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

Tuesday, February 5, 2008

Sluggish Tuesday

Miguel still has difficulty transitioning in and out of weekends.

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

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

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

Monday, February 4, 2008

Medication update...


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

Friday, February 1, 2008

The wet seal strikes again!!!

Last night, Miguel's notebook stated:

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

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

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

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

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

This seemingly harmless jacuzzi tub quickly turns into...

Miguel's bunker!!!

I open the drain, turn off the water and start talking to Miguel about getting out of the tub, being "all done", getting dressed, getting on the bus and he starts swinging. He sort of "leaps up" and swings and plops back down in the 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