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Tuesday, March 25, 2014

We've Lost Her Again...

She has seeped into that world of hers I deeply fear. It's that world she goes to, when our world has failed her. Our world no longer feels safe to her, she has no security and doesn't trust anyone around her. When she comes to our world it's usually with stimming, scripting, crying, screaming, high pitched vocalizations, manic behavior, ticking and that unintelligible language she resorts to.

She has clarity at times, but it diminishes in minutes.

Truth is, I knew this was going to happen, I knew it, and something in me remained silent and decided not to follow my gut.

Grace was placed in an inclusion class at the beginning of the year, and I knew it was not the appropriate setting for her. She was coming from a class of 9 children on the spectrum with 1 teacher and 3 assistants. There was absolute control in that classroom. That was her life for 3 years. That was all she knew.

Entering kindergarten my school district thought she might do well in the inclusion class, 17 kids, a special ed teacher half the day and a 1:1 for Grace. I knew it was wrong for her, I knew it all along, and I said nothing. And here we are searching for a new school for Grace.

I think when everyday is a constant fight, there are some moments when you just don't have any fight left in you. Maybe apart of me hoped and wanted to believe she could handle the bigger class with the typical children? Maybe I just wanted us to feel normal for once? But I knew in my heart of hearts...it was going to backfire in my face.

Everyday I wake up with anxiety. Will she have a good day? Will the school call me? Will she hit someone? Will she hit a peer? Will she injure herself? Will the kids laugh at her?

From the moment we drop her off until the moment I pick her up these anxieties and fears race through my head. It is almost a sigh of relief when her school day is over, because it is one more day closer to the end of her school year. If the behaviorlist walks her out, my heart drops, because that's the sign of a very unsuccessful day.

I can't believe we have lost her again. Everything we have worked so hard for is gone. I am not sure what she learned in kindergarten this year, but it taught me to always follow my gut and my instincts. I also learned to find my voice for her, and face the reality of the situations presented when it involves her education.

It took 5 people, 45 minutes, tears, screams, unintelligible language, hitting, kicking, scratching, coaxing, transitioning, carrying a thrashing 60 pound girl, to get her into school today

I felt lost as I held her fighting body. Ernesto looked like he was going to pass out from sadness and heart break. They told us to leave, they could handle it. Everything in my body wanted to scoop her and just take her home. I forced myself out of that school, into the car. My heart is still beating so fast, and the tears are just pouring out of my eyes. I feel helpless, because I can't help her. She is suffering and in that moment and many moments there is nothing I can do but just, WAIT. No child or parent should ever have to endure this emotional pain while dropping off at school.

After this morning I vow I will never let Grace down in this way ever again. I will do everything I can to make our world desirable so she can come back to us and trust us again. Whatever it takes, whatever I have to do, I will do it as long as I have to. We need to find her again. I need my girl back.


(DISCLAIMER:I will say her team is great, they have done everything and more for her. They have tailored her education in the best way possible and they are so loving and so patient with her. I am very thankful for all they have been trying to do. It is just not working. The reason being is the school is not an appropriate fit for her. She needs an appropriate setting for her needs.)



Wednesday, February 5, 2014

Because of Her Everything is Ok

My sweet angel girl,

In 2 days you will be 6. I have started this letter over and over but I can not seem to get through the first sentence without crying.

You are turning into this magnificent little girl. I actually have no words for how proud I am of you and how you WOW me on a daily basis.

I still can not believe you are turning 6! Grace, in the past 6 years, I have never seen a little girl stay so strong and never give up. And your WILL, I admire that about you, you have this WILL and passion for life like none other. I love to watch you experience the world, because you experience it in a way others can not even begin to try. You see every detail and every piece of what you are doing and you do it so effortlessly.

The bonds you have created with the people around you leave me speechless. You have this way with others. You touch everyone you come into contact with in such a deep compassionate way. You change people, you make the ones around you want to be better. You are my inspiration, you are the reason I have worked so hard on making myself better. I learned how to live, because of you.

I learned how to smile a true smile, I learned how to laugh a true laugh, I learned how to cry a true raw cry. You have changed me and continue to on a daily basis. As each day passes I am anxious to see what you will come out with next, or inspire me to do next.

From the moment we found out about your presence in this world, all odds were against you. Many of my closest friends told me not to have you and how having you would be the biggest mistake in my life. From the very first moment I heard your little heart beat, I knew different, because this wave of peace was constantly flowing through my body.

As you grew inside of me, so did people's negative opinions and judgments. Your Daddy and I didn't care, we walked with our heads high, and promised each other we would give you the best life possible and all the love we had. It didn't matter if you weren't planned, or we weren't legally married...that doesn't matter. What mattered and matters is YOU my Grace, were created from the greatest and strongest love possible. You were meant to be. You are a gift, and more than I could of ever asked for. I say it all the time, YOU rescued me, and I will remind you this every single birthday.


I look back onto when I was pregnant with you, and the people who supported me would ask how was I so calm with all the negativity, and I would answer, "She calms me, because of her everything is going to be ok"

And despite of what we have been through, little girl...

It is now 6 years later, IT is still OK!

I love you to the moon and back my boo bear, and as each year passes by, remember to hold onto your dreams and never ever give up because you can accomplish anything.

Love Always,

Mommy


 


Friday, January 17, 2014

I Was Gone for a Minute, but Now I'm Back

I have sat down and started numerous entries. A part 2 about my weight loss, about our big move into our new home, about my darkest day this months, but something was blocking me.

Grace has been struggling immensely at home and at school, between her meds, diet, and not being in her home for a year...oh and plus being on the spectrum. The past 2 weeks we are moving upward and onward and things are looking much better. So I guess a part of me is feeling more at ease share and blog?

I am getting off topic, as usual, FOCUS, blocked, so I have been blocked. Every time I would sit down to write, my hands hit the key board and there was no flow, just me pushing and squeezing mini thoughts past this huge wall that I couldn't see past. I realized what the wall was or is rather....'

It is partly that I have not been completely honest with my readers about Grace, and my biggest thing I strive for with my blog is honesty, good, bad, vulnerable, sad , mad...I always write honesty and never sugar coat.

Grace was diagnosed with Tourettes Syndrome, and we have been quiet about it. I am not sure why? I am having a hard time processing it. Why Tourettes too? Doesn't she have enough to deal with, doesn't she stand out enough already? She makes noises over and over and I cant stop them. There is nothing I can do. I cant tell her to stop.

When the doctor confirmed it, I pretty much knew the past year or so, but when kindergarten started her ticks have been through the roof. I am attributing it to the stress of being in an integrated environment coming from a self contained class room years before.

We threw her on meds without any questions. It was probably one of the most impulsive decisions I have ever made with her and the top 5 worst mistakes I have ever made as a parent. I put her on meds for me...because the ticks bothered ME. How selfish? I look back and I can not believe I did that to her...The meds made her worse it was like she was an addict coming up and down off of a high. She would sleep during the day and the afternoons, and when she was awake, it was like my Gracie was not even there. "But her ticking was gone." I thought to myself. Yea and so was her personality. Her meltdowns turned into psychotic episodes, a switch was off in her brain, the same switch that made her tick, but also that switch made her a functioning child.

Enough was enough, I waited 3 weeks and weaned her off the TENEX. Her ticks are back, but so is my Gracie. My girl is present, she is back to giving me a run for my money and back to making me laugh and want to pull my hair out at the same time. She is stable.

I feel so ashamed that every time she ticks, my heart drops, and I feel angry. I am so mad...Every tick is a reminder to me, I can not fix her. This is my biggest battle as a special needs parent...there is no band aide or cream or antibiotic to rid her of her ticks. I can't give her a lollipop and tell her to stop. I have to sit and experience it with her.

Last night, I could of slapped myself across the face. She was gulping and gulping over and over, and it was like nails on a chalk board. The madder I get, the sadder I get, because I feel like a monster. She is my baby girl and I should not feel this way. After she went to sleep I had some time to myself to reflect and gather myself.

I made tea and sat and just felt the guilt dripping all over me. I was so guilty...to ever feel this way, but I had to admit it to myself so I could move past it. I needed to break down the wall that was blocking me. The TOURETTES wall. It is OK to feel this way, we are all human. My denial finally faded. It's OK, I said to myself, It is going to be OK. I just was breathing deep...saying it is OK. With each breathe the anger, guilt, denial left me, little by little. My eyes closed and the tears came, but they were tears of healing and happiness...all these months I was held captive by these embarrassing feelings...and now I was finally free.

Her ticking doesn't affect her day...she is learning, she is happy, and she is thriving, she has autism, and Tourette's.

I forget, it is not about me. I constantly have to remind myself. It is about her. Her ticking is apart of her and if she needs to gulp 300 times in a row at the end of the night, I will sit by her and love her and be there for every gulp. I will try to heal the Tourette's for her, but not for me. And for now she is OK. So we have entered the beginning of our next adventure, Tourette's, and we will make it, because we always do. I know I will make it, because I have Grace as my daughter, and the lessons I learn from her every day make me stronger and better.


Strength. Love. Acceptance. Onward. Upward.

Four words that mean more than you'd ever know to me.



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.