Gooooood moooorning, SUNSHINE!!!!

No, I am not referring to the weather, I am referring to Miguel!!!!

He slept through the night!! (High fives to everyone.) AND!!!! He woke up in a GOOD MOOD!!!! (Belly bump it. Ooh yeeeeahhh!!!)

The fact of the matter is, the whole world can come crashing down but as long as Miguel is happy....I'm happy. Everything beyond him is manageable and doesn't bother me....at all. Sad, maybe, but true.

So, what is the secret to a good night sleep??? I'm not sure but I am guessing one of two things.... Either, he finally got tired of sleeping a couple hours a night OR because I gave him a half dose of Clonidine.

Here's the deal... He's been waking me up at the most awful hours of the night and last night I felt as though I should try something different, so I gave him half his Clonidine and I took the other half...JUST KIDDING!!!! I saved the other half for when he wakes at Zero-Dark-Thirty, so I could give him the other half. As we have it, the next thing I heard was my alarm clock.

Yeah, THAT ROCKS!!!

Today is a good day!

"Experience is simply the name we give our mistakes."

--Oscar Wilde

Autism Speaks

An article from the Sunday edition of Parade...

http://www.parade.com/articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything


The band, Five for Fighting, is generously donating $0.49 to Autism Speaks for *each time* this video is viewed. The funding goes toward research studies to help find a cure. They are aiming for 10,000 hits. Let's send it out to our families.

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214


Today: This morning Miguel was up at 0200 and did not go back to sleep. His mood was average and he fussed getting to the bus.

Yesterday: I spoke with the school social worker re: follow up on placement options and resources with super long waiting lists. Here's the progress I have made since we last spoke.....

I put Miguel on a waiting list for Home Based Community Services last week. He will wait for 8-10 years to be serviced

I also put him on the waiting list for a program called CLASS, which would help out with Miguel in the home, personal attendant type stuff (self-care, mobility, feeding, etc.) and this will be a 6 year waiting list.

I am looking into placement options for group home or ICF. I started this process yesterday. As I see it, Miguel has been manageable but we are also clear of the holidays and back to a normal schedule....Spring Break is right around the corner and we'll see what that brings. In the meantime, I am going to continue researching this so when the time comes, I may be more prepared.

"I have a simple philosophy: Fill what's empty. Empty what's full. Scratch where it itches."

--Alice Roosevelt Longworth

Good morning, Tuesday.

This was Miguel at 0650.

I am guessing it is probably because he was up at 0315! He did fall back to sleep at 0500 but, man, he was a hard sell to starting the day. No aggression. Just screaming. I'm sure Uncle Jason has a bit of regret on these mornings. =)

"It is not what we take up, but what we give up, that makes us rich."

--Henry Ward Beecher

Who is this kid?!?!

Seriously. Yesterday, the school reported that he had an okay day. He was laughing, really "hyped up", would not attend to tasks but was barely aggressive. I don't know how he has 19 hour days and stays amped ALL DAY. He was like this before we started him on Risperdal and for some reason, the increase of Clonidine increases hyperactivity??? Hmm.


So, I take him to the bathroom twice in the night and I've been afraid to wake him because he may not go back to sleep. At 0100, his bed was already wet so I had to take him and, low and behold.....HE STAYED UP!!! He was happy and cooing. I really can't tell you how many times I said, "Miguel, go to bed", "Miguel, go to sleep", "Miguel, hush", "C'mawn, Miguel, go to bed"....yeah, I don't know how long it went on for but somewhere in some unknown time frame...he fell asleep. I think I may have gotten in a broken up 7 hours of sleep and I'LL TAKE IT!!!


Nonetheless, his 19 hour days are my 20-21 hour days. I'm going to look like the Crypt Keeper by next year if he keeps up these shenanigans.....

Yeah, that's hot.

Good reading...

http://www.newswithviews.com/Dean/carolyn37.htm

http://www.autism.com/families/stories/huggins.htm

Texas Children's Hospital breaks ground on Neurological Center in Houston to study and treat pediatric neurological disorders such as Autism, Rhett Syndrome, Epilepsy, CP and learning disorders......

http://tinyurl.com/2a96b7

This is interesting....(same diet Migs is on...)

http://heartspring.net/mercury_poison_symptoms.html

Mercury Detox Diet

By Joseph Mercola, MD

Avoid all sugar and milk, limit all processed foods and most grains, especially wheat.
It will be important to have a high protein diet as the sulfur bearing amino acids in the protein will greatly facilitate detoxification. Do NOT attempt to fast during DMPS mercury detoxification. If you are a vegetarian you will be at HIGH risk for complications from DMPS unless you have a large amount of protein.

Whey protein can be used as a supplement as it is high in glutathione and branched chain amino acids. Two large tablespoons are used per drink and that can be taken once a day and twice a day for the week prior to DMPS chelation.

Autistic children can't use this product as it contains casein. They can use pure branched chain amino acids. You can start with one capsule twice daily and mix with food. Work up to two capsules twice a day for the week prior to DMPS chelation.

Hmm.

"One out of six women are toxic with mercury (21%). Mercury comes out of coal plants and chlorine plants. I am toxic, I deal with symptoms, children are born with, you know, autism - there is an epidemic in this country. This is like, the air that we breath."

--Daphne Zuniga

WHOLLY MOLY!!!!

When will the madness stop?!?!? This boy woke up at 0230 and, oh yeah, did NOT go back to sleep!! =0 Sleep is overrated and for the weak, anyway. ;)

I'm going to let this week go, to see if there is some improvement or he becomes symptomatic of an illness. Otherwise, I'll call the neurologist on Monday.

BTW, the school reported that he had a WONDERFUL day yesterday!

"If you can't make it better, you can laugh at it."

--Erma Bombeck

Clonidine, don't fail me now!!!! =)

This is how well Clonidine worked on Saturday night.... =)

Here's a little pic of how Miguel's self-stimming behaviors affect him...

Note: bruised forehead from "head-banging". He'll spontaneously bang his head against the edge of a table, the corner of the table, square on a table, a wall, he'll hit his head with his own cane, his fist and he'll try to headbutt my arm while I lead him. Miguel has been known to drop down to the ground and headbutt the cement, too. This almost always brings a tear to my eye.



Furthermore, his lips are almost ALWAYS chapped, crusted, peeling, etc. from licking his hands. The backs of his hands actually get callouses from the licking behavior. When we lived in Chicago, the cold, dry winters, in combination with his licking, would cause his hands to bleed.













The whole weekend was really relaxed, so there are no meltdowns to report. (YEAH!!!) But relaxed isn't the norm. I keep a tight, structured schedule for every weekend. We are very predictable day-to-day because, well, we have to be. Autism rules my life.












We slept in Saturday because the weather wasn't conducive to my scheduled ride. I've also found that since Winter break, Miguel has been wanting to sleep in more. This is tough for school days and for me, since I am A HUGE MORNING PERSON!!









So, we caught a cyclocross race that afternoon. Miguel was kinda FANTASTIC and enjoyable. The little beefcake likes to be outdoors as much as possible.

Sunday, he went to the sitter for the afternoon while I went for a little ride. He was great for Didi, as usual.

Here's the deal though, he went to sleep at about 2130 (which is SUPER late for him) and he woke up around 0300. He fell back asleep around 0500, after a good bath.

THEN!!! Last night he went to sleep around 2100 BUT he woke up at 0130.....Yeah, he sooooo didn't go back to sleep. This little dude has been up since 0130!!!! Oh, and so have I. I can actually sleep through the Perfect Storm, unless I know Miguel is up. Only one time, did he sneak out of the bedroom and head for Uncle Jason's room. I intervened at the door. Whew!!! Close call.

My intervention skills haven't been that honed since I moved here. I find that I sleep more peacefully when I know there is another adult in the house to be alert, too. When Miguel and I lived alone in an apartment, I'd wake for EVERYTHING, sleep on the sofa (to watch the refrigerator and the front door) or just sleep on his bedroom floor. He can be a bit of a handful at times. By "at times", I mean "all the time". =)

Anyways, I am hoping to find another job soon and I hope it is better paying, so that Miguel and I can get a place of our own and return to an independent state of normalcy. I feel bad "living" in my brother's house so much. We wear it out pretty good.

"The price of anything is the amount of life you exchange for it."

--Henry David Thoreau

Smooth sailing....so far. =)

Miguel went to bed without a problem last night. It appears as though his appetite has decreased over the past couple days, as it doesn't appear to be as VORACIOUS!

When I went to bed around 2330, he was laying awake in bed. I took him to the bathroom and he fell back to sleep. He was easy to get up this morning and get on the bus.

Yeah Miguel!!!!

"Do all things with love." --Og Mandino

Goooood mooooooooorning!!!

Yes, it was!!! Miguel's day went off without a hitch the rest of Saturday, all of Sunday and this morning!!!

After church Sunday, he had no problem waiting at Jiffy Lube for a couple hours to have some needed maintenance to the car. We had some good grocery shopping and vegetating this weekend, post Saturday morning.

Good job, Miguel!!!

"Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment." --Buddha

Clonidine woes....

The majority and, sometimes, only challenges of being a parent of a special child is dealing with "everyone else".

"Everyone else" includes, but is not restricted to, pharmacies, doctors, specialists, store patrons, restaurant patrons, insurance companies, local school district employees, local service providers, plain ol' stupid people, the ignorant and the ridiculous. I haven't captured "everyone else" in this description....but it is a solid start!

So, Migs has woken up grumpy the past 4 days. Just irritable, difficult (to say the least), stubborn and crabby and I'd like to relate these symptoms to the poor guy not getting his evening dose of Clonidine.

A side bar to my train of thought: I attribute all of Miguel's behaviors, attitudes or moods to a response to his natural environment and Autism. So, it boils down to symptomology and not "Miguel". I don't believe Miguel acts this way out of choice. I don't believe anyone would act this way by choice alone....that is ridiculous. So, anything he "exhibits" is a "symptom to his environment", which could be a stranger coming in the house, changing locations in a restaurant (from the waiting area to the table), running out of a certain item at the dinner table, getting out of the car and going inside somewhere, leaving somewhere and going outside, getting off the swing, getting out of a pool, a locked bathroom door and recently "just getting up" seems to be a mood altering factor. Living with Miguel is quite an analytical experience. Once you understand the "experience of Miguel", your view on life or situations change dramatically. For example, I told my good friend that Miguel attacked an assistant at school and her response was, "uh-oh, what did they do?" Not to excuse the assaultive behavior or say that the assistant deserved it, but she understands that certain things in Miguel's universe can't be messed with or he may explode in an aggressive manner. Nuff said.

Back to Clonidine and the absence of.... The poor dude has been out of Clonidine for over a week now. Partially due to me being an idiot and partially due to the doctor being an incompetent ass. So I have been working on fixing this small--turned ENORMOUS--detail in his life and, in the meantime, it appears as though he is maybe not sleeping sound enough to wake up in a good mood--that's my best guess. He has wet his bed (there is plastic covering over the mattress for all you clean freaks, like myself, out there) 3 nights in a row and he woke up in a piss and vinegar mood for the past 4 mornings.

Now, I can REALLY APPRECIATE an early morning, piss and vinegar mood more than most (seriously, I can) but not from this sweet guy. Not when I have to get him dressed and on the bus at 0700. No sir.

So, I am trying to get this whole prescription dilemma rectified so he can go back to being sweet but, more importantly, tolerable and to sidestep any future issues with this neurologist....I scheduled an appointment with another one and I hope for competency and understanding.

Keep your fingers crossed!

Newest development: Miguel knocks (usually on the kitchen table) and then asks "who is it?" :)

Oh, my heart leaps up... :)

"Love takes up where knowledge leaves off."-- Saint Thomas Aquinas