for bowel sounds with my stethoscope (didn't need to, because you could hear them without it), I "ran energy" on his tummy. It helped a little. He was very clingy and didn't want to be left alone in his dark room. He was terrified and sobbed until he couldn't catch his breath. As I apprached his door, I noticed it was shut all of the way. I assumed Ryder was scared, even though he had a bright nightlight. I just held him for awhile until I HAD to get some sleep. Bill's turn. He was in terrific pain, but could not express to me where the pain was. I assumed it was his tummy. He did have some gas.

The next morning was Thanksgiving day, and we were preparing to go to my mom's house for the feast. Ryder was hand flapping wildly(he normally does NOT do this) as if he were possessed. It was so scary. He would scramble up me and cling to me as if he were trying to get away from the pain or something. He would actually try to climb over whomever was holding him, like he was running for his life. It was so hard to see. We had given him some gas drops and a tiny bit of Pepto--but there was not much reprive.

In the van on our way to Grandma's we heard an enormous, deep belch from behind our seats, followed by vomit spewing all over. Luckily, Bill caught most of it with a blanket. "Roll the windows down!" the kids screamed. I breathed a sigh of relief, and Ryder seemed a bit better, until we got to Grandma's and the hand flapping and screaming started again. Grandpa and Bill gave him a blessing.

Ryder settled down and just layed on Grandma's bed all day moaning and swaying his head back and forth.

I wondered if I should have taken him to the ER, but this has happened two other times this past year that I can remember. The doctors will just send us home and say, "treat the symptoms" and "remember he will flap his hands, he is autistic".

Then came the diarrhea. It wasn't too bad, we've dealt with worse. It is so hard to see him in pain, and there is absolutely nothing I can do except pray. Since then, he has not been himself. Dark circles under his eyes, he seems to be unsteady and I wonder if some of this is related to seizure activity. His eyes were dilated. His lips have been chapped with dark dead skin. If the GI system begins with the mouth, then do the black lips have something to do with it? Or is it just fibers from his red blanket that he uses?

He finally slept on Thanksgiving night, with the help of Melatonin. The next morning he was hoarse from screaming. Yesterday he did not want to be held and was very quiet all day. It is as if he regressed back to when he was a baby. It's as if his brain gets "stuck" in a wierd gear and he can't eat or sleep.

Usually when he has gas pains he'll cry a little angry cry and he might rock or stim more than usual. But this is unreal. Last February, this happened for two weeks! After three dr visits and being sent home with heartburn medication, I had had it. No more. Stupid.

I'm still trying to figure it out. Diet? Probably. I need to pay more attention, I guess. I've been trying to contact the DAN dr, but he's been out for the holiday.

Sometimes I wonder why this sweet, pure, innocent child has to suffer this way. I wish I could take his pain away.

A DIFFERENT KIND OF THERAPY

I've been participating in the IAN (Interactive Autism Network) project and answering questions about each of our kids. It asks about all of the therapies, treatments, interventions, etc. that you do and whether or not you see any progress and/or success. I find it interesting that they consider "prayer" an intervention or treatment. 'Prayer' is its own listing (see below):

Treatment Name

Coenzyme Q10 ( CoQ10, CoQ, Q10, Ubiquinone)
DHA
Diflucan
Essential fatty acids
Lamictal
Magnesium Citrate
Occupational Therapy
Picture Exchange Communication System (PECS)
Prayer
Speech and Language Therapy
Vitamin B9 (Folic Acid or folate)
Vitamin C (L-ascorbic acid)
GFCF diet
Potassium
vitamin B 12 injections

Physical therapy

Magnesium

Zinc

I guess prayer could be considered an intervention, treatment or therapy. I just never thought of it that way before.

The Oxford Dictionary says prayer is "a solemn request or thanksgiving to God".

And here it is Thanksgiving time. We have a lot to be thankful for.

RUNNING ENERGY

The kids keep passing a virus around. Mason missed three days of school last week, and now Hunter and Ryder have it. They have fevers, red bumps on the very back of their tongue, a sore throat and headache. Sometimes I will "run energy" on the kids when they are sick.

Last Spring I took a class on Energy Healing Therapy. It is really interesting--how every living thing has energy and how we can focus that energy and turn it into a healing experience. Here is a little bit about it taken from www.quantumtouch.com.

Everything vibrates. When two things vibrate at different frequencies, there is a tendency for the vibrations to come together. Most often, the slower vibration will rise to match the faster frequency. There are many kinds of examples of entrainment: over time, similarly tuned electric oscillators will match frequencies; disembodied animal hearts when placed near each other and kept alive in a lab will all beat in unison; and when women share a dormitory, over months they will often start menstruating at the same time.

Healing is a fascinating process which is generally very poorly understood. While many people think they can heal other people, it is of utmost importance to realize that all healing is self-healing. Ultimately, cells heal themselves. Cells desire to be well, and given the right energetic, emotional and nutritional environments, they will do just that. The body has an extraordinary intelligence and ability to heal itself. My favorite definition of a healer is someone who was sick and got well; a great healer is someone who was very sick and got well quickly.--Richard Gordon

I've been trying to practice and study it and get my 60 credit hours in so I can become a practictioner. It is so calming and relaxing and I can certainly benefit from this bonus, too!

FIGURING OUT IDIOMS

Here is an example of what Hunter is working on in speech therapy using idioms. See if you can pick the correct answer!


1. Whenever people argue, Joe puts his head in the sand.

a. Joe thinks arguments are as much fun as a sandbox.
b. Every time people argue, Joe pretends he is invisible.
c. Joe tries to ignore people when they argue.

2. Every time I turn around, Martha has a new cat.

a. Martha has one cat after another.
b. Whenever I twirl, Martha gets a new cat.
c. I can't believe how quickly Martha gets a new cat.

3. Let's mend our fences before school gets out for the summer.

a. Before it's summer, let's make sure all our fences are fixed.
b. Let's make up before summer starts.
c. We should settle our differences before the summer starts.

4. An apology was on the tip of Katie's tongue.

a. Katie was almost ready to say she was sorry.
b. Katie had a sore tongue.
c. Katie was just about to apologize.

5. When Dad asks Jim to do something, it goes in one ear and out the other.

a. Jim doesn't listen when his dad wants him to do something.
b. Jim quickly forgets what his dad asks him to do.
c. Jim's dad can send messages right through Jim's head.

Actually, I don't have the answers, but I think "C" is a good one for all of them except #5. That would be "b."

MY ASPIE HUSBAND

Today I wondered, will I ever miss the things that drive me crazy about my Aspie husband? Or will those memories be a source of comfort and happiness someday when I'm old and gray?

Will I miss Bill's 11 pens in his right pants pocket?
Will I miss his giant pickle jar filled with quarters devoted to the USA Today's weekly edition of basketball stats?
Will I miss his endless aches and pains?
Will I miss the methodical way that he eats fried chicken-crunching and nibling ever so slightly on the tiniest of bones?
Will I miss his growing collection of crossword puzzles with each page finished in pencil and the time it took to finish it highlighted at the top?
Will I miss his quest for descriptive details?
Will I miss the way he can't hear his alarm go off?
Will I miss his hourly (it seems) bathroom episodes?
Will I miss the quirky way he ties his shoes and matches his clothes like Cousin Eddy?

Will I miss all of the receipts, trinkets, ticket stubs, and fast food restaurant napkins he saves? Gag.

In the present, I would miss his help in changing Ryder's diapers.
I would miss his taking the garbage out.
I would miss his help with bathing the kids.
I would miss his staying up late "just in case one of the kids wakes up".
I would miss his cleaning up vomit in the middle of the night after Hunter or Ryder has a seizure. I would miss the candy bar he buys me every time he fills his car up with gas.
I would miss how he holds the door open for me even when it really isn't logical.
I would miss having a walking dictionary.

AN EEG ATTEMPT FOR THE 5TH TIME

Ryder has a reputation at his neurologist's office for the record number of times an EEG has been attempted, with still no sleep. This was supposed to be a sleep-deprived EEG. As you can see, he is awake; he is in a drunk-like stupor, but he is awake. Before this final attempt, the doctor prescribed something that would aid him in sleep. There was a 10% chance that the medication would cause the opposite effect. Well, guess what... Ryder is part of that 10%. He was hyper and giggly and very "under the influence". As Mercedes and I were waiting in the waiting room, we kept hearing Ryder moan like a cow. Mercedes was concerned that they might call animal control.

The doctor decided to go ahead and hook him up to the EEG and do it anyway, even if he was awake. Well, guess what...he fell asleep. (Is that all we needed to do?!)

Last I heard, Ryder no longer held the record. A two year old had passed him up.


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IT COULD BE WORSE

I think to myself, "it could be worse" and it helps me feel better.

I could be waiting at a corner bus stop somewhere. I could be driving a Carol Brady station wagon. I could be back in high school. I could be pregnant (been there, done that). I could be giving a talk in church (*struck by lightning*). I could be a scientist working with lab rats (*shiver*). I could be camping (don't mind nature, it's just so much work with a family and a child that eats dirt). I could be swimming (well, drowning is more like it). I could be homeless without purse or script. I could be dressed up as an animal mascot outside a fast food chain. I could be in prison with......(I'll leave it at that). I could be blind. I could have cancer. I could be living in Antarctica. I could be in an asylum for the mentally ill. I could be at an "all you can eat buffet" with my father-in-law.

I feel better now. Life is not so bad.

NEW FOUND FRIENDS

We went to the Homecoming Parade yesterday. I love to people watch. We sat up a couple of chairs behind everyone and sat down to "watch".

Soon the parade began. The boys had their sacks ready. The croud pushed forward; stepping onto the street by several feet. There were alot of people attending. (Later I found out that they had a record turn out.)

Once the candy began to fly the kids started scrambling, jumping and waving. I was surprised at how many adults got into it, picking up candy, cheering, and waving.

Hunter and Mason tried to make their way to the front to catch the flying candy. They are timid by nature and non-competitive. Suddenly a lady elbowed Hunter out of the way and said, "You can't come up this way, this is our kid's spot!" I was shocked! The boys came back by me and wanted to go home.

Bill put Ryder onto his shoulders and took the boys down the street until they found a spot away from that lady. It was a spot right in front of a bar. There were some bikers there smoking. Each time the parade floats passed by the bikers would holler and wave until the people on the float threw the candy or toys at them. Then they would pick it up, and give it to the boys.

Isn't interesting that the stereotype is to avoid people who are different than you, who may look scary, or believe differently than you--but they are the most genuine and kind. They accept all. One of the bikers even said that he had a nephew with autism.

I think I'll join the Hell's Angels.

THE ANT & THE CONTACT LENS

The following is a true story I received in an email:

Lori was almost halfway to the top of the tremendous granite cliff. She was standing on a ledge where she was taking a breather during this, her first rock climb. As she rested there, the safety rope snapped against her eye and knocked out her contact lens . "Great", she thought. "Here I am on a rock ledge, hundreds of feet from the bottom and hundreds of feet to the top of this cliff, and now my sight is blurry." She looked and looked, hoping that somehow it had landed on the ledge. But it just wasn't there. She felt the panic rising in her, so she began praying. She prayed for calm, and she prayed that she may find her contact lens.

When she got to the top, a friend examined her eye and her clothing for the lens, but it was not to be found. Although she was calm now that she was at the top, she was saddened because she could not clearly see across the range of mountains. She thought of the bible verse "The eyes of the Lord run to and fro throughout the whole earth." She thought, "Lord, You can see all these mountains. You know every stone and leaf, and You know exactly where my contact lens is. Please help me."

Later, when they had hiked down the trail to the bottom of the cliff they met another party of climbers just starting up the face of the cliff. One of them shouted out, "Hey, you guys! Anybody lose a contact lens?" Well, that would be startling enough, but you know why the climber saw it? An ant was moving slowly across a twig on the face of the rock, carrying it!

The story doesn't end there. Lori's father is a cartoonist. When she told him the incredible story of the ant, the prayer, and the contact lens, he drew a cartoon of an ant lugging that contact lens with the caption, "Lord, I don't know why You want me to carry this thing. I can't eat it, and it's awfully heavy. But if this is what You want me to do, I'll carry it for You." I think it would do all of us some good to say, "God, I don't know why You want me to carry this load. I can see no good in it and it's awfully heavy. But, if You want me to carry it, I will."

God doesn't call the qualified, He qualifies the called.

TENDER MERCIES

Last night, working on a prompting, I took Ryder into the doctor just to have his ears checked. Sure enough, both ears were infected. His tubes fell out about 2 months ago, and I was hoping that he had outgrown this problem. Guess not.

On the way home, my right ear started hurting. I thought it was just sympathy pains for Ryder. As each hour passed, the pain became worse. After taking some Tylenol, then 2 hours later Ibuprofen; I was able to sleep. I slept for 30 minutes when I woke up with excruciating pain radiating down my jaw and to the nerves of my teeth. I prayed, boy--did I pray hard, and then I asked Bill to give me a blessing. As he was about to administer to me, my ear popped and gurgled and sounded like a witch's cauldron. The pain subsided. I prayed again.

I am grateful that Heavenly Father answers our prayers in desperate times. I am glad he is mindful of me. Another tender mercy in my life.

(Oh, BTW, the popping was my ear drum breaking. OUCH!)

LET GO AND LET GOD

I have been waiting for Ryder's birthday for a long time. When we found out he had autism, I told myself to give it until his 5th birthday--to push really hard with therapies and dr appointments, etc. I feel like I have done everything within my power to help him. Now it is time to "Let go, and let God".

Ryder doesn't show much emotion, but he did show a side to him on his birthday that I have never seen before. It was a wonderful birthday present to me on his special day.

We decided to take the kids to a park that we had never been to before. When we arrived, the kids exploded out of the van and ran to the swings. I hoisted Ryder up into the toddler swing and started pushing him. I must have pushed him too high, because he actually spoke. He wasn't too happy, but he said, "Mama--Noooo Noooo--Mama!" I was stunned. I quickly stopped pushing him and got him out of the swing. (I had to squelch the desire to push him even higher just to hear him speak again!) I took him over to a blanket that we had spread out on the ground. I had my camera and started taking some pictures. He was so attentive and alert, it was wonderful to see this side of him. I said, "Smile for the camera!" and he kept giving these cheesy smiles. Everytime we would put the camera in front of his face, he would smile.

He was happy on this day. And so were we.

These are moments that are so cherished and so rare.

AN ASPERGER DILEMMA, AGAIN...

I went with my sister down to Layton, Utah where my baby sister just had her first baby. But, before I left, I wrote down everything that needed to be done for Bill to take care of the kids and get them to bed, fed, school, meds, lunches made, orthodontist, etc. I was only going to be gone for 24 hours. I hesitate to proceed in my blogging at this time because I am so flaberghasted I don't know if I have anything nice to say!

Well, I did have a good time. That is something. It was fun to hold a newborn babe with thick black hair and a bow on top. (Madalyn Mae, cute as can be) I was able to spend the night in a hotel with my sis and we had a good night's rest. That is something. We ate out, that is something. And we traveled home.

On the way, I decided to phone Bill and see how everything was going. He had gotten everything ready for school the night before, like picking out their uniforms and making sack lunches. Ok, I thought, that was something. Now, for the frustrating part: He didn't wake up until 8am, decided that it was too late to take the kids to school, so they should just stay home. According to Mercedes he slept until 11am, then ate breakfast, took a dump for 1 hour, then got on the computer! What?! So, by the time I got home, two kids were still in their pajamas (it was 3pm) and they were all playing video games. When they saw me they were all hungry, and hadn't eaten lunch yet. I'm not trying to get my husband in trouble here, and yes, he did hear from me, boy, howdy...but what I'm trying to get across is that the Asperger mind is very different...He didn't even THINK about calling the school or me, or take the kids to school a little late, even...he figured that they would have to miss the whole day of school since they were late. (???) I shudder to think what this teaches the kids. No wonder breaks are few and far between.

He's seen the error of his ways, I must admit. Now he is doing "double time" and cleaning, bathing the kids, etc. Well, that is something.

What annoys me to no end is when people think he is "normal" or "neurotypical", and expect alot out of him, like a regular guy, but then he doesn't live up to their expectations and he is then viewed as "lazy", "irresponsible", or just plain "doesn't care". Story of his life. And here I am doing the same thing. I need to remember that.

GFCF Gingersnap Recipe

This recipe is very yummy. I must have had a craving for cinnamon and ginger--autumn spices--because these hit the spot!

GFCF Gingersnap Cookie Recipe (You can't tell it's GFCF!)

¼ cup gfcf shortening

½ cup sugar

1/3 cup molasses

2 egg yolks

1 ¼ cups cornstarch

¾ cup potato starch

½ teaspoon baking soda

¼ cup oil

1 teaspoon xanthan gum

½ teaspoon salt

1 ½ teaspoons ground ginger

¼ teaspoon cinnamon

For Topping:

1 Tablespoon sugar

Preheat oven to 350*. In large bowl, cream together shortening, sugar and molasses. Add remaining ingredients, mixing well to remove all lumps.

Drop by rounded teaspoonfuls onto greased baking sheet. Sprinkle well with sugar. Bake 8-9 minutes. Dough will be just set, with no wet spot in the middle. Do not overbake.

Makes about 3 dozen cookies.

FAIRY TALES WORTH WATCHING

I have to give a plug for two movies that we saw recently. They are both modern day fairy tales and are great family movies. Sydney White with Amanda Bynes (Snow White and the Seven Dorks,) and Penelope with Christina Ricci. They both have a good moral and made us laugh. Even Bill got into it.

STARTING OVER

The older kids are in school now and I breathe a sigh of relief. Today, it's just me and Ryder at home and four wild tabby cats that we caught in the garage. I called animal control and they came over with a trap. Last summer we were infested with mice, now this summer it is cats. Something doesn't seem right here. Story of my life. :D

Tomorrow Ryder starts school. And once again I send my baby off into this crazed world we live in. The first day of school is always bittersweet when they are little.

Mason was baptized and confirmed last Saturday. Or should I say "bath-tized" as he calls it. It was really nice to have family and friends there. Afterwards we had a potluck picnic at the park.

Ryder pooped out a penny the other day. He still has three cents left in him. I guess if we shook him real hard, they may come out. :D

School has begun finally. The kids were all keyed up and wired the day before. We rearranged bedrooms; put Mercedes downstairs and brought the boys up. It was a long day. It's been funny to watch Ryder lately. He keeps going into the bedrooms and looking around...trying to figure things out.

We had a FHE lesson on baptism for Mason (he'll be baptized on Sept. 6th) and we had these cards that spelled out the word B.A.P.T.I.S.M. We got to the 'M' and the kids were supposed to come up with the answer--a word that starts with the letter 'm' that has to do with baptism. The answer was "member". Hunter was raising his hand excitedly with the answer. We called on him and he said triumphantly, "the Moronic priesthood!" We all laughed so hard. Hunter thought we were laughing at him, and stormed off. We re-grouped, and explained why we were laughing. Then he understood. Maybe you had to be there, but it was funny.

A Tell-Tale Sign

As we were driving back from therapy today, Hunter saw a horse in a field and asked, "Why do horses swat flies away with their tails?" Then he added, "Why does a fly want to go in a horse's bum anyway? If they like poop so much why can't they just wait until the horse 'goes' on the ground?"

Hunter is a talker. His mind goes a hundred miles an hour--sometimes so fast his mouth can't keep up and he stammers alot.

I tune him out a lot, and well, maybe I shouldn't. He's just so dang exhausting when he gets going. I don't have a lot of answers to the questions he asks. I need to teach him how to use Google.

I'm a little worried about him this Fall with going back to school. There aren't supposed to be a lot of changes to his class (there are eleven 3rd graders and eleven 4th graders) --except the teacher's daughter was just diagnosed with cancer so she won't be teaching this semester. I haven't told Hunter that he has a substitute yet. His hair has just grown back in, and I'm afraid he'll start up with the trichotillomania again because of the stress of starting school.

Have you ever known someone that seems to have bad luck all of the time? They are always in the wrong place at the wrong time...

What is the opposite of the Midas Touch? Hunter has it. So does his dad. Life is never boring around them.

I remember one time when Bill and I were first dating, his car broke down, it began to thunderstorm, a cop pulled over to help, gave Bill a ticket for having an expired license plate, and Bill got his trenchcoat stuck in the hood of the car all in less than 10 minutes.

A sign of things to come??

I wonder.

ALWAYS ADJUSTING

It's been a crazy Summer. Just when you get used to having a break from the demands of the school system, Fall raises it's ugly head and it's time to register...register...register for school. Time to adjust again.

We've begun *officially* the gfcf diet. Mercedes is taking it the hardest. Every ten minutes she asks, "Why do we have to do this again? Can we have chocolate? Can we have pasta? No cheese?!"
She's been driving me nuts.

It's not too bad, yet. The boys had a hard time with the concept of wrapping a turkey burger with a lettuce leaf, but they'll live.

We have a huge chart with all of the prescribed meds and supplements from the DAN! doctor (& the shrink) attached to the fridge. We check mark each one as we give them. We are trying to clean the boys' tummies out before school. Their xrays showed that they were plum full of poop.

Here is a list of the current Rx's/biomedical interventions for the kids: (I could be forgetting some)

gfcf diet

Lamictal
Diflucan
Augmentin
DHA
EFA
Folate
Magnesium Citrate
Probiotics
Melatonin
Benefiber
CoQ10
Concerta
Zoloft
Vitamin B-12
Prozac
Aleve
Vitamin C
A Bunch of Minerals
Not to mention Bill's meds: Lexapro & Wellbutrin
Mine: Zoloft & Synthroid, B vitamins

We do pharmacies proud.

What Goes Up Must Come Down

McBride NewsFlash: Ryder puked all over last night and first thing this morning; followed by a wicked amount of diarrhea. He is resting comfortably now.

I'm getting good at cleaning up vomit. We have a Shark steam cleaner that I don't think I could live without. I don't know what I did before we got it.

Here is another handy tip: Instead of buying those expensive flushable wipes, buy a foam soap dispenser, empty the soap it came with, then fill it with a little baby wash and water. Now squirt some on toilet paper and do your business. Works great! So much cheaper, too! The boys were a little hesitant, but I put a label on the dispenser that says Fun Bum Foam. It helps. Anything to make life a little bit easier, I say.

A Little Dab Will Do Ya

Last week Ryder found a bottle of Elmer's glue and decided to partake. Bill and I were at the grocery store having our weekly "date" and when we came home we discovered the little dude had gotten glue all over him, happy as could be, until...fast forward 24 hours later...all heck broke loose. He was screaming, crying, angry,--you name it. He slept for only two hours that night; the rest of that time was spent on episodic bouts of moaning and crying. I hate feeling helpless as a parent. The culprit: Gluten. Elmer's glue has gluten in it.

That next morning at 4am we had to wake up Hunter and Ryder for their scheduled sleep-deprived EEG in Idaho Falls. Ryder, of course, didn't need waking up. What he did need was SLEEP and alot of it, but that was not going to happen. His EEG was cancelled but we were able to get Hunter's done.

After three days, Ryder is returning to "normal" and started having BM's again.

We are preparing for the inevitable gluten/casein free diet. I'm slowy taking away milk products and introducing Soymilk. It will be a big change for us. All of the boys need help with their tummies, so we will all participate. I sure hope it will be worth it.

HAVE A LAUGH

After a hardy rainstorm filled all the potholes in the streets and alleys, a young mother watched her two little boys playing in the puddle through her kitchen window.

The older of the two, a five year old lad, grabbed his sibling by the back of his head and shoved his face into the water hole. As the boy recovered and stood laughing and dripping, the mother runs to the yard in a panic. "Why on earth did you do that to your little brother?!" she asks as she shook the older boy in anger.

"We were just playing 'church' mommy," he said. "And I was just baptizing him.....in the name of the Father, the Son and in...the hole-he-goes."

Another Bike Lesson

Today is Independence Day. We went to a parade and met up with our friends The Budges, and had a good time.

The summer is flying by.

I had a scary thing happen to me a week ago on our way to physical therapy. I was stopped at a red light, getting ready to turn right. I inched forward and turned the wheel when our van collided with 15 year old girl on a bike. It was so scary. She was fine, but the front of her bike was ruined. This experience still haunts me because I see and hear it happening over and over in my mind. And then I hear the laugh. Ryder's laugh. He was in the back of the van and started to laugh when he saw and heard her hit the van! That is so inappropriate!! I am so thankful that she was ok. Later I discovered she was riding on the wrong side of the road, and that particular spot is a really bad blind spot. So I guess we were both at fault. So scary. With the price of gas now, more people are riding bikes so this is a good lesson to be more attentive.

Alternate Routes are OK

My father-in-law called early this morning after he woke from a nightmare about Bill. In the dream Bill was drowning and calling out for help.

To interject: Today was the day that Bill was going to go in and talk to his instructors about his missing class all of last week (back injury again) and not being able to catch up on assignments (learning disorder and Asperger's Syndrome). Bill was sure the instructors would counsel him to drop out because this is a very complicated and fast paced computer programming course.

Both of us had a hard time sleeping last night. I've seen this before. This is Bill's cycle.

Thankfully, his Dad came right over (he lives a mile away) with my Mother-in-law and they brought over breakfast and encouragement. My Mom-in-law brought flowers and went right to work planting them in the flower beds. I think it is her way of showing her love and support. It's hard to know what to do and how to help.

It was time to go. Bill asked me to come along. We went together to the college, once again. One entrance was blocked due to construction. We took an alternate route.

Thankfully, the professors were very understanding and willing to provide accomodations. After some discussion, we collectively decided that Bill should only take half the classes offered each semester, even though it will take him twice as long to finish.

With some relief, Bill went to withdraw from one of the classes even though the time had officially expired. They tried anyway-- and it went through! This may seem like a coincidence, but I know it is one of the Lord's tender mercies we get from time to time.

Turns out alternate routes are ok.

Up, Up and Away

Mercedes was able to go up in an airplane for free--something I did not know about. The program is called Young Eagles, endorsed by Harrison Ford, who is a member. So check it out! The program introduces your child to flying and afterwards they get a nice certificate... Anyway, here is the address: http://www.youngeagles.org/ It makes a fun birthday present and cheap, too!

Some Days Are Like That

This was written on a bad day:

I never really had any huge plans when it came to having a family, except for the part where I wanted ten kids. So, when my fiancé and I discussed having children, he explained how he had always wanted to have ten children and lucky me--I found my male doppelganger.

Having grown up a member of the Church of Jesus Christ of Latter-Day Saints (Mormons), we believe that families can be together forever. After we were married, we didn’t waste any time and 11 months later a baby girl was born. We didn’t know it, but later Mercedes would become the older sister of three autistic brothers.

Now here it is almost 14 years later and we are in the midst of this autism whirlwind. My fairy tale dreams have included four children, plus a “big child husband” (diagnosed with Asperger’s Syndrome at age 35). I am tired. My house is a mess. My world is isolating and confining. I live each day hour by hour, sometimes minute by minute. I cannot think about the future, for that will undo me. We only have four children, but it sure feels like ten on some days.
I ask myself a lot of questions but I don’t have the answers. No one around me has any answers. So, I turn to prayer as a comfort, a guide. In the meantime, I force myself to do the day to day tedious and unrelenting tasks hoping that I’m getting somewhere and that there is a point to all of this.

Some days are just like that.

The other day Ryder had his first-ever regular poo. I took a picture, (don’t worry, I won’t post it) and did a dance of joy.

Dealing with autism sure makes you get excited about the little things that most people take for granted. Who cares about a trip to Disneyland when your four year old had his first-ever well formed, non-smelly poo in his diaper? See? This is what I’m dealing with on a day to day basis. This makes for a very difficult time to relate to others. It’s lonely down here on the bottom. Literally.

REARRANGE THE LETTERS IN RYDER AND YOU GET DRYER

LOOK WHERE WE FOUND RYDER!

I BET THE ACOUSTICS WERE THRILLING

(Disclaimer: No little boys were harmed in the making of this blog.)

Speaking of laundry, Ryder loves to have the warm clothes dumped on top of him when he's on my bed. He snuggles up to underwear and socks alike, then takes a nap.

MAMA BEAR RANT

We finally got Ryder's test results back. Besides having four metal objects of unknown origin in his gut, he also has some MAJOR yeast and bacteria overgrowth. No wonder he is always bloated and gassy and in pain. His belly looks like those poor kids in Africa who are suffering from malnutrition. (Normally I'd say Ethiopian, but I'm trying to be politically correct here so I don't offend anyone). The dr has started him on Flagyl and Diflucan.

I asked the dr why the pediatricians don't listen to the mothers when they are the ones that do all of the research and know their kid's tummies. He said, "I get that all of the time from parents". I think that doctors everywhere need to be schooled and updated in Autism research and protocol. At least they need to humor the parents and pretend they are listening instead of saying, "Don't expect Ryder to be as bright as other children". I thought the hypocratic oath was "...first do no harm...." What about harming from a psychological viewpoint? To tell a child/parent that their kid is not bright is mean. What a Meanie.

Sometimes I feel like a Mama Bear. I only wish I could hybernate and live off stored body fat.

GREEN OUR VACCINES

Click on the link below to view the Green Our Vaccines rally in Washington D.C.:

http://www.cnn.com/video/?/video/showbiz/2008/06/04/bts.carrey.mccarthy.vaccines.cnn

How would it be to have a boyfriend like Jim Carrey? You'd have to wear Depends all of the time. :D

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.