Feb 27, 2008


Today was a busy one. Let's see if I can make the longest run-on sentence:

Woke up at 6:30, showered, dressed, started a load of laundry, applied make-up, woke up Mercedes, peaked in on Ryder who was fast asleep, got the boy's clothes ready, went downstairs to wake up boys, discovered Mason already up and half way through the movie Star Wars, woke up Hunter, tripped on toy on floor, checked email, went upstairs and helped the boys put their uniform on, woke up Mercedes again, told Bill to turn off his alarm, emptied the dishwasher, got the boy's meds out, sat down, looked at schedule, kids made their own cold cereal, took kids to school, called Ryder's school to tell them he will be absent due to pink eye, went to Walmart, talked to mom on cell phone, went home, cleaned up the upstairs, puttered around, got Ryder dressed and fed, checked email (I'm an addict), talked to Bill who has been in bed with a migraine, ate yogurt and string cheese for breakfast, (yes--it is still morning!), called city traffic engineer to see about getting an "autistic child" street sign, searched for Ryder's immunization record, transferred laundry, picked up kids from school at 12:20 (half day), grabbed fast food, ate in car at dentist parking lot, Mercedes had dentist appt--two teeth extracted and two cysts drained, drove home, checked on Bill and Ryder, Bill was studying, fed Ryder, put him down for a nap, went to pick up Hunter at counselor's office, discussed therapy plan, talked to PSR worker about new PSR worker, dropped off Ryder's birth certificate for Center, drove home, filled out autism questionnaire online for 2 of the kids, (more to do), talked to sister on phone, talked to mom on phone, talked to Father-in-Law on phone, got dinner on stove, got Hunter ready for Scouts, ate dinner, got ready for a school family meeting for Title 1, took family to school, attended meeting with blurry, tired eyes, couldn't see the speaker, at least I could hear, gave kids medicine, eye drops for pink eye, wiped a dirty bum, decided to do bath night tomorrow instead, tucked one kid in, waiting for the other to wind down, got ready for bed myself, checked my messages, and now, here I am blogging until American Idol is over and I can watch what I recorded without the kids interrupting. I'm done. G'Night!

Feb 25, 2008

Breakdowns, Meltdowns, Shutdowns, Oh My!

It's been one of those days.

The old Hunter is back today. He woke up this morning with a nasty headache and his speech was slurred. He wet the bed--or pull-up, rather. That is just too weird that he has regressed and back in Pull-ups. He has not worn a Pull-up since he was 4 years old! He'll be 9 in April! It's got to be the medication. I called the nurse and she said she'll move up his appt in March. She'll call back tomorrow--they are right in the middle of moving the office. I kept Hunter home from school today. I forgot to give him his Concerta, so he has been a holy terror after he "woke up" from the after affects of the seizure.

Bill came home early from school today with a migraine. He had a weird breakdown of sorts last night after we watched the movie, 'What's Eating Gilbert Grape'. (Leonardo DiCaprio plays an autistic boy and does an awesome job.) Bill was sobbing uncontrollably, shaking, and couldn't talk. These breakdowns occur on average 2 times a year. I think that is where the migraine came from. I remember when we were first married and these breakdowns would happen. It was really weird. I've never seen a grown man do that before. It takes hours for him to get back to normal, and he usually falls asleep right afterwards.

Mercedes had her own little shutdown this morning before school. I kept telling her to hurry, we were going to be late, and each time I would open her door to remind her, she hadn't budged. She would just stare at me, not saying a word. I became very upset with her and ended up just taking Mason to school. When I returned, I asked her why she was acting that way. She just said she didn't want to go to school and she was distracted and couldn't think of what to wear and didn't know where her books were, etc. Looking back, I can see how much she is like her dad that way. If I try to hurry him in any way, it makes things worse because he'll fumble, get anxious, and distracted. Perhaps that is why Bill makes such a production out of assembling his clothes and laying them out the night before. It is like a ritualistic ceremony. And he does NOT or CANNOT be interrupted or he gets flabergasted and annoyed. (You see, it takes concentration to correctly organize 11 pens in his pocket along with the pocketknife, wallet, erasers, checkbook, cellphone, etc., am I missing something?)

I'm always learning new things.

Feb 24, 2008

The Man Under the Bridge

Today is Bill's 39th birthday. I can't believe it. I'm not old enough to be married to a 39 year old!

Ryder has pink eye and a cold on top of that, so I'm staying home from church with him. Bill took the other kids.

The other day I went grocery shopping when at checkout I smelled a pungent odor. This odor was reminiscent of a trip to San Fransciso when I was a teenager. As it assailed my nostrils, suddenly a mental image came to mind of a homeless person. My eyes darted around, hoping to catch the subject from whence it came. Lo! A man in the next aisle, tattered and disheveled, was bagging his groceries. I was intrigued. So intrigued, that I followed him as he slowly pushed his cart of provisions out the door. I was careful to avoid the backdraft. He found his way ever so slowly to a beat up vehicle from the 1970's. I followed him down the street, wondering if he lived under a bridge somewhere. We parted ways at the intersection.

I've always been fascinated with different people. People who don't fit society's "norm". I wonder what events have taken place in their lives, what trials and tribulations they have had to endure--what they have overcome, only to live another day. They are filled with stories of interest and intrigue. Stories we can learn from if we stop avoiding the differences and embrace the similarities.

Feb 20, 2008

The Rabbit and the Bull

I had a thought today, but now I can't remember what it was. I guess I'll just give an update.

This morning Hunter woke up soaking wet and I asked him if he wet the bed. He said, "No, I sweat the bed!" This happens quite often. I can't wait until our appt with the new pediatric neurologist--the end of March. Could be seizure related. Poor Mason. If Hunter "sweats" his bed, he climbs in Mason's bed. Then Mason wakes up wondering why he is all wet.

The kids are all getting tired of Hunter's relentless Hairspray dancing and video playing. In fact, I saw Mason getting into my dresser drawer where I hide the gum, and I thought he was sneaking some. When I went to look inside, I noticed he had confiscated the Hairspray DVD and hidden it in my drawer. He must have grabbed it when the unsuspecting Hunter was distracted. I have yet to hear a complaint from Hunter though, who is now drawing Hairspray kids on the blackboard in the kitchen.

I talked to the psychiatrist who suggested we try Straterra. I'm not sure if that will work because when Bill tried it several years ago it made him too focused and obsessive. I remember that he organized all of our videos and DVDs in alphabetical order, right down to the genre, rating, actors, etc. All I can do is heave a huge sigh. I sometimes think life would have been alot easier for them if they lived 100 years ago when life was slower and you lived off the land. But then again, I could see Hunter becomming obsessed with digging a cellar in case a twister came. He still thinks life 100 years ago was in black and white and Aunt Em was a real person.

Mason had his first basketball game and he did a really good job. He made several baskets and you could see the pride creep into his face. During the game as Mason was running up and down the court, Hunter asked him, "Do-you-want-to-get-a-milkshake?" To which Mason replied out of breath, "I'm a little busy right now, Hunter!".

Kinda like Bugs Bunny asking for directions and the bull is right there.

Feb 18, 2008


An except from my journal November 2007:

I like to take the kids to speech therapy and just hang out in the waiting room. It is very entertaining to watch all of the different kids coming in and out of the door. Some you know exactly what condition they have, and some take a little more analyzing and observing. They are so unique and not one of them is like another, even if they have the same diagnosis. One boy comes in with the aide of his driver, and promptly lies down right in the middle of the floor (for all to trample on) and goes to sleep until his therapist wakes him up. Another heavy-set boy comes in and eagerly searches for the TV and what movie is playing. He asks the receptionist to turn the captions on. A 12 year old girl sits on the couch smiling and staring with her mouth gaped open to all who enter. She immediately goes and sits next to any adult that enters, and turns to them, just smiling and staring. Then she returns to her own seat, not saying a word, and not having to, because her eyes say it all. One boy cries out every now and then for his mom, very anxious and worried that she won’t come. You can tell he has autism.

A lot of the kids wear glasses—the kind that magnify their eyes. I wonder if we look with our spiritual eyes we would see how magnified their spirits are. I often ask myself “Why?” Why were all of these kids born with such challenges and trials? Is it just to teach others around them the real meaning of love and compassion? I hate to think that we neurotypicals are that bad off that we would not learn compassion without a guinea pig to practice upon…unfortunately I’m afraid it’s true.

Sometimes I try to imagine the Savior and how He would embrace these kids… How He would laugh with them, teach them, play with them. These kids have no sin, no guile, no secrets, no second agendas. They are pure in heart and spirit and they are the children that are spoken of in the celestial kingdom. They are the ones that will usher in Jesus Christ when He comes again to rule upon the Earth. They are the ones that prepare us to meet the Savior.


I am so frustrated with the medical community. What am I supposed to do with Ryder's stomach pains? It grates on my nerves when he constantly screams and is agitated, irritable, and he himself is frustrated. A 4 year old shouldn't have to be in pain like this.

Yesterday I noticed that he had started grinding his teeth again. He holds alot of tension in his jaw and he starts grinding. I'm used to it now, but that's a great way to have people in public comment or stare or walk away briskly. The sound is not very welcoming. He has broken so many pencils, pens, CD's, DVD's--you name it--because of this overwhelming urge to chew and bite down. He even chews up the chew toys that his therapists give him; within a day. I remember a long time ago his speech therapist told me that we hold alot of tension in our jaw, and our jaw is our strongest muscle. My finger can attest to that.

Feb 17, 2008

More of the Same

The other day, Mason and I were in the van waiting for the rest of the family to come so we could run errands. As we were waiting, Mason spotted our address by the garage door. He asked, "Mom, is that our house number?" I said it was. Then under his breath I heard him say, "Hmmm...I'll have to write that down..."

Hunter has been having alot of wetting accidents at night. I don't understand why, and neither does he.

Ryder's gut issues are getting worse. They definitely got better, but now it's building back up again. (I had to take him home from church today. He lasted about 30 minutes in the foyer, and that's it.)
I sent an email to the Utah Biomedical Center in Provo and they responded. They do not except Medicaid, but the secretary was forwarding the email to the dr. Now waiting patiently.

Hunter has been very manic lately. His tics are worse.
We managed to get all of the homework done without too much stress, so that is nice. I have been doing alot of laundry lately.

Feb 13, 2008

Shave and a Haircut

I guess it's official...I have a cold. I've been a little more tired than usual, and I especially notice how taxing my life is when I am under the weather.
Tonite is grooming and hygiene night. I cut Ryder's hair with Bill's help to hold him still. Then off to the showers go the kids. Next comes the cutting of the toenails and fingernails, cleaning out the ears with Q-tips, and applying eye drops to the pink-eye-affected-children. Mason is so ticklish that cutting his toenails turns into some sort of hysterical site ahead. He needs some added help because of his gross/fine motor and coordination difficulties. Then the meds need to be administered, clothes picked out for school tomorrow...etc. etc.
Oh great. I just heard the words in a William Shatner voice: "Mom--need..some..help..with... bum." I will continue this saga later.

I'm back. I'll spare the details.

Yesterday I took Ryder to his pediatrician and discussed his tummy again. He gave him a script for acid reflux to see if that would help. Also a script for some stool studies, and finally a blood draw to rule out celiac disease. (Again). His BM's are so foul smelling that I actually got nauseas alone with him in the room the other day. I have a strong constitution normally, ...but it was hanging by a thread! We'll see what turns up.

I met with Hunter's new counseler today. It will be nice for him to meet with a fellow guy. He fits our family well and loves 'The Office' too. He is a jovial man and I could tell this will be fun for Hunter once he warms up to him. Hunter kept having this grin sneak up on him when we met, so I know this will be a great match.

Mason is bugging me to let him on the computer, so I'll close for now.

Feb 12, 2008

Q: How many ADHD children does it take to change a light bulb?

A: Let's go ride bikes!

Feb 11, 2008

I hesitated to take Ryder to school today because he was awake at 4am with gas pains again. After awhile, he seemed to calm down and he was happy while the rest of the kids got ready for school, so I took him too.

I waited in the school parking lot for about 15 minutes after I had taken him inside. Good thing I did because-sure enough-his teacher called and said he was screaming and posturing (doubled over pressing his abdomen on the table). By the time I got inside, he had found some jingle bells and was distracted enough to stop crying. I took him home anyway.

I made an appt with his pediatrician for tomorrow morning. We'll see what happens. If he was doing so much better being on amoxicillin, then I wonder if he needs a stronger antibiotic or a profilactment treatment. He is really bloated again and in pain.

At the dietician's this afternoon, he weighed 33 pounds so there isn't a worry anymore about his weight loss. I really think that he has an overgrowth of bacteria in his colon because his appetite is alot better now after the course of amoxicillin. Of course, I'm just guessing. I wish I had all of the answers. Being a detective is something that I only wanted to be when I was eight years old.

I picked the kids up from school and off we went to Speech therapy. Hunter freaked out because he had forgotten to bring a change of clothes. (He can't stand his school uniform) I did not give him his Concerta this morning because of the increased obsessiveness and tic behavior. He is bald on one side of his head now from constantly twirling his hair--and using a pencil to rub his scalp. As a result, he has dark pencil marks on his bald spot. I will be calling the psychiatrist to figure out what to do next. Maybe he needs a different med for the ADHD. He needs something for his hyperness because he cannot concentrate in school and he drives everyone absolutely batty without it. This behavior kind of snuck up on us. Now I am reminded of the Hunter before medication.

Feb 10, 2008

Our House of Bricks is Still Standing...

We had my sister's four kids over to spell my mom off while the parents were out of town. It ended up being a sleepover after sis called and wasn't going to be back until today sometime.
It's been a change in routine and I'm going from room to room in a daze. Hunter and Mason have been playing hard and leaking stool at the same time. So everwhere I go I smell poop. Drives me nuts! I've given them their poopy meds (Miralax) and now we wait for it to work. Their cousins are pretty patient with them and the smells. It's weird, sometimes it just flares up. Hunter peed the bed again, apparently unaware of any ictal sensation.

I did not give Hunter his Concerta yesterday to see if it was contributing to his obsessiveness and tic behavior. It's hard to tell now since we have had the cousins over--with the change in routine and all. I'll have to try again next weekend. I did notice Hunter was extremely hyper--going from one activity to the next, his mind racing--and he couldn't wind down at night without the aid of Melatonin.

Ryder has been pretty good considering the extra noise and people around. He was screaming at 3:30 in the morning until 5am with stomach pain and gas. I am at my wits end with his stomach pains. We've done everything I can think of except the last resort--and that is seeing a biomedical doctor in Provo, Utah. Medicaid won't pay for that though. I'll call his local pediatrician and inform him that the amoxicillin helped a little, but he has still had occasional gas pain and he also threw up while on it and had diarrhea. It could have been a viral bug--I bet that's what it was--because Hunter threw up one night too. Then he was fine afterwards. The other kids didn't catch it, which then it makes you wonder if seizures have anything to do with it. The only time Hunter and Ryder have ever thrown up has been during their sleep. What does that tell you? Seizures? It's frustrating.

Feb 8, 2008

Seizures today

Here I am at 9:30 at night blogging. I met with Hunter's PSR worker this afternoon, like I always do on Fridays and we had our consultation time. She's amazed how Hunter can remember things like birthdays and cities and different facts but he can't remember his multiplication facts from one day to the next.

About 20 minutes ago I saw Hunter in the kitchen drawing on the chalkboard a bar graph of the "Miss Hairspray" pageant winners. He was standing in a puddle of water and his pants were all wet. He said he just peed his pants and he doesn't even know why. I asked him some more questions and I guess he blanked out for a few seconds (complex partial seizure). He has been twirling his hair quite a bit in front and there is a big bald spot now. He cannot stop. (Tourette's). He said he blanked out while twirling his hair and peed. I'm thinking that maybe this morning at school there was more than one reason he became incontinent. Yes, he doesn't raise his hand to tell the teacher he has to go, but if he had a seizure, he wouldn't know until it is to late! I don't think this Lamictal works. He is on 100mg now and it has taken 8 weeks to get up to that dose. I've got to get some sleep.
Mercedes played the rebel this morning. She did not want to go to school because it was the annual Speech Festival. She had her speech all memorized, but I guess she felt the need to express herself. I think her nerves got the best of her.

At 9am I took Ryder to Developmental therapy, dropped him off, then met with one of the employees to go over the Quality Management stuff. Afterwards, I drove to the school to see if I could catch the boys presenting their speeches. As I passed the bathroom area, I felt a familiar spririt and turned and I saw Hunter there against the wall in tears. I guess he had a wetting accident because he felt like he couldn't leave the classroom to go to the bathroom. He was in a different classroom with a different teacher--and of course--he has a very hard time with (social) change, let alone raising his hand to ask for help.

So, here I am back at home with Hunter & Mercedes. She is now playing Cinderella and cleaning the house as punishment. She is also grounded from electronic devices, computer, and phone. And she is still happy.
I've got to go now and drop Hunter back off at school, then pick up Ryder from therapy, then back at school to see if I can catch Mason presenting. Poor kid, he's always left out.

Feb 7, 2008

The Diagnoses

Hmmm...this could be very therapeutic for me. This should be in an autism handbook...when you find out your child or children have autism, the first thing you should do is start blogging. This will save you time and money. How, you ask? You won't have to waste time and money seeing your own personal shrink; you can just blog when the kids are in bed and get things off your chest.

I'm always writing in my journal, so why not do it online? My life is an open book anyway. After finding out that three out of four of our children have autism, and my hubby has Asperger's, I can't pretend anymore that things are okay. I'm tired of trying to be a neurotypical family and "fit in" with society. I am learning to embrace the differences and ignore the ignorant.

So, here is the run down or the low down:

Husband-William age 39 diagnosed in 2004 with mild Asperger's, ADD, mild Non-Verbal learning disorder, Obsessive Compulsive Personality Disorder, depression and anxiety। थे प्स्य्चोलोगिस्ट लेटर मदे अन अप्पोइन्त्मेन्त् विथ मी टू दिस्कुस अल ऑफ़ ठेस। शे सैद ठाट विलियम इस वैरी कोम्प्लिकातेद।

He has an IQ of 130, speaks three languages and dabbles in three more. Don't get him started with Japanese! He was in the Army National Guard for 11 years and received an honorable discharge. He is an Eagle Scout. He has a Bachelor's degree. He is currently attending school (again!) to see if this time, he can succeed in finding a career. (...a very long story...) His interests include, basketball, basketball stats, crossword puzzles, reading, and lateral thinking puzzles. (Boring!!) He always carries around at least 7 pens in his pocket at any given time. It's usually 11 pens. I ask him why and he says, what if one runs out--and what if I want variety? (Oh brother, can't argue with that.) With the anxiety and Asperger's comes the time spent in the bathroom dropping some friends off at the pool. Every day this occurs, for an hour a day, and sometimes longer--if we have social plans. He is a pack rat. He always carries a giant backpack with him and a giant water bottle----"just in case" or "what if I run out?". He really needs some psychotherapy but we can't afford it.

Mercedes is our oldest, age 12. She is a good helper to her autism brothers and her Aspie dad. She was diagnosed with Anxiety, ADD, and Central Auditory Processing Disorder almost two years ago. She loves reading, swimming, watching movies, playing the piano and writing stories.

Hunter is the oldest boy, age 8. He is--and always has been--a handful. He was diagnosed in 2006 with PDD-NOS, Tourette's, ADHD and in 2007 with seizure disorder. He is extremely creative and what his counselor calls--"a quirky kid". He is a cub scout and a budding artist. His art can be viewed online at kindtreeproductions.com. His current fixation is Tracy Turnblad from the movie Hairspray. I had to hide the real hairspray. It didn't help much; now he is using air freshener. But we need the air freshener for the poopy bums! It's so frustrating...

Mason is the alpha male age 7. He was diagnosed with PDD-NOS (how two brothers who are totally opposite can have the same diagnosis is beyond me--this prooves how long that spectrum really is! He also has verbal learning disorder and CAPD (like sister). He loves video games and lining things up. He is a BIG dude for his age. He is taller than Hunter by an inch and broader. In the summer he likes to play flag football. He likes to joke around and he gets embarrassed easily.

Ryder is my four year old baby. He was born with sagittal suture stenostosis (fused soft spot) and at 11 weeks of age he underwent surgery to correct it. He lost alot of blood and had a transfusion. This was such a tough time for us. As he grew, we noticed he didn't have eye contact with us, he liked to rock, and words never emerged. He was diagnosed with Autism in 2006. He also has seizure disorder and hypotonia. Last October he learned how to walk at age four! Yeah! Now, if we can get the words to come...His current fixation is the blinds.

As for me, I was diagnosed with depression and anxiety when I was a teenager. I guess it was good to get it over with then, because I learned alot and I feel that it has helped prepare me for these current challenges. I also have a degree as a LPN, but I am a stay-at-home mom. I love it.

Here is our story...



Ernie and Oscar learn they like different things-great for kids on the Spectrum!