Wednesday, December 3, 2008

Houston Chronicle, 12/2/08

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.

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.

Sunday, November 30, 2008

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

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.


Friday, November 7, 2008


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.


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.


"The less people know about how sausages and laws are made,
the better they'll sleep at night."

-Otto von Bismarck

Tuesday, October 28, 2008

DO NO HARM. What is that?!?!

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.

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 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

Saturday, June 28, 2008

Lawsuit against Lufkin State School...

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 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.

Sunday, June 22, 2008

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


Sunday, June 15, 2008

Don't call it a comeback....

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.....

 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

Saturday, June 14, 2008

Sweet baby....

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

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".

Friday, June 13, 2008

Why people suck so damn bad...

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.

Thursday, June 12, 2008

People suck...

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.

Monday, June 2, 2008

Let's talk about God....

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.

Thursday, May 29, 2008

Hochberg for President!!!

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!!!

Tuesday, May 20, 2008

I hate people.

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


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.


Hey Tarabay, have your people call my people.

Sunday, May 18, 2008

Anticipating a new start

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.

Wednesday, April 30, 2008

Hey!!! Heeeeey!!!

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

Tuesday, April 22, 2008

So it wasn't allergies =(

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

Sunday, April 20, 2008

My other handsome baby

Saul Sausage Sullivan

Friday night...

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.

Tuesday, April 15, 2008

Wali-tin to the rescue!

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 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.


"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

Wednesday, April 9, 2008

"Sick", again.

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 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!!!

Thursday, March 27, 2008

Weekly recap

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.

Friday, March 21, 2008

The results are in!!!

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?


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, 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

Monday, March 17, 2008

Spring break blows...

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.

Thursday, March 13, 2008

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

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

Tuesday, March 11, 2008

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

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.
Yeah, I'm sick.
"Everything is funny as long as it is happening to somebody else."
--Will Rogers

Thursday, March 6, 2008

Pepto Bismol is our friend

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.

Monday, February 25, 2008

Miguel is sick.

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

Sunday, February 24, 2008

We are baaaack!

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'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 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........).......


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."

Friday, February 8, 2008

Good Morning, Friday!!!

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

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

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

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

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

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

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

Thursday, February 7, 2008

Forgotten details of the past week

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

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

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

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

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

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

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

Furthermore, I have explained the diet Miguel is on...what he can and cannot eat, etc... The owner wrote it down on paper and posted it in the kitchen.
Why did she show me snacks yesterday and asked, "is it ok for Miguel to eat these?" Mind you, she had a worried, "please, please, please, please let it be ok" look on her face.
I look at the ingredients. First ingredient "wheat flour". I say "no" and explain why. She says, "oh, ok, I was just checking because I had picked them up for him in case he could have them"
Yeah, the box was open....
Then she goes on to say, "well, I gave him some fried chicken today because he was asking for it."
I respond, "Oh, he can't have the breading that is on it." She apologized but what the HELL am I paying you for?!?!?!

Anyway, Wednesday he woke up groggy and was cooperative getting on the bus. He wasn't cooperative in the morning at school...a very angry morning. He also stayed dry at daycare yesterday.
This morning he was good. He was up at 0500 and he got on the bus without a problem! :)

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