Thursday, December 27, 2007

Gooood mooooorrrrrrnnnning!!!

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

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

Wednesday, December 26, 2007

Blogging for the Love of Christmas!!!

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

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

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

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

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

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

My mom "Meema", Andy & Miguel

Miguel (the contortionist)

Miguel & Andy

Andy, Un Jay, Abbey & Angela

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

He shakes it. It squeaks. Endless fun.

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

Ooooohhhhh yeeeeeaaaaaahhhhh!!!! That is some GOOD TOY ACTION!!!
(I think I may have paid $5 for it. Time to stock up!)

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

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

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

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

Friday, December 21, 2007

UnJay a.k.a Uncle Jason

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

Monday, December 17, 2007

Helpful resources...

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

In the meantime, I get a much needed break from parenting every Friday night from 1830-2230 at Houston Area Respite Center (HARC). This has been an awesome resource for me so I can go blow off steam, whether it is swimming, running or'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!!!

Friday, December 14, 2007

Got mood swings?

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

Wednesday, December 12, 2007

GFCF....My hero!!!

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.
"Success is going from failure to failure without a loss of enthusiam."
--Winston Churchill
Crap...I feel SUPER SUCCESSFUL!!!! :)

Monday, December 10, 2007

Boo-nanas it is!!!!

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

Friday, December 7, 2007

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

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!!!!


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, 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 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

Thursday, December 6, 2007

Education-schmedumacation...our calling.

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 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 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....


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.

Wednesday, December 5, 2007

Dr. Incompetent Strikes AGAIN!!!!

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

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

Tuesday, December 4, 2007

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

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!
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 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