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Saturday, April 30, 2011

Autism Awareness.....

Three years ago, I really had little knowledge on Autism. All I knew, more children were being diagnosed then ever before. I learned about it from service providers and our former pediatrician, the amazing Dr. Wolloch, when were trying to figure out what was going on with Big Al. Reading books and websites helped me understand even more. When Little Al was started showing symptoms was when I knew that I was no longer just aware of autism, I was living it, breathing it....Two of my babies were on the speatrum.

April is Autism Awareness Month.

April 1st: We got Aly's official paperwork for her diagnosed of PDD-NOS in the mail.

April 10th: We scheduled our appointment to ask EI for ABA.

April 24th: We were approved for home-based ABA services.

April 30th: We were approved for leg braces.

Autism awareness does not stop today. Our journey with Autism does not end today.

Friday, April 29, 2011

Five Into Three...Does Not Compute.

Moldy Bread @ NYSci
I really don't like shorten work/school weeks. Starting or ending in the middle of the week throws me off big time. I have to do five days worth of work into three. Also, we all have to adjust to rountine and waking up early. Grunt!!! We are all walking zombies....good thing it's Friday. I bet they'll be awake at the butt crack of dawn.

Monday, April 25, 2011

Spring Break, Self-Stimulation and Routines.

We are now on day 10 of our spring break. Oh man, I think I got one gray hair for every day we were home. I do have daily routines in place in our home so that we don't walk around aimlessly but it seems like its not enough. It's not enough compared to the amount of routines Big and Little Al have at Easter Seals. Every thing is planned and timed out. X number of minutes until with have to do Y. All day every day. With 15 service providers between them something is always happening. At home there is only one of me. I wish there were more of me. I have to have coffee directly injected into my veins to keep up with monkey see and monkey do. My living room looks like a sensory gym. They crave constant stimulation, especially Little Al. This brings me to:

What is self-stimulation or stumming?

"Stereotypy, or self-stimulatory behavior, refers to repetitive body movements or repetitive movement of objects. This behavior is common in many individuals with developmental disabilities; however, it appears to be more common in autism. In fact, if a person with another developmental disability exhibits a form of self-stimulatory behavior, often the person is also labelled as having autistic characteristics. Stereotypy can involve any one or all senses.

Sense Stereotypic Behaviors
Visual
staring at lights, repetitive blinking, moving fingers in front of the eyes, hand-flapping

Auditory
tapping ears, snapping fingers, making vocal sounds

Tactile
rubbing the skin with one's hands or with another object, scratching

Vestibular (sense of balance)
rocking front to back, rocking side-to-side

Taste
placing body parts or objects in one's mouth, licking objects

Smell
smelling objects, sniffing people." (Stephen M. Edelson, Ph.D., 2011)

Big Al has changed self-stimulating behaviors from spinning in circle, staring at ceiling fans, spinning car tires and hand flapping to productive and acceptable activities like imaginary play, drawing, puzzles and the ever famous DSi.

Little Al has more behaviors then Big Al ever did. She has a behavior to stimulate each sense. It have been overwhelming to keep track and to re-direct her.

God bless the kids service providers.

Sunday, April 24, 2011

Potty Training SUCCESS!!!

Happy Easter!
I am pleased to say that Big Al is completely potty trained! BOO-YAH!!! No overnight pull-ups, no pull-ups for long trips. YEAH! He has successfully spent the last month dry as a bone. No major accidents for number one and/or number two. Just skid marks. This journey has been long and moist but we made it. Now it's time to work overtime on Little Al for diaper and pull-ups freedom!

Kids Sleeping In Mom & Dad's bed.

When I was little I don't remember running to my Mom and Dad's bed in the middle of the night. I don't know think I ever did because when I out grew out of my crib I shared a twin sized bed with my sister. No need to run to Mom and Dad, I have my sister right next to me. (Sorry for the accidents Katrina.)

When Big Bea was a baby she made frequent visits to my bed. At first, I placed her there. The warmth of me and her dad calmed her down very quickly. When I worked Saturday School, I would leave her in my spot in the bed and her and her dad would sleep in. (Lucky!) When she was able to climb in my bed she did. She did it every night. This seems natural to me.

However what seems natural to me is not to other.

For the last three days, Little Al has woken up in the middle of the night (varies times) and walked into my room and began to climb into the bed with me and dad. When this happens dad. quickly gets up and sleeps on the sofa. Hmmmm...I asked him why does he do that and he says that he doesn't like it when the kids are in the bed. Me and dad can debate this until the ends of the Earth.

Now Big Al never climbed into the bed. Every since he started sleeping through the night, he stays in his bed until someone comes to release him from his bed. I don't know what it is but that's what he does. If he was scared, he cries until someone comes to help him.

Little Al is going to spark this debate until we reach a happy agreement about the kids in Mom and Dad's bed.

Thursday, April 21, 2011

Spring Break & The New York Botanical Garden

One of the perks of working for the Department of Education is the many vacations that we get. It's great having so many vacations but that means I have the kids home with me too. It's a double edged sword. I love the time I have with them but Big and Little Al are so used to doing A LOT of activity at school they don't know how to just relax. Little al knows how to relax. She knows how to sleep in too. Big and Little Al need to learn from her.


Usually around the third day of vacation the Als start to get antsy. That's why mama's always has a plan. Today's plan....The New York Botanical Garden! I've wanted to go back to NYBG since our last winter wonderland visit. This visit we enjoy the Orchid Show at the Conservatory. Once again Little Al had a meltdown in the conservatory. I don't what it is but we walk and the tears and screaming start. Maybe she think we are really in a jungle when you first walk in. "Oh no! Why did mommy bring us to the jungle?" So picked her up and claimed her down...she didn't stop for a while. I wonder if I'll go deaf from her screaming?

The Orchid show was simply beautiful. I took about 100 pictures of orchids and flowers in the Conservatory. Me and Big Bea kept saying oh look how pretty or that's just so pretty. Pretty was the best word to use. lol. Once we were done sweating it out in the the conservatory, Big Al proclaimed that we are going to McDonalds. Little did he know that we weren't done yet, but I did take noticed that he was hungry/thirsty and visited the Cafe for snack-time.

After snacks he hopped on the tram for a tour of the different areas of the garden. We sat across for an older Asian family that didn't speak a bit of English. They fell in love with the kids. They begin talking baby talk in their language to the Little Al  For a moment I thought that Little Al understood what they were saying. (Maybe she is not speech delay, maybe we are just teaching her the wrong language.)
As we were travelling on Little Al kept shouting TREES! As we made it up one of the many hills, the Asian ladies started pointing and gasping. The magnolia trees were just breathing taking. The air was so sweet. The tram ride was every one's favorite including our new Asian friends.

We visited the gift shop before we left. I got another magnet to add to my museum magnet collection. I started my collection after visiting the Museum of the City of New York. I have to catch up and get magnets from museum I've visited already. Big Bea got a bird and a rose necklace. Big Al got a C harmonica. (yes a real harmonica...talk about culture.) Little Al got a duck. 

They napped well today. Thank God!

Wednesday, April 20, 2011

The Final IFSP For Aly.

Today was the day...the day we reached our "last" IFSP meeting for Little Al. After being traumatized by Amy vs. The EIDO, I never enter a meeting without page 4 filled out.

Two months ago, we had our annual meeting and today was our 18 month review and amendment. (Wow Little Al have been in EI for 18 months!) The timeline isn't very accurate, but that's ok.

Our meeting was held at general central station for EIDOs, the NYC Health Department Bronx County office for Early Intervention on Fulton Ave. I've been involved with Early Intervention since 2008 and I've never been to this building. (kinda happy about that) This building is located in a weird area, on a hill behind Bronx Lebanon annex. We got there 30 mins early because well that's just me. Big Al had a partial overwhelming meltdown because it was a new place and there is this painting of cartoon characters that he really didn't like looking at. It's been years since his done this kind of meltdown. He was very sweaty, held me close and told me "I close my eyes and go to sweep" Another EIDO asked me if he was sleepy and I said, "No, he was is having a sensory overload." He said, "Are you sure? He looks sleepy to me." While he was talking to me Little Al was walking around and walked passed him. He said, "Hello little girl." She ran across the waiting room to me and closed her eyes. He said, "Oh she's sleepy too." I said, "No." and rolled my eyes. This is an EIDO? I should have even him a piece of my mind but I was sleepy. I don't think he would have guessed that. HA! While we continued to wait I saw the EIDO from our annual meeting (Amy and the EIDO). She didn't recognize me but she said hi anyway.

At 3 o'clock on the dot today's EIDO asked for Guobadia family. I knew right away that I was going to like this EIDO because she pronounce Guobadia correctly. She asked me if my service coordinator was here. I said, "No." She said, " That's very weird we are usually waiting for the parent to get here." While we were waiting for my SC the EIDO from the annual recognized me because Aly was running around me. She was happy to see us and ask if we got the diagnosis.

We got settled in the meeting room. The EIDO ask if I had spoken to my SC and of course I did. I also informed her that my SC was Alex's SC. Five minutes later my SC arrived. I signed page 1 and the meeting officially began. My SC informed the EIDO that I am her best parent and I pulled out the goals that I had written out on page 4 earlier today. The EIDO's eyes widen. She was very impressed with my involvement. She quickly said, "I have to tell my supervisor about you." I smiled and turned a little red.

My SC wrote in all the information on pages 1-3 on the IFSP. The EIDO asked what was being added and we agreed that ABA was being added to address her diagnosis of PDD-NOS. The EIDO asked for the work sheet of the current IFSP, my SC didn't have them and I took them out of my folder. :-) The EIDO was even more impressed. She looked at the work sheets aka page 5. We added one more goal to the page 4 I created. In total, Aly has 9 functional outcomes and 25 objectives. Then the EIDO said, "OK, You want the whole 20 hours?" I said to myself, "WHOA! I can get 20 hours?" I said out loud, "No, no that's too much." My SC said, "Mom wants to keep Aly in the same center so 20 hours would be too much." The EIDO said, "So 10 hours?" I was very tempted to say yes but that will be hard on Aly and the family. I said, " 5 hours a week would be great because she is still getting SI every day." She said, "OK" The changes are effective 4/25/2011 until 9/10/2011. A whole 20 weeks! 810 minutes of instruction per week until she turns 3 years old. TAKE THAT CUOMO!!

A lot can change over the next 20 weeks, she can improve so much that she doesn't need EI or CPSE or she can not improve and needs changes in service. After much paperwork we can change this IFSP if needed, but I don't think we need to change anything.

It's so awesome to have an EIDO on my side....again.

Now it's time to bring on CPSE!

Now as we were waiting for paperwork to be copied Big Bea was complaining of illness. I asked her what's wrong then I can help you in the right way. She kept saying I don't know I don't know. She had the everything is going terribly wrong right now face on. I had to go back in to the meeting room to fill out a survey when the receptionist yelled, "Mom, she is sick." I rush out of the room to see a trail of vomit leading to Big Bea over the garbage can. She had vomit all over her face and glasses. I rushed her to the bathroom where is finished emptying the contents of her stomach. Lunch does not smell good on the way back up. I was so grossed out but she felt a lot better. I guess the combo of a warm meeting room and a stomach bug was not good for her. We got home quickly with no more accidents.

This was the first time I've ever brought the kids to anything of these meetings. Guess what? It's going to be the last.

Tuesday, April 19, 2011

New York Hall of Science

Today was a great day to go to a museum. After much convincing and lots of reminding, I got the Angry Black man to take us to the New York Hall of Science. The rain didn't stop that tons of people who flocked to NYSci. There were a lot of school and daycare groups there too. HA HA!! Those people didn't stop us from going in. This was our second visit to NYSci. (Here is our first visit)


We entered the museum and headed in the direction of the Mars & Space. We walked passed the area where Little Al took her first steps. She was able to walk up the step unassisted to the sports challenge area on the second floor. (Little Al was very conformable at NYSci..maybe next time when visit she'll do back-flips.)

The kids enjoyed this visit more then the last one. We were able to go to all the exhibitions and touch everything what we could touch. My favorite area was the water scale. It was a scale that weighed you and related it to how many gallons of water equals to your weight. The water scale just kept going up and up... I was cracking up. Good news ...I lost 15 pounds...lol.

I drilled Big Bea throughout the museum to prep her for the NYS Science Exam for 4th grades. She is on point!

After the science we had Italian ice at Benfaremo. Num Yummy!

PS: I bought two nerd t-shirt. hehehe They say: 1- May The F=ma Be With You. 2- Periodic Table of Elements. (I gave these shirts away because they are way to big. edited 4/1/13)

I am happy that I am not sick for this vacation.....knock on wood.

Monday, April 18, 2011

What Is ABA?

ABA is Applied Behavior Analysis.

"Behavior analysis is a scientific approach to understanding behavior and how it is affected by the environment. "Behavior" refers to all kinds of actions and skills (not just misbehavior), and "environment" includes all sorts of physical and social events that might change or be changed by one's behavior. The science of behavior analysis focuses on principles (that is, general laws) about how behavior works, or how learning takes place. For example, one principle of behavior analysis is positive reinforcement: When a behavior is followed by something that is valued (a "reward"), that behavior is likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may be harmful or that interfere with learning. Applied behavior analysis (ABA) is the use of those techniques and principles to address socially important problems, and to bring about meaningful behavior change." (Autism Speaks, 2011)

On Wednesday I have yet another meeting with another EIDO. This meeting is about, you guessed it, ABA. Now that Little Al is officially diagnosed with PDD-NOS that's time to get more services. Of course, the more you ask for the more they want to take away. My service coordinator warned me that they may take away Little Al s special instruction because of the addition service she is getting. After taking a deep breathe I did the math. Normally, ABA is done in blocks of time, like one hour every day of five days or two hours for two days and one hour on the third. It was recommended by her psychologist and former special instructor that five hours a week would be good enough for her. Anything more then ten hours a week will be WAY too much and she will be overwhelmed.

Let's do some math!
Currently, she receives SI, OT, PT & SLT.
SI: 150 minutes a day 5 days a week = 750 minutes a week.
OT: 30 minutes 3 times a week = 90 minutes a week.
PT: 30 minutes 2 times a week = 60 minutes a week.
SLT: 30 minutes 3 times a week = 90 minutes a week.

Now the three related services combined equals 240 minutes a week. These services are ALL pull out. She is pulled out of her SI class for each service. So 750 - 240 = 510 minutes. She is only getting 510 minutes a week of her 750 minutes of SI.

Now on to the ABA.
Recommended services frequency is 60 minutes a day 5 days a week = 300 minutes a week.

So looking at the numbers the minimum they can give us is 60 minutes a day 4 days a week of ABA to make up the SI. You know I'll be pushing for the full 300 minutes.

Ok ...now it's time to make some ABA goals! Where's my page 4?

Wish me luck!

Monday, April 11, 2011

I Gained...

I gained 20 pounds back. I don't understand how I am yo-yoing like this. I so can't wait for the summer time where I have the time to go to the gym. The Al's will be in summer school and I'll have Becky every other week soooo.... I'll have time to workout.. I am drooling at the thought of free time.

I Gained...

I gained 20 pounds back. I don't understand how I am yo-yoing like this. I so can't wait for the summer time where I have the time to go to the gym. The Al's will be in summer school and I'll have Becky every other week soooo.... I'll have time to workout.. I am drooling at the thought of free time.

Sunday, April 10, 2011

A Drunk Story

Last night I enjoyed an awesome birthday gift of childless night out with The Angry Black Man and The ERod (The Angry Black Man's cousin).  We went to Sammy's on City Island. The food there is just amazing. Sometime during the dinner time conversation we started talking about being drunk. We were talking about the point where you become what is called "White-boy-wasted." I never got to this point of drunkenness. Angry Black Man and ERod have been there. A few times in the past a few friends have said to me that I need to get to that point and just lose myself for once. Listening to every-one's drunken stories is a lot of fun but I don't think creating it is fun. Angry Black Man's drunk story ends with him waking up with half a mustache and EMS ROCKS written on his arm. ERod's drunk story ends with LOTS of vomit.

I think not having control over your actions are a scary thing but sure as hell funny watching others.

Email me at aguobadia@aol.com if you have a drunk story to share.

This Week....I Turned 31!

I don't feel older. I don't feel like any change really. I did feel the love from the people around me. Aly was sick on my birthday and show me love by throwing up on me. Big Bea show me the most love. During her art class is organized her class for make cards, paper flowers and drawing for me. Big Al gave me big hugs and kisses and declared that it wasn't my birthday it was has. (Too funny) At work, about 200 students said happy birthday and two whole classes sing happy birthday to me. By far, 2-310 in the hallway on the 3rd floor was the BEST. It was like a flash mob of seven and eight year olds. (I got a class hug when they finished.) The angry black man took me to dinner on Saturday and gave me my all time favorite sneakers. A pair of blue Converse and a pair of Air Force One. (I need two more pairs of Converse to have one for every day of the week) The Bestie celebrated with a KILLER chocolate cake during our lunch hour. The sister gave an awesome cake, balloons, (and the greatest gift of ALL) babysitting services on a Saturday night! AWESOMENESS!!!

I can get used to all this attention.

Monday, April 4, 2011

Who Needs A Date Night?

I know I do but it rarely happens. Alone time with your loved one is very important. In my crazy world, it's damn near impossible to plan anything. Date night, girl's night out and family gathering have all been cancelled because something always comes up. I know some tricks that can help strengthen your bond. (Let's see if the Angry Black Man bites.)

- Coffee. Getting a cup of coffee doesn't seem very special but it is effective. The coffee can be made in your very own kitchen, sit together and drink. It's an easy way to start a conversation.

- Plan outdoor activities. The fresh air does wonders. Apple picking is always a great thing to do in the fall  My favorite place to go is the New York Botanical Garden any season. It's a short trip into nature.

- Game night. Turn off the TV and break out the Clue, Life or Scrabble!

Go fourth and conquer!

Saturday, April 2, 2011

World Autism Awareness Day

On Monday, March 14th a New York State licensed Psychologist told me that Little Al's diagnosis is Pervasive Developmental Disorder-NOS.

Today, April 2nd, I got the official paperwork in the mail. Now she is official. I've known for longer then two weeks that she has PDD-NOS. I am happy that someone in early intervention saw what I saw in Little Al to get her a psychological evaluation on the tab of EI. I didn't want her to go any longer without getting the services that she needs.

Today is World Autism Awareness Day. How ironic. I got her evaluation today.

Autism affects 1 in 110 children and 1 in 70 boys.

Autism affects 2 of 3 children of my children.

Am I sad? No. I am empowered. The moment I became a mother 10 years old, I have been empowered. Neurotypical or not, I give my kids every thing they needs and almost every thing they want. Like I said before in my blog post: Autism Is Not A Four Letter Word...

I see so much potential.... There is no label on my kids that says "Autism"...but they are autism and so I am ...and so is Big Bea .......and Aston... and everyone else who love them.


Autism is not a four letter word. It is not a life sentence. It's a challenge I have taken on and continue to battle with every day.

I invite anyone into my home to experience autism.

Funny Story: The Funnies and Sillies...

The Funnies and Sillies by Margie Walker, creator of Tired Mom and Speaking On The Spectrum.

For the last couple of months, my daughter's floortime therapist has been focusing on getting her to learn and understand emotions (no small feat for a child with autism). Well, at least that's the norm anyway, but apparently, my daughter 'Beauty' is a natural. Not only is she good at recognizing emotions and reacting appropriately to them, but she can also dish them out really well. Here are some examples:


1- One day, I was standing in the living room tidying up and my daughter sneaked up behind me and yelled "OOOHH!" I literally jumped (and I think I may have squealed). I turned around to find her laughing hysterically! I said, "You scared me!" and Beauty started laughing even harder. She also added the "cherry on top" by rolling on the floor and continuing with the belly laughs. I was shocked and proud at the same time =)

2- Beauty has found a new love for spelling. Not two days ago, she looked at me and said, "Spell boat." That's her request for wanting to spell, so I replied, "Ok, spell boat." "B-O-A-T, Boat, " she replied. Then she asked to spell it again, which is not abnormal for her, so I told her to spell it again. She said, "B-O-T-A." I said, "No, that's not it." To my astonishment, she started laughing! And it wasn't just a "haha" laugh. It was a "BAHAHAHA!!" laugh! She was being funny! She mis-spelled the word on purpose! When she was done with her laugh riot, she said, "I'm so funny!" It's hard for a mama not to smile at that!

3- I finished changing her diaper the other day (nope, my five year old is still not potty-trained) and after she threw her diaper away, she started humming and creeping back over to me. When she reached me she yelled, "Tickle!" I reacted and began tickling her, just like she wanted. When she had enough, she said, "Hahaha... mama so silly!"

4- We bought a new entertainment center recently. This is no ordinary entertainment center - this is one where the TV mounts to it and disappears inside it! You can "put the TV away" when it's not in use. Every time Beauty sees the TV "go away," she says, "Bye bye TV, see you later!" When it comes back up, she says, "Hi TV. How are you?" Cute, right?

I could on and on with the new, cute, little things my Beauty is learning and doing. I never know what she's going to do next and it's made life a bit more interesting and a lot more humorous. I love spontaneously smiling and laughing with my little girl, something that seemed like a dream just a few short years ago. I love that she's finding the silly side of her personality. I anxiously await to see what she'll do next!
 
 
 
Funny story contributions are always welcome, email me at aguobadia@aol.com for more information.