April is Autism Awareness Month.

For all those who don't know, Autism has been a major part of my life since August of 2004, when my only kid was diagnosed.

Since then I joined Alianza de Autismo de Puerto Rico and been trying to spread some education of this devastating condition that affects 1 out of 150 births.

This weekend we had a very, very, VERY special event.

We had our first Surf Camp with Sufer's Healing

I cannot tell you how special this event was.

This organization along with local surfers from the Puerto Rican Federal Sufers Organization.

They took our kids, deep, really deep and had them catching waves all day long...

My boss lent me her surf house and we had an awesome weekend.

I have to admit that I almost cried when I saw Miss C on the board.  Miss C conquering the waves, conquering her fears...

So we've been having trouble with Miss C. School troubles.

After a month without school or therapy structure, she obviously was a tad haywire the first few days of school. Screaming, kicking, crying, begging for her mom.

After the third day back, her teacher called.

When she calls, it's not good.
She can never call to give good news, it's always "Um..hello Miss C's mom...she just stabbed a child in the cafeteria, but don't get too worried".

Or something like that.

So there she was calling. Miss C was upset, I could hear her screaming.

The teacher went on about how worried she is for her well being and then hit me with this:

"Is there anything going on in the home that we should know about? Anything wrong?"

WHATKINDOFHELLOFAQUESTIONISTHAT

"No. We are a happy little routine family. Me and the kid, no one else, nothing else, why would there something wrong in MY neck of the woods".

She stammered.

"Well, because it is not normal for Miss to have this behavior this far along in the school year, we had already gotten a hold of her behavior."

"Well, let's recap, shall we. Her main problem is her obsessive hold on routine. Her need to have everything planned out for her. Her need of control, of the same thing everyday. They had school vacations for about a month and half, with toys, no teachers, no schoolwork, Miss C had major mommy time and now she's back to school, on a Tuesday, no less, thrust back into school, into the peer pressure to be good, to be "normal" and you people ask me what is wrong in MY house?? You can't expect her to fit in right away. Your goals are way to unrealistic and then you call me every five mintues while I'm at work, with a screaming child in the background and expect me to DO something. You people are the professionals and you've had her since August and still can't manage her. Then you have to rethink your strategies."

What I got from her was silence.

She apologized and hung up.

The kid came home and was punished with no TV. It hurt like hell. She cried. She apologized and I told her that apologizing wasn't enough.

"But momma, I don't know any other word to tell you it was my fault".

I had to hug her. Because kid, deep down, I feel that we are the ones that have to adjust to you and not vice versa.

If I only had a magic wand.

"Hello Miss C"

Miss C responds back without eye contact and makes her way up the stairs.

"Well that daughter of yours sure is proud, she just scooted upstairs barely acknowledging me", responded the old lady neighbor who once suggested I baptize my child to cure her Autism.

I responded the same way Miss C did, I ignored her ass and made my way upstairs.

WHAT THE HELL DO YOU EXPECT FROM MY KID, A DISCUSSION ON THE GETTYSBURG ADDRESS?

So, yesterday the School Book Fair began; which essentially is Nerd Heaven for Miss C and me.


Did I ever tell you we are book freaks??
Did I ever mention that Miss C, just like her mommy, has a HUGE collection of books and just can’t ever get enough?

Well anyhow, we spent the weekend looking over the little book fair pamphlet and had already made our order. So we decided to go in early to school to buy the books before the bell rang. We felt like we had died and went to heaven. The selection was awesome. Miss C immediately targeted her books: “Teacher’s Pet” and “Skippyjon Jones in Mummy Trouble”, but she also put her eyes on some book making kits and “I Spy” books. I on the other hand, quickly put my eyes on a Mo Williems book. I have always loved this award winning kids author but had never gotten around to actually buying some of his books and there in between Spongebob and Diego, was “Let me Drive the Bus!!”, one of his Pigeon Series books, for ONE DOLLAR!!!! ONE DOLLAR!!!

I immediately yanked it off the shelf.

After school, homework and some arts and crafts, we took our baths and settled in for some bed time reading. Of course, Miss C wanted urgently to read the Pigeon Book.

The Pigeon Series is about a stubborn as a mule Pigeon who wants to kind of always get his way and on top of all that has a real bad attitude when he can’t.  Williems books all have funny little quirky caracters intended to teach you a lesson.

I think we might share the same last name.

This particular book is about him wanting to drive the bus. The bus driver instructs the reader, that no matter what the Pigeon tells you, you should not let him drive the bus. The Pigeon of course, waits till the driver leaves and starts badgering the reader to be allowed to drive the bus…he stammers, he begs, he even bribes the reader with five bucks. In the end, he gets to upset, so mad, he throws himself on the floor, eyes bulging and red and screams at the top of his lungs: “LET ME DRIVE THE BUS!!”.

Now he's Autistic too.

Miss C was rolling on the bed. She thought he was hilarious. I, of course, explained to her that his actions were no good and that when an adult said you can’t do something you should obey this. Because after all, Pigeons, like children, cannot drive buses. She agreed. And all was well.

The next morning she asked for more money for more books. Addict in the most horrible way. I told her my funds on books were short, so she suggested she take the money out of her piggy bank, to which I agreed. But I explained to her, that she should purchase her book at recess and not open it during class. She agreed.

We got to school, late, as usual, and as I walked her up the stairs and passed the library (where the Book Fair) is being held, she yelled out: “Hey, my book, I wanna get my book”.

“Did you forget what we agreed on?”
“But, But, But, oh momma, oh please…please”.

Great. My very own Pigeon.
Art imitating life.

She screamed, she told me I was mean, bad, she stammered into class.
I put my foot down and in front of the class and teacher I laid the rules, “You don’t behave, there will be no more purchasing of books, you hear me?”

Now when did you ever think that taking away books would be a punishment??

She simmered down…pouted and sent me on my way. I gave instructions for no books if this carried on throughout the day.

And as I walked away to my car, I couldn’t help but laugh, almost out loud. Because even though this Pigeon is from Brooklyn, in every town, on every island, deep down inside I think, from time to time, we too, wanna drive the bus.


What bus do you wanna drive?

She stood next to me, "Well how is she today?"

In that condescending voice that made me wanna hurt somebody.

Miss C had had a day straight out of hell the day before, again. It literally took two people to grab her by her arms and legs and drag her up to her classroom. She ripped my necklace, bit my arm and scratched at my face like a rabid cat. I decided it was in my best interest to pick her up instead of letting her get on the bus, and it was a good call, since when I got there, she was still rabid.

Her teachers are concerned; they need an emergency meeting with me. Fantastic. I’m all for it.

Flash forward to this morning again:

So, the Autism Program Director was waiting for my answer…

“She’s good, she’s happy”.

“You see, we are concerned. Something needs to be done”.

“I’m working on it. I’ve been all week hoping from office to office, trying to get her back on track, on Monday I’m seeing a specialist about some natural supplements”.

“I’m sorry, even though I do respect your opinion; I do think that Miss C is in need for something more serious”.
“Such as?”

“Well, you know that 90% of the children in the Autism Program at this school are medicated”.

90%!!!!!!!!!!!!! I thought.

“Well, I am her mother and I am looking out for her best interests. I will try to use all other options before medicating her. She doesn’t have any therapies lined up, since all her therapists have resigned due to lack of payment on the Department of Education’s behalf, she’s in a group with more children, it’s a hard time for all of us. Her behavior isn’t horrible every single day…it’s just very inconsistent”.

“Well, I believe you should see a neurologist about some meds”.

“First of all, her neurologist doesn’t believe she has anything to begin with, and now I have a crappy government medical insurance that is a bitch to get into any specialists”.

“Well, fact is, she is disrupting our class, and it’s intolerable at times. I know she has great potential but...”

“But she should be numbed out? Because your staff, that is supposed to know how to deal with these kids, can’t? I am not knocking out the possibility of meds, but for now you need to let me do what I’m doing, because believe me, I’m not sitting at home watching novellas. It is hard on us all and if I had a magic wand that would make it all go away I would, but I don’t. Have a little patience; because I know that once she gets her therapies started and some supplements going, things will change.”

She added: “Well I need you to work with us, we are using a little chart, and you can ask the teacher…”

I interrupted…

“A behavioral modification chart, with prizes? The same one I brought to school to use in Kinder that everyone loved?, the same one I used for toilet training almost 2 years ago?”

“Um, yes”

“I know the chart, I have three of them at home…”

Uncomfortable silence.

“Well then, if you need anything...”

“I know where to find you”.

She left.
The nerve.

I’m not the lazy sit on her ass mom. I’m out there, writing letters, calling/visiting offices, talking to specialists, teachers…with my limited time and income, I’m still doing what I need to do, so don’t tell me you prefer to have my kid medicated just because you don’t wanna deal with it. Our kids ain’t perfect and not everything is gonna run smoothly every single day.
My kid will get better and I’m taking all the credit.

And for once in my life, I’m gonna get churchy and over all diagnosis, over all suggestions and words of you folk (you ‘specialists’ at school), I’m putting the mother of diagnosis over it all, the diagnosis of my Lord, my God, our God, the one who put his son on the Cross not only so that we can be saved, but so that we can be healed.

So take that lady…and RESPECT the MOMMA!

So, today I had a little what I like to call hell on earth.

I had to take Miss C with me to my "medicaid" revision. Since I am still a part time unemployed person, I cannot afford medical insurance and has had to take what our crappy government can offer.

The office is located in a mall and Miss C saw some riding machines and asked if she could get on one, to which I mentioned that she could, if she was good.

So we went in, there was no one and they literally argued over who was going to take our case.

The lady who took our case,escorted us to the desk and started to punch in numbers.

Miss C started to punch in words.
"Can I get on the machine, can I get on the machine, can I get on the machine???"
She sat on the chair, got off the chair, leaned on the desk, banged on the chair.

The lady then looked over, "I'm sorry ma'am you qualify but your girl doesn't."

See, since I am divorced Miss C gets her own case and they consider her a millionaire due to her $300.00 in child support she gets every month.

I argued, I bitched...meanwhile Miss C was also whining and bitching...

"Well ma'am doesn't she take any medications we can write off here..."

and just when I was going to answer, Miss C slapped me.
She bitchslapped me so hard, she knocked down my sunglasses.

The lady was shocked, I was shocked. I wanted to kill her. But this was a public office, so I had to try not to.

"She doesn't take any meds, but now would be a good time."
The lady got up and went to talk to her supervisor to see what we could do.

"No machines for you at all and no Mister Maker".

Miss C started to scream, cry, kick the wall...you name it.
The lady came back with all the papers signed and approved and almost threw us out of the office.

In the lobby I grabbed Miss C by the arm and she scream, "You stop that behavior mother, no prize for you" and she kicked me. She kicked me.

I spanked her. In front of a crowd. And added: "There! now you respect me or I'll spank you again...and if anyone dares to call Social Services, then let them have her for a while!"

I managed to wrangle her in the car as I could but she continued her wrath from hell at school, kicking a girl's bookbag because she was too slow (she really was), clawing at another girl and grabbing a girl's hand because she wanted to high five Miss C.

Her teachers applauded me for my firmness.

But later today one of her teachers called. She was concerned. Join the club.
Miss C's behavior has deteriorated in the past few weeks, up to the point where her academics are being affected. She doesn't want to read, write or work. Her teacher says Miss C has great potential but this conduct is a major concern for her.

Lady, I just got bitchslapped and kicked.

She asked if I had considered the option of medication.
My heart sank.
I had worked for 4 long years, trying to avoid medications. Because well, I know Miss C can do it and well, I've seen what some meds can do to these kids. Although I know that in some cases, medication is a reasonable option. Just not in my case.

I thanked her and hung up.

She will flunk if she does not get better.

And I cannot keep getting slapped.

I drove to run some errands and Coldplay's song, The Scientist, came on...

"Nobody said it was easy, no one every said it would be so hard, let's take it back to the start".

If there was any start to begin with.

I hate you Autism.
I fucking hate you.

The Devils...I mean children on the schoolbus where Miss C comes home on, are teasing her.

They are making her life a living hell.

She tells me they hit her, they pinch her and yesterday they mushed her face in.

I have tried calming her down and telling her that acting equally violent isn't the solution.

Yesterday the boys on the bus told me in a very teasing way..."she was pulling down her pants and showing us her underwear"....

I was upset. I cried. I am worried. I asked Miss C who taught her that and why she would do such a thing.

She cried.

No one had taught her.

Her answer was: "they bother me on the bus, these kids hit me and pinch me...they bother me".

I don't know if she thinks that pulling down her pants is a way of letting them have it...or if they are enticing her to do it...

Either way. It's worrying.

So I gave Miss C the best advice I could give her:

"Tomorrow when they hit you and bother you, you hit them back...you defend yourself if no one is around to do it for you. You hear?".

It's not something I would like to have told her but:

My kid ain't gonna be bullied.
By no one.

So here's the update for those interested.

My kid had a shitty day.
She cried all day long and longed for her momma to be with her.

They changed her bus driver, to a MAN, a MAN I do not know.

Alone in a bus with a man.

and with his tone of voice and eagerness (insert sarcasm here)

there is no chance in hell.

I picked her up. She was sweaty and teary. She was sitting in her old classroom.

Poor kid.

Today she clung onto me for dear life as we stood waiting for the bell.
She wheeled off with a pout.

I hope things go better for all of us.

"If I EVER catch you stealing again, I will call the police and they will lock you up in jail FOREVER...no, wait, I'll do something worse, I will cut off your hand like they do in Western (Eastern?? I have no clue) Hemisphere".

"I don't wanna go to Jail, I wanna be free, I want to eat and play and I want my hand!!!"

"There will be NO CARTOONS today and I WILL CALL THE POLICE IF YOU EVER STEAL AGAIN!! YOU GOT THAT??!!"

She sobbed....she hugged me...she got serious..."I understand".

That was what went down yesterday. Miss C stole a spool of thread from a store we were in. The problem was not only that she stole, it was that she lied about it, hence making it very clear to me that she knew what she was doing.

I swear if she had been caught I would have clearly pleaded Autism in order to avoid a complete nervous breakdown.

I told Vader that I was planning to take her back to the store and hand a handwritten apology to the manager and apologize in public.

Vader thought I was being too hardcore.

Yeah, but that's how they start. Yesteray was a spool of thread, next week she'll steal a car.

They start young ya' know.

"I don't have a cat!!!!" 

Whaaaaaaaaaaaaawhaaaaaaaawhaaaaaaaaaboooohoooohoooooo
Shriek shriek shriek


"I don't have a cat!!"

Miss C was upset because Vader's new kitty ran for dear life when Miss C arrived.

Elmyra anyone?

She bangs on the table, she cries, she screams.  She draws broken hearts and little girls with tears.

"You don't love me anymore!! You have left me broken hearted!!"

and just before I could open my  mouth and say something wicked, Vader beat me to the punchline...

"...then get a heart transplant kid..."

You know what they say: The fruit NEVER falls far from the tree.

This is what Mr. Savage (appropiate last name by the way) said about Autistic Children.

While my kid has now entered a little bit of Brat Territory, I can tell very well, when it's pure "I wanna drive my mom up a wall" or "My brain can't grasp certain things".

He is nothing short of an Ass and it is very clear everyone in his home is healthy and well, may he never have to go through what we go through.

I just had to put this in a separate post.

Sunday when we arrived at the beach, there was a little girl playing on the sand, I think she was maybe around 7 or 8. Very cute and pretty.

Her grandmother was watching from the shore, while catching up on some reading.

She asked if her granddaughter could play with Miss C since "she loved playing with smaller girls".

I of course said yes.

As a mom of a child with learning disabilities I immediately noticed something was quite not right with the girl. She reminded me soooo much of Miss C. But it wasn't something any regular eye could notice.

After a while I went in the water with them and played a bit, pretending we were all sorts of fish and water creatures, they both laughed and giggled.

Then we sat on the shore a bit.

Her other grandmother came and said: "Get in the water a little while, you shouldn't be taking in all that sun".

I quickly offered some of Miss C's sunblock.

Her grandmother turned to me with a smile and said:

"Oh no thank you.", she leaned in and continued, "She is a little retarded girl and I have to continuosly tell her to get in the water or she'll burn to death".

She said it so casually, so non-chalant.


I was speechless. I, who would usually say something back, was speechless.


I was disgusted. How can she refer to her like that with such disdain with such, yuck.
First of all, the girl showed no signs of being retarded.


She was a bit shy at first, but she engaged in converstation, she asked me if I was Miss C's mom, what grade was she in, she told me she was in a special classroom, she wanted to be a dolphin when we played in the water...that does not seem retarded to me.


Her grandmother left and her sister (a teen about 16) came over to watch over her.


We went in the water and played some more. Her sister watched and smiled at me. And laughed when she saw us playing in the water and playing with her sister. Something about her smile told me she was happy, that maybe for once, her little sister was being treated like what she was: a child.

I barely talk about Miss C's problems, ok maybe I do a tad bit more, but I don't talk about it because well, I really have no idea.

Thing is today she had a medical evaluation, the typical back to school crap.

With a new doctor.
With a new government medical insurance doctor.

I hate these doctors.

That's why I had private insurance because I cannot tolerate these people.

Today was nothing different.

This was our 5th visit or trial visit. Everytime we went, they'd send us home because they were too full. I have a card that boasts the office hours from 8am-5pm and at 11am they attend no more patients.

Well then don't false advertise.

Anyway we went at 7am, take that you sicko's!!

They wanted her Social Security Card. I declined. You can't have it. It's against the law, due to identity theft, to ask or use my card or her card for any identification purposes, that is why she has an INSURANCE CARD.

After several odd looks, they obliged.

We made the #2 slot. They sent us in quickly.

After a few quick questions and revisions of her paperwork, the doctor quickly remarked:

"This child was misdiagnosed. She was never AUTISTIC."


WHAT??????????!!!!!!!!!!!!!!!!!!!!!! OH MY GOD!!! YOU DON'T SAY!!!


"I'm so sorry Doctor, I do appreciate your expertise, but she was diagnosed correctly".


"What are you trying to say?? That she is cured. NO ONE IS CURED FROM AUTISM".
She's a real bright one ain't she.

"I understand that, but she is recovering. You didn't see my child when she was at her all time Autistic high. Headbanging, handflapping, tiptoeing, screaming, no talking, obsessed, ritualed child. I KNOW. I lived through all of that. That my hard work paid off, that my sweat and tears and money made some of it go away, well that's a whole different story."

She sat in silence.

She then questioned as to why my child has not received Physical or Visual evaluations.

"Do you have any idea of how the Department of Education works?"


"Well, if you ask for these evaluations they will give them to you".

"Yeah, real soon, I got the Physical Evaluation 2 years after I originally asked for it and I fought for it too. I am not your average mom".


"Well, some parents don't work hard enough. There are organizations and lawyers who can help. It is a shame so much money (public funding) is not used because parents do not fight for it".

I sat flabbergasted.

What was this imbecil telling me??? That I wasn't doing my part. That I have been sitting on my ass for 4 years, waiting for it all to come to me????

"Well, Doctor, I disagree. Some of us, do work. But the problem isn't us, it's our government and the damn burocracy in which things are run".

She finally shut up and did her work.

She found a throat infection, was quick to prescribe antibiotics (which I will not give to her) and said:

"Well her not being Autistic should be a thrill to you!! You should be happy she doesn't comply with any of the traits".

"Yeah, well she still needs helps and just because she has gotten so much better doesn't mean it didn't exist".

I left.

Disgusted.

How dare she tell me that none of our lives ever happened. That I was a paranoid mother. That I did not cry for several years not knowing what would happen to my daughter. How dare her suggest that doctors didn't know what they were doing? Doctors not paid by the government, private doctors paid out of my pocket!!! And not to be stuck up, but the best doctors I could get!!!

How dare you be a Doctor and yet be so completely ignorant!

You should have your licensed revoked and you should dedicate the rest of your life to rocks.

When she asked me if Miss C crawled and I answered no, she responded with this:

“Oh, then don’t worry, that means nothing, many children skip that whole phase and they have no issues. That old theory (meaning Jean Piaget’s and Erickson’s developmental theories) are about to fall out”.

Really??? I guess I didn’t get the memo.

I immediately intervened: “I’m sorry, but I differ. It is not NORMAL that a human being completely skip a whole developmental phase, these phases are crucial for acquiring skills. Crawling promotes bilateral development, so important for pedaling, going up stairs, physical exercises, moving your torso and legs in opposite directions, etc. etc.”

“Are you a teacher?”
“No, I am a mother.”

She then put Miss C to jump, go up stairs and other meaningless things.

The therapist, poor gal, wasn’t bad, or mean. She was young and very nice. But one thing doesn’t have to do with the other. When she finished her evaluation she sits and says:

“Her hands are very weak and her scapulas are very pronounced”.

(This scapula thing, another therapist that saw Miss C, commented could be a sign of poor muscular tone)

“I also see she has difficulty staying still in a chair (another hint of poor muscular tone), she has poor posture, but I don’t think she needs physical therapy. She jumps, pedals, goes up and down stairs. I can’t recommend her for therapy only for these factors. Her posture can be corrected at home and in school. Her scapulas can be worked on in the summer, taking her to the beach and doing various physical activities”.

She then gave me a list of things to do.

Insert my silence here.

“Now, if you see that in 6 months she gets worse, you can ask for a second evaluation”.

“Oh, so we have to wait until she is in a condition, where maybe the damage is irreversible to qualify for therapy?”

“I just don’t think she needs it. I can’t recommend it”.

“You think I like the idea of therapy? Of taking her out of her school on a bus? You think I wanna charge up her already packed therapy filled agenda? I cannot accept your conclusions and I don’t think that in 45 minutes you can appreciate the problem of my daughter and I surely don’t think that just because she can jump and throw a ball, is a sign that she is perfect”

“Well, you can talk to her Occupational Therapist to work on her hand muscles, and you can take her to the beach and park this summer”.

“Her O.T. has already a work plan for her, which is not exclusively based on hand muscles, and what are we going to do when summer is over and I can’t keep taking her to the beach or park?”

Silence.
Silence.
Silence.

“Well, what I can do is recommend her for therapy for a period of 6 months only and then have another revaluation with an note recommending her release since I do not agree she should be in therapy to begin with”.

“Then you do that. You approve her therapy for 6 months and after that I’ll take over”.

And that’s how it went.

If I would’ve stayed shut I would have lost my morning and I would have left out of there without therapies for my kid. These people think I enjoy being there losing out on work hours, because I’m a maniac of some sort.

Parents, get your facts straight and don’t keep your pie holes shut if you think that something is incorrect and you don’t agree with what ‘specialists’ say. You are an important part of the evaluations and the services you kids get, and it’s in your right to beg to differ.

Well folks it's a done deal. Miss C graduated from Kinder yesterday and of course homegirl did not go out without one last huge bang for all of us to enjoy.

Though, you can't completely blame the kid.

The ceremony was held at a park. The children were dressed as sailor. They were stuck inside a building looking at the park from afar. Kids with white shirts and sneakers longing for a slide or a swing, stuck inside a room with no A/C and extreme heat.

There were tables with toys, gifts and even a table with little beta fishes in tanks, to be given to the kids as gifts.

The thing was supposed to start at 8am but began at 9am. Miss C started to cry, she wanted to go outside, she wanted to play, she wanted to jump and run and get a fish.

Everyone settle down, grownups started to speak and give long speaches in fact, Miss C got restless, she began to scream...kick, throw herself on the floor. The parents of the 'normal' children looked on in horror. I tried to calm her down. She screamed louder: "Go Awaaaaaaay!! I don't want you moooooom!!".

The teacher took her outside, it began to rain. She cried harder.

"Now I can't go out to play. Poor Park. Poor Park, goodbye!! (she waved goodbye)".

Nothing like a little theatrics thrown in for good measure.

By the time the clown came on to do his thing, it was almost 11am, she was starving as well as the other kids.

"Children, what time is it??" asked the annoying clown.
"Time to eat" the children chanted. No lie.

I decided to sneak to the food bar and try to smuggle in some tostitos, because as the clown sang, Miss C had her own chorus: "I waaaaaaaaaaaaant Foooooooooooood!!!"

"You can't give her any food because the clown doesn't like it when kids eat during his act".

"Listen lady, this isn't Barnum and Bailey's, my kid's having a tostito".


When the clown was halfway through his show, something caught Miss C's eye...a lizard. She went after it and caught it. Yes, she is the Steve Irwin of lizards (last week she snuck one into the mall in a box).

Teachers looked on in horror...."Oh my goodness do you know she..."

"Yes, a lizard. I know".

She demanded a box for her new pet, screamed at anyone who came near it and by the time they reached her name, out of the 43 other kids, to hand out her diploma and medal, she wanted to get it with the huge box in hand.

I finally coaxed her to release the poor creature and as soon as she had her diploma in hand, me and True flew the coop. Even though there were Happy Meals waiting for the kids and more fun and games, we couldn't take it anymore. How the hell were we supposed to enjoy and eat with a screaming child and a live fish on deck??


She didn't wanna leave, but I promised I'd take her to the beach on Saturday.
We hit up Mickey D's for our own celebration, came home and filled up the pool.

As I filled up the pool, the teacher called: "You left early, there was more".

More?? Thank you but no thank you, how much more can a 5 year old take without some fun involved??

And as I remmemered some of the parent's faces of joy and tears this afternnon, I dipped my feet in the pool and thanked God this uptight, 4 hour long horrorfest was over.

Thank God there aren't gonna be more of those until 6th grade. I was exhausted and wanted to slap upside the geniuses behind this badly organized event. But, one thing is for sure, Miss C went out the same way she came in: WITH A BIG BANG!

What do you want me to recap...??

That we lost this weekend series to Boston??? That we got our asses kicked.
That some dumb ass buried a Boston Jersey in the New Yankee Stadium to curse it, a la Bambino Style..?

That Miss C was so so behaved and that I was my cheery ol' self.

That my new nickname is "Little Miss Sunshine" (insert sarcasm here)
That I refused to do my hair all weekend long.
That I was a speaker at an Autism Conference held at a Mormon Church.

That I need some serious sleep.

That Miss C was being taught at sunday school all about the last supper and they gave them bread to eat and when they told her the grapejuice was the blood of Christ, she almost died...

"NOOOOOOO I don't drink Blood....NO Jesus blood!!!" insert gargling...throat noises here...

That later in the day she complained her arm hurt and I told her we would chop it off (sorry...we Puertorricans have a dark sense of humor) and she went haywire holding her arm because she thought I wasn't joking.

The kid is literal.
Bloody luck.

Did I mention the serious sleep part??
Did I mention we lost 2 out of 3 games?
That I sat with my yankees cap and screamed at the tv for almost 3 hours.
That I have a crush with Yankees new manager Giraldi...I think he's cute, not too competent, but cute.

We women, always suckers for suckers.

What have u been up to?

And for you Miss C...

Those girls who didn't want to sit at lunchtime with you and who broke your tiny heart (and mine too) don't know what they are missing...

We can be each other's best friends for as long as you like and we can play all the silly games you adore, we can pretend to be sea turtles and birds and fish and we can dance all wiggly all day long!!!

luv ya.

It’s April.
It’s that time of the year again.

No, not taxes.

It’s the month of Autism Awareness.

You’d think a month would make a difference in some of our lives.

The fact of the matter is, that a month doesn’t cover it.

But here goes what I would like to accomplish this months.

I’m daydreaming folks, so bare with me.

I would like for people to think before they spoke.

Let me explain.
I would love to go out and have Miss C behave to the tee.
Sometimes she does, sometimes she doesn’t.
She usually does the latter.
That’s OUR reality.

I would love to go out and people not stare at us like if we were something odd, like Miss C was some kind of E.T. I would love for them not to make comments on how poorly disciplined my daughter is, or how I suck as a mom for letting her get away with ‘murder’. I would love for people to not say things like:

“Damn, if she were my kid, I’d give her a good spanking so she’d straighten up”

I would love for people to not judge my emotional state, which varies in these situations from
“neutral-i-don’t-care-I’m-gonna-run-myerrands” to “I’m-so-sick-of-this-sh*t-whacha-lookin-at” to

“jesuschristpleasegivemeabreak”.

I would like to use my handicap quick checkout card and have people not say:

“What type of handicap does SHE have?”

I would love for people to wipe off the faces of horror when Miss C throws herself on the floor and see my indifference.

God forbid I let her do that and not act out and do something. I would love for people to mind their own business and stop handing out spectacular advice on how to take care and discipline my child, because in their humble opinion, “she doesn’t have anything, it’s just pure nonsense”.

This goes out to my neighbor who in recent days made me bring on the rain, to shut her ass up.

I would love people to not look at me with those eyes of: “Poor kid, that’ why they get pregnant? I bet she beats that kid”.

I would love for them not to look at my daughter with pity, like that school photographer who said, in my presence, “poor kids…they just reek with pity, don’t they?”

I would love for them to not look at my daughter with eyes of disgust, because they think she is spoiled or misbehaved.

I would love for my neighbor to shut her trap up and not call my daughter “stuck up” because she doesn’t say hi, every time that old hag wants her to.

If you want a trained pup, get a Maltese.

I would love for people to stop and think:
“Geeze, maybe something’s wrong, maybe there is something I don’t know about, maybe they are going through a tough time, or the kid has some type of problem”.

Instead of talking, I would love them to shut up.

Like Vader taught me: “Quiet you look lovely”.

Or like they say: “if ya’ aint’ got nothing nice to say, don’t say nothing nice at all”.

I would love so many things.

Like a World Series title before the Yankees have to say goodbye to their old stadium.

But that looks difficult.
The previous situation is even more difficult.

But I’ll keep on stopping them in their tracks…I’ll keep leaving them with their jaws to the floor and disoriented eyes, because sometimes I’m tired of their ignorance and think just like them:

It’s pure nonsense.

And it’s sad ya’ know, because today it’s me, but tomorrow it can be the same person who judged my daughter and thought she was a spoiled brat.

In the meantime, I’ll keep doing what I need to do. My life cannot stop because Miss C is cranky. I can’t stop going to the bank or supermarket because people give us hard looks, gotta keep on living and keep on spreading the Word.

Something happened this morning that all parents of children with Autism fear....

Danger!

Imminent, horrifying, danger.

Some of our children have no real understanding of danger and situations where danger can lead to diaster...

This morning as I was getting Miss C out of the Van, (I was parked on the street near the school), her toy Pet Shop figurine fell in the lane of a heavily flooded avenue and she yanked away from my hand and went out to fetch it.

I flung around in terror as the corner of my eye saw my daughter kneel down in the middle of the street to grab her toy...and as she screamed "My lizard!!" I screamed even harder "Miss CCCCC!!!"

No cars were coming.

Only God knows what would have happened then.

I yanked her and scolded her all the way to the classroom.

Her only response:

"My toy lizard!!"

She didn't get it.
She didn't get she was kneeled in the middle of the main avenue.

She didn't get that I almost died of a heart attack and now think: what will happen when I don't turn around in time...?

Yesterday I watched this: Autism The Musical

I don't know if it was a smart move on my behalf...or due to the state I'm in these days, healthy for me.

I saw myself in so many of those families.

I almost died when Lexi's mom yelled: "What kind of mother wishes their child die before them???"

sigh.

I ended my night with so many questions, doubts, fear, anger...above all perplexed...

How could??

How could the God of love allow this to happen??

True's answer: "So that He may manifest his Glory"

I'm sorry, but that sounds very egotistical to me.

Why allow grief and pain into a house...why allow a child to suffer from ANY type of illness??

I maybe understand the part about having their parents 'see the light'...but what if they don't?? Does this child have to suffer those consequences???

The documentary ended and I sniffled my way into bed, with my rage and my frustration aboard and all I could muster was:

Help me understand the why.

I sure hope the guy is diligent with his calls.