Kel&Migs

Walk for Autism in Houston!!!

2011-10-21T21:09:00.000-07:00

http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=465563&lis=0&kntae465563=DA78BFEEFF4E48178D3400E1C72FA33D&supId=328344002

I'm always trying to find ways to continue to fight the good fight, despite our circumstances. Please feel free to support!! Thanks!!

I Pledge Allegiance

2009-11-03T09:39:00.000-08:00

Disgusting. Abuse in Corpus Christi State School

2009-03-12T21:02:00.000-07:00

http://www.dallasnews.com/sharedcontent/dws/news/localnews/stories/031209dnmetstateschoolabuse.4ab86d9.html

Arrests under way in 'fight club' scandal at Corpus Christi State School

04:43 PM CDT on Thursday, March 12, 2009

By EMILY RAMSHAW / The Dallas Morning News eramshaw@dallasnews.com

AUSTIN – Six employees of the Corpus Christi State School have been charged in connection with the facility’s “fight club” scandal, and warrants have been issued for their arrest, authorities say.

One has been arrested; three others have notified police they will surrender today.
Five of the suspects – Timothy Dixon, 30; Jesse Salazar, 25; Guadalupe Delarosa, 21; Vince Johnson, 21; and Dangelo Riley, 22 – are charged with injury to a disabled person, a third-degree felony. Their bail has been set at $30,000. A sixth suspect, 21-year-old Stephanie Garza, is charged with a state jail felony for allegedly failing to intervene in the fight clubs. Her bail is set at $15,000.

Arrest warrants obtained by The Dallas Morning News allege that the employees charged with injury to a disabled person participated in encouraging, filming or narrating the fights – which were documented in dozens of still images and 20 movies taken over six months in 2008. Riley is allegedly seen kicking a resident during a fight, while Delarosa and Dixon are accused of doing much of the filming and narration. Four of the videos show residents sustaining injuries.

Also Online
03/12/09: More allegations of provoked fights surface at Texas schools for mentally disabled
03/11/09: Texas officials make surprise visits to state schools after Corpus Christi fight videos surface
03/11/09: Corpus Christi State School investigated after 'fight club' videos of residents found
03/10/09: Texas Senate unanimously passes measure to protect state school residents
Link: Corpus Christi State School
Get Texas and Southwest regional news

All are Corpus Christi natives, but one is out of state, Lt. Isaac Valencia said.
The news comes the day after Texas’ federally mandated abuse watchdog group reported similar cases of provoked fights at two other institutions.

Beth Mitchell, senior managing attorney with Advocacy Inc., said employees at both the Mexia and San Angelo state schools have provoked physical altercations between residents in the last six months — “creating a climate where abuse is acceptable, and in these cases encouraged.”
While the cases are serious, Mitchell said, they do not appear to be as orchestrated as the late-night "fight club" ring uncovered at the Corpus Christi facility.

Also, a Dallas Morning News review of employee misconduct at Texas' 13 state institutions for people with disabilities shows that at least five state school employees have been fired, suspended or demoted for instigating or allowing fights between residents since 2006.
Officials with the Department of Aging and Disability Services, who on Tuesday made surprise overnight visits to every dorm in every state school, say they have no evidence of highly organized fighting rings at other facilities. Since news of the Corpus Christi fights surfaced, they have suspended admissions to that state school and have begun installing video cameras, hiring security guards and adding overnight supervisors at all facilities.

"We have a 24-7 duty to protect some of the most vulnerable citizens of this state, and I want staff to know that the expectations at 2 a.m. are no different from the expectations at 2 p.m.," said agency commissioner Addie Horn. "If a worker sees something happen, knows something happened or hears a rumor that something happened, they are expected to report that immediately."

Cellphone video

Corpus Christi police, who uncovered the fight club by pulling nearly 20 video clips off of a discarded cellphone, said that the abuse appears to have happened repeatedly during 2008 and once as recently as January. Of the 11 current and former employees they've identified in the images, Lt. Isaac Valencia said, roughly five will probably be arrested late this week or early next week.

"When you can attack the weakest link in your community – it's just disturbing," he said. "Rest assured, we're very effective in our efforts to apprehend people."

In the Corpus Christi case, employees are thought to have orchestrated the fights, bringing residents into the common areas of dorms, provoking them physically and verbally, then raising the hands of the "winner" in victory. All residents have been evaluated by caseworkers, and none were seriously injured.

In the cases uncovered by Advocacy Inc., the independent organization that the federal government pays to monitor abuse and neglect in state facilities, staff generally encouraged one resident to beat another up, or refused to intervene when several residents ganged up on another.

"This is not an isolated problem," Mitchell said. "This type of scenario – with staff egging on client-to-client abuse – is occurring at other state schools."

The Corpus Christi news, first reported by The News, comes as lawmakers debate how to reform the state schools, which have been criticized by the U.S. Department of Justice for systemic abuse, neglect and other civil rights violations.

'Human cockfights'

"The state schools have been systematically starved of resources," said Sen. Eliot Shapleigh, D-El Paso. "What we have now is so little supervision that staff are pitting residents against one another like human cockfights."

The House Human Services Committee will tackle a bill today to protect state school residents from mistreatment. It calls an ombudsman to oversee abuse and neglect investigations and would require surveillance cameras, employee fingerprinting and random drug tests. The Senate approved a version of the bill Monday.

Advocates for the disabled, who support separate legislation to start closing some state schools, will be at the Capitol today and say they won't endorse the safety bill unless it includes a minimum six-month moratorium on admissions to all Texas state schools. The groups want the schools to prove they can go that long without an abuse or neglect case before they can add new residents.

Meanwhile, the Corpus Christi allegations prompted Gov. Rick Perry's office to implement elements of the safety bill before its passage.

Perry chief of staff Jay Kimbrough, who traveled to Corpus Christi immediately after the news broke, said that he was sickened by the fight club video and that there was no time to waste securing the state schools. He said the big hole appears to be "in the wee hours of the night," where devious employees can organize fights in dimly lighted common areas.

Conditions "are not yet to the level the people of Texas demand," Kimbrough said. "It's been disgusting, aggravating, sad. ... We're going to get cameras in. And we're going to throw the book at these people."

Houston Chronicle, 2/10/09

2009-02-17T11:20:00.001-08:00

Miguel made the front page of the Houston Chronicle. Apparently, this newspaper is disseminated to a more educated population than that of the San Antonio Express....

http://www.chron.com/disp/story.mpl/moms/6255177.html

A young boy’s brush with death
Ordeal at state school may resonate with lawmakers' debate
By JANET ELLIOTT Austin Bureau
Feb. 9, 2009, 10:38PM

CLOSER LOOK AT STATE SCHOOLS
• 4,700: Number of state school residents
• 159: Number of children under age 18
• 574: Confirmed abuse/neglect cases in a one-year period
• 800: Employees fired or suspended since 2004
• $125,507: State cost per resident

AUSTIN — Less than a week after entering the Lufkin State School for the mentally disabled, 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 his life-threatening ordeal — like others — will resonate in the Legislature as lawmakers contend with fixing, or even closing state schools, home to thousands of developmentally disabled adults and children.

Most critical is putting a stop to the abuse and neglect pervasive in some schools. The Department of Family and Protective Services, which investigates complaints, confirmed 574 instances of abuse and neglect in just one 12-month period between September 2007 and August of last year, records show.

Gov. Rick Perry has declared improving the schools a state emergency. The possibilities range from shutting schools to improving employee pay to installing more surveillance cameras.
In Miguel’s case, an internal investigation in June 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 verbal order and gave Miguel an insulin dose that was more than three times what had been intended.

Rep. Scott Hochberg, D-Houston, whose office also investigated Miguel’s case, said he found a disturbing lack of oversight by DADS officials over the facilities they run in far-flung corners of the state. The doctor, he noted, was cleared to come back to work after his peers concluded the physician had made an honest mistake. “That’s insane,” said Hochberg. “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.”

In December, a U.S. Justice Department investigation found deadly lapses in health care and systemic civil rights abuses of the roughly 4,700 residents who lived in the state-school system. That, combined with the fact that 800 state school employees have been suspended or fired for abusing residents in Texas state schools since 2004, has forced state officials and lawmakers to make improvements a priority.

Care is also expensive: The state pays for each resident at a cost of $125,507 a year
Other legislation under consideration includes conducting random drug testing on staff members, moving many residents to community homes and creating an ombudsman to deal with family members worried about care.

Miguel’s case also 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 due to lack of community programs for behavior therapy.
More than 300 state school residents are age 21 or under, and 159 are younger than 18.
Now 11, Miguel lives at the Brenham State School.

For his mother, Kelly Favela, her son’s ordeal at Lufkin was consuming — it was tough enough to decide to place her son in one of 13 large state-run residential facilities that mainly serve adults.
Favela, a 31-year-old Houston resident and divorced mom, had fought, with the help of Hochberg, to get Miguel into the school because his violent outbursts became too much to handle.

A hospital social worker, she faults the doctor for not attending a treatment meeting when Miguel was admitted.

DADS declined to comment on the case.
janet.elliott@chron.com

Miguel on the front page of the San Antonio Express

2009-02-09T14:09:00.000-08:00

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

Handsome guy....

2009-02-04T12:08:00.001-08:00

I got nothin.

2009-01-28T15:54:00.000-08:00

I don't have too much to say, even though a lot has been going on. I just thought I'd post some pics from the last year.....

February 2008, waiting for the bus

January 2008, Cyclocross race

February 2008, New Braunfels

April 2008, Miguel put himself to bed...in Uncle Jason's bed.

May 2008, Houston Grand Crit

July 2008, Brenham State School

August 2008, Brenham State School

September 2008, home visit a week after Hurricane Ike. Miguel's father came to town.

October 2008, Brenham State School

November 2008, Brenham State School

December 2008, Brenham State School

"Oh, Lordy."

~Miguel Favela

Houston Chronicle, 12/2/08

2008-12-03T10:06:00.000-08:00

AUSTIN — Texas is failing to protect developmentally disabled residents living in large state facilities, where at least 53 died in the past year from possible lapses in health care, a federal investigation has found.

Deficiencies in staffing put residents in 13 facilities at risk of abuse and neglect, the U.S. Justice Department said in a report to Gov. Rick Perry released Tuesday.
The probe concluded that serious problems and deficiencies in care documented two years ago at Lubbock State School currently exist throughout the facilities where nearly 5,000 vulnerable Texans live.

"We have concluded that numerous conditions and practices at the facilities violate the constitutional and federal statutory rights of their residents," said Grace Chung Becker, an acting assistant attorney general in the Justice Department's Civil Rights Division.
The mortality rate for some of the facilities "raises serious concerns regarding the quality of care that facility residents receive," Becker said.

She noted that 114 residents died in the past year, including at least 53 deaths from aspiration, pneumonia, sepsis, bowel obstruction and other "preventable conditions that are often the result of lapses in care or failure to put medical interventions in place in a timely manner."
More than 800 employees have been suspended or fired for abusing residents since 2004, the report said.

State records show 450 confirmed incidents of abuse or neglect in fiscal year 2007.
Many of the facilities' difficulties stem from high attrition rates and vacancies, especially for direct care staff and clinicians, said Becker.

Lawmakers in 2007 appropriated money to hire 1,600 additional workers.
The report will add to the debate at the state Capitol over whether some state schools should be closed and resources shifted to community-based living settings.

Rep. Patrick Rose, D-Dripping Springs, chairman of the House Human Services Committee, said the report "underscores the need here in Texas to move swiftly to consolidating and closing several state schools." He said he will introduce legislation next year to shutter several state schools, though he hasn't yet determined how many.

Allison Castle, a spokeswoman for Perry, said the governor does not necessarily advocate reducing the number of institutional beds. "The focus should be on fixing the problems (documented) in the report," she said.

The Texas Department of Aging and Disability Services, which operates the state schools, is working with the Justice Department to address the violations and avoid litigation, a spokeswoman said.

Although called state schools, the facilities served individuals of all ages who have been diagnosed with mental retardation. Many have other health issues and require frequent monitoring.

Some of the facilities house juveniles who have been placed there by courts following criminal charges, including sexual offenses.

janet.elliott@chron.com lsandberg@express-news.net

Wouldn't you know it? I just filed a complaint to Dept. of Aging and Disability Services yesterday for suspicion of abuse. This is such a tragedy that such a vulnerable population would be treated so horribly. Those guilty are monsters and will be judged.

Is this the turning point, when I become a bitter hag?

2008-11-30T10:44:00.000-08:00

No joke. I see a lot of patients in the midst of their crisis and the crisis hadn't developed in the past 24 hours but rather a long period of decompensation through maladaptive coping mechanisms to not deal with real issues due to their inability to recognize the painful reality or not knowing how to deal with it....thinking it will "just go away", "time heals everything"--type scenarios. Which never work out, instead it slowly changes us over the years to the person we grow up to be, even if we didn't necessarily choose to be that person.

In hindsight, my beginning point probably happened in 6/08, nonetheless, in 10, 20, 30 years from now, when I have hit the bottom of my personal hell, I will re-count the events from which it all began and 2008 may be "my beginning point." I really hope not, but it sure feels that way lately.

"Buh-hum-bug."

-Scrooge

I miss him....

2008-11-16T09:08:00.001-08:00

I STAND CORRECTED!!!!

2008-11-07T09:30:00.000-08:00

The "dr" and "rn" are back at work after their "peer review board" BUT! the Texas Medical Board has decided to investigate because of the complaint.

WOOOOOOOOOOO!!!! HOOOOOOOOOOOO!!!!

Faith in humanity and laws......RESTORED!!!!!

The best part of it is, the "peer review board" was confidential and I was not allowed to participate or give my timeline of events, whereas, the Texas Medical Board has called me for my timeline, perception and a notarized statement.

TMB is good!!! ;) Poor investigator that called.....she got an earful and an 8-page, single space recollection of the events detailed with names, times, contact info.......This mother doesn't mess around when it comes to the welfare of her boy!!!

I am only able to do this because of my fantastic State Representative and his staff, who have continued to follow this case from day one. I have received updates from his staff, informing me of what is happening and what is going on. They connected me into the Texas Medical Board and provided them with my contact info, otherwise, the investigation may have been one-sided and incomplete.

VOTE EARLY, VOTE OFTEN!!!!

"The less people know about how sausages and laws are made,

the better they'll sleep at night."

-Otto von Bismarck

DO NO HARM. What is that?!?!

2008-10-28T14:37:00.000-07:00

A bunch of crap, if you ask a peer review board of "MEDICAL PROFESSIONALS IN TEXAS".

Courtesy of "medical professionals" that the All Republican Texas State Supreme Court wants to keep from fleeing Texas. Thanks again, All Republican Texas State Supreme Court!!! Smashing good job!!! Kudos.

I think the BEST part of it, is that Miguel was CRITICAL when he showed up to the hospital with a blood glucose of 14...had the "ambulance" got lost or made an extra trip around the block, they may have delivered a 10 year old's dead body.

Ahhhh...that just makes it so easy to sleep at night. Awesome.

"Do no harm" is alive and well in Texas!!!

The castration of Texas...not a bull, but a cow. A big, fat, lazy cow.

2008-10-28T14:00:00.000-07:00

Election year is here and I casted my votes this morning. State Representative Scott Hochberg got my vote!!! So did a Democratic Texas Supreme Court because the Republican Supreme court is on my shit list!!! It's tough when you vote just to vote against people...

Fuel to my fire....

I received information that the "Dr." and "RN" of Lufkin State School went before a peer review board for their grossly negligent actions and they are....BACK AT WORK at LUFKIN STATE SCHOOL!!!!

What does this say about the medical profession, their peers agreeing with the low standard of practice or just being a cult that will support their peer no matter what?

Does anyone have a backbone anymore?

Where has the character of an individual gone when everything looks so damn blurry?

Who stands out in a crowd to voice their opinion, back it up with substantial evidence and stick to it no matter what people may say?

Has Texas been castrated?!?! Where the fuck is the justice?!?!?!? I'll tell you where...wait for it.

To add insult to injury, I received the news a couple weeks ago about the "doctor" and "registered nurse" going back to work to "practice medicine" at Lufkin State School, which brought up so much anger...I couldn't even respond appropriately (as if this is appropriate, but it is as good as it gets at this point). Miguel is literally functioning on the level of a 12 month old baby, a helpless, blind and Autistic kid that relies on caregivers to treat him with respect and dignity, so when a parent puts their child's welfare in the hands of "capable and responsible" PROFESSIONAL adults....you could only expect to have these standards upheld to a minimum of DO NO HARM. DO NO HARM, you know, "ethics" of such "professionals".

To further my anger (which will probably never resolve), it's election year and I heard this fantastic promotion on the radio for the ALL Republican Texas State Supreme Court, stating that we should THANK the ALL Republican Texas State Supreme Court for bringing doctors back to Texas because they were FLEEING the state due to FRIVOLOUS lawsuits.

Ummmmm....fuck you. That's the best "thanks" I can drudge up at this point. Where is the justice? Please refer to my earlier blog about the same ALL Republican Texas State Supreme Courts ruling encouraging INCOMPETENT, INCAPABLE, IGNORANT, UNPROFESSIONAL "doctors" to FLOCK to Texas because Texans don't care about their medical treatment and will NOT demand appropriate treatment for accurate diagnosis.

"Thank you, all Republican Texas Supreme Court for allowing piss poor medical treatment to your constituents. You are AWESOME!!! Keep up the good Republican work!!!"

-Kelly Favela

Lawsuit against Lufkin State School...

2008-06-28T14:32:00.000-07:00

I have sought out legal representation and per my attorney's request, I have edited this blog.

I recently started persuing a medical malpractice lawsuit against Lufkin State School and found out how crappy the State of Texas is with this issue.

Here is an intresting tidbit. Read below the response from a law firm........

Thank you for contacting us. Unfortunately, we will be unable to pursue a medical malpractice claim on your behalf. As a result of legislation passed during the 2003 session, many cases of true medical negligence cannot be prosecuted economically.

The legislation, which was the result of a multi-million dollar lobbying campaign by insurance companies, HMOs and corporate interests, immunized negligent conduct in many instances and put harsh caps on the amount of recoverable damages. It was supported by Gov. Perry, House Speaker Tom Craddick and Lt. Gov. David Dewhurst. Because of this legislation, we will not be able to represent you. You may also want to contact Texas Watch, a citizen group that fights for Texas families. By lending your name, your story and your support to this effort, you may make a difference.

Texas Watch can be reached at 1-888-738-4226 or at www.TexasWatch.org. We encourage you to seek another opinion, if you wish to do so. It is possible that another law firm may have a different opinion. Bear in mind, however, that there is a strict two-year statute of limitations in Texas. That means that you have two years from the date of the negligent act within which to bring suit. Again, thank you for giving us the opportunity to review your case. We wish you the best.

I say, we just put a big, fat, huge sign over Texas to all incompetent doctors who received their license from the same Cracker Jack box I got my lick on tattoo out of and say,

"Come practice your bullshit here!!! As long as don't kill anyone, you are OoooooKaaaaaayyyyy!!!!"

I think I am going to medical school. I can get a fat paycheck and peddle any drug I want for whatever reason. I don't even have to give a good diagnosis.

I'm gonna be in a dissociative fugue state for a while....

2008-06-22T14:03:00.000-07:00

...so don't come looking for me.

;)

Just know that Miguel discharged from a fantastic hospital to Brenham State School last Wednesday. He started to be more like himself yesterday...he was spinning. :) I've never been so happy to have him spin.

Anyhoo, it appears he may be on the up-and-up. Keep your fingers crossed!

Thanks for all your support!!!!

Kel&Migs

Don't call it a comeback....

2008-06-15T15:03:00.000-07:00

I've been here for years. :)

I woke Miguel up for lunch and dinner yesterday and the big guy woke up spontaneously for about an hour after dinner yesterday. I managed to get some good pictures of his smiling face.

He slept until 4 p.m. yesterday. He had approx a 4 hour window of being "awake". Like, eyes open, semi-vegatative. His personality came out for about 30 minutes-1 hour. :)

Miguel wearing a 24-hour holter monitor.

Wake up for feeding.

Here comes the personality.....

.....it was just a brief glimpse before he went back to sleep.

Today, Miguel woke up at 1100 and he has been up for most of the day. His lab work is leveling and we are still hopeful for positive results on his MRI tomorrow.

"The biggest conspiracy has always been the fact that there is no conspiracy. Nobody's out to get you. Nobody gives a shit whether you live or die. There, you feel better now?"

--Dennis Miller

Sweet baby....

2008-06-14T07:45:00.001-07:00

How can a 20 year old, woman with a high school education care for this child for 10 years without incident, yet, a medical staff nearly kills him in less than a week?

Chew on that.

Hate is a strong word

2008-06-14T07:18:00.000-07:00

I said "hate". Not "hate" as an action word, moreso, a very strong negative feeling. The feeling doesn't stay long. It evolves into a life lesson for me, creating better judgement. I do not carry it with me too long, however, that is my initial feeling when seriously bad things happen, that shouldn't have. Preventable things.

Mistakes happen. That's okay, to a degree. I understand mistakes. I don't understand negligence and stupidity....which causes the initial feeling of "hate".

Why people suck so damn bad...

2008-06-13T19:46:00.000-07:00

Miguel was admitted to Lufkin State School on 6/5. I didn't want to blog about it. It was the run of the mill "sad" and didn't feel like blogging about it. I was thinking that I would casually throw it into a blog someday, saaaaay, next year and we'd all be over it.

Anyhoo....something happened, which wasn't good, and Miguel ended up in a Lufkin ER on 6/11. He was transported back to a hospital in Houston and I am actually in his hospital room with him while he sleeps. I'll post a pic of the sweet guy later.

I will not give details on the matter, since it is under investigation by multiple agencies, etc. I will say that I hope this will resolve in a timely manner.

I hope justice is served to those few individuals.

The immediate and appropriate response by outside governing agencies, investigative agencies, my personal support network, my awesome state representative, Miguel's medical professionals here in Houston, Lufkin EMS and Lufkin State School social workers....their response has restored my faith in humanity, yet, again.

Having Miguel as my child has brought me to such lengths of hating people...individuals, groups, whatever...I have hated many people over the years for their shortcomings, incompetencies, etc. and there always comes a point of faith being restored. I have experienced that again this week.

Even though Miguel got a super short end of a crappy stick, there is hope.

People suck...

2008-06-12T23:09:00.000-07:00

BIG TIME!!! Moreso, the incompetent fuks that I have come across in the past week. More on that later....

Do you ever feel that punching someone in the face would be more effective than talking to them?

Talk amongst yourselves.

Let's talk about God....

2008-06-02T20:38:00.000-07:00

I want to talk about God today.

In church yesterday, the pastor spoke about how God speaks to us and how to listen to Him. I thought back to when I was a child (probably 8-10 yrs old), reading my parents Bible in the living room. I started at Matthew. I remember feeling refreshed after reading it. How bizarre? I thought.

Then I started attending church when I went into the Corps b/c it was available and spoke about every Sunday morning. What else was I going to do anyway?

In 2003, I met a woman through work. We worked at different agencies but I knew her work and appreciated her for it. I was later employed through her same agency in the same office. We spoke professionally.

Shortly thereafter, she was moved into my office and we became "officemates". Her parents were both pastors and she'd invite me to their church. I usually had a great excuse to not go.

In November 2005, I started attending church again. The following Easter I was Baptized and reborn. Of course, now I am a filthy heathen....but who isn't? I pray for me REGULARLY. I get super greedy in my prayers, too. :) It helps to have a captive audience.

I can't say "I found God" b/c I knew He was always there but I do recognize Him more often and I feel I have strengthened my relationship with Him.

Anyhoo, back to topic...God has put so many people in my life, for which I am thankful, and He has used so many vessels to keep my ass afloat....I'm sure He is EXHAUSTED, too!!!

Without going into great detail, I have noticed how a path has always formed in my life before I have walked in it, even though I don't necessarily know what is at the destination. Plans form in my heart (no, not in my head where thoughts and plans should be) without any effort, kinda like they are put there, and I follow them. As I lose touch, passion or direction, I am put on track by another vessel, whatever it may be (acceptance to grad school, a job opportunity, a State Rep, my Mexican field peasant of an ex-husband, my brother (whom I live with, yet, NEVER see), you get the picture).

I have never dreamed that I would be at this point or that I would have taken the many, many paths that I have to get here.

I just think it is amazing how a kid can say, "I want to be a pilot" and they do! They just do it. The goal is set and they obtain it. I mean, doesn't life get in the way of everyone?!?! It blows my mind that a solid goal can be set and obtained.

With that said, I feel more like a gypsy in life. I'm never quite sure where I am going, nor where I will be but I am sure that I will get there safely.

Hochberg for President!!!

2008-05-29T16:20:00.000-07:00

This blog is a little late...

My State Rep. KICKS ASS!!!!

He and his office are working very hard on Miguel's case. I knew he was kicking butt BUT it was great to hear that from my local MHMRA. They informed me of all his work and adamant advocacy within the MHMR office, Richmond State School and Dept. of Aging and Disability.

With that said, I believe that I have never had someone work so hard for Miguel and me, with the exception of one of his teachers, Julie Rohrbach, who got Miguel into an Autistc classroom.

I've always had resistance from every system. I know there are always a boatload of services that are never offered unless you ask for them specifically...and then beg for them....and then have to justify why you should get them....and then tell them over-and-over again that you are going to get that service. The system blows.

I think Rep. Hochberg is going to have to get a t-shirt delivered "I heart Hochberg" and "Hochberg for President".....why didn't I go into politics?

That's where the REAL change is!!!

"Politics is not a bad profession. If you succeed there are many rewards, if you disgrace yourself you can always write a book."

-- Ronald Reagan

This past month, I have felt the rewards of politics. :) Go Hochberg!!!

I hate people.

2008-05-20T19:43:00.000-07:00

Miguel gets nothing without resistance. Here's my letter to my State Rep. today........

Scott,

Today I rec'd a call from Janice Baines, MHMRA. She explained that the state wanted to know why Miguel needed residential placement, despite the fact they have all his evaluations, paperwork, applications and a court order. I then had to explain to her about Miguel's physical/verbal aggression towards himself, me, school staff, children at daycare, daycare staff, etc. even though that has been documented at MHMRA already.

She called me back a little later asking about my Respite services and recommending that I find more providers, as I had explained that my Respite worker appeared to be getting tired of providing Miguel services. I explained my great difficulty finding daycare and contracting a Respite provider.

She also asked if I would be willing to take Miguel back into my home in 6-12 months after admission, if it was warranted. I said yes. Of course, my son is always more than welcome to live at home, however, I don't feel that is what is appropriate for him based on his need for structure, consistency, 24 hour care and his behavior. My son needs a staff and not a parent. I didn't tell her that b/c they would NEVER admit him.

Basically, the state is trying to save money by keeping Miguel in the community, so they are trying to smother us with Respite hours and justify why placement is inappropriate.

The bottom line is that Respite does not equal appropriate behavioral treatment. It prolongs the inevitable, which is placement.

MHMRA is offering Miguel ABA therapy (specific behavioral treatment for Autistic children) 1.5 hours a month. This would require me to take a day or half a day off to get Miguel from school, bring him in for a session and then bring him back to school. ABA therapy is only therapeutic when it is intensive, approx 8 hours a day, everyday...not 1.5 hours a month.

Miguel has an IQ of less than 20. He is profoundly mentally retarded with a prognosis of possibly being severely mentally retarded (this is suppose to be an upgrade). His speech is inadequate, inconsistent, inappropriate and sometimes absent. 1.5 hours a month of ABA will, most likely, be completely ineffective.

Miguel is not eligible for behavioral treatment b/c he doesn't have Medicaid and I could never afford it on my 34,9K salary.

Scott, we have a load of Respite hours. 57 a month through MHMRA, which started this month. 200 hours a year (approx....I actually forgot how many) through United Cerebral Palsy, which I started last October. 8 hours a month through HISD. The problem with Respite is, I have one provider, who is exhausted and appears to be annoyed with me if I ask for more than 4 hours a week. She also has a full-time job working opposite shifts of me, which is not always conducive to my Respite needs.

Ms. Baines tried to problem solve with me to find more Respite workers. Fact of the matter, if I found someone through my networking that was appropriate for Respite work, then I would've contracted them already.

Scott, I joined the Corps when I was 17 and turned 18 one month after boot camp. I was a Sergeant of Marines by the age of 19 and a Platoon Sergeant before I was 21.

In 2003, while taking a Research Methods in Psychology course, I diagnosed my son with Autism after 3 years of inquiring to medical and educational professionals about Miguel's strange and bizarre behaviors.

I have a Master's in Social Work. Miguel and I moved out of my husband's home in 2005, I applied for a Master's in 2006, was divorced shortly after and put myself through a full-time Master's program with a scholarship, financial aid and 4 jobs....all while I was a single mother. Within a month of graduating, I was hired by the Red Cross in Houston and I humbled myself by asking for housing assistance from my brother, all in effort to meet my sons needs. Miguel and I have shared a room, sleeping on daybeds and we will be moving in a month to our own home.

I am telling you this b/c I am not dumb. I'm not an idiot. I am not a sissy and I have tolerated more than anyone ever should from systems and from my son. I understand systems, funding and budgeting. I see their agenda. The few things I have gotten for Miguel, have not come without a fight and I knew this was too good to be true. It all seemed so smooth and easy and I foresee my hopes and dreams for Miguel crashing in on me.

I asked for your assistance b/c I know how systems view clients and how tightly systems hold onto their purses. I know how much work you have done for Miguel already, which appears to me like moving mountains b/c no single mother could ever do it.

It has been a super long road for Miguel and me to come to this point and I have not gotten here with ease. I have struggled on all decisions I made for Miguel and I evaluate them meticulously before going forward with my decisions. I am comfortably at the point where I know Miguel needs a staff, despite my crying throughout the court hearing, I know this is right.

If there is anything else you can do at this point, I would greatly appreciate it. It feels as though they may be trying to stack the cards against us and Miguel's father and I are strongly considering signing our rights to the state so Miguel can better get his needs met.

Thank you in advance.

Kelly

Hey Tarabay, have your people call my people.

Anticipating a new start

2008-05-18T19:41:00.000-07:00

Court was "successful", if that is what you want to call it. I testified that Miguel was not manageable in his "least restrictive environment" (LRE) and that he was in need of a more structured environment.

Miguel's evaluations show that he needs "constant supervision" and a level of need is an "8", which indicates residential placement.

I am part relieved that Miguel may get his needs met by a 24/7 staff, that I won't die an early death from exhaustion and emotional beatdown and that Miguel may learn to live more independently and maybe even communicate his needs better. I have hope that this is what is right for him.

I am part sad b/c he is only 10 and "going away". I liken it to maybe how a parent feels when their children go off to college. However, the difference is 18 yr. olds CHOOSE to go to college and I am going to court to COMMIT my child to a State School. It's such a painful process and unique, that no one would ever understand if they haven't done it.

The other side of it all, which I have thought about briefly, is how this will change me.

I've always worked my life around Miguel. All things in Miguel's time. I scheduled my college classes/jobs/domestic tasks around his school/daycare/bus schedule/mood. I function based on his agenda and now I will be able to do WHATEVER I WANT, WHENEVER I WANT. I have NO idea how I will respond to this sort of freedom. I never did what I wanted to do, but rather what I had to do....and now it is my time. I haven't had this in 10+ years.

I tell my close friends that if I disappear, don't bother looking for me. I may go to Mexico for the day and return in a decade. I consider selling beaded jewelry in a tiki hit on the beach...somewhere. Fortunately, the sky is the limit and hopefully, I figure out how to function without him.

Hey!!! Heeeeey!!!

2008-04-30T20:02:00.000-07:00

Last week, Miguel started sleeping Thursday. So, he was "ill" Sunday through Thursday. Friday he attacked staff when having to get on the bus. Apparently, he was biting and headbutting staff all the way to the bus.....Welcome to my world.

Changing subjects a bit....Fox News is having segments on Life with Autism. I can't identify with any of it but I will keep watching anyway.

Alright, back to Miguel and progress with the system..... Yesterday I toured Brenham State School and I have decided that this is where Miguel will reside. Today I filed a motion with the court to involuntarily admit Miguel to Brenham State School on the basis of "harm to self and others". His court date is set for 5/16.

Aside from that, the systems that I have dealt with since beginning this process have been insensitive, rude and uninformed/incompetent.

I wish this crap on no one.

"I always wanted to be somebody, but now I realize I should have been more specific."

-- Lily Tomlin

So it wasn't allergies =(

2008-04-22T16:27:00.000-07:00

Miguel is "sick" again. The spinning, bathing throughout the night, refusing to sit/lay down, waking up at 0330, the funny breathing pattern, the screaming and fussing...

It started Sunday night, let's see how long this one lasts.

A man's got to believe in something. I believe I'll have another drink.

--W. C. Fields

My other handsome baby

2008-04-20T19:19:00.001-07:00

Saul Sausage Sullivan

"Sully"

Friday night...

2008-04-20T17:30:00.000-07:00

Miguel said...

"Abbey, Andy, Sully, get in the house."

Meet Abbey, Andy and Sully...

Miguel hasn't said that since Friday but it was cute and unexpected. Sweet boy.

Wali-tin to the rescue!

2008-04-15T17:49:00.000-07:00

WTF is WALI-TIN?!?!?! Walgreens generic Claritin!! Yeah, so Migs mystery illness that has been plaguing the household is, no other than, ALLERGIES! Who woulda thunk it? My allergies have come back, too, after many years without. So, Miguel is back up to speed...raiding the fridge (lunch meat and spaghetti today), spontaneously screaming his ass off (just for fun) and putting weight back on. He is up 2 pounds and feisty for a beefcake. :)

We have been sleeping through the night and had a dry bed last night. I think I heard Miguel wheeze tonight...it was kind cute and sad at the same time. Little booger. :)

Today was an exhausting day. I went to look at homes this morning, had an ARD at 1000 and Migs had a neurology appt. at 1400. It all went fairly well but it is amazing how it manages to suck the life out of you! I'm pooped and I hope to be in bed by 2100....uuuuhhhhh....sleeeeeeeeep.

....uuuuuuuuuhhhhhh....

"Everyone should have kids. They are the greatest joy in the world. But they are also terrorists. You'll realize this as soon as they are born, and they start using sleep deprivation to break you."

-- Ray Romano

"Sick", again.

2008-04-09T16:56:00.000-07:00

Last week was soooooo AWESOME!!!! Miguel slept normally, he was in a fantastic mood ALL WEEK and he was so chatty. He was singing songs spontaneously (Ring around the Rosie, Baby Beluga (an all-time fave of mine)) and on Sunday he started to say a phrase I never heard before. I couldn't make out what he was saying but it sounded familiar. It took me a while to realize that he was repeating the sound of one of his toys. It's a big, red car with a mommy, daddy, apple, and something else button on it. When you press the mommy button it says, "This is Mommy. Look both ways before crossing the street." That is what Miguel kept saying all day long. The funny thing is, I've never heard him say that and he hasn't played with that toy in 2+ years!!! That is just amazing!!! I can't even remember 2 days ago, let alone 2 years ago. It's just wild.

Anyways, on to the bad news......

Miguel went to bed this morning at 0510. How do I know? Because that is when I picked up my blanket and pillow off the floor in front of the bedroom door and crawled into my bed. The past 3 times he was sick, I did this because he stays up spinning with intermittent screaming and sometimes leaves the room to visit Uncle Jason or the refrigerator. So I camp out in front of the door so I can get more sleep.

Miguel started the spinning, labored breathing and "hand pump" Monday night. I saw it briefly. I thought "oh shit". Then last night it came over us and I can't wait until it is over. I am starting to wonder if it is intestinal. He doesn't like to sit on the potty for more than 1/2 a second, he stops BM-ing and he wets himself more...like A LOT. I am going to call his pediatrician tomorrow. Maybe I'll get more than a shoulder shrug.

GOOD NEWS!!!! I met with a local agency and started paperwork for In-Home Services. Once everything is processed, I will find out how many hours a month we will receive. Also, they are looking into State Schools w/o signing over parental rights. I have that application to complete, too.

Next Tuesday I have an ARD. Can't wait. Miguel has a neurology appt. on Tuesday, too. Maybe he can shed some light on Miguel's woes...... Let's hope!!!

Weekly recap

2008-03-27T16:52:00.000-07:00

Let's talk about the illness that has plagued Migs. He was sick with some "undetermined" illness 2/24-2/28, which I brought him to the doctor on 2/25. Then AGAIN from 3/11-3/16, which Uncle Jason brought him to the doctor on 3/13 and I had bloodwork done on him on 3/14.

Nothing was wrong, according to the labs and the pediatrician.

THEN on 3/19 Miguel came down with a cold and he just started to get over it last night, which was the first night he slept through until morning. In fact, Tuesday night he didn't fall asleep until 0500. :( How I function is sooooooo beyond me.

Anyhoo, tomorrow is his regular follow up with his endocrinologist. Thankfully, no labs have to be taken. :)

In summary, the past month and 3 days Miguel has been sick for 17 days. Poor baby. That sucks. As of yesterday, I started to come down with a cold, or allergies. I am not sure. :\

So, I've decided to post a lot of pictures in celebration of sleep and feeling better!!!

Miguel and his after school staff back in Illinois. The girl to his left is Amanda Massong, his super nanny and my only saving grace while getting my Master's.

Hanging out at the bar...with his Grandma. Only in Texas, I say, only in Texas.

Just being handsome.

Waiting for the bus.

A favorite pastime.

Alright, the party is over. You don't have to go home, but you can't stay here.

The results are in!!!

2008-03-21T15:11:00.000-07:00

No one has a clue...this boat is getting a little crowded. Migs labs were fine. I was really pulling for an issue that would explain this crap away, but we can't get everything we want....can we?

Boooooooo!!!!!!

So, Miguel was feeling and doing better this week and came down with a cold last night....runny nose, light cough....symptoms I can work with!!! YEAH!!!! He's handling it well and we are both off today, so I thought we'd go outside in the beautiful 70 degree weather and try to enjoy the day.

Miguel attacked me at DSW and we went straight home for a PRN of Clonidine. Oh, Clonidine, oh how I love thee? Let me count the ways.....

Once I was able to get my flustered and embarrassed self together, I offered his father to take him or I'd leave him in an alley. Is that wrong? Of course it is. However, nowadays, after getting attacked by him I quickly think about signing my parental rights over because, well, THIS IS BULLSHIT! Seriously. It is.

Thankfully, Miguel hasn't attacked me in public in a long time and that is only because I don't take him out anymore for that exact reason. He's gotten me in restaurants, friend's homes, bus stops, parks, stores....you name it and I am sure I've been assaulted there.

Anyway, I am tired of it. I think this may be what it looks like to give up.

"I love you like a fat kid loves cake."

--50 Cent

Spring break blows...

2008-03-17T05:53:00.000-07:00

When did kids start getting such long Spring Breaks?!?!? Miguel got out of school at 1245 on Thursday and won't go back until next Tuesday. So dropping him off at daycare was a real treat this morning. If you are familiar with the 2 yr. old that has separation anxiety and screams when you leave them....imagine that at age 10, 124 pounds.....a treat, I say, a reeeeeeeeal treat! ;)

Anyhoo, I want to recap the last few days. Miguel exhibited the same symptoms along with the inability to hold his urine lsat week. Friday morning (or Thursday night) he woke up at MIDNIGHT, as I went to bed at 2315. He stayed up from Friday morning midnight until Friday night at 2230....yes, we had a 22 1/2 hour day Friday.

I contacted the endocrinologist on call and ordered labwork. Miguel's results should be in today. I hope it identifies an issue. I'd hate for Miguel to go through this again in one week, per the trend he has set with illness. I just don't like a mystery with Miguel.

It's a case of the "moooove over"s and the "ya wanna go???"s.

2008-03-13T17:29:00.000-07:00

It is official. I don't have the slightest clue about what is going on with Miguel. I have no idea what he is responding to when he has labored breathing, won't sit down for more than 3 minutes, screams intermittently, wakes at 0200, bathes incessantly and spins constantly. He also repeats "you wanna go?" all day and "mooove over" all night. Tuesday night, he'd tell me "moooove over", which means "come lay with me". So I'd crawl into his bed. We'd get cozy. Then he'd push me out or go get in my bed. Then he say "moooove over" and I'd go lay with him....he'd push me off the bed or go get in his bed. You get the picture? Yeah. All night.

These use to be symptoms of illness, however, there is no fever, cough or congestion and the doctor looked in his ears, nose and throat and listened to his lungs. He checks out fine! Miguel is a mystery.

Monday he woke at 0500. Yesterday he was up around 0300-0330 and today he was up at 0200. It is like raising a newborn.

"Hey sweet boy."

--Miguel Favela

Employment interferes with my life as a blogger... =)

2008-03-11T18:58:00.000-07:00

I'm feeling out of touch here but the upside is, I've been busy on a variety of tasks. Thanks Judith for the Texas Autism Advocacy link. I've joined and received a lot of feedback. Perhaps a loop hole could be through Medically Dependent Children Program for Medicaid. I'm looking into that and I am waiting on more info from the DMR last week with regards to further guidance for placement. I'm also looking into a behavioral treatment program.

In the meantime, I am working on professional goals and maybe a new living arrangement.

On another note, Miguel is getting sick again. He was up at 0430 spinning and was in the tub by 0500. This will be our fourth consecutive week of passing cooties. :\

Just for record keeping, Miguel had a meltdown Friday night on the way home from respite. He attacked me coming in the door. He managed to cut my lip in the process. Uncle Jason intervened and the issue was resolved in a more timely manner than usual. It was also helpful that it happened at the end of the day, when all that is left is sleep.

Aaaaaaahhhhhhhh.........sleeeeeeeeeeeeep.........uuuuuuuuuhhhhhhh........

Yeah, I'm sick.

"Everything is funny as long as it is happening to somebody else."

--Will Rogers

Pepto Bismol is our friend

2008-03-06T05:17:00.000-08:00

Two weeks ago, I was under the weather. Last week, Miguel was sick. This week, Pepto is our new BFF! =) Aside from the common case of the yuckies, Miguel had his DMR yesterday. It took 4 hours and thankfully I brought a lot of snacks.

Miguel was very angry and upset for 90% of the process, probably because it was out of his regular routine and he didn't know what was going on. Nonetheless, he is usually great for appointments. Any excuse to play hookie is fine by Miguel. Yesterday, this was not the case and it made for an exhausting and stressful day.

So the verdict is, Miguel is Autistic. Duh. ;) and Profoundly Mentally Retarded. I think the label is awkward b/c I don't see him as MR, let alone PROFOUNDLY. He is sly as a cat, yet, super Autistic and a bit of a pain in the neck....but this is not a label that will get him services.

Now that he has the DMR, I can look into placement more and Miguel will be put on another waiting list for other services. I am also researching the Parental Rights portion of placement.

http://www.pepto-bismol.com/pepto_dance.shtml

Miguel is sick.

2008-02-25T15:12:00.000-08:00

Today was my first vacation day and Miguel went to the nurse's office for a low grade fever. =( Miguel hit the nurse in the chest while visiting her office. I wasn't able to be reached, so Uncle Jason showed up, with 4 other firemen in a fire truck, to keep Miguel company until I got there. :)

I took him to the pediatrician, who Miguel slapped in the face while visiting. His check up was fine. Just a bug that will probably keep him out of school the rest of the week, also known as my last vacation for the next 6 months.

On the upside, I contacted MHMRA and they will try to squeeze Migs in for a DMR Wednesday morning. They will call me tomorrow for confirmation. =)

"Cheerfulness is the best promoter of health and is as friendly to the mind as to the body."

--Joseph Addison

We are baaaack!

2008-02-24T08:19:00.000-08:00

The first week out of commission my computer was blogging impaired and I had some tough pills to swallow before blogging about them.

This past week, I was sick and ending a job. I'm still under the weather and I have the week off before I start a new job, that I am less than excited to take, as it is a pay cut. However, it is a job and a paycheck.

In retrospect, Miguel has been okay at home (because we don't leave the house anymore, really) and hell at school. A lot of hand licking has been going on and he wet himself at daycare three times last week and one time this week. That happens when there is a new teacher in the room. They don't see Miguel's signals.

Two Tuesdays ago, 2/11 I believe, Miguel had an evaluation at school and then later that night at home for in-home services. This would bridge his ARD (IEP) goals from school to home. That day at school, he was throwing chairs and trying to lift the table. A very angry day. We discussed how he wets himself at school all the time, the evaluator felt it was a means of task avoidance.

What I am also coming to terms with is that there is no "method to Miguel's madness". He's Autistic and "it is what it is". In review of his blog and behavior chart, there is no "precipitating factors" to anything. He is a mixed bag of nuts and I never know what I am going to get. I've come to accept that. I do know that he needs a better treatment and a more consistent/isolated living/education environment. Getting on the bus, going to school, daycare, stores, dinner, respite, the park, anywhere for entertainment.....it's all overwhelming for him.

Today we should be in Austin watching the races at Pace Bend but I don't have the energy to deal with or manage Miguel, in the event he has a meltdown (which he 99.9% chance will meltdown), nor do I care to pay a sitter. In January, I was looking at my expenses and wondering where all my money was going b/c I couldn't save a DIME!!! I don't spend money on myself, either. I'm low maintenance...I think I have clothes from High School....now that is a scary disclosure. As I cut back on the sitter, I find I am saving a BOAT LOAD of money!!!! I use her so I can go ride my bike for hours and run a few miles to blow off steam. Unfortunately, I am also slowly losing my mind.

Moving on....

In the meantime, I've been investigating local group homes and getting on various waiting lists. Through my investigation, I have found that Miguel needs an "ICAP" (I can't recall what the acronym stands for) and a "DMR" Determination of Mental Retardation in order to get accepted to any facility. Based on his scoring on the DMR and ICAP, will tell how much money the facility will receive from the state for caring for this class of individual.

I am still waiting for an appointment to get these evaluations complete. The organization that does the evaluations (MHMRA, Mental Health Mental Retardation Association) is awaiting records from his school to schedule the appointment. Due to having private insurance and not the GLORIOUS MEDICAID, it will have to be afforded out of pocket, as private insurances usually do not cover these charges.

Furthermore, State Schools and Group Homes aren't covered under private insurance. Miguel needs GLORIOUS MEDICAID and SSI to get residential assistance, which includes residential behavioral treatment, too.

The result is, we would have to sign over our parental rights to the state so that Miguel can get Medicaid and SSI for services.

....yeah....(long pause to let that one sink in real good........).......

Right.

Ok. So, anyone who knows me is like, "YEAH RIGHT!!! THE HELL WITH THAT SHIT!!!!!" But anyone who knows me and Miguel are like, "yeah. This was inevitable." So I am still choking on it.

I spoke to his father about it and all the options, my concerns, etc. We shared in an expletive-filled conversation about how rich people and poor people get to keep their kids and the working middle class gets screwed by the system.

This is ridiculous.

"For in all adversity of fortune the worst sort of misery is to have been happy."

--Boethius

Good Morning, Friday!!!

2008-02-08T12:29:00.000-08:00

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

2008-02-07T07:11:00.000-08:00

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

2008-02-05T07:50:00.000-08:00

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...

2008-02-04T09:57:00.000-08:00

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!!!

2008-02-01T07:27:00.000-08:00

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!!!!

2008-01-31T06:50:00.001-08:00

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

2008-01-30T06:03:00.000-08:00

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.

2008-01-29T06:58:00.000-08:00

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

Is this Heaven? No, it's Iowa.

2008-01-28T11:04:00.000-08:00

Miguel and I went on a trip to Chicago Friday morning. We took the 0635 flight and I was quickly reminded what a good traveler Miguel is, especially early in the morning. As the day goes on, his good behavior dwindles.

This blog will mostly be pictures because I get tired of thinking. =) YEAH PICTURES!!!

If Miguel could just travel the world, his Autism wouldn't be so difficult to manage.

The key is to stop frequently for potty breaks, provide many snacks and juices and be able to stretch the legs from time to time....but without stopping the movement. Take him by train, bus, car, boat, plane but don't STOP. Stopping isn't good. =) Oh, and it would be good if the bathrooms on the airplane were LARGER. It's like a clown car with Migs and me in it!!!

Here is a good stim picture. He's blowing on his hands. I prefer him blowing on them than licking them. It gets rather unsightly, the licking. However, he makes the funniest and most intense faces when he licks.

Blowing and flapping.

Raspberries and flapping.

.......more blowing and flapping. He makes loud, happy noises when he does this, I am sure the other patrons on the flight LOVED this at 0635!!! Hey, it beats a screaming baby or the obnoxious, unattended child that kicks the back of your seat and throws magazines over the chair at you.....I can't stand those kids.....or their parents. = )

Handsome guy.

I like this pic. I took it with my cell and I think it looks cool, all white-washed.

This one is my FAVORITE!! Despite the fact his ear looks ENORMOUS, the profile and lighting is great. Me likey.

So, we get to Chicago and Miguel spent the day with his father, the Mexican peasant worker, and I spent the day shopping, eating and drinking with my mom. She can hold her liquor....and that, my friends, is where I get it from! Thanks mom! ;)

Then I went to visit my BFF Dana and her baby, Kenny. Dana and I have been friends since 6th grade and we are still socialized like 6th graders... it's bizarre and probably unnerving to anyone who has to witness us.

Here's Dana and Kenny. We cuddled on the sofa and watched Food Network after dinner.

Here's Kenny, happy to see her Aunt Kelly.

Here's Dana, happy to see me after 7 months.

The next morning, the Mexican peasant worker (aka, chauffeur or Jose), Migs and I drove out to Iowa to attend a birthday party for our old friend, Beau Zaruba. I met Beau in January 1997 in Quantico, VA. I later met his wife, Jaime, in May 1997. They introduced us to the enjoyment of board games and golfing. Beau, Jose and I all worked together in the same shop and after work we golf, have dinner together, play games, go to movies, go shopping, whatever....we did it. We had great times working and hanging out together.

They were known as "Bo n J" to Miguel. Jaime's laugh is HILARIOUS and when Miguel was a baby, he'd laugh every time he'd hear Jaime laugh. They were the first Aunt and Uncle Miguel knew, aside from Uncle Jason, of course.

Me. Trying to look pleasant for a 4 1/2 hour car trip at 0745.

By the way, did I mention....IT IS COOOOOLD in Illinois?!?!?!? Well, IT IS! When I landed, it was a temperate 0 degrees! :(

More IL scenery on the way to Springville, Iowa.

Miguel, not liking the cold, either. =) Sweet baby.

On our way to the party in my WARMEST Houston, TX attire..... so sad. Thank God for body fat. =)

The hottest picture I've seen of Beau... LOL!!! The cake was AWESOME!! Oh, and it was super yummy, too!

Heeeeeere's Beau!!! He's thirty...he is sooooo old. ;)

Migs and Jaime.

Miguel lovin Beau.

Miguel going for the jugular. =)

L to R: Chris and Sherry Coleman, me, Jaime, Beau and Jose.

We voted ourselves the "awesomest friends table", since Chris and Sherry drove up from St. Louis and Jose and I drove out from Chicago. Chris and Sherry were Beau and Jaime's neighbors in Quantico, VA. It just amazes me every time we all get together, how it feels like we've never been apart. There is such strength in the comradary in the Marine Corps and the bond that it builds, as all of my oldest and closest friends are Marines, with the exception of Dana.

Leaving Iowa.

Can't wait to get back to the Houston weather.

This may be my last drive out there for a long time, so I took a lot of pictures. I use to go visit them 2-4 times a year when I lived in IL. I went back to school for a Master's Aug 2006, so this is my first time seeing them since May 2006. It doesn't seem like it's been that long but the size of our kids reminds us that is has been too long.

Miguel staying warm and just being handsome.

Me staying warm and not being handsome. =)

Thinking about getting on the plane in a little bit.

Almost there.

Stimming at the airport.

Miguel slept well through the nights while we were home, probably due to the 13 hours of travel in the past 3 days. He only had one meltdown and it was at O'Hare on the way back to Houston. It was a middle of the day flight at 1525, so his behavior was on a decline, and he didn't want to take his shoes and coat off going through security.... I didn't want to, either, but he had a real good meltdown, crying...boogers EVERYWHERE...trying to eat the boogers...poor baby.

That's another thing, too, he's been picking his boogers and making a B line for his mouth. We are going to have to work on that one because, well, that is just sick. =)

"It is one of the blessings of old friends that you can afford to be stupid with them."

--Ralph Waldo Emerson

Who is this kid?!?!

2008-01-24T07:54:00.001-08:00

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!!!!

2008-01-23T11:26:00.001-08:00

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!!!! =)

2008-01-22T07:10:00.000-08:00

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

Social Worker follow up...

2008-01-18T10:49:00.000-08:00

The school social worker contacted me, as a follow up from my initial concerns I voiced to the school on 1/8/08 re: Miguel's uncontrolled acts of aggression, need for consistency due to difficulty transition and my inability to manage him for the past month, or so.

With regards to resources for Miguel, he'd be better serviced and serviced more quickly if he were on Medicaid. It's a shame that my education and employment makes my son suffer in regards to receiving services and I suffer in regards to my son kicking my ass on a whim. Nice. ;) Well, we'll make it through fine. I called to get on a waiting list for services, which it will take 8-10 years to be serviced. They may even find a cure for Autism before I get called! LOL!

Anyway, I told her that I was seriously considering placement for Miguel, based on his mood, behavior, aggression and need for more support. With that said, I may move to the front of these lists for assistance.

This morning Miguel was cooperative. A little bit of fussing and grunting but no swinging! :)

"Let no one who loves be unhappy, even love unreturned has its rainbow."

--James M. Barrie

Smooth sailing....so far. =)

2008-01-17T10:45:00.000-08:00

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

JACKPOT!!!!

2008-01-16T11:07:00.000-08:00

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

2008-01-15T08:45:00.000-08:00

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

Goooood mooooooooorning!!!

2008-01-14T09:09:00.000-08:00

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

Tough transitions...

2008-01-12T15:42:00.000-08:00

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...

2008-01-09T09:55:00.000-08:00

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?

2008-01-08T06:43:00.000-08:00

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....

2008-01-07T14:12:00.000-08:00

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

WOOOOOO-HOOOOOO!!!!!!!

2008-01-04T11:19:00.000-08:00

The weekend is here!!!

Miguel will return to school on Monday!!! The bus will pick him up and drop him off!!! He will have structure!!!! Maybe even get a bit of an edumacashun!!!! Oh, and I won't have to pay a crap load to daycare.

Over the summer, daycare cost $600 a month. :( This is a fee that will have to be afforded for him his whole life, since kids without disabilities eventually TAKE CARE OF THEMSELVES! What a luxury?!?!

Miguel was great the past couple nights and this morning. He liked the turkey chili I made for him and the GFCF peanut butter cookies (w/ Splenda). So we are on good terms and the year is off to a great start!!!

A little side note: BM and mood. Miguel's lack of BM affects his mood IMMENSELY! His BMs this week have been regular and he has been happy....I wonder if it is the chili or cookies that had this effect on him b/c he normally isn't "regular"? Alright, that is my deep thought for the day because it is Friday and I am not capable of functioning well on Fridays. :)

Look, I don't want to wax philosophic, but I will say that if you're alive you've got to flap your arms and legs, you've got to jump around a lot, for life is the very opposite of death, and therefore you must at very least think noisy and colorfully, or you're not alive."-- Mel Brooks

Happy New Year!!!!

2008-01-02T12:30:00.000-08:00

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!!!

2007-12-27T08:16:00.000-08:00

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!!!

2007-12-26T13:13:00.000-08:00

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

UnJay a.k.a Uncle Jason

2007-12-21T08:16:00.001-08:00

What kid gets a private tour of a fire station (Rescue 10 HFD)? MY KID! ;) It's all about nepotism, baby! :)

Miguel and I live with my brother, Jason. Miguel and Un Jay bonded at an early age, probably by wrestling and rough housing. Miguel grapples. True story. He also loves his "Un Jay"!

Even when we lived in IL, Miguel would ask for Un Jay. We'd respond, "Miguel, Un Jay is in Texas." That would not stop him from requesting the presence of Jason.

When Un Jay would come to town, he'd take Miguel for the day and show him off to anyone because he is a proud Uncle. One day, when Miguel was about...3 or so... Jason took him (and my truck) for the day while I commuted to Chicago for school. Jason and Miguel met me at the train station around 1530 and Miguel appeared....hungry. Through conversation about how Miguel's day went, I found that he had no solid foods....JUST MILK. Apparently, Jason is not savvy to the parenting aspect of feeding a child solid foods. Perhaps he should've came to town more often to visit his nephew! :)

Un Jay would always ask me when we were going to come and visit him and when I was going to put Miguel on a plane and send him to Texas to visit.

Silly Un Jay. Ask and ye shall receive. Now we live with you!!!

Hopefully, we'll move out before him. I tell him if he moves, make sure the new owners know that they are purchasing the home and the people in it...

Otherwise, he has to find a 3 bedroom so we can all fit! :)

At first, the thought of living with my brother was hard for me to grasp. I've been on my own since I was 17 and I was not prepared to freeload EVER. My mom raised us to be independent and capable individuals and I hadn't lived with my brother in 14 years, so this was going to be interesting.

A few things I learned in the past year....freeloading is not so bad, if you find a way to pull your own weight. I pull weight with cleaning and grocery shopping. Not bad at all.

Secondly, being unemployed is underrated. I found great enjoyment in myself in between my Master's and seeking employment.

Thirdly, I always appreciated my friends, family and social support but you really find out the ENORMOUS VOID they fill, when you lose it all.

Fourthly, my brother is AWESOME!

"Nothing is a waste of time if you use the experience wisely." --Auguste Rodin

Helpful resources...

2007-12-17T08:09:00.000-08:00

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!!!

Got mood swings?

2007-12-14T09:42:00.000-08:00

I recently posted that Miguel was a bit difficult Monday after school and he was a bit feisty over the weekend (amped up, spastic, assertive, etc.).

Tuesday morning and evening, he was fine.

Wednesday morning he didn't want to wake up, get out of bed, put his shoes on or go to school. He swung (more like jabs) at me a couple times down the hallway and on the stairs, jabbed at me with his shoes and tried to kick me a couple times and wasn't compliant with me holding his hand (he'd push his thumbnail into my hand or just pull away with force).

In short, he was angry and frustrated. Surprisingly, a banana appeased him and we were able to move on with our day.

School reported that he was GREAT at school Wednesday. (????) That's weird.

Wednesday night and Thursday morning he was great, too. However, school reported similar defiance that I experienced Wednesday morning at school on Thursday.

Miguel's mood can be described as volatile but I can never pinpoint the precipitant or the cure......that's my deep thought for the day.

So, let's talk about last night.... I took Migs to the bathroom around midnight and after I put Miguel to bed, I heard him "coo-ing". I then assume, "crap, he's up until morning and then he'll probably fall back asleep at 0630 and be difficult to get ready." Much to my surprise, he fell asleep! I woke up in the middle of the night and turn over to see the back of his head on my other pillow....which freaked me out because I was groggy and he appeared to be a grown man! LOL!!! I quickly came to my senses, noticing it was my beefcake, and I wonder how he crawled over me, got under the blankets and stole my good pillow!!

He is stealthy. :) I don't know how much longer my bed will hold out with us meaty monsters in it, mind you, it's a daybed. Yeah, that's right. A twin sized daybed supporting more weight than it was manufactured to support, I am sure. :)

(This pic was from when he was sick in May 2007 and inconsolable. It is a brief glimpse of peace before he wakes.)

Newest development: When I say, "I love you." He responds, "I love you, too!" He sounds all sing-songy and CUTE!!! 12/11/07 I'm working on him responding to "how are you (doing)?"

Ahhhhh.....that's some GOOOOOOOOD SLEEEEEP!!!! (ALL BY HIMSELF!!!!)

"Nothing is miserable unless you think it is so." --Boethius

GFCF....My hero!!!

2007-12-12T07:02:00.001-08:00

One step forward, two steps backward...

I didn't want to blog yesterday. I felt Miguel was decompensating in his communication when I had picked him up Monday after work and I was crushed. Here I was boasting about his strides in communication over the past week and Monday he was banging his head more, screaming, had increased frustration, was non verbal and fussy. So I held off on the blog to see if Miguel was going mute again or if it was just a bad day. I suspected that maybe daycare or school gave him a non-GFCF snack and I was pissed. I really like this diet for him because I believe his increased appropriate communication is in direct relation to the diet.

A little background on GFCF: It is believed that Autistic kids have difficulty processing/metabolizing gluten and casein, so it acts as a drug in them, hence, the erratic (shitty and intolerable) behavior.

Every day with Miguel is a mixed bag of nuts.

People ask, "how is he with....?", "does he respond well to....?", "what does he think of....?" and I can't answer. The truth is, you never know how Miguel will behave in response to situations, environments, experiences, toys, foods, etc.... He is consistently inconsistent, so I just try everything. One day he may love something and the next day he'll flip out about it....but there is always a chance he may love it.

Good news of the day...

Miguel was awesome last night, despite his unwillingness to go to sleep lately (even with the .1 mg of clonidine). He was chatty and fun. He hasn't responded to a question appropriately since Saturday but I hope that will begin to develop more. Last night Miguel was showing off his mad communication skills for his Uncle Jason (one of his favorite-ist people ever!), repeating words, giving hugs and kisses.

This morning Miguel woke up at 0300 but was is a great mood and fairly quiet. He took himself to the bathroom twice and hopped in the tub the second time, before I could intervene.

While I was getting ready for work, Miguel and I were in the bathroom and our conversation went a little like this...

Me: "Good morning, Miguel."

Migs: "Good morning." (said in a sing-song manner, mocking me) :)

Me: "How are you?"

Migs: "How are you?"

Me: "How are you doing?"

Migs: "How are you doing?"

Me: "Miguel, say "I'm good"."

Me: "Say...."I'm good"."

Migs: "I'm good."

Me: "Well, goooood! That's GREAT!"

Miguel smiles and walks out of the bathroom.

AAAAAAAAAAAAAAAAANNNNNNNND SCENE!!

"Success is going from failure to failure without a loss of enthusiam."

--Winston Churchill

Crap...I feel SUPER SUCCESSFUL!!!! :)

Boo-nanas it is!!!!

2007-12-10T08:39:00.000-08:00

Great achievements over the weekend include:

*Miguel didn't raid the refrigerator once this weekend. (Yeah!!!!! My lunch meat lives to see another day!)

*Sunday morning Miguel had his standard 2 Wheat free/Gluten free waffles, watered down apple juice and banana. When he is finished he holds his plate in the air and says, "gimme." This pretty much means, "here you go, I'm done.....but you may want to give me more." So, the little dude keeps holding it over his head repeating, "gimme, gimme" which he starts to stretch the word out in a deeper voice, in the event I couldn't understand him or hear him, "gggeeeeeeeeeeeeehhhhhhhh-meeeeeeeeeeee." I come over to the table and take the paper plate (he has a knack for breaking dishware) and ask, "Miguel, what do you want?" He slowly shows me the sign for "more". I ask, "more? More what?" He sits there quietly contemplating the answer or figuring out the question.... I ask slowly, "Miguel, do you want more waffles or banana?" (To emphasize the options for him to respond) He says, "boonana." WOOOOO HOOOOOOO!!!!!!!! THAT'S MY GUY!!!!! Sweet dude!!!!!

This was the FIRST TIME he has responded to a question with WORDS!!!!! Needless to say, he received 3 bananas after that FANTASTIC EVENT!!! Of course, he requested them but I had NO PROBLEM dishing out the boonanas for my guy. :)

*This morning Miguel woke up and took himself to the bathroom (twice) without any verbal cues, however, I had to jump in after the first time and stop him from taking a bath. :)

*Miguel received his Clonidine in the mail Saturday!!!!

*Miguel pronounces his last name "Fer butter". We'll work on that....he also pronounces "Angela" like "Ange-wa" and "Brett" like "Breast" (that's a goodun! I think I'll encourage that one!).

This brings me to concerns about my "parenting skills"... Why would a person encourage their kid to call their friend "Breast" just because it is FREAKIN HILARIOUS!?!?!?! Beats me...but I laugh every time!!

Yesterday, Miguel was burping a lot and I responded, "ugh, Miguel, that is sick. Miguel, say, "that's sick"." Here I am encouraging my child to say, "that's sick" after he belches until my friend chimes in after Miguel belches again, "Miguel, say "excuse me"." People should have permits to raise children....LOL, especially me. :)

Here's the downside of the weekend:

*Miguel was a grump Saturday morning.

*Miguel acted SUPER AUTISTIC at the museum yesterday when we went to see Lucy. A lot of good screaming, shrieking and throwing jabs at his mother's face. He scared the crap out of most of the patrons. Good job, buddy. (I should get him a shirt for these occasions. Maybe it could read "AUTISTIC! For your own safety, please stand 10 feet away" and I could hand out ear plugs to the super sensitive bystanders.)

*Miguel didn't want to go to bed last night....but he was SUPER AWESOME AT 0500 today!!!!

Our favorite weekend warrior and my back-up chick:

Deandrea Grover

She worked at Miguel's daycare and is a PHENOMENAL WOMAN, who sees Miguel the way I do....and she sees him every weekend when I need respite. Someone give this woman a raise!

"Love is the beauty of the soul."-- Saint Augustine

To seize the day, or just "seize"? That is the question.

2007-12-07T08:46:00.000-08:00

On Saturday, June 2, 2007, we moved to Houston. On Monday, June 11, 2007, Miguel had his first and, hopefully, ONLY seizure episode. Words cannot fully describe the feelings associated with this event but the episode, is believed to be (by me), a build up of events that caused it. Let's rewind to April 2007, one of Miguel's classmates blessed the classroom with "Fifth's disease".

According to the Internet, it is highly contagious, there is no remedy, it presents like a cold/flu with a "rash" and it takes approximately 3 weeks to run it's course. So it started with one child getting sick and coming to school. As the child's illness developed, it was found to be "Fifth's disease".

I was notified of this, as Miguel had been presenting with his symptoms of illness, e.g., won't sit down, cries intermittently for no reason, hand juts in the air, he puts his shoulder through the neck of his shirt, bangs his head, can't sleep, INCESSANT need for baths or pool time (he'd take 5-10 baths a night), etc... Miguel was sent home repeatedly throughout May, with what teachers thought (every time) was a "rash". Motrin would keep the symptoms at bay and then after a few good days for Miguel, he'd decompensate. This went on for 3 weeks, into June, per the course of "Fifth's disease". After the third week, Miguel hadn't shown improvement and grew intolerable.

Friday, June 8, 2007, I found a pediatrician--yes, again by location BUT he is AWESOME!--and I brought Miguel in for a check up. HE HAD A FLAMMING EAR INFECTION!!!!

YYYEEEEEEEAAAAAAHHHHHH!!!!

I love answers to bizarre occurrences!!!! So he started on antibiotics and life was good by Sunday and Monday.

Monday, June 11, 2007, Miguel and I went for our daily swim 1-2 hours poolside. We came in to shower and Miguel experienced mass quantities of PROJECTILE VOMIT ALL OVER THE BEDROOM!!!

Yeah, that was awesome.

It wreaked of chlorine, which wasn't so bad to clean up. So, needless to say, Miguel took the first bath while I cleaned the streaking spatterings of vomit.

After the bath he grew lethargic and fell asleep on the bed. I figured, I'd be tired, too, if I blew chunks like that and had been sick for a month without sleep. So I let the sweet guy sleep while I showered.

We moved down to the family room and sat on the sofa. Miguel drifted back to sleep, which was such a sweet delight since I had no respite from his Autistic-ness in FOREVER during the day. Miguel has not taken a nap in 8 years.... THIS WAS AWESOME!!!

Just me and my little dude, chillin on the sofa while I channel surfed...I really can't express how awesome it felt to be relaxed with my son. Uh, give me a minute....

Ok, so we are sitting there with his head against my shoulder and he leans back, arches his back, stretches his arms like an AWESOME FEELING STRETCH and stretches his legs out. I'm looking at him, a little envious of his relaxed state, and I see a bit of his tongue in between his lips and his eyes are shut while he stretches....wow, this seems to be going on a bit longer than a "stretch" should be......

as I think this....

His body starts shaking, his eyes slit open, I can see only the whites of his eyes, as his eyelids flutter, his face tenses and turns blue, all while his extremities are extended in a locked position. I quickly tried to collapse his knees and put his arms down, to throw him over my leg....I thought and hoped he was choking...but his body wasn't willing. My brother's girlfriend, Angela, is a nurse, of all things, and was upstairs getting ready for work. I started screaming for her, over and over, but she couldn't hear me over the hair dryer and music. I grabbed my cell and called 9-1-1 for an ambulance while I was holding Miguel on my lap...oh geez, I'd love to hear how I sounded during that call...

The paramedics were in route and Angela came downstairs to help while I packed a backpack of clothes, Miguel's medical records and medications. I went outside to meet the paramedics and Miguel had a smaller seizure on the floor while he was with Angela. I called my brother, who spoke with the paramedics (he knew them), and we were off to Texas Children's Hospital.

Miguel was lethargic during transport and in the ER. We were going to get discharged from the ER, against my wishes, because the doctor said that "it sounded like a seizure" the way I had described it but he wasn't sure. He said that Miguel's sodium was low (127) but not "scary low", not "low enough that it'd cause a seizure". So we could "go home and if it happens again...just come back, otherwise, follow up with our pediatrician." Geez, doctors can be so damn smart! Turd.

Thankfully, Miguel seized again in the ER which granted us an admission!!! He was there for 3 wretchedly difficult days. It is a great hospital but blind/Autistic kids don't go well with IV's and leads. :(

I stayed with Miguel all day and night, with one chance to go home and shower. I laid in bed with him all day b/c he'd rip his IV's and leads out at every opportunity. The nurses were awesome and the doctors were ok.

In retrospect, I should've asked for Miguel to receive a sedative because he was a HUGE BALL OF AGGRESSIVE ENERGY. He was headbutting me, the bed rail, screaming all day...the admission ranked with the worst 3 days of my life, having to deal with Miguel.

The endocrine staff was slow to respond to my questions and getting information from Children's Hospital of Wisconsin. Why wouldn't an endocrinologist want to know what Miguel's normal labs look like? Without knowing a baseline, how do you know how to treat? I had to badger them to call his old doctor for the info. The results of that are...

Miguel's sodium dropped to 124 in the ER after that seizure (120 is suppose to be "scary low" according to the ER doc). However, Miguel's baseline sodium levels are usually "high normal" at 145.

So, after bugging the crap out of the staff to get this info, Miguel was at 140 on the last day and the endocrinologist wanted to keep him another for observation. I told her we could not stay another day, unless she laid in bed with Miguel 24 hours a day to get headbutted and stop him from ripping his IVs and leads out.

We were discharged that afternoon.

We were discharged with Endocrinology and Neurology appointments for follow up. Of course, none of them were covered by my insurance policy.

Hey, good job TCH! So I had to wait in line until November to see an endocrinologist and I found that kook neurologist in October.....my cup runneth over....

Let's go back to the sodium levels and my belief of what caused the seizure.... Due to Miguel being sick for so long and his illness symptom being "incessant bathing". I believe that over a month and a half of increased bath time and increase in drinking bath water (yes, he does that. It's sick.) and now pool water, he depleted his sodium so low he seized. I think that this wouldn't have happened if we still lived in IL because he wouldn't have access to a pool regularly and I'd lock the bathroom door in the apartment. I don't think he would have been able to deplete his sodium in that environment and I may have been more apt to take him to his pediatrician (.5 miles away), as I was hesitant to find him one here.

What a lesson learned?!?!

"Common sense is not so common."-- Voltaire

Education-schmedumacation...our calling.

2007-12-06T11:51:00.000-08:00

Miguel has been screwed by the education system since he was three years old. I will not exaggerate on this, either. We have always lived in nice areas that have been noted to provide good educations. In fact, we went out of our way to live in those areas SO that Miguel could have an opportunity to receive a good education.

In Spring 2002, I was taking Research Methods in Psychology when I realized that Miguel's symptoms were Autism and not "blindisms", as the doctor would explain away the concerns we had regarding spinning, hand-flapping, narrowed appetite, lack of verbalization and socialization.

In June 2002 at a Parent/Infant workshop, I met a woman at the Illinois School for the Visually Impaired, Dr. Terese Pawletko, who specializes in teaching methods and research with blind/Autistic children. Dr. Pawletko has posts on TSBVI's website and has done 1 and 2 day trainings in the Dallas/Ft. Worth and Richmond areas. She lives in Eliot, Maine and works for districts in New England, but also consults around the world...and still does workshops on an 'as contracted' basis.

I told her I had a suspicion that Miguel was Autistic but medical professionals and education professionals felt he was just "retarded" (God, I love the jaded shitheads that worked with Miguel...at least, 2 of them were but that is more than enough! The rest were "sheep" to the 2 shitheads.). Anyway, I asked that she meet with him for her professional opinion. Within less than 5 minutes of this meeting, she asks me, "how could they NOT think he was Autistic?!?!" Oh, be still my beating heart..... That validation put most of my worries to rest.

I hear about a lot of parents who are shaken by the diagnosis of Autism. I was ELATED!!! THANK GOD there is an answer to all that is holding Miguel back in life. Now comes the next hurdle...how the HELL do you teach a blind/Autistic kid????

I know Wisconsin has GREAT programs for children with Autism but that is still not the same as blind/Autistic. Just because you know how to work with one disability, does not mean that you know how to work with BOTH. The dual diagnosis implicates so much since Autistic kids are FANTASTIC visual learners.

Let me tell you that NO ONE in the state of IL has a CLUE how to teach this slim population of special children!!! My advice: RUN!!! Save yourselves!!!!

So we did.

Last December I flew into Austin, Texas to tour Texas School for the Blind and Visually Impaired and I was impressed with what I saw. Moreover, I was just happy to know they had training in working with blind/Autistic children. After that, my plan was to make our way down to Texas for a more appropriate education for Miguel. I graduated in the middle of May and I had a job offer by the end of the month in Houston.

Miguel and I moved in with my awesome brother, Jason, by the end of the week that I accepted the job.

Side note: Oh, that poor guy! He's been living alone as a bachelor for approx. 10 years and now his sister and nephew invade his existence and two bedroom townhome. (Yes, I share a bedroom with my son.) He has been more than hospitable and considerate with us in this enormous life change.

Our Summer kind of sucked because HISD screwed Miguel out of his extended school year, as detailed in his IEP. I was a letter writing fool and hired an advocate. Educationally speaking, it was a crappy summer. I also struggled finding daycare because no daycare felt competent enough to care for a special child. If this wasn't enough, Miguel had his first, and only, seizure the second week we were here. This was followed by a 3 day admission to Texas Children's Hospital. Talk about "getting acquainted with the area," eh?

These obstacles/struggles left me doubting myself and this move, or COMPLETE UPHEAVAL from all I was familiar with. It was so hard because my complete support system was in IL, all of Miguel's medical professionals were there, the seizure probably wouldn't have happened if we were in IL (I'll explain in another blog), he would have continued with an Extended School Year, he would've attended a Special Needs Summer Camp I had him enrolled in.....It all would've been so easy.

BUT NOOOOOO, my stubborn ass wants to blaze trails for my monkey and is it worth the cost we are paying? I thought Texas loved their special people? I thought there were more resources? I did not plan on this. It was suppose to be smooth. I made all the arrangements in advance...movers, boxing my apartment, storage in Texas, delayed start date at work to get Miguel enrolled in school and daycare....

HOW CAN THIS BE HAPPENING?!?!?! (GASP!!!)

Well, easily......shit happens. Suck it up. Deal with it and move on. So we did.

Miguel started school at the end of August at (what we call in IL, a "co-op") T.H. Rogers in Houston. I've made visits to the class and I am not sure what it is that they do BUT IT WORKS!! Miguel's affect and ability have improved drastically. I noticed changes by October and I started him on a GFCF diet (gluten free, casein free) and more improvements are greatly apparent day-to-day. The sweet guy repeats what I say to him! This has NEVER HAPPENED. I call his father and say, "ok, what do you want Miguel to say?" and we come up with words and the sweet guy repeats them back. Miguel is counting again and is more appropriately responsive to questions and requests. It's just amazing.

I believe the progress is due to his lead teacher and assistants, also his Vision Itinerant, who uses the same methods as TSBVI to teach Miguel. It takes a really special person to work with Miguel and teach him. Miguel's lead teacher is definitely blessed with that ability and I hope the next teacher can bring the same attributes to Miguel's education.

Our education heroes:

Julie Rohrbach- Teacher

Sheila "Miss Sheeya" Hoekstra- Vision Itinerant

Alice Moma- Teacher

Annie Okorie- Vision Itinerant

Barbara Kielaszek- just Awesome

Dr. Terese Pawletko

Dana Prezembel- best friend, teacher, advocate

I liken my wayward existence to that of a gypsy but Confucius has a better way of reframing my thoughts....

"They must often change, who would be constant in happiness or wisdom." --Confucius

....and we are happy.

Dr. Incompetent Strikes AGAIN!!!!

2007-12-05T07:00:00.000-08:00

Let me preface this vignette with a brief history...

I took Miguel to see a new neurologist (since we recently moved to Houston, TX) in October. I was disappointed by the office, the location and the lack of STAFF. When I looked it up on BCBS PPO providers, it appeared to be in a great location with regards to work and home and on a notable street.

Side note: How sad? I picked a medical professional to treat my son based on location! It's like Russian Roulette, but I should be the one shot....uh, I amaze myself with my idiotic reasoning sometimes.

Anyhoo, it was a bit further out, away from the city, than what I had expected. In a nutshell, it had a "country-bumpkin" (sp?) atmosphere, the receptionist wasn't in so the doctor was doing EVERYTHING, there was an intrusive and barking "therapy dog" in the office, the office door was open so the doctor could hear patients coming in (as if the barking dog wasn't enough?) AND the doctor was hard of hearing so I had to repeat myself a lot and shout what I said so she, and the waiting room, could hear.

Alright, so my first thought walking in was "oh crap, Miguel will be on Risperdal and Clonidine FOREVER because this doctor won't keep up to date with new treatments in the field". I liken her to that of the Crypt Keeper (CK--for short). So the appointment went fine, aside from all the HIPPA violations and the heightened confusion in the office with new patients walking in and the doctor being both the secretary and neurologist. It was a basic intake with a medical and social history on Miguel, to be concluded with a much needed prescription of Risperdal and Clonidine. I explained to the Crypt Keeper my concerns of Clonidine, dosage history (.05mg), how I use it as a PRN and my concerns on Miguel's recent sleep pattern. She assured me that Miguel could take the full tablet (0.1 mg) every night and that it'd be fine.

We tootled home with the prescription and to follow up.....whenever....she never said, nor did she reschedule him. I guess I'll call for an appt. in 4-6 months like I did with his other neurologist in Chicago.

November came and his Clonidine was running low, so I whip out the prescriptions to mail them in to be filled for three months with 4 refills, as I use a mail order pharmacy to keep co-pays low. I look at the prescription and it says Clonidine .05 daily. Well, actually, it LOOKS like "Clonidine 005 mg" because she made the point (.) like an "0".

I call the Crypt Keeper and speak to her receptionist and explain the situation. She yells to the Crypt Keeper the issue and the Crypt Keeper shouts back, in a relay fashion, that she'll call in a month prescription and that I have to schedule an appointment to come see her next week if I want her to change the dosage. I continued to explain the situation, what the outcome of the initial appointment was and what I need. The receptionist stood firm in her orders from the Crypt Keeper and was incapable of independent thought or reasoning. I told her I would not come in to see her again and give her my money for something that was already accomplished a month ago. So, I ended the call with a "no thanks, I will find another doctor."

I decided to mail in the prescriptions even though one of the doses was incorrect, it'd hold Miguel over until I could schedule an appointment with another neurologist at a hospital.

Now, let's fast forward to Saturday (12/1/07).

I receive Miguel's Risperdal in the mail along with a letter from the pharmacy stating,

"we are unable to process your recent request for Clonidine because we were unable to get clarification from your doctor on the invalid drug strength prescribed"

I immediately call the pharmacy to inquire about this CRAP and they tell me that they had tried REPEATEDLY to get in touch with the Crypt Keeper to verify the prescription and never received a call back. They gave me a number for the Crypt Keeper to contact to verify the INVALID DRUG STRENGTH. I believe this is due to the "005 mg" issue, or the fact that there may not be a pill made for .05 mg dose.

Monday morning (12/3/07) I contacted CK's office and left a message with my number, the pharmacy's number and the reference number. I explained the problem and left it at that.

Tuesday morning (12/4/07) I contacted the pharmacy at 0900 to follow up to see if CK had called to confirm the prescription. They reported no and that the prescription had been closed out in the system because it had been open for too long without a response from the beloved Crypt Keeper.

I contacted CK's office and spoke with the receptionist, who, I believe, may almost have the intelligence of a dildo, and I was going to leave a message when she said, "the doctor is on the other line with the pharmacy now." I was put on hold so I could speak with CK in person.

The conversation went a little like this....

CK: "Hi, Ms. Favela."

me: "Yes."

CK: "This is Dr. Incompetent."

me: "Yes, ma'am."

CK: "You need to come in for an appointment."

me: "Why? We were just in there two months ago. You wrote an invalid prescription and my
pharmacy has been trying to reach you. I am not coming in to your office for an appointment so you can write me a script that you gave me in October."

CK: "I did not write an invalid script."

me: "According to my pharmacy you did because of how you wrote the dosage. (I read the
letter.)"

CK: "I did not."

me: "Well, they won't fill it until you fax them a new prescription because they closed it out."

CK: "I just talked to your pharmacy..."

me: (I interrupt)"I know because I called them before I called you. Miguel has been out of his Clonidine for over a week now and you need to re-write the script."

CK: "I'll call in one month supply and you need to come in for an appointment."

me: "When I left your office in October, you gave me a one year script for three months at a time and now you want me to come in for a one month script?"

CK: "No, I am not saying that you have to come in for a prescription. I want you to make an appointment because we made a change in his medication and I need to see him...see how he is doing. Then you can find another doctor."

me: "I am not making another appointment. You gave me a one year supply and now you are only giving me a month? My concern is his medication and he has been out of Clonidine for over a week now."

CK: "Fine I'll call in a three month prescription. Bye."

Yes, CK hung up on me.

While writing this, I didn't feel good calling Dr. Incompetent the "Crypt Keeper". I thought, if she read this, it'd hurt her feelings and maybe the label was too harsh. However, when I tried to substitute CK with "doctor".....I didn't feel good either. So, Crypt Keeper it is!!!

I think there comes a point in people's lives where they become ineffective as professionals and, well, plain ol' incompetent. Let's face it. Some people NEVER become COMPETENT but it is always helpful if someone would tap that individual on the shoulder and say,

"hey, why don't you give it a break? I mean, you suck."

Then the two could exchange a meaningful nod and a hearty handshake and the incompetent one could find a mindless job with the rest of us in the mindless masses of worker people.

"Humor is just another defense against the universe."--- Mel Brooks

Where life began for Miguel.....and again for me.

2007-12-04T07:49:00.000-08:00

Guess who woke up at 0300???? It's ok, though, because he was in such a FANTASTIC MOOD!!! He helped himself to a bath and kept the bed dry, so I really can't complain. He was a joy to put on the bus and we are off to a GREAT DAY!!!

Where life began for this handsome guy was at National Naval Medical Hospital, Bethesda, Maryland. He came on his due date with complications (blood glucose was at 19 and his APGARS were 3/3/9) that kept him in the NICU for approx 3 weeks until the doctors could diagnose him with Panhypopituitarism with Septo-Optic Dysplasia. Not only do newborns look....ummm...."funny" (I'm trying to be kind here), but Miguel looked like a MONKEY!!! Just the positioning of the little monkey and, apparently, the poor guy wasn't blessed with the best DNA from me and his father. Being obtuse Jarheads that we are, there wasn't much hope for him in the I.Q. department, either, if you know what I am saying... ;) However, he manages to defy the genetic odds because he is RIDICULOUSLY SMART!!!

During his 3 week stay, he was seen by pediatric neurologists, endocrinologists, high risk neurodevelopmental pediatricians, a geneticist, opthamologists and received a battery of tests (2 lumbar punctures, MRI on his brain, ultrasound on his brain, passed radium through him in x-ray, he was under bilirubin for jaundice, etc.). The poor guy had four different IV sites because his veins kept blowing out and he had more leads than a baby should ever have or need. The doctors took good care of him and Miguel had quite the entourage of MD's jockeying for the role Primary Care physician because 1 in 10,000 children are diagnosed with this, aka DeMorsier Syndrome. He was quite the phenomenon among the specialists.

Jose (my ex) and I left Bethesda with Miguel and a FIRST CLASS EDUCATION in the brain, the formation of Miguel's brain, his deficiencies, implications, vague prognosis, genetics, Endocrinology, endocrine failure, signs and symptoms of failure, medication, dosages, purpose of, signs and symptoms, how to administer all meds, how to triage and the chosen Primary Care Physicians HOME NUMBER, CELL and work number. This woman, Dr. Cydney Fenton, pediatric endocrinologist, is PHENOMENAL!!! She is just amazing and she impressed us from the beginning. We were so glad we chose her!

We discharged the sweet guy with his Winnie the Pooh outfit and matching beanie in his car seat and a garbage bag (literally, it was a 13 gallon, clear garbage bag) of medications and supplies. There had to have been 6 sharps containers, boxes of insulin syringes, 3 mL syringes, blood glucose machine, boxes of alcohol swabs and whatever other medical supply necessary to sustain this little monkey day-to-day. What we didn't receive was a visit from a SOCIAL WORKER!

BOOOOOOOOO!!!!!!!!!

What the HELL is a social worker? Why would I need one? What can they do for me? For Miguel? I don't even know what they do, well, when I was in high school I'd get in trouble and have to go see my counselor, the social worker or the police liaison....so what does a social worker have to do with a newborn? Maybe I need to remind you that we were obtuse Marines...

Miguel was jilted by the social service field. None of the medical professionals, out of the BAZILLION that we saw, no one mentioned Social Security (because members of the military are paid crap), early intervention therapy that he is automatically entitled to based on his diagnosis, local social service agencies that could provide this service or any insight to his education or what we can do with him at home to help him adapt to his surroundings, being a blind child. We didn't find any of this out until he was nearly two and we were about to rotate out of Quantico, Virginia and home to the Chicago area.

I can only imagine how he could have developed if these supports were in place...

"By three methods we may learn wisdom:

First, by reflection, which is noblest;

Second, by imitation, which is easiest; and

third by experience, which is the bitterest."

-- Confucius

Clonidine woes....

2007-12-03T10:17:00.000-08:00

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

Panhypo-what?

2007-11-30T06:51:00.000-08:00

Panhypopituitarism is the technical term for a "boat load of medication".....

Pan- meaning "all", hypo- meaning "lacking" and pituitarism- is regarding the pituitary. So, all of Miguel's pituitary is lacking. It's actually, underdeveloped and ectopic. When the 2 hemispheres of his brain fused together in utero, his pituitary didn't migrate to where it should be (the very center of the brain). Instead, it fell a little short of the desired location and didn't develop fully. The sweet guy takes more medication than a healthy 90 year old man, in order to maintenance his pituitary needs....

To include:
Humatrope every night (growth hormone by injection daily)
Cortef 3 times daily (blood sugar)
Synthroid once a day (thyroid)

Now let's explore the Autism portion of the medications.....

In February 2004, we took Miguel to see a neurologist for behavioral and sleep issues related to Autism. There he started on Risperdal for sleep and aggression. It worked well and was worth the risk of side effects...

By October 2004, Miguel had gained 30+ pounds because Risperdal is an anti-psychotic medication which is notable for increasing appetite. Until Risperdal, Miguel's eating habits were nearly non-existant and his range of desired foods was NARROW!!! He ate hot dogs, chips, Chef-Boyardee products, pancakes, apples, grapes, fries and waffles. That is it. Every meal could only consist of those items.

After Risperdal, Miguel ate EVERYTHING (there is no exaggeration here)!!!!! He would raid the refrigerator (and still does) in the middle of the night and tantrum when meals were over. Hence, the enormous gain in weight.

Miguel was diagnosed with Diabetes Insipidus, October 2004, and now takes Desmopressin to manage it but he is still a beefcake. Today, my sweet guy is 4 feet tall and weighs in at 117 pounds!!!!

In March 2007, Miguel was started on Clonodine to manage his sleep further. He has an amazing knack for going to sleep at 2230 and waking up at 0200...ready to start his day.

Right now I am awaiting a 3 month supply of Risperdal and Clonidine. I ran out o f Clonidine last week, so waking up at 0400 (like today and yesterday) is becoming a norm until the package of goodies arrives!!! :)

A recap of my medicine cabinet, aka Miguel....

Desmopressin
Risperdal
Clonidine
Humatrope
Cortef
Synthroid
Flintstone multivitamin
Magnesium and Calcium (for teeth grinding)
Vitamin C (for immunity due to compromised immune system)
Fiber Choice tablets (for BM issues)
Melatonin (2mg for sleep)

Some of our most favorite medical heroes include:

Dr. Cydney Fenton-pediatric endocrinologist at Walter Reed Medical Center
Dr. Paola Palma-Sisto- pediatric endocrinologist at Children's Hospital of Wisconsin
Dr. Barbara Trommer- pediatric neurologist at Evanston Northwestern Hospital
RN Kent- pediatrics at Great Lakes Naval Hospital
Dr. Dattani- endocrinologist noted for medical research in panhypopituitarism

Being Miguel's mom today can best be captured in a quote by Casey Stengel,

"All right everyone, line up alphabetically according to your height."

What is Autism?

2007-11-29T06:29:00.000-08:00

Hell if I know but it beats the crap out of me sometimes...

This morning Autism woke up at 0400 to take a bath while everyone slept.

When it gets sick, it doesn't know how to deal with the strange feelings that come along with illness, so it spins, has labored breathing and juts it's hand into the air. Autism doesn't sleep when it's sick and the early signs of illness onset are these physical characteristics. When the physical symptoms are present, my first thought is "oh shit" and my response is bracing myself for 3 weeks of spontaneous screaming, no sleep or inconsistent sleep.

Thankfully, my guy isn't sick today....just a little more Autistic than usual.

The best part of being Miguel's mom is that any tiny achievement, even if it only happens once and never again, is MONUMENTAL!!!! Things that others take for granted are cherished in my life and anyone who really knows Miguel can relate to the average occurance that feels like the Heavens opened up and blessed me with the largest damn miracle anyone has ever witnessed!! These "miracles" (e.g. a word or phrase used at an appropriate time, whether, coincidence or not) usually are, in fact, coincidence but that doesn't stop us from hoping that the vocabulary or behavior "sticks".

Prior to the onset of Autism, Miguel would sing songs, say his ABC's, use little phrases and eat regular foods. After Autism, he'd go mute for weeks, eat only one type of food and become aggressive (I believe that is due to his inability to communicate effectively). He is now 10 years old (eeewwwww.....that's a reality check for me....) and I'll talk about recent events tomorrow. Life calls.

Newest development:

Miguel brings me his plate from the table when he is done eating. :)

"My crown is called content, a crown that seldom kings enjoy."

--William Shakespeare

Can you hear me? How about now? Can you hear me now? Hello?

2007-11-28T07:04:00.000-08:00

*image from www.autismspeaks.org*

I started reading my friend's blogs, which inspired me to do my own partially as a connection to my friends and family across the world, partially as an outlet or diary of Miguel's progress and, hopefully, as a means of networking with other parents that share my joy and my heartache as a parent of a very unique and special child.

With that said, this is actually my son's blog because I am really not that interesting of a person to blog about until you attach my parenting experiences because those are RICULOUSLY interesting and sometimes, just plain RIDICULOUS!!!!! I have my own identity but, let's face it, in larger circles I am not known as "Kelly" but more commonly known as "Miguel's mom", "Jason's sister", "Jose's ex", "Lois' daughter" or "the mother of the blind/Autistic boy". So this is where my blogging journey will begin.....let's see how long my blog attempt lasts....

Love,

Kel&Migs

Newest development:

I point to Miguel's stomach and ask, "what is this?" He repeats, "what is this?" I say, "it's the Buddha." He repeats, "the Buddha."

What a joy?