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Sunday, October 20, 2013

The Beginning of the Rest of Your Life


Like many, I use to obsess with being thin, because in our society for the most part thin=hot and fat=not hot. This is embedded in us at a very young age. It's branded in our personality and our social make up. It pretty much carries over into adult hood and eats us from the inside out. It was like a tape recorder played in my head over and over again from the age of 8 "YOU MUST BE SKINNY,SKINNY MEANS PRETTY, BE SKINNY, SKINNY MEANS HOT, IF YOU ARE HOT YOU WILL BE HAPPY AND SUCCESSFUL SKINNY SKINNY SKINNY SKINNY" 

I struggled with my weight starting at the age of 12. I never liked the way my body looked. I was never happy or satisfied, no matter how thin or heavy I would get. Nothing was ever good enough.

Like the majority of you reading this, I was a YO-YO dieter and a sporadic exerciser. I would join the gym, go for 2 months and never go back. My goal was to get the weight off as fast as I could and I would do any fad or mainstream diet to do it. You name it I dabbled in it. I even tried laxatives and heavy duty diet pills for a while, seemed like a good idea at the time. I would go as far as endangering my life to lose weight. I failed at weight loss every single time. AS fast as the weight came off, it came back on even faster.

After I entered motherhood, my self esteem about my body plummeted.  There was only so much time in the day...and at that point I did not have time to diet or exercise or even shower. I would still go up and down in weight, based on my never ending fluctuating mood swings. My whole life I have fallen in and out of depressions and that has played a huge role in my issues with my weight, my body and most of all the way I thought and lived my life . Then eventually I would shrug and say "it is what it is" and just accepted this way of life. I immersed myself into my daughter and her Autism and just forgot about ME for almost 3 years. I do not regret this, because Grace is in a great place because of what I did for her, but I wonder if things would be different if I had the confidence and strength I lacked back then.

Hurricane Sandy catapulted me into the deepest, darkest depressions I had ever been in. Our lives were uprooted and we literally had no where to live. We bounced from friend's houses to hotels back to friend's houses. I have never felt so helpless in my whole entire life. We had to start our lives over from scratch. Everything we worked so hard for was washed away, GONE. My sense of home and security was stolen so quickly and there was absolutely nothing I could do. I felt so helpless and out of control. I was ready to crawl up into a ball and just stay there.

Everyone and I MEAN everyone I had crossed paths with in my life reached out to my family and me. People were sending checks, supplies, clothes, you name it it was coming our way. The amount of people and organizations that helped us was more than I could have ever imagined. As word got out about our situation and our story, people we have never even met started reaching out to us. I can never express how thankful and blessed I feel for every single person who helped us a long the way. 

Something started forming in me, and I look back and realize it was hope and inspiration and something else I lacked for a long time, strength. There was this voice that came through the darkness in my head and it nagged me all day and night saying "GET UP THIS IS YOUR LIFE GET UP OFF YOUR ASS TAKE CONTROL AND LIVE YOUR LIFE THE WAY YOU WERE MEANT TO"

...and so I did. I got up and vowed to myself that I would take control and change my life, completely.

"It is not until you have lost everything you have gained everything." This is a quote that came to me at the most perfect time in my life.



It is 10 months later and I have never felt more amazing in my whole entire life. I am changed for the better. The most marvelous part of it all is I CHANGED ME, I did it for me and by me. You can too. But there is a list of things you need to do immediately before starting.






The list to the beginning of the rest of your life:

1. Forget about wanting to be skinny, get that out of your mind NOW, this is not about being skinny, it is just an added extra bonus with what you are about to do. YOU WANT TO FEEL GOOD, YOU WANT TO FEEL HEALTHY. YOU WANT TO GET FIT AND STRONG. YOU WANT TO FEEL AN INNER AND OUTER PEACE.

2. The plan you are about to read about is not a diet plan, IT IS A LIFE STYLE CHANGE. Throw the idea of dieting out of your brain, erase it from your life. There will be no more dieting from here on in. You are changing your life with better life habits and healthier eating habits.

3. Repeat after me: PATIENCE. You have to have more patience and dig deep down for it. Let go of quick fixes, the do not work and they never will. You have gotten yourself to where you are after how many years...so you can not fix it to the way you want over night. Instant gratification is not in the plan. The slower you progress the better. Patience. Trust me.

4. There is no finish line, this process will never be finished. After every goal you succeed you will make more. I myself am still working at this every day.

5. Be OK with FAILING. Failure is inevitable when it comes to success and achieving your goals. The key here is to accept you may fail along the way. And after you fail you YOU WILL FIND THE STRENGTH TO GET UP AND MOVE ON. This is one of the most important things you have to do.

6. This step is different for everyone. You need to list the things you want to change about yourself. These are the things that hold you back in life. Mine were, not letting people affect me, re training my mind to react differently to negative situations. Another one was not to shut out the world and get down on myself. A big one for me is to finish what I start and let go of my baggage that holds me back. There are more to my list and as I cross one off another one gets added on.

7. Keep an open mind and ALWAYS BELIEVE in yourself.

8. Excuses. There are none. No more excuses from here. Things will always happen and life will always happen. There are no more excuses. If it doesn't work you will find another way. YOU WILL NOT QUIT AND YOU WILL NOT MAKE EXCUSES. NO EXCUSES.

9. Commitment. Have it in every area you want to improve in your life.

10. Do not compete with anyone around you. THIS IS YOUR JOURNEY AND YOUR PATH. We are all different have different ways of being measured in life. THIS IS ABOUT YOU if you want to compete then only compete with YOU! AND ALWAYS BE HAPPY for other's and their accomplishments. No one is better than anyone.

11. HAVE FUN!!! LAUGH!! SMILE!!! ALWAYS STAY POSITIVE!!! NO MATTER WHAT HAPPENS STAY POSITIVE!! If you are not having fun for the most part...nothing will change.

12. Get a journal or something to write in along the way. Use the journal for the steps listed above. Having everything on written by you on paper is very essential.

13. THE MOST IMPORTANT THING IS TO DO THIS FOR YOU! Not to impress the opposite sex, not for a high school reunion, not for anything other than YOU. DO this for YOU!!

After you have completed each of these steps you are ready to move into the next phase of your new and better life.



Three Areas Of Your Being and Who You Are

On my journey I realized something that is rarely addressed during the weight loss process. We focus on pounds and food mostly. There are 3 things I focus on daily and it all ties together, and with these 3 areas being worked on and modified your weight will come off and stay off. There is no magic involved, just a lot of hard work, dedication, and commitment.

When we want to remodel or renovate a room or an office what do we normally do? We clean out the entire area. We rip off the old parts. We essentially gut the area in preparation for new walls, floors, paint, furniture, etc.

The same concept applies to you. If you want to change how you feel, eating low calorie foods will change your weight...but not how you feel and think about yourself. You need an entire renovation, or the term I like to use is a cleaning or cleansing. You need to cleanse every inch of your being. You need to "gut" every old negative part you want gone to make room for the new positive parts you want to add.

Before I go into telling you what 3 areas I am suggesting and using for myself, you have to know how powerful the mind is. Your mind and thought process is going to be your biggest obstacle through this. With patience and understanding, you WILL bring your thought processes to the level you want it to be at and to a level you did not know was achievable. As the days go on and you become stronger the struggle will still be there with your mind, but the amount of time you struggle will decrease indefinitely. 

The three areas of your being that needs total cleansing is your MIND, BODY, and your SOUL. But how do you attain this?

Mind: You will re train your thought process, you will believe in yourself, and learn to fight the negative thoughts that cause you to give up.

Body: you will love and accept your body at every phase it is in, you will exercise to your own ability but always stay active, you will eat as clean as you can and eat healthy, take supplements, drink shakes etc. You must remember it is not to be SKINNY, but to be healthy, fit, and energetic and also full of life.

Soul: You will get in touch with your spiritual side in what ever way suits you. You will learn things about yourself you never even knew. You will get in touch with your inner self that some of us avoid at all cost. This is not about God or religion for everybody. This is about finding that piece in you that makes up who YOU are as a human being. It is about learning about the energy you give off into the world and accepting yourself fully.

I attack the Mind, Body, Soul cleaning on a daily basis. It is a lot of work but the rewards are %100 worth it.

Now that I have explained the skeleton of the process that I have been using for the past 10 months. In my next blog I will go into exactly how I transformed and cleansed my Mind, Body, and Soul. I will discuss the foods I eat, affirmations, my spiritual side, and much more. I am so excited to share this with you all, thank you for all the support so far. STAY TUNED PART 2 coming very soon!!























Wednesday, July 10, 2013

Imperfect Parents...WE DO EXIST

As parents we all love to paint a perfect picture to the public. We make sure our kids are clean, unwrinkled, well mannered, well spoken, and other unrealistic things like that. The best at soccer, the smartest in the class, an all star gymnast, VP basketball player... And as moms we must have the best baby bag, the best minivan, the biggest diamond ring, a marble island in our kitchen, and of course a very successful career husband. Am I wrong here?

One thing Autism taught me very quickly, was all that above is well...for the lack of a better word...it is all BULL SHIT. I am going to be honest that I wanted all of that crap above, because I grew up in a society where you weren't good enough if you weren't the best, richest, fastest, prettiest blah blah blah.

Then Autism knocked on the door. 

In the beginning I still lived in that fantasy world where everything had to be perfect on the outside. Then one day Grace melted down in a CVS and threw up all over the place. It was one of the first times the world saw the imperfect side of my parenting. Another time she threw a butter knife across the restaurant. So, I realized something really quick. Perfect is not real. And a lot of imperfect stuff happens behind close doors. And you know what? It doesn't make YOU a bad parent. But you will become a better parent when you admit to yourself, you can't control it, and it's not going to be perfect. Also embrace all the imperfect stuff and allow it to be apart of your life. Honestly if your kids aren't getting into stuff and flinging poop across the room, you are doing something wrong. ;)

You are also doing something wrong...

-if you have never had crayons or markers on your walls or furniture

-if your kids has never gotten the scissors and cut their hair

-if your kids have never pooped/peed/vomited on the couch

-if your kids drew with sharpie marker all over their face

-if they never sprayed a whole can of shaving cream and baby powder all over the bathroom and their body

-if they never have choked on something or almost choked

-if you've never called poison control

-if she never got a whole tub of hair gel...in her hair

-if she never punched a peer or pushed a peer out of her way

-if he has never eaten dinner under the table

-if you have never let them watch TV or IPAD all DAY

-if he has never been inside the toilet bowl...yes inside

-if she has never hit, kicked, scratched, punched, head butted you in a room full of people

-if she still has a bottle at 4

-if he still has a pacifier at 6

-if she never has spilled a whole box of cereal on your bed

-if he never got into jars of Vaseline...peanut butter...or anything sticky like that

-if you have never brought them to the bus in snow man pajamas in JULY with hot pink nikes

-if you have never fallen asleep and woke up to your daughter on top of the fridge or inside the dryer

-if your house is never a mess

-if you have never forgotten to buckle the car seat

-if you have never sent them to school with unbrushed hair/teeth or unbathed

-if you have never let them be naked or just chill in their underwear at home

-if you have never let her wear rain boots or ear muffs in the summer

-if they have never made any type of public 'SCENE"

and my all time FAVORITE

-if they have never walked in on you having SEX and assumed you were play fighting and then proceeded to jump on you...yea true story ;)

Here are some of MY greatest parenting moments :) and remember EMBRACE the imperfections of parenting...because in the end you will be a better parent.























Sunday, July 7, 2013

Listening Close Enough

It's summer! We have been doing all types of fun things before school starts up again for the summer. Today we went to a birthday party at a local amusement park. Grace blends in with all of the children. Which is sometimes hard, because when a behavior arises no one knows how to take it. Why is this girl repeating her self over and over again or why can't she comprehend a simple social cue? Why did she just punch her mom?

She ran on the fun house ride which involves a lot of motor planning. At first there were no lines so she could take her time maneuvering and doing all the climbing and such. As she came off she went back on again and again. At this point the fun house was getting a little more crowded so each part had extra waiting times. And it started. As she waited behind people she would script. She would pace backwards. The climbing she would get trampled or pushed back and have to restart again and again. In line for the slide part 4 kids passed before she realized she was in line. She came running off the slide and asked to go again. I said "of course!", inside I was screaming NO.

There was now a huge line formed to get in. I saw her get on line, walk off, get back on line, walk in a circle around the line. She then ran to me and grabbed my hand and pulled me to the line. If you knew Grace you would know she is extremely verbal, but moments like this she has no words. I went on line with her and assumed I could walk away. When she was solo she seemed so lost and so confused. Finally she got in!! And again she went slowly but surely, climbing as the other kids lapped her. She got to the bridge and paced back and forth and to the slide, after 8 or so children passed her she finally went down the slide.

It's hard to watch. It's like someone squeezes my heart and sets it down in my stomach. I get so emotional because my mind races to the future when I won't be there to bring her on the line. Of course as my mind is racing with all this fear and trepidation I see this beautiful girl smiling bright as her little butt scoots down the slide.

This is all she knows. She doesn't know any different way to do things. She may stand out to others. But for her, she's just being herself. And as she gets lapped in the fun house she never bats an eye. And when she's climbing and gets pushed down, she keeps climbing. All of this with such determination. She never gives up and she never complains. And when she's ready she will go down that damn slide. If she needs to pace or script so be it.

It's not about me...and what I see. It's about her. It's about her confidence and her never ending hard
work. Her determination to do things is admirable. Her personality not caring what others think or do is admirable.

When her feet hit the ground after the slide, my pained squeezed heart swelled. The hurt and sadness broke off and it filled with pride. I am so proud of my daughter. She teaches me something everyday that is if I listen close enough.

She knows me so well...

One thing my daughter doesn't lack in all her struggles is intuition. Since she's born, she's known me so well. She eased me into motherhood slowly by being a great baby. She then eased me right into her Autism diagnosis.

Yesterday was a bad day for me. I left the couch when necessary and just drifted through my day in zombie mode. I never know what triggers me, but something really triggered me. I haven't had a day like this since March. The sound of anyone's voice were nails on a chalk board and anyone's touch was like rubbing two pieces of sand paper together. (Click here to read more about my bad days)

Except hers. Somehow she just knows. She plopped down on the floor with her toys and her iPad and never left my side. She barely spoke to me or touched me. Even when she wanted the channel changed she just would hand me the remote. I was making her a shake and burst into tears in the kitchen. I feel so guilty I expose her to this, this ugly horrible side of me. But there are days when I just can't snap out of it, no matter how hard I try. I focused on my tears hitting the kitchen counter and cried the most when the blender was on. I watch myself outside of my body when I'm like this. I see this useless girl just sitting there and I want to shake her. "Snap out of it dumbie", I scream. But I can never hear me. How could I be so selfish and do this to my daughter? Why can't I get my act together?

I turned my bad day into a "camp out" in the living room with sleeping bags and tents. She also had all of her meals at the "camp out". Through out my journey of bad days Grace over exceeds my expectations every single time. She jumped on the couch with me and we napped for 3 long hours. Her head was on my chest and I breathed her in the whole time. I traced the outline of her profile with my finger and whispered in her ear like I always do, "Mommy's so sorry Grace, mommy will be better." A promise I can't keep, but I try, I really do try.

 She knows me so well.



Monday, July 1, 2013

A New Type of Mother: Ditching the Timeline

Grace and I went to the city today. (Manhatten) It was an impromptu adventure with very little planning. She is obsessed with public transportation so we took a train, a bus, and a taxi. It absolutely made her day!

We were patiently waiting for the bus and the anticipation on her face, took my breath away. A bus ride...my 5 year girl...enjoys the simple things in life. The bus pulled up and we inserted the metro card and found our way to a seat by the window, of course. She sat with a giant smile and took the whole experience in. She looked so free. She had no stress in her eyes, just this free spirited light hearted girl.

As the bus rode on I flashed back to me 3 years ago, mapping out her timeline, figuring out ways to get her caught up to her age appropriate milestones. I remember reading every progress report and evaluation closely and putting a time frame in my head when she would achieve that "goal". I was so neurotic. I became obsessed with milestones that I lost time with my beautiful girl. I lost breathing in and living moments. I was too busy computing time lines in my head. I do not regret all the work I did, but if I could go back, I'd probably lighten up a bit. The funny part is, if you asked me 3 years ago I would of told you I was "fine" and "living every moment". Truth is I wasn't, well not the way I think I should of. 

The last month or so somehow I ditched the stupid timeline. I've never felt so free as a mother. I feel this new found love for motherhood that I've kept hidden by this encapsulating worry and fear. Something in me changed and I let go a little bit. Trips to the play ground aren't filled with me worrying if she will be socially appropriate, or is she climbing on the apparatus correctly? If she rather play with the 3 year olds, good for her! If she wants to sit somewhere and script, Good! If she melts down, we will just work through it, like we always do. It's not like shes never melted down before. I've come to realize she will do stuff in her own time or maybe never do it. Maybe she will never ride a bike? Maybe she will never be class President? Maybe she won't go to college? I am not saying she won't do these things...but it's ok if she doesn't. After watching her today, my main concern for her is happiness and all the other Autism/development stuff follows after. She has her own path to fulfill, and I know now I have minimal control on her path, but I will guide her as much as I can.

So today, her and I lived in a moment of time. I took every ounce of it in. We ran and played. We hugged and kissed. We laughed and snuggled. We sang and we talked. I listened to every word that fell from her lips and watched every smile, every skip, run, and giggle. I cherished every moment. And for
this I'm a better Mother.

Thursday, May 9, 2013

Guest blog for Find My Eyes

There's a girl at the Birthday Party doesn't seem to quite fit in. Her social cues are off and she rather run around than sit and play. She's a gorgeous little girl, some say her beauty portrays a porcelain doll. She pushes kids out of the way, not because she's mad, but because she hasn't quite figured out her place in space and using her words correctly to do so. Everyone notices she's a little different. But she's so cute. But she can talk. But she's so smart (splinter skills). But she can walk. But she looks so normal.

"Happy birthday to you Happy Birthday to you YEY" the crowd screams. She screams in horror and sometimes flees under a table. No one reacts, but everyone is wondering why this little girl just did that. It's cake time. Also an indicator the party's almost over. She melts. Screams. Hits her mommy. Scratches her mommy. The whole room stops. Mommy removes her from the room. She's calm again playing with all the kids. I can see she's melting. I see her time ticking away but I remain on the sidelines. I watch her, she flees under something and lays there for a while. A parent looks at me like how could u let her do that. That parent scolds their child, "You do not go under there like Grace" while side eyeing me. Like Grace? I say to myself. I swallow a lump down. Are you blaming Grace? Sometimes I want to scream, "you can not discipline a neurological disorder!"

I know when things like this happen, most people can not wrap their head around my daughter. This is hard for me, because of this, some lack empathy for her. And my girl needs empathy.

Being a girl with ASD is tough, add aggressiveness and impulsivity the painted picture becomes more difficult for an outsider to process. In a room full of people who watch her melt down a huge part of the room say to themselves, discipline, spoiled, mean child. I can feel it. Their eyes burn through me as my daughter scratches my face or kicks me in the stomach or tosses a full cup of soda across the room. It's so hard to keep my heart from racing and to calm my daughter down when everyone's watching. I've learned over the years to block everything out and focus on my daughter's  struggles.

Every mothers dream is to do "girl like things" with their daughter. No one pictures a mother restraining her daughter. A mother telling a school district my daughter will agress towards anyone who puts demands on her. A mother zipping up her daughter's bus harness. A mother covering up scratches on her face with make up. A mother making sure nothing is in the backseat so nothing gets thrown at her while driving. Society is not aware of this side to motherhood in an ASD girl's life. It's never spoken about.

I am not ashamed of my beautiful girl, Grace. She does not mean what she does, and I will never give up on her. And I will work with her as long as it takes to calm her down. She's worth every scratch, bruise, and scrape. She's funny, so smart. And on her good days she's so loving. She loves so purely and so innocent.

She's not a monster. She's not a bad kid. She's not spoiled. She's Grace. She is a girl with Autism
Spectrum Disorder. She needs help navigating in a world that her brain can not fully process. She needs empathy. She needs you not to fear her or make her feel like she's a bad example infront of your kids. She loves. She needs your understanding. She needs your love. She needs acceptance. She needs above all AWARENESS.

Billy

Intuition. It was something I was born with. The intuition part of my brain developed at an early age. My brother Billy is severely disabled, the quickest way to explain is his development ranges from a 2-4 year old, he is also non verbal. Billy is also highly behavioral. He engages in self injurious behaviors and has a high threshold to pain. I always knew, from as long as I could remember Billy needed me. Oddly enough I never asked questions or judged Billy. I always true heartedly loved him, and just understood. Most of all I always knew he would be my responsibility one day. My parents any I never really spoke about it and they never asked me. They would never because I'm sure they flt it would be a huge burden. But to me, it's not. Taking care of my brother, my family, is not a burden. It's one of the reasons I walk this earth, I believe that. And having a daughter with Autism made that more clear to me. My intuition is what Billy gave me.

Empathy. I would say I possess something all humans need to have a touch of. Empathy. Watching my brother get so frustrated and bang his head on the wall until he bled or until the wall busted through. I learned empathy. This poor boy is so frustrated he has to hit his head on the wall to feel some sort of processing. Empathy. Watching my parents drag through their days after being up all night and still smile and laugh. Being empathetic is what Billy gave me.

Patience. Some say to me, "wow you are so patient". My patience comes from explaining to my brother a million times he can not go for a ride in the car over and over again as he would endlessly sign "bye byes in the car" over and over. Patience, when Billy would be banging his head or getting upset and I would watch my parents do everything in their power not to lose their cool and work through it with him. Now that I have Grace, I give her all that I got and always strive to be as patient as I can be with her. Patience is what Billy gave to me.

Love. Watching my brother love the little things in life like twirling a straw, the game show network, Elvis music. He whole heartedly loves people and things all discriminations set aside. After all the years and hardships my parents went through they still love each other and still hold hands. I love whole heartedly. My heart is filled with love and I'm not afraid to give it or show it. my relationships are all so fulfilling and beautiful because of the love i have for people. How to love is what Billy gave to me.

The list goes on and on. I could sit here and name everything my Angel Billy gave to me. He taught me so much and prepared me for life. Burdened? Never! If anything I owe him this, for all he has given me. It's my pleasure, it's the least I could do. My parents are reaching the age where they just can't do what thy use to. So Ernesto and I have decided its time to take the reins and start making
decisions for Billy. I'm honored.

My brother is my super hero <3


Monday, April 8, 2013

My Daughter with ASD Hits me PART 2: There's Always Light in Every Situation

We weighed out the Pros and Cons of Grace's behavior carefully. We came to the conclusion that she needed meds. We have done everything and more to get her where she needs to be. But let's face it the poor kid sleeps 3 hours a night, gets frustrated to the point of rage, and has so much trouble navigating her feelings. This was such a hard decision to come to. Honestly I am guilt stricken and feel like I failed...yet again. YEY parenting...ha ha.

The morning of the Neuro appointment happened to be April 2nd. I kept our business off the facebook fan page because I needed to gather my thoughts and the page was an escape to raise Autism awareness and do "blue like" things. How fitting the day we decide to get a prescription from the neurologist...it is Autism Awareness Day. It took Ernesto and me 2 hours to get her dressed and ready. She fought us every step of the way.

My Dad came with us to the appointment because Ernesto had to work. Grace was so manic and hyper and could not focus on anything. Thank God my dad came with us because 15 minutes in she lost her mind, running around and screaming. The nurse came in to get her vitals. I lifted her 45 pound fighting body onto the table. This is usually her favorite part. Not this particular day, she hit the nurse repeatedly. My chest became red with anxiety and embarrassment. While Grace ran up and down the halls with Pop Pop, I sat in the exam room and waited for the Dr.

It felt like forever, of course. I questioned myself over and over. Am I doing the right thing? If he doesn't come in 5 minutes it is not meant to be and we should just go. OK, if he doesn't come in 1 more minute we are leaving. Does she really need medicine? A minute flew by. I heard her noises echoing down the hall way. I had a whole verse planned out what I would say and ask. I looked at my phone...OK 30 more seconds and we are out of here. Yea We are out of here. Enter Neurologist, figures. 

Honestly I do not remember anything from talking to him. He saw all of my scratches, I retold the events from Sunday. It all went so fast I asked a million questions he told me a load of information, gave me a prescription, examined Grace, and it was over. We went back to the waiting room, and Grace had a meltdown. The one thing that I did remember was he said we have to improve the quality of her life. The office is also a typical pediatrician office, so of course that side of the room just stared at us.We finally get her in the car, and I start driving. SLAM a full juice box hits me in the mouth and I almost crash the car. I do not even say anything to her because she was startled by the jerking of the car and loud bang when it bottomed out. The whole way home she tried to escape out of her car seat.

My dad waited with her in the car while I ran into CVS. As I waited on the drop off line, I replayed the whole day, I stepped to the counter handed the technician Grace's prescription and closed my eyes. She was checking to see if they had it in stock. I took a deep breath let out a sigh and I whispered to myself, "It is time."

***********************************

We are reaching day 7 on new medicine, 1 dose in the morning 1 at night. Grace has slept 10 hours a night since we started the meds. Are meds for every ASD child? No. But they are working for us. She is not cured of course. But she is way more happy and way more easy going. I have noticed and increase in scripting. I am attributing that to the decrease in aggression. Major decrease. I have been charting her aggression, she is only hitting us 2-3 times a day lasting less than 30 seconds, where before we were getting hit NO EXAGGERATION 10-20 (or more if there is no school) times a day lasting 5-10 minutes. 

Honestly, I feel like I am living a dream. Ernesto and Me smile at each other constantly watching her. She is so stable and focused (for her hehe) and just so calm. It didn't change her, it made her a better Grace. Her whole entire team at school reports she has made leaps and bounds in just one week. Of course it has only been a week, and I am still skeptical. Like when will this stop working? When will she need the higher dose? Is this the right thing to start so young? Every time I fill the oral syringe I second guess myself and push the lump down in my throat. I squirt it in her almond milk or her breakfast shake and stir it in. I watch her carefully as she sucks down the chemical and pray for a good day. So far so good. One day at a time right? 


The first weekend Grace on her new medicine. We went out 3 days in a row and had not 1 transition issue. This is an example of an AMAZING WEEKEND :)







Sunday, April 7, 2013

My Daughter with ASD Hits Me

     My daughter hits me. She has been hitting me since, jeez, a long time. I know it is out of anger and frustration. But, sometimes I just can not take it. She gets into these meltdowns and it is like she is not even there, like it is not her. She punches, scratches, kicks, bites, pulls hair, and throws anything she can. When she does this, for me, it is the saddest thing to watch, To see your daughter lose control of her entire being and just want to hurt who ever is in her path, because there is a connection missing in her thought process. And me? I feel powerless. There are times where is has gotten so bad I just let her lash into me with her nails. 

We modified her diet about 4 or 5 months ago and we saw great changes, but up until last week we hit a wall, we only got so far. Last week she had off for Spring break, and she was 2 weeks post her surgery. The first weekend of her vacation she got a fever. Before her oral surgery her stim behavior was grinding her teeth, but now she is unable to grind. So she started licking her lips. That whole week she licked her lips until they were black. By mid week her lips were a mess and so was her behavior. She consciously could not stop licking her lips, it became a compulsion. She would lick scream in pain hit me then lick them again. I could not get her to bathe, change her clothes, brush her teeth, brush her hair, or sleep or eat for 5 days straight. By the 4th day I was in a fog from her screaming all day and all night, but still licking and biting her lips. We tried everything. I took her to the pediatrician, but they did not understand the severity of the situation and the obsessive stim behavior of it and gave us aquafor and antibiotics and sent us on our way. On top of all of this she had strep too. I was at a loss and just went a long with what she was doing. Her lips were now black.

Easter Sunday she took a 3 hour nap and I was relieved she was finally sound sleeping. She woke up from her nap in horrible pain. I could see it in her face. She was unable to regulate her internal and external environment. She licked her lips and screamed then hit me. I would leave the room, she would cry for me, I would enter the room she would tell me to get out. We did this for about an hour. 

The pain got so bad she jumped up and just screamed out as loud as she could. Threw anything across the room she could get her hands on. I saw her pain. But there was nothing I could do. She would not let me console her or even touch her at this point. (at times like these we usually restrain her but I did not have it in me because of the amount of pain she was in). I saw something change in her eyes. There it was, that glare in her eye where she can not control her self and it gets bad. I braced myself. She came at me full force and scratched my arm with all five fingers, natural instinct pulled her hand away and tried to get her to stop. Mother of Autism instinct knew there was no stopping her and if scratching me gives her a little relief then so be it. I watched her grunt and scratch my arms, I took deep breaths as her nails scraped into, then down my skin. She moved to my neck ripped my chain, and dug into my neck. At this point I began to cry, For me? NO! For my  baby, who I could not help. I felt helpless, there was nothing I could do. My arms began to bleed, and she spotted the blood. She looked me in the eyes in shock and began to cry. Her sweaty little body fell into my arms. I held her and rocked her and we cried. I held her as close to my body as I could. I could feel her heart racing a mile a minute. "I am sorry MOMMY i am so sorry" she yelped with tears running down her face. 

After I calmed her I had this cool numb feeling running through my body. I just didn't feel right. I was fighting my human instincts to be mad and want to fight back. It was not sitting well with me. I called Ernesto at work. "Hey, you need to come home, everyone is alright but you  need to come home." I cried, again, then hung up the phone. Ernesto came home and saw the look in my eyes and the sight of my arms and neck. His eyes welled up with tears and he just held me. I took a deep breath and explained as much as I could. At this point Grace had snapped out of it and seemed to be ok. He sat and played with her while I just sat in the other room and stared at the wall and thought, WHAT are we going to do?

That night Ernesto and Me were laying in bed staring at the ceiling and we both knew it was time to really start considering MEDS.

...to be continued...








Friday, March 15, 2013

Silver Linings Continued

Last Night I posted:

There is always a silver lining to life. With a special needs child comes a lot of hardships and struggles. Struggles that many people can not grasp. Sometimes you will explain things to others and they just can't wrap their head around it.

With that being said there are also upsides. There comes an appreciation for life. You learn to master negotiating. Even though on bad days your heart can ache, but on the good days the smiles are real and the happiness you do feel is pure. You have achieved so much, you're not even aware. With every hard thing that comes your way you find beauty in it.

Grace has sensory processing disorder, which with many super kids, it goes hand in hand. Every night I rock my 47 pound girl tight to my body for almost an hour, standing and swaying back and forth. I make sure I don't skip a beat to ensure her she is secure. I also sing a list of routine songs over and over again. Even when my knees can not do it anymore I some how am able to rock her on through. Every night when she finally drifts off to sleep, my eyes well with tears. My heart beats out my chest. I always hold her a little extra long just to breathe in the moment. I watch her sleep. I feel so lucky that my 5 year old girl still needs me to hold her close to me to feel secure and sleep. I cherish this. I am thankful for this. Silver linings...pieceloveautism


With that being said I realized there are so many more good things that can come out of this journey so I have devised my own list.


SILVER LININGS of  being a Super Mom

1. no drama, there is not time for it. Life is easier this way.
2. Being able to pull positive out of any negative situation
3. Laughing at the small stuff
4. Being able to pull it together on 2 hours of sleep
5. Would be really successful in a hostage negotiating, bc my days are filled with negotiating and sassing
6. I can spit out 27 acronyms in 13 seconds and define them all in 25 seconds
7. PATIENCE
8. inside jokes with spouse NO one will ever understand
9. Even though she is 5, her social level is delayed so I get to keep my baby a little longer <3
10. the people who are in my life on a daily BASIS truly love us and we are so lucky for them
11. full day of pre school
12. when I find time for a mani pedi, I can not even describe HOW amazing I feel after
13. Cherishing every little thing
14. BLOGGING 
15. ACCEPTANCE it has come easier since ASD
16. LOVE, I never knew what love was until the BOSS
17. PRIDE
18. SUPPORT
19. MELT down manager, this has given me the power to be out in public and cool typical adults down in line at the food store

and my favorite one

20. YOU ALL my readers MY SUPPORT you all inspire me. If I didn't have Grace, I wouldn't have you <3

Sunday, March 10, 2013

This MOM

 I have not written anything in 2 weeks. There is a lot to explain the reason for my absence from the thing I enjoy most, Writing. We are moving out of the room we live in to our very own apartment, school is kicking me around, and the other thing is hard for me to talk about, which is odd. I usually am very open and it is easy for me to express my feelings, especially the tough ones.

Out with it. 

This coming Wednesday The Boss Lady is having surgery, on her teeth. She has to be put to sleep totally to have her mouth worked on, because it's a mess. The part that kills me the most, is this all could of been prevented. They are definitely pulling her top front teeth, all 4 of them. The surgeon has not decided what he will do for the molars, the other teeth, and gums until the actual day of surgery.

Rewind with me. Grace is 15 months old and getting ear infection after ear infection. It took 2 people and battle wounds to get her shoes on. She wasn't speaking. She wasn't even present and when she was she was battling us on getting dressed, transitioning, and BRUSHING HER TEETH. Everyday for everything was a constant battle. I threw in the white flag, I SURRENDER, for teeth brushing. If I could go back I might of worked a little harder and found the strength to hold her down two extra times a day to get her teeth brushed, but I didn't have it, Ernesto didn't have it.

Trying to get her to speak and communicate, was the first thing on my mind. Autism Spectrum Disorder was on my mind. Her future was on my mind. What time each therapist was coming was on my mind. IEP meetings were on my mind. Somehow along the way dental hygiene just took the back burner. How was I able to research Sensory Processing Disorder, buy a $200 weighted blanket, but neglect her teeth?

As a stim behavior she grinds really bad...really bad. The grinding made everything 10 times worse. We are talking to her about the surgery on Wednesday but she is not OK with losing 4 teeth or more and is having a hard time generalizing. For now we have stopped discussing and whatever will be, will be.

I know I am going to love her little toothless smile, and luckily it is her baby teeth. She is so strong and will be fine, I know she will. She has proven that to me thus far on many occasions. But I am so guilty. She is going to have to endure this because of me, because I failed her, again.

Another failure to add to the list. Another thing I could of prevented and gave up on. Another reminder things are not normal. I never thought I would be the Mom who let their kids teeth rot...I wasn't suppose to be this Mom. But, I am this MOM. 

Tuesday, February 26, 2013

A Different Side of Me

Fades, Fading

pretending to be present, smiling, screaming on the inside, forced hugs and kisses, pushing to have patience for her, pushing through my day for her, making our beds, picking up toys, crying in the bathroom, pushing anxieties and fears away, touch is tolerable, breathing, deep breaths, sleeping while she is at school, pushing myself to shower, pushing her to keep a routine, folding laundry, cleaning the bathroom, tingling before numb, ignore most calls, music helps, pushing all I have for her, I'm slipping

..."I'm so tired of being here"...

Black, Dark

gone, detached, staring, watching myself unravel, numb, tired, sleep, do the least necessary for her, no patience, she wrecks the house, I leave it wrecked, numb, sleep, tired, irritated by touch, irritated by sound, leave the toys, screw the beds, screw the laundry, screw the shower, I can't breathe, sleep, bed, meals if we must, all sounds like nails on a chalk board,alone, fustrated, cry for her, guilty because she has to live this too, apologies to her while she sleeps, my tears hit her cheek. I am sorry Grace Mommy will be better.

"...If you have to leave, I wish that you would just leave..."

Light, Brightness

here, present, elated, SO HAPPY, patience, routine, cleaning, organized, HAPPY, loving, hugs and kisses a must, feel everything, living, life, breath comes with ease, HAPPY,make lists, set goals, embrace her, play with her, engage with her, lay with her, brush her hair, bake with her, hold her, watch her sleep, cry, my tears hit her cheek, Mommy is here Grace, Mommy is better, Mommy is HAPPY

the guilt sets in...

..."Your presence just lingers here and won't leave me alone"...

I have been battling these waves of emotions for years. This is the worst it has ever gotten. If you must know or haven't figured it out, I am talking about Bipolar Disorder. It is very real and very hard to talk about. As a mother battling this constant roller coaster I am not only ashamed of this, I also do not want people to know my pain and my struggles or to see my inner hardships. Why should I burden you with that? I hate to admit that I can be this type of mother sometimes. I feel like a monster, a horrible person. But this is who I am, and I fight it as long as my mind, body, and soul can. It is something many people do not talk about. It is something we try to avoid. Because it is raw, unhinged, and very dark. But I wonder how many are you reading this, nodding your head "YES this is me," or "I tend to do this"...

..."you still have all of me"...

this illustrates it all, a song to Bipolar Disorder, from your prisoner


Friday, February 15, 2013

My Weaknesses

What a morning. What a day, What a week. What a month. What a year. What a life. This morning wasn't all that bad, but maybe it was the straw that broke the camel's back? I got into an argument with a friend over "going out". I don't even have the energy to shower, let alone go out on a days notice. Is that selfish? Sure. I am very selfish. But for good reasons. I selfishly want to be with my daughter all the time. I selfishly rather hang with people who have kids so she can play with their kids. I selfishly rather stay in on a Saturday night and watch TV. I am selfishly obsessed with my face book fan page and blog. I can probably go on and on.

Right so back to this morning. We have not been sleeping because Grace has trouble. She gets up and down all night or wakes up at 1 am and stays awake until 7 and then does a 2 hour power nap. My days blend. My sanity is writing. So this morning, Ernesto was running around trying to get ready for a grueling 14 hour shift. I was contemplating sending the Boss to school or not. The check engine light was on in the car AGAIN. My dad was calling to take the car to be fixed. Her school was calling. I was trying to email my professor. Ernesto couldn't find his belt. Boss was screaming she wanted mickey mouse pancakes and circle pancakes over and over. I was stepping over the "middle of the night's mess" she made to get around. At one point I was just running around in circles with a whisk, a mixing bowl, and a Sharpee in my hand. Everything dropped and I shut my eyes tight. I felt the walls closing in. I did not want them to see I was losing it. I went into automatic mode. Made pancakes, found his belt, kissed him off to work. I knocked on my brother in laws bedroom door and said, "watch Grace, My Dad is taking my car to be fixed, I have to go pick him up". I brushed my teeth threw on jeans and ran out the door.

When I got into the car my heart was pounding a mile a minute. I could not even see. I put on the radio and fumbled to find my Christian Rock station, the powerful inspirational songs usually do the trick...NOTHING WAS WORKING...I just drove, the GPS said it took 30 minutes to get there. SO on I drove, like a maniac. Listing all the things I hate. I never hate! At this moment I was hating hard. I hate that Ernesto works so many hours. I hate that Grace hits me. I hate autism. I hate we have no where to live. I hate hate hate. Then I got stuck by someone who crashed into a tree. And I was pissed at her. She did not even do anything to me...she held up traffic for about 15 minutes...but really, did I have to waste energy on being pissed at her? OH but I did. I still had my christian music on, as I was waiting behind this "idiot" who needed her car towed.

And there he was my "marker moment". His name is Jason Gray he is a christian rock singer. Get this. He has a speech impediment. As I listened to him do a live interview and struggle to speak and stutter, my shoulders relaxed, and I just listened. He had such a strength in his voice and pulled me right in. He spoke how we need to be open about our weaknesses and turn them into something more. 

“When I’m willing to work out of my weakness, there are more chances for God to show up and for the unexpected to happen,” Jason explains. “My strengths—which are really quite modest—are limited to me, but with my weaknesses the possibilities are boundless.”

When he said that I just cried and cried and cried, I guess it turned into sobbing at that point. I was right there with him hanging onto his every word. His stutter melted away and I did not even hear it, because I heard and felt the power of his words. This beautiful person, enlightened me. All of a sudden I wasn't mad, I was at peace again. 

I want to share my weaknesses with you because I want to be open and freed from them so here it goes...

1. My self esteem is something I struggle with
2. I have one vocal chord and because of this to speak in front of crowds I turn red
3. I have words of wisdom on a key board but face to face it takes me longer to process
4. I let grace write on the wall when I am to tired to deal
5. I sometimes lie about how I really feel to make others feel better
6. I hold things in
7. I have hit Grace on her Butt and hand a handful of times in the millions of times she has hit me
8. I have had a professional tell me I might be bi polar
9. There are days I don't get out of bed or go back in bed
10. I have a selfish all about me side, that scares me and I supress
11. I have been in dark depressions
12. I have sent Grace to school with out her teeth or hair brushed because I couldn't find strength to hold her down
13. I comfort eat
14. I imagine life in other scenarios
15. I save everything until the last minute
16. It is really hard for me to stay organized
17. I have an addictive personality
18. I can be flakey
19. there are days when I let Grace do whatever she wants (I pay for it later)
20. I have been avoiding doctors appointments for 2 year even though I am so suppose to get myself checked ever 3-6 months


That was very hard for me to write and I ask no one to pass judgement on me, and just be open to the fact that we all have weaknesses and maybe think about your own. I am so thankful this man, Jason Gray, came onto to the radio today and snapped me out of my fog of anxiety and confusion.

"I wanna live like there's no tomorrow. Love like I'm on borrowed time. It's good to be alive. I won’t take it for granted. I won’t waste another second. All I want is to give a life well lived to say, “Thank You.”'








Thursday, February 14, 2013

Truth is...

Dear Society

My name is Kelly and I have a 5 year old Grace. She has Autism Spectrum Disorder. Do you know what that is? In short people with Autism Spectrum Disorder see the world differently and process things like external environment differently. I am writing to tell you that I am tired of accommodating you and your feelings to our situation. I am tired of people shaking their head at my child on line at staples because she is scripting or having what you would label a "temper tantrum". It is actually called a meltdown. I am tired of staff members at a store reprimanding my daughter for something she can not control. I am tired that bringing my daughter into a store is stressful enough and YOU add onto it. The Autism Community is tired of it all. How is it that millions of people can have a face book account and access the Internet from their cell phones but have no clue what Autism is, or have no care to. In this day in age there are no excuses for not educating yourself. The ignorance has to stop and the acceptance has to start. Us ASD parents have accommodated your feelings and opinions for so long. As humans we are naturally able to accommodate, so let us into your world. I am tired of this universal isolation we all feel. Like it or not, it is our Autistic kids' society too, and they have just as much right to be on line at Staples as you do. For a child to have a disability it does not always have to be blatantly in front of your face. Educate yourselves. Instead of reading what Kim Kardashian had for breakfast, Google Autism. 

So the next time you see the 5 year old screaming and throwing things at a very tired Mom, before you go to judge say to yourself hey MAYBE that child has Autism Spectrum Disorder. When you see a child running away from their dad or is spinning in circles waiting on line, hmm MAYBE it is Autism? Saying something negative or reprimanding the child, you may think you are helping but you are not. You actually add stress to the situation, even if you think the child is endangering themselves, WE GOT IT, we can handle it. We do this everyday all day. Just smile and keep it moving. It is time for you to accommodate us. It is time for you to understand and accept what we go through on a daily basis. So wake up and read some facts. Autism is growing in numbers every year, so it is the time for awareness to grow. 

Truth is I am just so tired of it all.

Sincerely,
A tired mom of Autism

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Monday, February 11, 2013

A 4 Yr Old With Empathy

The Boss is officially 5 years old. We had a small family gathering because of the whole being displaced situation. She has many friends at school, kids like her who she has made bonds and connections with. My biggest fears in life is Grace surviving in the typical world. There is only so long that I can protect her and keep her away from the typical world. Boss is not a boss around typical kids. It is actually heart breaking to watch, she escapes reality a bit. You can see her confidence level decrease. So, this is why I worry.

One of my closest friends, she is more like a sister to me, has a daughter Reilly, Reilly is 4. She is the typical child with a capital T. She loves princesses, dress up, pretend play, girly conversation, drawing flowers, and dolls. Most of all she loves Grace. She just understands her with no explanation. I have never met a 4 year old with empathy. Reilly has empathy and never faults Grace for anything she does. Reilly has seen Grace in a full meltdown with aggression and screaming. Reilly HURT and CRIED when she saw this, but it was for Grace. 




Reilly is such an amazing influence on Grace, vice versa. So we take Reilly as often as we can. Reilly has mentioned to me a few times that Grace is special, and she thinks differently. Mind you her mother has never said anything to Reilly. She just has this natural intuition and beautiful soul. If  I am trying to get Grace to transition, I will sometimes say things that aren't true, and Reilly the 4 year old winks at me because she knows what I'm doing. 

I love to watch them play. Reilly thinks Grace is hilarious when she scripts. She is actually amazed Grace can recite shows, and I will see Reilly racking her brain trying to figure out what show or movie she is scripting. Grace will only interact up to 5 minutes then go into solitude. Reilly knows this but still stays by her side and parallel plays with Grace, even though she has surpassed that. She never tells on Grace and has never once complained about Grace. How lucky are we to have found this patient, empathetic, loving girl?



At times when I have Reilly, I fight back tears and that nagging lump in my throat. I get mixed emotions because of the interactions I have with her. I am able to rationalize with her. I have these detailed two way conversations about the past, present, and future. It is amazing. I cherish it and tuck it away in my heart, sometimes tap into it when My Boss has her unclear opaque moments. When I watch Grace struggle I watch Reilly help her along. Super Daddy and me exchange infinity smiles when Reilly and Grace play. When Grace fades off, Reilly gets in her face and makes her pay attention. Reilly brings so much joy to Grace's life. I even use seeing Reilly as a reinforcer. 

When Grace has to leave Reilly's side it use to be a really emotional even they would both cry and scream. Until one day my dear Reilly whispered to me "I am going to be strong for Grace and not cry so she has an easier time" When I got in the car with Grace that day I cried the whole way home and rubbed Grace's leg and told her how lucky we were to have Reilly in our lives.