Miguel on the front page of the San Antonio Express

http://www.mysanantonio.com/news/education/Boys_story_puts_focus_on_state_school_woes.html


Web Posted: 02/09/2009 12:00 CST

Boy's story puts focus on school woes

By Janet Elliot- Houston Chronicle
AUSTIN — Less than a week after entering the Lufkin State School for those having mental disabilities, 10-year-old Miguel Favela was in an ambulance speeding toward Houston, near death from an overdose of insulin given to him by the medical staff.
Miguel survived. But the boy's harrowing story — like many others — will resonate in the Legislature as lawmakers try to decide what to do about Texas' state schools, including whether to keep them open at all.
An internal investigation by the Department of Aging and Disability Services, which runs the Lufkin school, found neglect on the part of the medical staff that ordered and administered the insulin. A doctor was cited for ordering insulin without reviewing Miguel's admission records or checking with his mother.
And a nurse misunderstood the doctor's oral order and gave Miguel an insulin dose that was more than three times what had been intended.
Rep. Scott Hochberg, D-Houston, whose office has investigated Miguel's case, said he found a disturbing lack of oversight by DADS officials in Austin over the facilities they run in far-flung corners of the state. For example, he said, the doctor was cleared to come back to work after his peers at the state school concluded he had made an honest mistake.
“That's insane,” Hochberg said. “To the extent that the state operates facilities, I think the state absolutely has an obligation to make sure that the care is up to standard.”
A Justice Department investigation in December found deadly lapses in health care and systemic civil rights abuses of the nearly 5,000 residents who live in the state-school system.
Eight hundred state school employees have been suspended or fired for abusing residents in Texas state schools since 2004, and there were 450 confirmed incidents of abuse or neglect in one 12-month period.
Gov. Rick Perry last week declared improving the state schools an emergency; options range from closing one or more of the facilities to improving employee pay and hiring an independent ombudsman for residents and their families.
After a week in the hospital, Miguel recovered. Now 11, he lives at the Brenham State School.
For his mother, Kelly Favela, the ordeal was consuming: Like thousands of other parents faced with having to work and to care for their mentally disabled children, Favela, a divorced mom, made the difficult decision to place her son in one of the 13 large state-run residential facilities that mainly serve adults.
Favela, a 31-year-old Houston resident, had fought, with the help of her state representative, to get Miguel into a residential facility after his violent outbursts became too much, even for a former Marine such as herself, to handle.
“It became so intense at home. No one could understand how bad it was,” she said.
But the place where she hoped her visually impaired and autistic son would get the intensive supervision and behavior therapy he needed almost killed him.
The doctor who ordered the insulin injections mistakenly believed that Miguel had diabetes mellitus, or “sugar” diabetes. But he suffers from diabetes insipidus, an inability to process fluids that is unrelated to the more common type of diabetes that involves a person's inability to process food.
Favela, a hospital social worker, faults the doctor for not attending a treatment meeting when Miguel was admitted. She said she described in detail the health issues and medication needs for her son, who was born with a genetically deficient pituitary.
Miguel also wears a bracelet that gives information about his diabetes insipidus.
DADS declined to comment on the case.
Miguel's case will revive the discussion over whether children should be housed in large facilities. Advocates say state schools are not appropriate settings for children, but a rising number have been placed there because of a lack of community programs for behavior therapy.
Favela says Miguel can go from being happy and playful to screaming and throwing chairs.
“It's a tragedy to see him so good and happy at times and not be able to bring him home,” she said. “I'm in such a torn position.”



Find this article at: http://www.mysanantonio.com/news/education/Boys_story_puts_focus_on_state_school_woes.html

Good Morning, Friday!!!

It was a good night and a good morning. Miguel was up at 0400 and fussed a bit getting on the bus BUT he was good and manageable!

In review of my blogs, I found reinforcement in my statement to a Director at a local group home about Miguel needing consistancy, having difficulty with even the everyday transition and, possibly, an increased need to be in a residential environment w/ a staff.

I stated how e-v-e-r-y-d-a-y Miguel is difficult in the morning routine, even though nothing ever changes. It is the same routine everyday. I never reinforce his negative behavior by calling him out of school or by driving him to school. In fact, he has been like this since he was 3 or 4 and had to go to school. In Early Childhood, the teacher would remark on how it'd take 45 minutes to an hour to calm Miguel after getting off the bus, how long it'd take to get him off the swing, out of the pool, in from the playground, etc...

Well, the beat goes on...except he is big and aggressive. Before, he was just inconsolable. Poor baby.

So today was a good day with light fussing. I forsee a little difficulty heading into Saturday with transitioning and then back to the woes of morning routine transitioning M-W, with smooth transitions Thursday and Friday.....

....that's Miguel's seven day forecast. You heard it here first.

"Always end the name of your child with a vowel, so that when you yell the name will carry."

--Bill Cosby

Forgotten details of the past week

Miguel came home Friday (2/1) with the backs of his hands raw and bleeding, due to licking. He was fairly loud, fussy and aggressive so he didn't go to Respite. I wasn't in the mood to bring him, either. I think we went to bed at 9....rough week.





The backs of his hands indicate that he wasn't real productive Friday.

Monday and Tuesday Miguel wet himself aftershool but Tuesday he came home with this little goose egg.....

Per daycare, he wasn't happy getting off the bus. He wasn't happy that snack was over, either. He kept hitting the kids by him and taking their food. He pinches the kids in his daycare room...they report it to me when I pick him up.

Miguel's frustration mounted and he'd pound his head against the table repeatedly, screaming...over-and-over again. I think it shook up the owner, too, she seemed a little shaken by the behavior. Even though we all accept Miguel, sometimes his actions can be extremely unsettling.

I am sure you can imagine how PISSED OFF I was to show up to daycare Tuesday and find Miguel wet himself BAD! I mean, t-shirt, shorts, undies....RIDICULOUS!!! THEN to see this mountain on his forehead....EEEEWWWWWW.....I WAS ON FIRE!!! Who is watching this kid!?!??! Without being super evil AND crazy, I let them know I wasn't happy...

They explained what happened, which made it a little better but not much. To think, this is the ONLY daycare he can go to.....this blows.

Furthermore, I have explained the diet Miguel is on...what he can and cannot eat, etc... The owner wrote it down on paper and posted it in the kitchen.

Why did she show me snacks yesterday and asked, "is it ok for Miguel to eat these?" Mind you, she had a worried, "please, please, please, please let it be ok" look on her face.

I look at the ingredients. First ingredient "wheat flour". I say "no" and explain why. She says, "oh, ok, I was just checking because I had picked them up for him in case he could have them"

Yeah, the box was open....

Then she goes on to say, "well, I gave him some fried chicken today because he was asking for it."

I respond, "Oh, he can't have the breading that is on it." She apologized but what the HELL am I paying you for?!?!?!

Anyway, Wednesday he woke up groggy and was cooperative getting on the bus. He wasn't cooperative in the morning at school...a very angry morning. He also stayed dry at daycare yesterday.

This morning he was good. He was up at 0500 and he got on the bus without a problem! :)




"Any idiot can face a crisis - it's day to day living that wears you out."

--Anton Chekhov

Sluggish Tuesday

Miguel still has difficulty transitioning in and out of weekends.

He was fussy yesterday morning and this morning he protested and fussed, although, he wasn't aggressive.

I am continuing with the extra Risperdal in the morning. School said he had a good day yesterday!

"Develop success from failures. Discouragement and failure are two of the surest stepping stones to success."

--Dale Carnegie

Medication update...

SATURDAY


As scheduled, Saturday started at 0530-ish. Miguel and I were up and ready for a road trip to New Braunfels to watch Uncle Jason race for the first time this season. Per my last blog, I was going to "fiddle" with the Clonidine a bit because it wasn't doing what I had intended it to do. In fact, it was doing the oppposite by waking him up earlier and in a spastic, "punchy" sort of mood.

Last week, I tried going back to the 1 Clonidine at night, instead of 2, which had him sleep through the night BUT he was HELLFIRE during the day.

Saturday, per the prescription of giving 2 Clonidine, I gave one at night and one in the morning. Which KNOCKED MIGUEL OUT by 0710!!!! (See him in the back...)

I find this to be nothing less than HILARIOUS because it takes an elephant tranquilizer to even slow him down. LMAO!!!!

Back in December, when I considered giving him away or shippping him to China, I thought "it'd be great to have a tranquilizer gun for Miguel when the meltdowns occurred" because it is like experiencing pure evil when this boy meltsdown.









Needless to say, the 1 Clonidine in the morning is completely unnecessary.

Oh, I was caught taking pictures while navigating Uncle Jason's car.....back to business. :)

The rest of the day Saturday, Miguel was difficult to manage...he walked out on to the race course at one point.

Psst...great job single mom! Way to mind the boy! I am sure I made the 9 o'clock single mom news, on how irresponsible we can be. Not my finest hour.

By 1500, Miguel was more than ready to leave. He was screaming and whipping himself in the head with his cane, which is a friendly reminder that he has had enough for the day.

We went to eat at Chili's, where Miguel scared the crap out of the patrons with his screaming, crying and headbutting of the table. Gosh, it's moments like these I could trade for multiple root canals without anestesia.

After we were in the car for about 10 minutes, the crying and screaming stopped. We slept hard through the night and Sunday I tried splitting the Clonidine in half.

It was still too strong for him. He was also screaming and fussing a lot on Sunday. We almost didn't make it to church and I am lucky we were able to make it to the grocery store.

This morning, I tried giving the extra pill of Risperdal and 86-ing the idea of 2 Clonidine. Miguel was up a little after 0400 today. He wet the bed. He did on Saturday, too.

Miguel was fussy today but manageable.

I'll try the extra Risperdal tomorrow morning, too.

The beauty of behavioral meds is that they have different effects on different people. Sometimes it's the matter of time of administration or halfing a dose, as long as you work within the prescribed dose. Behavioral meds have to be "tweaked" to suit each individual.

As for today, I started calling around to a couple of possible placements....which all have waiting lists and criteria for placement....I'm hopeful, though.

"Faith has to do with things that are not seen and hope with things that are not at hand."

--Saint Thomas Aquinas

The wet seal strikes again!!!

Last night, Miguel's notebook stated:

"Miguel was not very nice to us today! He stayed upset most of the day, trying to fight or bump us with his head or cane. He even missed PE today because he would not stop fighting. I had to stay in the classroom with him while his classmates went to PE. All he wanted to do today was spin and lick or flick his fingers. *He had a BM this afternoon. I hope he feels better this evening."

I had to respond saying that he never ceases to amaze me because he had the best evening, night's sleep and morning in MONTHS yesterday.

Again, last night I gave Miguel 1/2 his dose of Clonidine (which was the original dose I had been giving him from Oct. - Jan.) and HE SLEPT THROUGH THE NIGHT!!!

So, he woke up in a good mood around 0500 and we hung out. I snoozed my alarm for 30 minutes and jumped in the shower. The bedroom became quiet and Miguel's bed was empty, as he made a B line for Uncle Jason's jacuzzi tub that Miguel is no longer to be in because it floods the garage below. (YIKES!!!)

I hurry up in the shower to go get Miguel because once he fills the tub, he has to wait until every last drop is drained before he'll get out. I head for Uncle Jason's tub and it's 0648....time is running out....

This seemingly harmless jacuzzi tub quickly turns into...

Miguel's bunker!!!

I open the drain, turn off the water and start talking to Miguel about getting out of the tub, being "all done", getting dressed, getting on the bus and he starts swinging. He sort of "leaps up" and swings and plops back down in the tub.....like Whack-a-mole!!!! However, I don't have a huge mallet to whale on him! LOL!!! Furthermore, I don't win tickets to claim a prize. =( I suppose getting him on the bus is prize enough.









Well, it was a good swingfest and I will spare the aggressive details but I imagine it was only a bit of what his school experienced yesterday and what I had been experiencing the past few months. I got him on the bus, he was not happy and I am sure he will be a handful today.....or not because he makes a good liar out of me. This all goes back to my theory of Miguel being a mixed bag of nuts.

Clonidine, clonidine, clonidine.....what will we do with you?

Give a full dose at night: sleep a couple hours and be wired in a non-aggressive way 19 hours a day.





Give a half dose: sleep solid through the night and kick everyone's ass all day long.

Tonight I am going to give him 1/2 a dose and the other half in the morning. I know the results are not going to be accurate because it is the weekend but I can start it anyways and see how Monday goes.

"Temper is a weapon that we hold by the blade."

--James M. Barrie

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

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

JACKPOT!!!!

First and foremost, let me say.....Miguel weighs 123 pounds!!!! That's NUTS!!!! Actually, it fluctuated between high 124 and 123. What a beefcake!?!? :) Sweet boy.

Yesterday when I went to pick Miguel up from school, he was SO EXCITED to see me at school!!! He was smiling, laughing, chattering away and studder stepping (he does this when he is excited or playing around...it's super cute). He showed off for his teacher by singing "You are my Sunshine" with me.

The sweet guy snacked on bananas, carrots and raisins without any complaints or meltdowns in the afternoon.

The neurology appointment went very well. I am so pleased with the doctor, his background working with aggressive children with Autism and his knowledge of panhypopituitarism with septo-optic dysplasia. Miguel was good for the doctor while he inspected his eyesight, belly and back (probably looking for bruising to see if I beat him...seriously).

The doc was well-versed in medications, frontline and heavy duty meds. We altered his medication regiment and slightly increased the Risperdal and Clonidine, starting with the Clonidine. He restored my hope in Miguel being able to "act right" again.

Miguel wasn't always like this. He was a sweet, happy and FUNNY baby. I couldn't have asked for a better child.

"All the art of living lies in a fine mingling of letting go and holding on."

--Henry Ellis

Side note: Miguel was good last night. Meds administered at 2000 and put in bed. He was up at 0400 but was redirected and able to stay in bed. He fell back asleep and was agreeable with getting ready today.

Tuesday he was up at 0300, was redirected and able to stay in bed. Fell back asleep and was combative getting ready for the day.

Mood log

Based on my regular blogging, I've been able to put together a mood/behavior log to track his meltdowns and possible precipitants, in an effort to minimize the behavior or reduce the aggression.

This has been helpful and I found that I need to be more detailed on his sleep time. Nonetheless, the results for December show Miguel being aggressive 14 out of the 31 days. That is just AMAZING! It felt more like 31 out of 31. ;)

On another note, it was a rough morning. Miguel didn't want to get up. Didn't want to go downstairs. Screamed and swung at me.

Today is a neurology appt. Wish us luck!!!

"Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning."

--Albert Einstein

Tough transitions...

I didn't blog on Thursday or Friday because we seemed to be in "the clear" regarding Miguel adjusting to the transition to school....but things aren't always as they appear.

ROUND 1

Friday night Miguel had a meltdown when we returned from respite at HARC. I had to put him in the bathroom and hold the door shut so he'd stop attacking me. When I let him out 10-15 minutes later....he was back to "normal". I survived with a good scratch on the arm, as if I fought an angry cat....I think the cat won.

ROUND 2

Saturday morning came with vengence! Our normal routine, as it has been for 3+ months, I drop him with my sitter at 0700 and I go for a long ride. I think Miguel thought it was Sunday... He was fairly compliant with me until we reached the stairs. He wanted to go into UnJay's bedroom, not downstairs. He caught me off guard and clobbered me in the face, to let me know his intentions and concerns. This landed him in a secluded "time out" for 20 minutes, until he was calm.

When I went to let him out, he was smiles and laughs...

Yeah, real funny.

"Whenever you are confronted with an opponent. Conquer him with love."

--Mahatma Gandhi

You are my sunshine...

Monday and Tuesday night, Miguel was AWESOME!! His vocabulary was emerging more, as he became less vocal over the winter break, and he was in a great mood!

Those two nights were spent singing "You are my sunshine" and laughing. Last night, Miguel had picked up every other line to the song! So I would lead the song and he'd chime in every other line. Yeah, that's awesome. He does it with counting, too.


Yesterday afternoon, when I picked Migs up from Daycare, he was ALL SMILES AND HUGS!!! Poor little dude had a dark blue goose egg on his knee that he was still rubbing from the pain. :(

In the car ride home, he heard me going through papers in the front seat and he reached forward for the snack he thought I was opening (CLASSIC Miguel move!!). I told him that it wasn't a snack and to "sit right". I rubbed his leg and gave him "five". I said, "I love you, Miguel." He responded immediately in his little sing-song voice, "I love you, too!"

This, of course, MELTS MY HEART!!! and makes me feel awful at the same time. Earlier that day, I spoke with his father for a couple hours about Miguel's uncontrolled aggression and cans of whoop ass that he opens on me FREQUENTLY.

Here's dad:

****He is a fugitive running from the law. This is where the last decent picture of him was taken before he transformed into a Mexican peasant field worker. He isn't recognizable anymore.****


We discussed Miguel's future and the emerging need for a staff to raise him, than an individual. It wasn't an easy discussion and it's hard to think of when Miguel behaves well.

What is a parent to do? I know who to call if an adult assaults an adult. I know who to call if someone assaults a child. I know who to call when a child assaults a parent. But who do you call when a special child, who doesn't know any better, assaults YOU? Who intervenes? What is the intervention? Where would the child go? What happens to the child? Miguel has been aggressive since he was 4 and has handed me my ass on a few occasions. Now he is 117+ pounds and angry, what about when he is 200+ pounds? Then what?

This is when I wish that I had an Autistic kid of the happy variety.

I addressed this concern to the school yesterday....we will see what comes back.

"It isn't the mountains ahead to climb that wear you out; it's the pebble in your shoe." --Muhammad Ali

Ever Wrestle a Wet Seal?

I do not recommend it!

This morning started around 0530, when Miguel woke up ready for the day. I had him dressed by 0600 and then I started to get ready. While I was in the shower, he helped himself to Uncle Jason's jacuzzi tub. The only problem is that Miguel didn't want to get out. He wasn't done. However, according to me....HE WAS! It was 0700 and the bus pulls up around 0705-0710.







The HUGE tub was already half full and Miguel likes to wait until it is completely drained before he even considers getting out. Today, this was not an option.


I had my hands on the knobs so he wouldn't fill the tub up, while I spoke to him in a calm, even keel voice about getting out of the tub, getting dressed, getting on the bus....all while he grunts and swings at me....yes, I see the trend and FUK! I hate Autism more than most people. I continue to talk to him while he unsuccessfully swings at me.

Actually, he swings at me, hits the tile trim around the tub and then holds his hand out for me to hit it. He likes the sensory input of pressure on the nerves on the back of his hand.... so, of course, I don't hit him because aggression breeds aggression and I'd be reinforcing his negative behavior.



So on the last swing, I grabbed his wet arm, pulled him towards me, locked my arms under his armpits and pulled the 117 pound, wet seal from the tub.

He was on the floor on his hands and knees, where I quickly dried him off and picked him up to get dressed again. He was fairly compliant walking down the stairs. He only reached back and tapped me on the leg once. He put his shoes on, at my request, but then he wouldn't stand up from the stairs. I heard the bus pull up and I couldn't get him to stand up! He pulled his hands in and leaned back with all his body weight, so I couldn't pick him up.

Damn, he is smart AND stubborn!!!! I'll never know where he got THAT from!! ;)

After much coaxing and encouraging, he was kind enough to stand up and walk to the bus. At this point, he was genuinely crying because he had a goose egg on his right knee from the shenanigans in the bathroom. NOW, I feel AWFUL!!! Poor baby!

"There are more pleasant things to do than beat up people."

--Muhammad Ali

Back to School....

Crap, it was a tough morning. I put Miguel down early, so he'd get a full night sleep and be ready to wake early......maybe I should have let him in on my plan.

He was indignant this morning. Grunting at me and swinging. What I find different in his aggressive tendencies is when he experiences the massive meltdown, he aims for my head/face and hands/arms, like he wants to do damage (swinging at me while he comes at me in an attacking manner). When he is contesting something he may not want to do, he hits me in my hips or sides (swinging behind him in a downward motion while I try to move him towards the door). Nonetheless, it's aggression but communicating two very different feelings.

Let's hope his day went well, as I am sure it did. He can make a liar out of me. :)

"Service to others is the rent you pay for your room here on earth."

--Muhammad Ali

Happy New Year!!!!

First, I would like to say "Happy New Year!!!" to all three (maybe four) of you that read Miguel's blog. :) LOL!! It has been a fantastic year of change and growth for all of us.

I wish I could write a reflective piece on the past year and then hypothesize how great '08 will be....but I won't. :) I'm new to blogging and I think we are up to speed with the past year's events, so I am going to focus on the past weekend.

Let's talk about meltdowns!! (Cheers from the peanut gallery...)

This is not my favorite topic, even though there has been a "meltdown" trend in my recent blogs...I don't like to talk about them, nor write about them. I think it paints an inaccurate picture of my son b/c I don't believe he chooses to meltdown or can he control them. So, I will continue to mention each meltdown, intensity and precipitating events leading to the actual meltdown, in an effort to find a method to the madness.

-On Thursday 12/20, Miguel was released from school for Winter Break and he attended daycare Friday.
-On Saturday 12/22, my mom "Meema" came to town.
-On Sunday 12/23, Miguel had a mild meltdown at Chipotle. Banging his head on the table, screaming and he knocked his apple juice across the table trying to head butt the table.
-On Monday and Tuesday (12/24 and 12/25), I was home due to holiday and we had very nice Christmas celebrations at a variety of places.
-On Wednesday, Thursday and Friday (12/26-12/28), I dropped Miguel at daycare at 0730 and picked him up around 1730. I blogged that day about him headbutting me in the face and chest.

So Friday night we were trying to go out for dinner and Miguel would not put his shoes on. He kept screaming and sat on the floor. I squatted down to talk him through it and he started swinging and headbutting. (I swear he could be a UFC fighter!) I ended up grabbing his wrists to restrain him until the headbutting began. Then I literally LAID ON HIM to stop him from injurious behavior, of which he started kicking me and trying to pull his arms in to bite my forearms. Here I was laying on top of my son in our family room. My legs were spread eagle and bent to avoid getting kicked. I was balancing on top of him with most of my weight in my midsection to hold him down and holding his wrists straight out from his body (almost like a skydiving position!) b/c it hurts like hell to get bitten by him.

When these massive meltdowns occur, I wish that he wasn't my son and that I could use all my strength and pummel the perpetrator until they were unconscious....or until I felt better about the whole situation.

I was sweating like crazy and my brother had to step in to assist me. It seemed like forever before we got him to his room to "timeout". Jason had to walk him up the stairs to the bedroom and Miguel fought him the whole way. Once we got him to his bed, told him "no, sir" and that "it isn't nice", he screamed, cried and shouted obscenities for approx. 10 minutes before he calmed down.

The amazing part of the meltdown is, when it ends, he is FINE! He is in a great mood! He thinks nothing of the fact that I was restraining him 30 minutes ago while he attacked me. He laughs heartily, hugs us, kisses us and MORALE IMPROVES!

What I have gathered from a history of these incidences is that he doesn't "just have a meltdown", rather a build up of frustrations until he reaches a pinnacle and EXPLODES and then he returns to a baseline.

I believe, in this case, Miguel's loss of structure, change of routine and change in home life (UnJay was home, Meema was in town, we visited numerous people, etc) precipitated the event. If Miguel were to have at least half days of school, would this meltdown have still occurred?

So the questions remain:

What is the precipitant?

What are the symptoms?

How long does the "building" period last?

How do you identify the "building" period?

What is the time between "massive meltdowns"? How do you extend that grace period?

What can I do to avoid the "massive meltdown"? Can it be avoided?

Can the "building" period subside w/o reaching a pinnacle? How? Medication? Behavior modification? A swift kick in the ass? Just kidding. ;)


I've had these questions in my mind for a few years now but I find it hard to live with him and identify the symptoms as a "building" period while I live with the symptoms (can't see the forest for the trees scenario). Then there is always the HOPE that it will get better and the denial that it isn't going to happen.

This would actually be a great study for my Ph.D.....but that ain't happenin!!! :)



The good news: Miguel will see, what I hope to be, A REAL NEUROLOGIST on Jan. 15 and I can bounce this crap off him. Let's hope he knows what I am talking about. It's tough being unique. ;)

"I saw the angel in the marble and carved until I set him free."

--Michelangelo

Gooood mooooorrrrrrnnnning!!!

Miguel was up at 0400 today. He was a ball of fun energy, squealing, laughing and acting a fool....most importantly, he was happy to go to daycare and in a great mood!!

"You can never plan the future by the past." --Edmund Burke

Blogging for the Love of Christmas!!!

This morning blew. It blew BIG TIME! Miguel woke up at 0330 and was in a piss mood by the time I got him to daycare. He head butted me twice, once on the cheek bone and once on the chest. Thank God for "padding" but the cheek bone left a mark.

I am not sure I can adequately express my feelings about being victimized by my own child. All I do know is that it requires all my patience and inner strength to not knock him through a wall. I mean, if a person is attacked, the first response is to defend yourself by any means necessary. All that crap went out the window with Miguel when he was about 4 years old, when he started to become aggressive at the bus stop. In the past 6 years, I've been humiliated in public and privately by my child attacking me and I have a variety of scars on the back of my hands and arms. Unfortunately, he has the strength of a million men, he is only getting bigger and with every aggressive meltdown, he is headed in a direction that he wouldn't want to go.... if he knew any better.


Over the weekend he woke up early most days (between 0330 and 0700), was more forceful and spastic than usual (verbally and physically, head banging mostly) and this morning may have been the pinnacle of aggression...let's hope. I think it may come from being out of school since Thursday, losing his routine and structure over a 4 day weekend and then going to daycare this morning.


Enough about mood and aggression. Let's talk about Christmas Eve and Christmas!!!!! Christmas Eve MIGUEL LOST A TOOTH and it was a gift exchange day with my family, due to my brother's work schedule. My brother's girlfriend, Angela, was kind enough to host us and we all received GREAT GIFTS!!!


Good people.............

Brett ("Breast") LOL!!! & Me







My mom "Meema", Andy & Miguel





Miguel (the contortionist)




Miguel & Andy

Andy, Un Jay, Abbey & Angela

The fam

So Miguel received many gifts (sensory toys, clothes, Spiderman 3 bedding) and this little rinky dink toy would have to be his favorite gift!!! Isn't that just like a kid? You buy them the world and they want to play in the dirt.... :) Kids rock!

He shakes it. It squeaks. Endless fun.

Contemplating the shaking method. Considering banging his hand with it....just exploring before he starts spinning like a top.

Ooooohhhhh yeeeeeaaaaaahhhhh!!!! That is some GOOD TOY ACTION!!!

(I think I may have paid $5 for it. Time to stock up!)

Here are some other sensory toys he received to go in his sensory box. He also likes the Zube Tube (on the left). He spins and uses it like a music conductor and it makes a great noise.

Un Jay gave Miguel Spiderman 3 bedding. It's actually reversible, with the "good Spiderman" on the opposite side. In keeping with the mood, I decided to make the bed with the black Spiderman. Besides, the black one is bad ass.

Christmas Eve came to a close and we were pooped. Note my handsome pug, Sullivan, at the bend of my knee. I love that dog!

CHRISTMAS DAY!!!!

We had A LOT to eat.....

I mean, eat.....

To include corn pudding, Crawfish Chowder, stuffed potatoes, salad, pork roast, barbeque pork roast, brown sugar glazed ham, biscuits, dressing with chicken and I'm sure I missed something... I think this Christmas may have been void of vegetables... Oh well. It was all YUMMAY!!!

There may have been some wine consumed but there was definitely pumpkin cheesecake and homemade cherry pie consumed!!! :)

Again, there were good people....

Lou and Dwight

Aunt Kathy, Kristin and Uncle Steve

Hilda

Great decor....

....and, of course, great food!!

It was a fantastic day that my friend, Kristin, hosted for Meema, Miguel and myself. Unfortunately, I don't have pictures from later that day when we went to HFD Rescue 10 to have dinner with the fine firemen of Houston but that meal included brisket, corn on the cob, MANY DESSERTS!!!, ham, biscuits, chips/pico de gallo (a staple there), beans, green bean casserole and probably other foods I am missing. It was ALL GOOD!!!

Now I have to go dig through my storage to find my maternity pants! ;)

"Be faithful in small things because it is in them that your strength lies." -- Mother Teresa

Helpful resources...

I mentioned in an earlier blog that Miguel and I moved to Texas for an appropriate education at
Texas School for the Blind and Visually Impaired but instead he was placed at T.H. Rogers, which has proven to be beneficial to his increased communication ability but not to his self help skills. I'm going to look into DARS for that assistance, most likely after the New Year.

In the meantime, I get a much needed break from parenting every Friday night from 1830-2230 at Houston Area Respite Center (HARC). This has been an awesome resource for me so I can go blow off steam, whether it is swimming, running or riding....it's ME TIME!!! Another perk to the Respite is that it is connected to Gethsemane United Methodist Church, which also has a service for Special Needs children. I hadn't been a part of a church for almost a year since Miguel was asked to only attend worship if I sat with him during the children's worship.

In 2006, Miguel was kicked out of Gold's Gym and could not attend church if I did not join him. I suppose I could see Miguel's ostracizing as people's ignorance, laziness, incompetence and carelessness but I choose to see it differently.

I think it takes a very special person to care for Miguel... and do it well. Now, I am not talking about myself. He's my child and I have to do my best with him. It's my natural obligation. There is no option, the way I see it, but for people who CHOOSE to care for this special population are AMAZING!!!!

If I was given a CHOICE, would I have CHOSEN to be Miguel's mom? All of the personal responsibility, financial responsibility, public scrutiny, frustration (personal and professional), exhaustion, discrimination and lack of support.....HHHEEEEEELLLLLL NO! I wouldn't have chosen it. I was a 20 year old. I was a narrow-minded, self-absorbed idiot. True story.

Am I overjoyed and blessed to be Miguel's mom? ABSOLUTELY!!! Yet, I am still a self-absorbed idiot....some things will never change.

So, I was put into, on my own accord, an undesirable situation and I KICK ASS but I am more thankful for those who CHOOSE to educate, care for and treat my child and still..... KICK SERIOUS ASS!!! They are TRULY AWESOME!!!!

I mentioned Deandrea Grover a blog or two ago. Her and Miguel clicked at Daycare (D'Unique Center of Learning) and she has been my sitter ever since and she is awesome. I use the assistance of United Cerebral Palsy of Greater Houston to reimburse part of what I pay her. She understands Miguel more than most and he loves his "Didi". We are blessed to have found her since moving here because we had a PHENOMENAL nanny in IL, Amanda Massong, and we had been lost without her in Houston. (I will post a link for her when my computer is fixed) I found her at Miguel's afterschool care and summer camp, Warren Special Recreation Association, and they were soooo good to Miguel. The majority of the staff there are high school students or college students on break, so I have difficulty tolerating grown adults that can't work with Miguel.

Then there was the FIRST TEACHER OF MIGUEL'S THAT LISTENED TO MY OPINION and believed it to be true, Julie Rohrbach in 2004, mind you, Miguel has been a student since 2000 . She was the first teacher to ask my opinion about Miguel's education, believe it, agree with me and follow through with a plan to get Miguel an appropriate education....and advocated for it. Which was placement in a class designed for Autistic children.

In 2005, Miguel had the first Vision Itinerant, Sheila Hoekstra, to work with him from the Blind/Autistic perspective and advocate for him to stay in the program but have the MUCH NEEDED teacher/classroom change. It was a drastic improvement and Miguel received a 1-on-1 aide, whom Miguel bonded with well but still requested "Miss Sheeya" as much as humanly possible. :)

In keeping with my blog title, I will return to my blurb on resources......

Here we are at Christmastime and I managed to do ALL my Miguel shopping online and here were some good resources that I found for gift ideas (AutismWeb), affordable sensory toys (OZMO Cool Fun Toys), therapy/sensory enjoyment (Integrations) and Autism Awareness gifts for close friends and family (Autism Society of America).

I'm always open to toy suggestions and shopping resources.... :)

"Good judgment comes from experience, and often experience comes from bad judgment."-- Rita Mae Brown

Amen to that!!!